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I hate insurance companies. I hate dealing with them, fussing with them, and generally speaking with them. I've been in a battle for about 10 days over the sleeping pills I take. The anti-rejection meds cause me to have restless leg syndrome, and as a result, in order to get more than 3 hours of sleep a night I have to take a sleeping pill. Before I ran out of my script, I called in for my refill and just before Christmas was told that the authorization had ran out and the clinic would need to do something. So, I call the clinic and let them know. They call back and say the insurance company had a 4 page form that they wanted filled out and that it would probably be after Christmas before it all got straightened out. Luckily, I had always taken one out of the bottle from each script and put it back for emergencies like this.
Well, today is the 30th and I'm still in a battle. Clinic called at noon and told me they had faxed the 4 page form, twice, and finally thought they had it straightened out. Suggested I give them a few hours to make sure everything was updated then call the pharmacy. So I did. Pharmacy checked for authorization while I was on the line....still not current. So, I call the insurance company and, after waiting for 15 minutes to speak to a human being, finally got someone. I tried, very calmly, to explain what was going on and said that I felt it was just an error on their part that someone had not updated the computer. Got nowhere. By the end of the conversation I was afraid someone was going to have to take me to the hospital with a heart attack because I was so mad. So, I can only hope that someone comes into the transplant clinic and gets the phone message I left with instructions from the insurance company on how to get this filled. Somehow, I'm thinking it still isn't going to work.
Other than the scripts, I really can't complain about my insurance. I would probably be somewhere in the neighborhood of a million or so in debt without it. But then again, if it wasn't as good as it is I probably wouldn't have been approved for the transplant in the first place. That is one of the considerations for being on the list. I really have stayed out of the conversation about the new health reform but if it would save a life because everybody would have equal opportunity to be saved...well.......would it be so bad?
Wednesday, December 30, 2009
Sunday, December 27, 2009
'08-'09
As I began to feel better, I began to experience life again. When I was in college I used to go two-stepping quite a bit...like nearly every weekend. I hadn't been in quite a while so my friends and I went a couple of times over the summer. It took awhile for it to come back, and I can't do it for long, but felt good to get out again. In fact, it just felt good to do a lot of things...margarita's with my friends, a girl's weekend in Texas (and what happens in Texas stays in Texas!), just getting out there and living life.
In February of '09 I had my last surgical biopsy. Hallelujah! The docs were tired of trying to deal with going in through the valves and I sure was tired of having it done. Now we just do a blood biopsy and bloodwork. I have had to do the esophogus stretch a couple of times and other than it being difficult to get IV's in that has been no problem. I try to be pretty watchful for cancer issues and Lord knows I have enough docs that surely they would catch a problem in time. I feel like my hospital bills paid for the new children's hospital at Saint Francis...surely I could have my own parking place by now.
For the first summer with no doc appointments, we celebrated by my folks and I taking a road trip to Charleston, Savannah, and Myrtle Beach. I LOVED the beach...first time I've really been around one for a while. We met my cousin and his wife and spent about 4 days there. Had to watch about being out in the sun too much...yes, I also have to deal with skin cancer issues...but got a nice tan out of the trip.
Now, as the end of '09 winds down, and my 5 year anniversary comes up, I'm thinking about all those I've seen in the clinic that are no longer here. Some were much older than I, but the average survival length for a heart transplant patient is 15 years. But, I've also known 2 transplant patients that have had to undergo a 2nd transplant, which if you survive the loss of blood is actually much easier than the first transplant. Not that I'd want to do this again, but at least I know there are options. I still haven't been able to meet my donor family although my parents have remained in contact with Tiffani's grandparents. I just can't quite get there and not sure if I ever will.
I feel that my condition has kept me from getting some other job positions both in and out of the district, which I hate. But on the days that I have a hard time getting around I understand why. I'm taking 34 pills a day now, actually one of the lowest of any of the transplant patients. Some of the changes have brought on the need for other meds for my stomach, some have caused weight gain, some are just a pain to take because they have to be timed out just right.
But, I'm alive. I'm not buried 6 feet underground. My goal when I had the transplant was to live long enough to celebrate my parent's 50th anniversary....which happened in September. Now, I want to live long enough to see my friend's children graduate from high school. The youngest is in 2nd grade now so that will give me 10 more years to shoot for, and put me right at that 15 year mark.
But you never know what each day will bring. If it wants to bring a male into my life, I'd happily accept that! But I come with a lot of baggage to deal with so it would have to be someone special. Maybe I should just be grateful for living at this point!
In February of '09 I had my last surgical biopsy. Hallelujah! The docs were tired of trying to deal with going in through the valves and I sure was tired of having it done. Now we just do a blood biopsy and bloodwork. I have had to do the esophogus stretch a couple of times and other than it being difficult to get IV's in that has been no problem. I try to be pretty watchful for cancer issues and Lord knows I have enough docs that surely they would catch a problem in time. I feel like my hospital bills paid for the new children's hospital at Saint Francis...surely I could have my own parking place by now.
For the first summer with no doc appointments, we celebrated by my folks and I taking a road trip to Charleston, Savannah, and Myrtle Beach. I LOVED the beach...first time I've really been around one for a while. We met my cousin and his wife and spent about 4 days there. Had to watch about being out in the sun too much...yes, I also have to deal with skin cancer issues...but got a nice tan out of the trip.
Mom and Dad in Savannah
Now, as the end of '09 winds down, and my 5 year anniversary comes up, I'm thinking about all those I've seen in the clinic that are no longer here. Some were much older than I, but the average survival length for a heart transplant patient is 15 years. But, I've also known 2 transplant patients that have had to undergo a 2nd transplant, which if you survive the loss of blood is actually much easier than the first transplant. Not that I'd want to do this again, but at least I know there are options. I still haven't been able to meet my donor family although my parents have remained in contact with Tiffani's grandparents. I just can't quite get there and not sure if I ever will.
I feel that my condition has kept me from getting some other job positions both in and out of the district, which I hate. But on the days that I have a hard time getting around I understand why. I'm taking 34 pills a day now, actually one of the lowest of any of the transplant patients. Some of the changes have brought on the need for other meds for my stomach, some have caused weight gain, some are just a pain to take because they have to be timed out just right.
But, I'm alive. I'm not buried 6 feet underground. My goal when I had the transplant was to live long enough to celebrate my parent's 50th anniversary....which happened in September. Now, I want to live long enough to see my friend's children graduate from high school. The youngest is in 2nd grade now so that will give me 10 more years to shoot for, and put me right at that 15 year mark.
Me, Mom, Dad, Susan and Robert
But you never know what each day will bring. If it wants to bring a male into my life, I'd happily accept that! But I come with a lot of baggage to deal with so it would have to be someone special. Maybe I should just be grateful for living at this point!
'07 to '08
After my last heart cath I found myself unable to keep any food in my body...it was escaping in any way possible. I found myself getting weaker and weaker. I thought maybe it was CMV again and went to have that checked, but they saw nothing in any of my blood work that showed anything to be concerned about. I had been given Darvocet for pain following the cath, and I noticed that when I quit taking it, I felt better. We finally decided that maybe I had an allergy to it, although I'd had it before the transplant and didn't have any issues. Just one of those strange things.
Texas Motor Speedway
I got to get out of Oklahoma again in April, when Melenda's family took me to a Nascar race in Texas. It was a blast! Again, a fast trip down and back and was a little hard to recoup from, but well worth it. I also had the honor of attending a West Point graduation for Amy's son, Kyle. Watching these young men and women dedicate themselves to serving at a time of war and protecting our rights was an awesome experience.
At the end of the year, I met with an ob/gyn about some issues I was having. Again, typical things related to transplant patients. But, there were some things that showed up on the testing that she was concerned about so I spent the summer getting more test ran and some out patient surgeries. Finally, just as school began to start she decided that I needed to have a hysterectomy because of some possible cancer cells showing. So, once again, I was out for about 8 weeks to recover from that surgery. Luckily, I have supportive people to work with. I also had a new boss...again.
My Uncle Jim, who had been at the hospital for me at nearly every procedure, was diagnosed with cancer. He had been dealing with bladder cancer but this is a very aggressive cancer that had spread to his lungs and brain. He tried chemo one time but his heart, which was not that great either, couldn't handle it. The fall was spent helping him plan a 45th anniversary party for his wife over Labor Day weekend. Then, at the end of October, he passed away. I was asked to speak at the funeral and while I was honored, it was hard to do both emotionally and physically. I finally understood what the docs said about a rush of adrenline and how that affects your heart rate. Not only was I scared of speaking but my heart rate had to be way over what it should have been.
I continued with biopsies and bloodwork. I always felt like a pin cushion and an experiment every time I had to have one of those. My parents were in contact with my donor family quite a bit. I'm glad for the donor family to have some contact with my family but I'm still not ready.
I got to get out of Oklahoma again in April, when Melenda's family took me to a Nascar race in Texas. It was a blast! Again, a fast trip down and back and was a little hard to recoup from, but well worth it. I also had the honor of attending a West Point graduation for Amy's son, Kyle. Watching these young men and women dedicate themselves to serving at a time of war and protecting our rights was an awesome experience.
At the end of the year, I met with an ob/gyn about some issues I was having. Again, typical things related to transplant patients. But, there were some things that showed up on the testing that she was concerned about so I spent the summer getting more test ran and some out patient surgeries. Finally, just as school began to start she decided that I needed to have a hysterectomy because of some possible cancer cells showing. So, once again, I was out for about 8 weeks to recover from that surgery. Luckily, I have supportive people to work with. I also had a new boss...again.
My Uncle Jim, who had been at the hospital for me at nearly every procedure, was diagnosed with cancer. He had been dealing with bladder cancer but this is a very aggressive cancer that had spread to his lungs and brain. He tried chemo one time but his heart, which was not that great either, couldn't handle it. The fall was spent helping him plan a 45th anniversary party for his wife over Labor Day weekend. Then, at the end of October, he passed away. I was asked to speak at the funeral and while I was honored, it was hard to do both emotionally and physically. I finally understood what the docs said about a rush of adrenline and how that affects your heart rate. Not only was I scared of speaking but my heart rate had to be way over what it should have been.
I continued with biopsies and bloodwork. I always felt like a pin cushion and an experiment every time I had to have one of those. My parents were in contact with my donor family quite a bit. I'm glad for the donor family to have some contact with my family but I'm still not ready.
Year Two
The beginning of '05 was more of a concern for my brother than I. He began his chemo for non-Hodgkin's lymphoma as I continued with biopsy and blood work to check for rejection. I continued to work out three times a week with a recumbrant bike and started getting my place back together. My family had taken everything down, scrubbed the walls, cleaned the carpets, etc. to get rid of any bacteria or germs so that when I came home everything was as sterile as possible. Kept that up for the first year, then the docs felt that I had began to develop some antibodies on my own so we could ease up on that.
I continued with changes in medication...around 35 pills a day now. Sometimes I would go back on predinsone. I hate that stuff! Keeps me up till all hours of the day/night, gives you an increase in weight, hair growth in places you don't want it, and that lovely moonface syndrome.
The first anniversary was hard. By this time I knew that the heart was "young" and came from the OKC area. As I celebrated my new "first" birthday, there was a family in OKC that was mourning a death. You can't help but wonder what would have happened if things would have turned out differently. Would my parents be mourning my death? How would I have been remembered? Would they have thought I was a decent person, a reliable friend, a considerate daughter, a supportive sister? Were the family in OKC thinking those same things about their loss? I also thought about all the people that had been there for me during that last year. My parents, brother, and sister-in-law. My friends, and especially my "3 angels" that sent me flowers to celebrate my new "first birthday". I was grateful to be alive but felt guilty that someone else had to die in order for me to live. Yet, that was exactly what Jesus did for all of us. I wondered what I should be doing with my life - was I doing enough to honor the one who gave me this second chance? And all those people who gripped about those minor issues in their life like drama queens....I wanted to shout at them that there were far more important things to worry about.
I had my annual heart cath around the anniversary time. I get tired of all the poking and prodding but it is a small sacrifice to be alive. Dr. Lewis took me off the Valcyte that I was taking to fight the CMV. I took my "3 angels" out to dinner to celebrate and thank them for all the help they'd given me this past year.
In April, the Transplant Clinic let me know that LifeShare had a package for me from the donor family. As I was thinking of all that, Lisa sent me a text message that her son had been in a serious car wreck but luckily wasn't hurt. All I could think of was it could have been so much different and they could have been a family being asked to donate organs. It opened my eyes to what a donor family has to go through. Then, the parent of the young man who died and became a donor right after I had my transplant called and wanted to get together and talk about the people Allen had helped. As I had another biopsy, I found out that a couple of transplant patients that I had been seeing in clinic on a regular basis were having rejection issues and not doing well at all. One had just been diagnosed with lung cancer.
The meds that we take to fight rejection can cause a lot of other issues, one of which is cancer. Since my family has a history of very aggressive cancer it has always been a concern for me. I guess all of this came down hard on my emotions during this time. I met with Allen's mom and talked with her and got the package from my donor family.
My donor was Tiffani Mashore Fleehart from Moore, Ok. She was 20 years old and had been married for 4 months. She was working on a nursing degree and had been a registered donor since she got her driver's license. She excelled in softball and band, traveled to Europe. She was raised by her grandparents because her parents divorced. She was killed in a car wreck. Her husband survived. Apparently, her husband got my first letter but didn't tell Tiffani's family. Once they learned of the letter, they asked him for my information and made contact. They wanted to meet at the LifeShare picnic in OKC. I had thought I'd be able to do that...meet with the family...but when the time came I couldn't. What if I wasn't living the life they felt that she deserved? What if they wanted to replace her with me? Could I live up to their expectations?
One day it just got to be too much, so I stayed home. I didn't feel like dealing with childish issues from students or parents. Had several calls from people at work checking on me and Lisa and Melenda came by. Both told me to just do what I felt like doing in relation to the donor family. I finally decided to not meet with them. I told my parents if they wanted to go or stay in contact they were welcome to do so, but I already feel like I have two people living in this body...the old me and the donor...and I just didn't think I could handle adding more family to this stress. It is probably selfish and stupid, but I've been told it is a reaction that some tranplant patients have.
School finished out with me changing middle schools for the upcoming year. I just felt that staying and dealing with the stress being put on me by the building principal was too much and even though I hated leaving my work friends who had been so supportive, for my health I felt I needed to make the change. The docs at the clinic felt the same way. They filled me in on a couple of other things about my pre-transplant condition also. Apparently my rating was 1.6 from mid-November until transplant time. A rating of 1.5 would have put me in the hospital until the transplant happened. They were also getting ready to tell me to stop working and stay home and were getting ready to move me to a 1A status. I was a 1B but an A status makes your condition become a priority on the list.
I still had not left the Tulsa area at this point, although I'd been given the go-ahead to travel. But between Rob and his recovery (which was going great) and my doc appointments every month there just wasn't much time to go anywhere. I spent a lot of time with friends doing things like going to the movies, lunch, shopping, etc. and continued to work out. My new boss at my new school, Sequoyah MS, was someone I used to teach with. He was entirely different from my previous boss about the doc appointments, etc., and besides, they weren't as frequent. By this time, I had 18 biopsies on my heart and I can't even begin to tell you how many times I'd been stuck for blood work.
Melenda and Lisa had also made moves to different schools, and luckily Dawn got moved to the same site I was at. I missed seeing everyone every day but loved the work at the new site. There was a lot to do, especially since there were only 2 counselors instead of 3. But Sandy was great to work with. The work was labor intensive and it meant long hours, but I felt I was making a difference in kid's lives for the first time in a long time. I continued to have moments where I felt sorry for myself or wondered if I was living up to my donor. I suspect I always will have those moments.
Some of my friends had health issues that fall as well. It gave me a chance to pay them back for being there for me. I also lost an uncle after Thanksgiving. He had always had valve issues and I had just talked him into going to talk to my docs and see if he could be a transplant patient. We had a great talk about that on Thanksgiving morning, then he spent the day with his family. He died a week later. Also lost someone that I was close to in college...drank himself to death. Really was a waste of life but he had made that choice years ago. But funerals are hard for me now...guess I've come to close to having my own.
For Christmas, Robert got me tickets to the OSU bowl game against Alabama in Shreveport. My first trip out of Oklahoma in about 3 years. Tried to get Lisa to join us but she couldn't. So Melenda, her neice Adrainne, Dawn and I took over for a fast trip down and back. Had a blast!
School started back with a major ice storm. I lost power and so did Robert. Amy and Wendell bailed me out and took me in at their house until my electric came back on. I just felt bad when we got back...so much so that Bryan escorted me out of the school and sent me home for a day or two. Finally got rested up. I had been having problems with my stomach. Food would sometimes hang up and I would have to throw it up. I went to a gastro doc who wants to stretch my esophogus. Seems that I have a hernia that sometimes squeezes my esophogus shut. Geez, if it isn't one thing it is another!
Year two anniversary found me getting a call from LifeShare about Allen. They had talked to his mother and LifeShare wanted to run a short article about Allen in their advertisements about organ donation. Annual heart cath was fine...no major issues to be found. Docs say things continue to look great and that I was given the right heart, the perfect heart. I'm just grateful to still be breathing!
I continued with changes in medication...around 35 pills a day now. Sometimes I would go back on predinsone. I hate that stuff! Keeps me up till all hours of the day/night, gives you an increase in weight, hair growth in places you don't want it, and that lovely moonface syndrome.
The first anniversary was hard. By this time I knew that the heart was "young" and came from the OKC area. As I celebrated my new "first" birthday, there was a family in OKC that was mourning a death. You can't help but wonder what would have happened if things would have turned out differently. Would my parents be mourning my death? How would I have been remembered? Would they have thought I was a decent person, a reliable friend, a considerate daughter, a supportive sister? Were the family in OKC thinking those same things about their loss? I also thought about all the people that had been there for me during that last year. My parents, brother, and sister-in-law. My friends, and especially my "3 angels" that sent me flowers to celebrate my new "first birthday". I was grateful to be alive but felt guilty that someone else had to die in order for me to live. Yet, that was exactly what Jesus did for all of us. I wondered what I should be doing with my life - was I doing enough to honor the one who gave me this second chance? And all those people who gripped about those minor issues in their life like drama queens....I wanted to shout at them that there were far more important things to worry about.
I had my annual heart cath around the anniversary time. I get tired of all the poking and prodding but it is a small sacrifice to be alive. Dr. Lewis took me off the Valcyte that I was taking to fight the CMV. I took my "3 angels" out to dinner to celebrate and thank them for all the help they'd given me this past year.
In April, the Transplant Clinic let me know that LifeShare had a package for me from the donor family. As I was thinking of all that, Lisa sent me a text message that her son had been in a serious car wreck but luckily wasn't hurt. All I could think of was it could have been so much different and they could have been a family being asked to donate organs. It opened my eyes to what a donor family has to go through. Then, the parent of the young man who died and became a donor right after I had my transplant called and wanted to get together and talk about the people Allen had helped. As I had another biopsy, I found out that a couple of transplant patients that I had been seeing in clinic on a regular basis were having rejection issues and not doing well at all. One had just been diagnosed with lung cancer.
The meds that we take to fight rejection can cause a lot of other issues, one of which is cancer. Since my family has a history of very aggressive cancer it has always been a concern for me. I guess all of this came down hard on my emotions during this time. I met with Allen's mom and talked with her and got the package from my donor family.
My donor was Tiffani Mashore Fleehart from Moore, Ok. She was 20 years old and had been married for 4 months. She was working on a nursing degree and had been a registered donor since she got her driver's license. She excelled in softball and band, traveled to Europe. She was raised by her grandparents because her parents divorced. She was killed in a car wreck. Her husband survived. Apparently, her husband got my first letter but didn't tell Tiffani's family. Once they learned of the letter, they asked him for my information and made contact. They wanted to meet at the LifeShare picnic in OKC. I had thought I'd be able to do that...meet with the family...but when the time came I couldn't. What if I wasn't living the life they felt that she deserved? What if they wanted to replace her with me? Could I live up to their expectations?
One day it just got to be too much, so I stayed home. I didn't feel like dealing with childish issues from students or parents. Had several calls from people at work checking on me and Lisa and Melenda came by. Both told me to just do what I felt like doing in relation to the donor family. I finally decided to not meet with them. I told my parents if they wanted to go or stay in contact they were welcome to do so, but I already feel like I have two people living in this body...the old me and the donor...and I just didn't think I could handle adding more family to this stress. It is probably selfish and stupid, but I've been told it is a reaction that some tranplant patients have.
School finished out with me changing middle schools for the upcoming year. I just felt that staying and dealing with the stress being put on me by the building principal was too much and even though I hated leaving my work friends who had been so supportive, for my health I felt I needed to make the change. The docs at the clinic felt the same way. They filled me in on a couple of other things about my pre-transplant condition also. Apparently my rating was 1.6 from mid-November until transplant time. A rating of 1.5 would have put me in the hospital until the transplant happened. They were also getting ready to tell me to stop working and stay home and were getting ready to move me to a 1A status. I was a 1B but an A status makes your condition become a priority on the list.
I still had not left the Tulsa area at this point, although I'd been given the go-ahead to travel. But between Rob and his recovery (which was going great) and my doc appointments every month there just wasn't much time to go anywhere. I spent a lot of time with friends doing things like going to the movies, lunch, shopping, etc. and continued to work out. My new boss at my new school, Sequoyah MS, was someone I used to teach with. He was entirely different from my previous boss about the doc appointments, etc., and besides, they weren't as frequent. By this time, I had 18 biopsies on my heart and I can't even begin to tell you how many times I'd been stuck for blood work.
Melenda and Lisa had also made moves to different schools, and luckily Dawn got moved to the same site I was at. I missed seeing everyone every day but loved the work at the new site. There was a lot to do, especially since there were only 2 counselors instead of 3. But Sandy was great to work with. The work was labor intensive and it meant long hours, but I felt I was making a difference in kid's lives for the first time in a long time. I continued to have moments where I felt sorry for myself or wondered if I was living up to my donor. I suspect I always will have those moments.
Some of my friends had health issues that fall as well. It gave me a chance to pay them back for being there for me. I also lost an uncle after Thanksgiving. He had always had valve issues and I had just talked him into going to talk to my docs and see if he could be a transplant patient. We had a great talk about that on Thanksgiving morning, then he spent the day with his family. He died a week later. Also lost someone that I was close to in college...drank himself to death. Really was a waste of life but he had made that choice years ago. But funerals are hard for me now...guess I've come to close to having my own.
For Christmas, Robert got me tickets to the OSU bowl game against Alabama in Shreveport. My first trip out of Oklahoma in about 3 years. Tried to get Lisa to join us but she couldn't. So Melenda, her neice Adrainne, Dawn and I took over for a fast trip down and back. Had a blast!
Melenda, Dawn, Me, and A
School started back with a major ice storm. I lost power and so did Robert. Amy and Wendell bailed me out and took me in at their house until my electric came back on. I just felt bad when we got back...so much so that Bryan escorted me out of the school and sent me home for a day or two. Finally got rested up. I had been having problems with my stomach. Food would sometimes hang up and I would have to throw it up. I went to a gastro doc who wants to stretch my esophogus. Seems that I have a hernia that sometimes squeezes my esophogus shut. Geez, if it isn't one thing it is another!
Year two anniversary found me getting a call from LifeShare about Allen. They had talked to his mother and LifeShare wanted to run a short article about Allen in their advertisements about organ donation. Annual heart cath was fine...no major issues to be found. Docs say things continue to look great and that I was given the right heart, the perfect heart. I'm just grateful to still be breathing!
Thursday, December 24, 2009
Year One
Heart transplant patients have things a little harder than other transplant patients. If we start to reject we can die fast, especially right after a transplant. I had a biopsy before I was ever dismissed from CICU, and I would have one every week for the next 6 weeks. My parents had moved in by this time and took me for all my appointments. Dad walked with me as I began to work my way up the block and back at a very slow pace. Each time I went for a biopsy they had to go into my left arteries because the right subclaven had lodged itself under my collar bone and was not coming out. This was learned the hard way on the trial run. Going on the left presented a whole new set of problems....possible valve damage as they had to go through 2 valves to get to the left ventricle for the biopsy. At six weeks out I started cardiac rehab and was allowed to drive, which meant the folks could finally go home and rest. I would wear my mask and get out in public. I had to wash all my fruits and veggies to keep from getting something from them. (Trust me, you NEVER want to eat anything grown in the ground in Mexico. If you knew what I know you'd feel the same way!) I even ran up to school during lunch one day just to say "hi" to my coworkers. Even though I had to wear a mask out in public the feeling of independence was outstanding!
I was taking 46 pills a day at this point. Anti-rejection drugs, predisone, mineral supplements, blood pressure meds, stuff to help me sleep (restless leg syndrome is a by-product of some of these meds), stuff to help my stomach endure the meds I was taking...it was crazy. The predisone made me cry like a baby at commercials...something that is typically NOT me. Luckily enough, they were tapering me off of it and the hope was that perhaps I would not have to take it at all. My rehab consisted of walking on a treadmill at various levels. I started out small but eventually got up to about 2 miles at a Level 2.5 at a pretty brisk pace. I then added a recumbrant bike and between the two I'd get almost 4 miles of work in three times a week. The biopsies changed to every two weeks then once a month. My neck was ever so grateful!
I returned to work the 22nd of July with hand sanitizer outside my office, and on the 23rd my parents threw a BBQ birthday party for me with family and friends coming. Dawn's 3 year old daughter, Audrey, provided the laugh of the day when she decided to strip down to her underwear and jump in the pool. I asked her if she had her mother's permission.....she lied! But a couple of days later I just didn't feel that great. I started getting nauseous and had a pain in my lower back. I continued at work but a couple of days later I called the clinic and they suggested that I come in and get some blood work done. Turned out that I caught CMV, which is a virus that transplant patients can get. In really serious forms it can cause rejection so I had to go on even more pills to battle that. Bad news was that I also had shingles....and I gave them to my dad when he came over to go to the doctor with me. I couldn't keep food in and really had to fight the CMV. I even had to stay home for a couple of days. Clinic eventually sent me to Dr. Lewis, a disease specialist, who sent my bloodwork to the Mayo clinic for evaluation.
This meant that I had to go back to weekly blood draws (yuck, more needles!) and have biopsies every two weeks to make sure I wasn't rejecting. Luckily, I wasn't. I kept battling this up till Veteran's Day when all of the sudden my white cell count dropped to .8 and everyone at the clinic got all excited...in a bad way. Once again, I was confined to quarters and had to go for daily blood draws. In fact, I had to be given Neulesta to get my white blood cells to start forming. Two shots at $250 each since my insurance wouldn't pay for them. We had to watch and make sure the CMV didn't turn into a resistant CMV and start causing major problems. I finally went back to work right before Thanksgiving but had to wear a mask in the building with the kids.
My brother was diagnosed with non-Hodgkin's lymphoma right before Christmas. Seemed we just couldn't get a break in my family. The holidays were special for the fact that I was there to enjoy them, but we didn't know how Robert's situation was going to work out. He underwent a biopsy where he had some lymph nodes and glands removed around his lower neck and started chemo. We had to watch being around each other because both of us were so imnio-suppressed.
At the anniversary of my transplant I wrote the donor family to thank them for my new year of life. I expressed my appreciation for what they had given me at a time of personal loss and wanted them to know what I had been doing for the past year, but I never got a reply. I just accepted that perhaps it was too painful for them to deal with, and I could understand why. I was also dealing with some issues at school. I had a new principal who seemed to feel that my having to take off to go to doctor appointments was keeping me from doing my job successfully. As the anniversary of my transplant came up I decided to go ahead and put in for a transfer to another job within the district. I couldn't see anything improving where I was at but I sure hated to leave my great support group at school. But, as I had learned, God had a plan and if I was smart enough not to try to stop it, the plan usually worked out!
I was taking 46 pills a day at this point. Anti-rejection drugs, predisone, mineral supplements, blood pressure meds, stuff to help me sleep (restless leg syndrome is a by-product of some of these meds), stuff to help my stomach endure the meds I was taking...it was crazy. The predisone made me cry like a baby at commercials...something that is typically NOT me. Luckily enough, they were tapering me off of it and the hope was that perhaps I would not have to take it at all. My rehab consisted of walking on a treadmill at various levels. I started out small but eventually got up to about 2 miles at a Level 2.5 at a pretty brisk pace. I then added a recumbrant bike and between the two I'd get almost 4 miles of work in three times a week. The biopsies changed to every two weeks then once a month. My neck was ever so grateful!
I returned to work the 22nd of July with hand sanitizer outside my office, and on the 23rd my parents threw a BBQ birthday party for me with family and friends coming. Dawn's 3 year old daughter, Audrey, provided the laugh of the day when she decided to strip down to her underwear and jump in the pool. I asked her if she had her mother's permission.....she lied! But a couple of days later I just didn't feel that great. I started getting nauseous and had a pain in my lower back. I continued at work but a couple of days later I called the clinic and they suggested that I come in and get some blood work done. Turned out that I caught CMV, which is a virus that transplant patients can get. In really serious forms it can cause rejection so I had to go on even more pills to battle that. Bad news was that I also had shingles....and I gave them to my dad when he came over to go to the doctor with me. I couldn't keep food in and really had to fight the CMV. I even had to stay home for a couple of days. Clinic eventually sent me to Dr. Lewis, a disease specialist, who sent my bloodwork to the Mayo clinic for evaluation.
This meant that I had to go back to weekly blood draws (yuck, more needles!) and have biopsies every two weeks to make sure I wasn't rejecting. Luckily, I wasn't. I kept battling this up till Veteran's Day when all of the sudden my white cell count dropped to .8 and everyone at the clinic got all excited...in a bad way. Once again, I was confined to quarters and had to go for daily blood draws. In fact, I had to be given Neulesta to get my white blood cells to start forming. Two shots at $250 each since my insurance wouldn't pay for them. We had to watch and make sure the CMV didn't turn into a resistant CMV and start causing major problems. I finally went back to work right before Thanksgiving but had to wear a mask in the building with the kids.
My brother was diagnosed with non-Hodgkin's lymphoma right before Christmas. Seemed we just couldn't get a break in my family. The holidays were special for the fact that I was there to enjoy them, but we didn't know how Robert's situation was going to work out. He underwent a biopsy where he had some lymph nodes and glands removed around his lower neck and started chemo. We had to watch being around each other because both of us were so imnio-suppressed.
At the anniversary of my transplant I wrote the donor family to thank them for my new year of life. I expressed my appreciation for what they had given me at a time of personal loss and wanted them to know what I had been doing for the past year, but I never got a reply. I just accepted that perhaps it was too painful for them to deal with, and I could understand why. I was also dealing with some issues at school. I had a new principal who seemed to feel that my having to take off to go to doctor appointments was keeping me from doing my job successfully. As the anniversary of my transplant came up I decided to go ahead and put in for a transfer to another job within the district. I couldn't see anything improving where I was at but I sure hated to leave my great support group at school. But, as I had learned, God had a plan and if I was smart enough not to try to stop it, the plan usually worked out!
Year Of The Transplant - Part 2
The old heart. Notice the thickness of the walls.
I returned to work after the "trial run" but just felt tired all the time. The beginning of the year is extremely busy for school counselors and what time I spent at school was filled with various issues. I found myself not having much patience with kids and parents who thought that their current issue was life changing and earth shattering. I found myself resenting being left out of decisions at work although I understood why they had to make plans without me. I took off one day at noon because things were just not going well. I thought I'd treat myself to lunch at my favorite Chinese place (and yes, this was not on the list of foods my docs told me to eat!) and had started out when it began to snow. Just as I was exiting from the Creek turnpike and stopping to wait on traffic....you guessed it, I got rear-ended. No damage was done to my car...how I don't know...but the poor lady who hit me had one banged up grill. I went on to eat, came out to 4" of snow, drove slowly home and crawled under a blanket and crashed. That was my Charlie Brown day...when everything I did seemed like "Good Grief!"
One thing I learned during this time period is that you don't promise something to somebody who is ill and looking forward to it, then back out. It is really disappointing when you are having issues and are looking forward to doing something fun then having the people who you were planning for fun with have to back out. I made myself a promise then and there that I will try my best to never do that to someone. People have their own lives to lead, but a person who may be facing the end of life hangs on to everything, and when plans change it creates a great disappointment for them. Just something to keep in mind if the you are even in that situation.
February brought on a lot of sadness at school. Our school librarian's daughter was murdered in a domestic dispute. Such a beautiful young lady. When I visited with her mother she said she could deal with it if I could have had her daughter's heart. Reality hit me in the face with that. I never thought about this heart coming from someone I might have a connection to. Not sure how I would have handled that. While working on an iMovie for the service, my friend Melenda's husband asked me to sign his donor card for him. He'd been in a minor wreck the week before and he realized that if something bad would have happened he was not a donor, and although he felt that Melenda would donate his organs he wanted to make it official. In fact, several faculty members signed up to be donor's over my circumstance.
The day after the funeral, my cousin died. She had battled cancer for a long time. The biggest issue that developed from that is when the word went out on prayer chains around my parent's house it was assumed that it was I that had died. My Uncle Jim heard it at his local hangout and came to my parents' door in tears because he thought I'd died and nobody had told him. My parents thought it was funny but I made them call the church and straighten them out! I also had to go back and do 5 more vials of blood because this antigen level was a little higher than normal. Lovely. So, in I went to battle the needle for a blood draw.
February 22nd saw me arriving at school very tired. There had been a lot going on and I was getting weaker. As I arrived that morning I counted down the days till Spring Break and wondered if I could make it at school until then. If so, I would just take the rest of the year off. As I was contemplating all this the phone rang...and it was the transplant clinic. A heart had become available in OKC that they felt was a perfect match, but they wanted me to come in for another blood draw so they could make sure the antigen would work.
Now, my perfect plan of getting to the hospital went out the window. My principal was out of the state at the time, one assistant principal was at a meeting for him and the other was in charge of a building of nearly 800 kids. Both counselors were tied up with preparing for the state writing test the next day. Melenda was one of the possibilities for District Teacher of the Year and had to attend a couple of ceremonies for that. Lisa was teaching and nobody was available to cover her. Amy was in the meeting with the principals. My sister in law was on her way to Arkansas. And for the folks to come take me meant at least another hour. So, I took a chance that Robert would be available...and he was. I left school and he met me at my place. We gathered things up and he contacted my parents. We arrived as they were running the normal Tuesday heart clinic. Now, I should explain that they do not like to let everyone know that a transplant may be ready to occur because, although people are very kind and interested, they don't want 30 transplant survivors hanging around the hospital while you are waiting.
Eventually, they took me up to CICU and got me a room, had me change, hooked me up to the various tubes and needles, and we waited. And we waited. And we waited. We waited so long that Alton got back from his trip, Melenda made her evening TOY presentation and came to the hospital, and family came from as far as Joplin. Finally about midnight they said that this was the heart but that they had to wait for other transplant teams to arrive as the family of the donor decided to donate everything they could. But that was the longest night of my life. A severe thunderstorm came up so they couldn't LifeFlight to OKC as they planned. Instead, they had to take an ambulance to OKC, wait on the other teams to finish, then head back. Remember, this is Oklahoma where the weather can change in five minutes from beautiful to similar to the North Pole and rain can go to sleet or snow in a heartbeat. I began to fear that we would not be able to get to OKC to procure the heart and, once again, I would be disappointed. I wasn't sure I would be handle another disappointment. But I didn't have to go through that.
Finally, about 7:30 they came to get me. As we were wheeling our way down to surgery the CICU nurse and the doc's scrub nurse got into a heated argument about where my family and friends were to wait. Now, I'm laying on the gurney after waiting all night long for this to happen trying to yell out, "Who cares? They'll be fine! Get me to surgery!" but my mouth would not move. I don't remember getting to the operating room at all or anything that happened from that point on.
Apparently, they found a place for my family and friends because about 90 minutes later they called them into a separate room and told them that the procedure went great and that I was in outstanding condition. I have heard there were lots of tears and screams of "Yes!" going on.
I woke up in a foggy dream to see that I was back in my room at CICU. I knew at that point that it had gone through because I was back in the room where I started. I don't remember seeing anybody at all on Wednesday but my family was allowed to come back and my dad reported tht my blue eyes were back to the bright blue they used to be.
On Friday most of the tubes and some of the needles had been removed. Note: If you ever have drain tubes in your chest be sure and have the nurse wait to pull them out until the pain medication has taken affect! My family could come back to see me but they had to wash up and put on masks so I wouldn't catch anything from them. By Saturday, they had me sitting up in a chair and eating about whatever I wanted. (This would be allowed only to get my strength up, then the diet would go into affect!) Sunday morning, Melenda came back with my parents and sat in the room with me for about an hour as I sat up in a chair. But that afternoon, I slept most of the day. I tried my best to watch the OSU-KU basketball game that is supposed to be one of the best ever played, but I just couldn't do it. I did wake up in the last minute when the score was only 1 point different and managed not to have a heart attack as I watched the finish! That evening, the nurse got me up and I walked around the CICU for a little bit just to get my feet under me. Was the best feeling I'd had in a long time.
The next morning they moved me to their Cardiac Speciality Care Unit where I had a private room. Again, only a limited amount of people were allowed to come back to see me but I had access to a phone and got several calls from people wishing me well. I had wonderful nurses who took care of me. Brad helped me get up and walk around the floor for the first time. He wanted to do a lap and then see how much more I could do. We talked as we took a slow stroll around and he asked if I could do one more...I replied that I could. When we finished that one I asked if I could do another. Brad said I'd done enough. What he didn't understand was that I had not been able to walk and talk at the same time for over 2 years!
Dr. Whiteneck came to visit in ICU as well. He had to speak at a TU basketball game about organ donation and wondered if I had any ideas to give him. I just said to emphasize that organ donation gave you a second chance at life, and wouldn't that be the ultimate gift to give someone. I later heard that he did speak at the game and mentioned that a counselor from BA had just had a heart transplant. There were several BA education people in the audience who said they were very impressed with the kind Doc!
I went home on the 10th day after my transplant....one of the fastest they had ever had. I would have gone home earlier but my potassium level spiked and they wouldn't let me go until that was under control. Understand, it took less recovery time for a heart transplant then it normally does for open heart surgery. Truly amazing.
I had to come back to the hospital the next day for blood work...something I would continue to deal with for a long time. Cami, who would become my personal phebotomist as we years went by, could not find a place on an arm to get blood. Eventually, she had to go in between my knuckles to get enough to do the tests. While we were there I heard LifeFlight land but didn't think much of it. Then, as we left, I thought I saw my principal's van drive into the hospital and made the remark to my folks that I sure hoped somebody told him I was home now.
But, it wasn't me he was coming to see. One of our students, one who ran errands for me when I needed something done that I needed a truly responsible teen to do, had an anyurism at school. Over the weekend, his parents elected to donate his organs because he had made a remark about how cool it was that someone was able to save my life. Allen O'Brien was a very special young man who went on to help many people even in death.
This truly was the circle of life...from a stranger, to me, to Allen, to more strangers. God, in His infinite wisdom, took something so sad and tragic and made something wonderful. What an amazing God we have!
The Year of the Transplant - part 1
Post transplant with meds behind me
One of the adjustments that I was going to have to make was accepting help from people.....and having my parents move into my 2 bedroom duplex to help with aftercare. Now, let me say this up front, I LOVE my parents. But the idea of the 3 of us living in my 1100 sq ft duplex was daunting, and right off the bat, I experienced my first encounter.
My parents decided that if they were going to have to live with me for 6 weeks, at least, that they needed a queen size bed. Now, I have one queen and one full bed and I offered to move the full into my bedroom and let them sleep on the queen. But no, my mattress wasn't hard enough so they had to get their own. Ok...I can deal with that....but what is going to happen to my antique metal bed frame? Oh, we'll take it to our storage building at home and put it in there. Ummm, that might work, I thought. Only that wasn't what happened. Instead, it wound up in my garage, further cluttering my small parking area. While that doesn't sound like much, at the time, it was. Then, after all this had transpired, the reality of the entire situation hit and I went into a panic attack. Wound up in the fetal position in my bed in tears all night long over what was going to be happening in my life from this point on. Constant medication, constant medical tests, loss of independence. But, what was my option....6 feet underground?
Throw in the fact that every time my cell or regular phone rang I wondered if it was the transplant clinic, it just made me very moody and jumpy. Yes, they would use the pager but, as we found out in our training sessions, they liked to make an attempt at a personal call so they could tell you in a calm manner and relay instructions. So, every day I wondered if this was the day and would feel disappointment when I looked at the caller ID. And if it wasn't that pressure, there were the monthly visit to the clinic for blood work and echo's. I got to the point where I was no longer embarrassed to show my chest to strangers because nearly everyone in the hospital had seen it.
My ejection fraction was around 18% when I was first tested...now it was dropping to below 15%. For most normal people, their EF runs between 50% and 70%. I was running out of energy too, but luckily enough my principal, Alton Royer, and the BAPS district were kind enough to let me work shortened days. I'd come in about 9am and leave about 2pm which still gave me time enough to get some things done at school and deal with kids and parents but I wouldn't have to do morning or afternoon meetings. Walking into the building was enough to wear me out for an hour. I couldn't even finish a bowl of soup at lunch without getting exhausted. I'd come home every afternoon and crash on the couch watching Food Network. Paula Deen would coook and I would dream that I could have the strength to fix the food. In fact, since this whole experience had started I had lost nearly 100 lbs. I needed to lose the weight, just not quite like that! But, even if I did get excited about fixing something to eat, the whole procedure would wear me out and I would not have the strength to even eat.
I also began to have some weird dreams. I'd dream I was in the operating room and could hear the doc say they couldn't do the transplant because the sarcoidous was back. I'd dream I would die. I'd dream I'd find the perfect husband in the hospital (that one I liked!). Luckly enough I had nearly 120 sick days gathered up, so when I was worn out I'd just stay home. My other 2 counselor co-workers, Michelle and Jerry, did a great job of helping out with school stuff. My friends Lisa, Melenda, and Dawn would offer to pick me up and take me home after some of my doc appointments. My other coworkers, both male and female, offered to get groceries for me. I also got a phone call from another transplant survivor, Chuck Stophel, who happened to attend my church. He did something for me that others hadn't been able to do....he made me laugh. He had some of the most hysterical stories of his experience and put them in such a funny format that I found myself relaxing when he would call. Had not personally met him but enjoyed each of his phone call. But I'm a pretty independent person, and accepting all that help was not easy to do. Sometimes I did, most times I did not. There were times when I was trying to put groceries in the car that I wished I had!
Thanksgiving started coming up and the clinic said that, unfortunately, Oklahoma has a high accident rate around the holidays so to be sure and stay within 2 hours of Tulsa (in fact, I had to stay within 2 hours of Tulsa since this began) and carry my pager. My only request was that it didn't happen during the OSU-OU football game! But about this time I could tell that I was getting weaker. I had experiences at clinic where my BP dropped to 85/60 and 84/40. In early December the clinic called and wanted to do another heart cath, which meant getting poked in the groin again. Not exactly one of my favorite things!
I was so depressed over this, and tired so easily, that I decided not to decorate for Christmas. Now, you have to know that I come from a family that decorates like the Griswald's...lights around the outside of the house that an airplane could land, every crook and crannie filled with Santa's, nativity scenes, elves, and snowmen. For me to state this was a big deal. But, my friends Amy, Lisa, and Melenda...known as "the 3 ho's", bought me a small tree and decorated it for my office. I came to work one morning and there, lite up beautifully, was a fully decorated tree. They came in after I left the day before and decorated it, then Jerry turned the lights on when she got in the office that morning. Was a wonderful surprise. That Sunday, some of my Emmaus friends dropped by with gifts and snacks and we laughed and laughed.
I was just getting ready for bed when my phone rang. Judy, one of the transplant nurses, called and said they had a possible heart. I was to go in and they would draw blood and see if it would be a match with the antigen. So, I called Amy to see if they'd take me to the hospital. That was an interesting conversation:
Me: (As husband Wendell answered) Are you ready to take a trip?
Wendell: Sure! Where do you want to go?
Me: To the hospital.
Wendell: Why? Wouldn't you rather....
Me: The have a heart, Wendell. I need to get to the hospital.
Wendell: Oh. OH! Okay, be there shortly. (followed by a click)
I called my brother and told him what was going on. He said he'd call my parents and they'd meet me at the hospital. (He lived closer to the hospital than I did.) I guess he tried to leave without his pants until Susan reminded him he might need them! While I was waiting on Amy and Wendell to arrive, I paid a few bills so they could be mailed if I was in the hospital, then I called Lisa and let her in on the secret. She promised to call Melenda and my coworkers and let them know. Amy walked in about then and asked if I was ready for this...told her I didn't think I had a choice!
We went to the hospital and I just started to dial Judy to let her know we were there when she walked up. She and I went to the 3rd floor ICU while Amy waited for Wendell, who was parking the car, and my folks. I gave my phone to Amy and headed with Judy. That was an odd feeling because the cell phone and the pager had become part of my body.
I was stripped down and put in the bed, got a few ID tags, then they tried to put an IV in. Ha! After 3 attempts Brittany gave up and called an IV tech in. Brittany gave me a quick bath to make sure there were no germies on my skin, then Dr. Morris came in to try to put the subclaven catheter in. After about an hour of trying in every bodily position a bed can possibly be put in, he decided they'd wait until I got down to surgery. When my folks got back to ICU they told me that Alton, Melenda, Lisa, and Amy and Wendell were there as well as my minister, Mark. Each one got a chance to come back. We found out that the heart was local so there wouldn't be much waiting except for the other transplant teams to get into town. Dr. Whitneck, the head of cardio at Saint Francis and a very dear man, came in and introduced himself, explained to all of us what was going to happen, and said he wanted this to be the perfect heart for me. Dr. Spahn, who had interviewed me for the transplant list, was out of town and Dr. Endsley was at a conference. I was putting my faith into someone I'd never met before. But, I instantly took a liking to Dr. Whiteneck.
About 1am, I sent most of my friends home to get some rest because they said it would be about 8am before it would happen. So they all showed back up about 7:00 am. Melenda's mom had to be taken to ER that morning for some non-major issue so she traveled between ER and my room to see how things were going. My Aunt Marilyn and Uncle Jim came over as well. Roy, one of the nurses, said it would be ok for everyone to come on back and be with me before they took me down, so we had about 15 people crammed into my room. Just before they came back they gave me the "good drugs" so I was starting to get pretty loopy. Things moved pretty quick after that...nurses started coming in and getting stuff gathered up. They hooked up a portable heart monitor/defib machine and I remember making the remark that it looked like a tackle box. Melenda said she wanted what I was having if I could make a tackle box out of that contraption!
Soon they said it was time to go and we started down to the surgical floor. I remember waving to everyone as I left them and arriving in the operating room. The table was cold and the nurse asked me if I was ready for this, then they told me to breath and things went dark. My next sensation was feeling the tube down my throat and someone telling me to breathe. I then realized that my hands were in restraints and that I wasn't back in the same CICU room...which meant that the transplant did not go through.
Eventually, the tube came out of the throat and people began to come back to fill me in. The first thing I asked was if the sarcoid kept me from getting the transplant, but that was not the case. As they were getting read to cut me they reviewed the donor heart one last time and noticed some bruising on the back of the heart. They were afraid that something would be wrong with it and opted out of doing the procedure. They had already given me the anti-rejection drugs so that was going to be a bit of a problem. Dr. Whiteneck was very disappointed but, as he said earlier, they wanted this to be a perfect heart and they didn't want to take a chance. The only problem I had after that was that I couldn't wake up. I was so tired and exhausted that the drugs just put me on my back.
My friends were so worried about how I'd react to the news, but I think they were more disappointed than I. Melenda was still in ER with her mother and when they all walked down to tell her they were crying. She thought I didn't survive the transplant! They filled her in then went home to sleep.
I stayed an extra day and they went ahead and did the heart cath. Since I had the anti-rejection drugs in OR I couldn't be out in public too much so I didn't go back to work. There were only 3 days left before Christmas break anyway. When I got home, Melenda's kids called and Grant told me that he bet I'd gotten some good rest at the hospital. To cheer me up my three friends brought Mexican to my house and they related what all had happened while I was back in CICU getting ready. Eventually, I was allowed to go out in public and attended the OMS Christmas party at Alton's. Then, after spending the holidays with the folks, I came back into town and my friends took care to make sure they checked on me.
One thing I learned throughout this whole ordeal is that you need to have great friends in your life, and I do. Through the beginning of this until this very day, I have learned that true friends are one of the greatest things a person can have in their life....and I have many.
In the Beginning - part 2
Thanks to "Grey's Anatomy", one thinks that you just go on to a list for transplants without any problems - wrong. You have to undergo a series of tests to qualify for the list, be rated as to you need, get a pager and get training on what happens after.
My first experience with testing started at 8am on September 1st of 2004. A couple of days earlier I had a TB test and a Candida test for my skin. TB test is to make sure that you don't have any issues with that and the Candida test is to see if your skin has any yeast infections that might keep you from healing properly. On the 1st, I was sent to the lab to draw 19 vials of blood....yes, that is right, 19 vials of blood. Only problem is, I have very small surface veins that didn't give out a lot of blood. They got 9 but not 19. Since I was also going to have a heart cath that day, they decided to wait till then to get the rest. Why they couldn't get them all then, I'm not sure. What the multiple vials of blood did get show was that I had a wierd antigen. Nothing that would keep me from getting the transplant but one more thing that would have to match the donor organ.
Then it was on to get a carotid doppler of my neck. Good news! No blockages to deal with there. Then on to get a heart cath to check for oxygen and ejection fraction measurements. They were going to try to do this through my right subclaven artery, but the "problem child" syndrome came up again. So, after poking me for 35 minutes (and remember, you are awake during this procedure) they decided to go through my groin, which meant that I had to lie flat for about 4 hours after. While lying there, I got a visit from the social worker with the transplant clinic who informed us that without insurance meds would run around $3800 per month but if I had insurance that could be reduced. Thank God I did! I finally got home about 5pm from all the tests and was exhausted. My friend Amy brought dinner by and Rob and Susan came to get the low down.
The next day I met Dr. Spahn, the cardiac surgeon. He and the the other docs on the transplant team had gone over all my records and he was the final hurdle. He asked me some pointed questions about my lifestyle and mental stability, as well as my parents regarding care after the procedure. He wanted me to go back to Dr. Schelbar and get some baseline tests ran on my lungs as it is possible that my lungs may wear out before I get a heart transplant, which would cause me to have to add those to the transplant organs.
A week later I went back to Dr. Schelbar and did the tests. I also thanked him for his quick decision on the first test results because they probably will save my life. He's a very humble man and didn't want to take any credit, but I gave him a hug anyway!
The next day, when I got home from work, I had a message. I had been accepted to go on the transplant list. I was given instructions on how to get my pager, but in case something happened before I got it, they would call my cell phone and ask me to come in. Man, talk about reality hitting you in the face! From this point on my life would never be the same. I would live with a pager that would offer me a second chance at life. Everyone in my family would be on standby. My friends would have to be put on a calling tree and had offered to take me to the hospital 24 hours a day, 7 days a week. I had to stay within 2 hours of Tulsa not only until the transplant but about a year after. The transplant clinic told me that they were averaging a transplant every 6 weeks but that it could take as long as two years. The next day, I picked up my pager and the life of waiting began.
My first experience with testing started at 8am on September 1st of 2004. A couple of days earlier I had a TB test and a Candida test for my skin. TB test is to make sure that you don't have any issues with that and the Candida test is to see if your skin has any yeast infections that might keep you from healing properly. On the 1st, I was sent to the lab to draw 19 vials of blood....yes, that is right, 19 vials of blood. Only problem is, I have very small surface veins that didn't give out a lot of blood. They got 9 but not 19. Since I was also going to have a heart cath that day, they decided to wait till then to get the rest. Why they couldn't get them all then, I'm not sure. What the multiple vials of blood did get show was that I had a wierd antigen. Nothing that would keep me from getting the transplant but one more thing that would have to match the donor organ.
Then it was on to get a carotid doppler of my neck. Good news! No blockages to deal with there. Then on to get a heart cath to check for oxygen and ejection fraction measurements. They were going to try to do this through my right subclaven artery, but the "problem child" syndrome came up again. So, after poking me for 35 minutes (and remember, you are awake during this procedure) they decided to go through my groin, which meant that I had to lie flat for about 4 hours after. While lying there, I got a visit from the social worker with the transplant clinic who informed us that without insurance meds would run around $3800 per month but if I had insurance that could be reduced. Thank God I did! I finally got home about 5pm from all the tests and was exhausted. My friend Amy brought dinner by and Rob and Susan came to get the low down.
The next day I met Dr. Spahn, the cardiac surgeon. He and the the other docs on the transplant team had gone over all my records and he was the final hurdle. He asked me some pointed questions about my lifestyle and mental stability, as well as my parents regarding care after the procedure. He wanted me to go back to Dr. Schelbar and get some baseline tests ran on my lungs as it is possible that my lungs may wear out before I get a heart transplant, which would cause me to have to add those to the transplant organs.
A week later I went back to Dr. Schelbar and did the tests. I also thanked him for his quick decision on the first test results because they probably will save my life. He's a very humble man and didn't want to take any credit, but I gave him a hug anyway!
The next day, when I got home from work, I had a message. I had been accepted to go on the transplant list. I was given instructions on how to get my pager, but in case something happened before I got it, they would call my cell phone and ask me to come in. Man, talk about reality hitting you in the face! From this point on my life would never be the same. I would live with a pager that would offer me a second chance at life. Everyone in my family would be on standby. My friends would have to be put on a calling tree and had offered to take me to the hospital 24 hours a day, 7 days a week. I had to stay within 2 hours of Tulsa not only until the transplant but about a year after. The transplant clinic told me that they were averaging a transplant every 6 weeks but that it could take as long as two years. The next day, I picked up my pager and the life of waiting began.
In the Beginning - part 1
Perhaps it would be best to start out by describing what the last 6 years have been like, as far as the heart is concerned. So, I'll start at the beginning and bring everyone up to date.
It all began on President's Day in 2003. I was trying to move furniture around in my living room...if you're single and you have no significant other to do it for you, this is just something you deal with. But I noticed that when I was trying to move things around, my heart raced and I tired easily. Now, in fairness, I was not in the best physical shape in the world so at first I attributed it to that. But a couple of weeks later, during Spring Break, I developed insominia and found that every time I tried to lay down I would spit up water. I thought I'd developed some type of upper resp infection and went to my primary care doc for help. He thought I had started to develop asthma or something like that and prescribed meds. But after about 2 weeks with no improvement, an appointment was made with a pulmonary doctor. Having a previous bout of sarcoidious in my '20's, I thought this was a reasonable move.
Good thing he did. After some rapid tests, Dr. Schelbar called to tell me my problem was heart related. He set me up with Dr. Endsley and promptly told me that Dr. E was the best heart transplant doc in the state, and would not be surprised if I eventually had to go that route. Talk about a shock to the system! That was the last thing I thought would be going on....I was thinking SARS which was a popular disease at the time. Dr. E is hard to get in, so Schelbar's call got his attention. We set up an appointment for a 3D echo and sent him my previous blood work results. Dr. E is a very straightforward guy, which personally I like. He does not beat around the bush, which to some people come off pretty cold but I don't like people who patronize me....I want the truth and I want it now. Be careful what you wish for!
Dr. E told me that I had cardiomyothopy, which is basically heart failure. He wanted to do a heart cath and heart biopsy to see what we were facing and check to see if my previous experience with the sarcoid or some viral infection could be the cause. He put me on some meds for blood pressure, beta blockers, potassium, and lasix to remove fluid. I promise you, I lost 30 lbs of fluid that weekend. I developed such a respect for pregnant woman and their bladders at that time, let me tell you!
The tests were to be done right before Memorial Day weekend and the day before the end of school. He told me it would be an outpatient surgery and that I could be back to school the next day with no problem. I was prepped and stuck with needles in my arms. Now, understand that I absolutely hate needles and that you are wide awake during this procedure. Bascially, they stick a catheter into you arm (at least they did for this first procedure), run a little grasping thing through your veins to your heart, check your pressures and valves then take a few small pieces of tissue to be tested. Things were going great...we were talking and he was explaining what he was doing. I remember looking up at the clock and noticing it was just before 8am and I started thinking that I'd be home and back at work the next day with no problems. Then, I don't remember a thing but I swear I heard someone say, "uh oh".
Apparently, Dr. E got a little too aggressive with the 3rd or 4th biopsy section and preferated my heart, causing blood and fluid to start leaking into my chest. My blood pressure dropped almost to nothing and he had to work for about 90 minutes to get me stablized. They put in a tamponade and finally got my blood pressure back to where it should be. Now, Dr. E had told my folks that the procedure would take no more than 30 minutes once I left the preop room and when they hadn't heard from him 90 minutes later they were starting to get worried. I've been told that I wouldn't be here if it wasn't for the skills of Dr. E. I was the first of over 3000 of these procedures that he had done for this to happen. When they stablized me, he came out and immediately took responsibility and filled my parents in. He told them that the next 24 to 48 hours would be very critical. In fairness to him, I knew the possible risks going on...it is just unusual for things to happen. It showed how bad my heart was getting.
My parents called my brother Rob and his wife Susan, my co-workers at my school, and some friends at church and the Emmaus organization that I was involved in and asked for prayers. I remember waking up in CICU and trying to get up because, I was going back to work. I had a drainage tube in my chest and the nurses (God Bless Them!) were trying to keep me down in the bed. Eventually, they had to restrain me and give me morphine. I don't remember much else about that day but I've been told I was pretty funny. I apparently had conversations with Rob and Susan about chairs in the closet ( I have no idea where that came from!) and was telling some parent off about how they were raising their kid (now that....I could believe!). In the meantime, I've been told that the waiting room of CICU was filled with coworkers and family (part of the problem of being the child of a parent with 8 siblings and a parent of 2 living siblings, all of who have LOTS of kids!). I started to come out of it in the early evening, and one of my best friends, Lisa, managed to get back to see me for a little bit. I knew whatever was going on was serious because she grabbed my hand and held on tight....really unusual for her to do but as a future reference, very comforting to someone who doesn't know what is really going on. (I hope you never have anyone in that situation but if you do, don't be afraid to hold their hand!)
Later than night, Dr. E told my folks he was concerned that I had started leaking blood again and wanted to go back and repeat the cath procedure to make sure. This time, they had put in a central line in my subclavean and he could go in through it with a camera to check things out. I heard he actually ran down to the CICU waiting room to tell my folks that things were ok and there was no leakage. They decided that I needed to eat something so I tried some red jello (this will be important soon) and my parents and brother started coming back more often and I began to be more responsive. My minister and my cousin came back to pray over me as well. About 9pm, Rob and Susan brought another friend, Amy, back to visit then Susan went back and let my mother come back. I was talking away with them then I started feeling queasy, and all of the sudden I told Rob to grab a trash can. But, he wasn't fast enough. Now, what you need to know right now is that my brother and I have a bad gag reflex...if anyone loses their lunch we're right there with them. And I did....all over his shirt....red jello.....that looked like blood. Amy left in a hurry (I've never let her forget that), mom was yelling for a nurse, and poor Rob was still trying to get me the trash can while dealing with a chest full of red jello. The nurse came running in and remembered that she had just fed me the jello and started yelling, "It's jello, not blood! It's jello, not blood!" and things began to calm down.
They all went home after that to clean up and rest, and I slept for a bit. But my blood pressure kept dropping through the night and I was visited by a couple of docs who were on call and worked with Dr. E in his practice. At one point, the night nurse became really concerned and asked me if I wanted her to call my folks. Knowing how stressed they were, I asked her not to unless I started to code...which did come close to happening. I started to pray to God that if it was His will that I leave this world, to go ahead and take me. But, and I will swear to this till my dying day (although I've not told many about it) I distinctly heard a voice tell me, "It's not your time to go, My Child. You still have things to do." And suddenly a feeling of peace just came over me and I finally began to sleep. My vitals began to stablize and things began to improve.
Since I obviously couldn't go back to work, some of my coworkers began to come up and check on me. I was still a little out of it but I was improving. Dr. E came in to check on me and apologized for what had happened, but I told him I was always the kid who had trouble with every medical issue I had ever dealt with. He referred to me as his "problem child"....a name that still is in use! About noon on Saturday, they took me from CICU and moved me to the cardiac floor, which allowed more family and friends to come by. Now, on the Sunday of Memorial Day our family decorates graves and has a big BBQ at our house, and I really wanted to be there but knew that I would probably not. Amy offered to come and sit that morning so my folks could continue with those plans but about 10 am, here they walked in. And about 30 minutes later, in walked Dr. E. who said, "For someone who I tried my best to kill you look pretty good". He released me to go home and to only work half days for the next 10 days then to rest all summer. We made appointments for him to check on me the next week. Needless to say, I appreciated the gathering with my friends and family (although I didn't go to the cemetary....that was just a little too much to deal with!).
On Tuesday, Amy's daughter Katie drove me up to school so I could say goodbye to the staff and thank them for all their concern from this "procedure that became an ordeal". I moved pretty slow but was grateful to be there with them. For the next 3 days I stayed home then came in to work on half days the next week, although I did very little. But it was great to begin to get back into a normal routine.
My summer was spent gathering strength, adjusting to new meds (Coreg was added), and an occassional trip to Branson when I felt like it. I went back to work in late July and continued to see Dr. E on regular checkups and regular echo's. In November of 2003, I underwent a series of tests to see if there was some improvement....there wasn't. It was at this point that Dr. E began to talk about the possibility of heart transplant. Still in a state of denial, I just new that drugs were going to be my saving grace.
In March of 2004, Dr. E wanted me to have an internal difibulator inserted in my chest. His fear was that my heart was weakening so much that if I had a heart attack I would die before I could get any help. Now, to do this you have a small incision on the left side of your chest and this 2 inch by 2 inch metal object is inserted under your skin. Wires are sent to your heart and your heart is stopped to make sure the difibulator works.........yes, the heart that the doc is not sure will start if you have a heart attack will have to be stopped to make sure it will work if this thing kicks in. A very scary thought!
Once again, family gathered at St. Francis (we're beginning to know the hospital inside and out by this time) and they do the procedure. Again, you're awake during this thing talking to the nurse (who gives me some dirt on Dr. E) about how you are the "problem child" and that things that normally don't happen to others seem to happen to you. Luckily enough, there were no problems with the surgery and all went well. What didn't go well was that fact that I was in a room with a nut case (that got changed shortly) and that when I was supposed to be dismissed by noon the next day and was still there at nearly 6pm, I got just a tad upset with the poor nursing staff. Anger management was not something that worked well with the meds I was on!
In May, Dr. E told me that the medication was not working as he hoped and it was time to start talking about going on the transplant list. I had some concerns, primarily taking a heart that some child could use more than I since I had lived a decent life. I asked if we could wait till August to give me some time to think about it, and Dr. E agreed. He also gave me the name of a patient of his that lived in Stillwater and asked me to contact her and visit about the transplant process. She had her transplant about 7 years ago and had actually had to live in the hospital for a while before. We met Deb over my birthday weekend in July and she explained her experience and success and put both my folks and I at ease. One of the best things she said was that God would choose the heart that would be right for me, just as He would choose the heart that every person in my situation would need and that I should not feel guilty about any of it. In August, I told Dr. E that I was ready to go on the list.
It all began on President's Day in 2003. I was trying to move furniture around in my living room...if you're single and you have no significant other to do it for you, this is just something you deal with. But I noticed that when I was trying to move things around, my heart raced and I tired easily. Now, in fairness, I was not in the best physical shape in the world so at first I attributed it to that. But a couple of weeks later, during Spring Break, I developed insominia and found that every time I tried to lay down I would spit up water. I thought I'd developed some type of upper resp infection and went to my primary care doc for help. He thought I had started to develop asthma or something like that and prescribed meds. But after about 2 weeks with no improvement, an appointment was made with a pulmonary doctor. Having a previous bout of sarcoidious in my '20's, I thought this was a reasonable move.
Good thing he did. After some rapid tests, Dr. Schelbar called to tell me my problem was heart related. He set me up with Dr. Endsley and promptly told me that Dr. E was the best heart transplant doc in the state, and would not be surprised if I eventually had to go that route. Talk about a shock to the system! That was the last thing I thought would be going on....I was thinking SARS which was a popular disease at the time. Dr. E is hard to get in, so Schelbar's call got his attention. We set up an appointment for a 3D echo and sent him my previous blood work results. Dr. E is a very straightforward guy, which personally I like. He does not beat around the bush, which to some people come off pretty cold but I don't like people who patronize me....I want the truth and I want it now. Be careful what you wish for!
Dr. E told me that I had cardiomyothopy, which is basically heart failure. He wanted to do a heart cath and heart biopsy to see what we were facing and check to see if my previous experience with the sarcoid or some viral infection could be the cause. He put me on some meds for blood pressure, beta blockers, potassium, and lasix to remove fluid. I promise you, I lost 30 lbs of fluid that weekend. I developed such a respect for pregnant woman and their bladders at that time, let me tell you!
The tests were to be done right before Memorial Day weekend and the day before the end of school. He told me it would be an outpatient surgery and that I could be back to school the next day with no problem. I was prepped and stuck with needles in my arms. Now, understand that I absolutely hate needles and that you are wide awake during this procedure. Bascially, they stick a catheter into you arm (at least they did for this first procedure), run a little grasping thing through your veins to your heart, check your pressures and valves then take a few small pieces of tissue to be tested. Things were going great...we were talking and he was explaining what he was doing. I remember looking up at the clock and noticing it was just before 8am and I started thinking that I'd be home and back at work the next day with no problems. Then, I don't remember a thing but I swear I heard someone say, "uh oh".
Apparently, Dr. E got a little too aggressive with the 3rd or 4th biopsy section and preferated my heart, causing blood and fluid to start leaking into my chest. My blood pressure dropped almost to nothing and he had to work for about 90 minutes to get me stablized. They put in a tamponade and finally got my blood pressure back to where it should be. Now, Dr. E had told my folks that the procedure would take no more than 30 minutes once I left the preop room and when they hadn't heard from him 90 minutes later they were starting to get worried. I've been told that I wouldn't be here if it wasn't for the skills of Dr. E. I was the first of over 3000 of these procedures that he had done for this to happen. When they stablized me, he came out and immediately took responsibility and filled my parents in. He told them that the next 24 to 48 hours would be very critical. In fairness to him, I knew the possible risks going on...it is just unusual for things to happen. It showed how bad my heart was getting.
My parents called my brother Rob and his wife Susan, my co-workers at my school, and some friends at church and the Emmaus organization that I was involved in and asked for prayers. I remember waking up in CICU and trying to get up because, I was going back to work. I had a drainage tube in my chest and the nurses (God Bless Them!) were trying to keep me down in the bed. Eventually, they had to restrain me and give me morphine. I don't remember much else about that day but I've been told I was pretty funny. I apparently had conversations with Rob and Susan about chairs in the closet ( I have no idea where that came from!) and was telling some parent off about how they were raising their kid (now that....I could believe!). In the meantime, I've been told that the waiting room of CICU was filled with coworkers and family (part of the problem of being the child of a parent with 8 siblings and a parent of 2 living siblings, all of who have LOTS of kids!). I started to come out of it in the early evening, and one of my best friends, Lisa, managed to get back to see me for a little bit. I knew whatever was going on was serious because she grabbed my hand and held on tight....really unusual for her to do but as a future reference, very comforting to someone who doesn't know what is really going on. (I hope you never have anyone in that situation but if you do, don't be afraid to hold their hand!)
Later than night, Dr. E told my folks he was concerned that I had started leaking blood again and wanted to go back and repeat the cath procedure to make sure. This time, they had put in a central line in my subclavean and he could go in through it with a camera to check things out. I heard he actually ran down to the CICU waiting room to tell my folks that things were ok and there was no leakage. They decided that I needed to eat something so I tried some red jello (this will be important soon) and my parents and brother started coming back more often and I began to be more responsive. My minister and my cousin came back to pray over me as well. About 9pm, Rob and Susan brought another friend, Amy, back to visit then Susan went back and let my mother come back. I was talking away with them then I started feeling queasy, and all of the sudden I told Rob to grab a trash can. But, he wasn't fast enough. Now, what you need to know right now is that my brother and I have a bad gag reflex...if anyone loses their lunch we're right there with them. And I did....all over his shirt....red jello.....that looked like blood. Amy left in a hurry (I've never let her forget that), mom was yelling for a nurse, and poor Rob was still trying to get me the trash can while dealing with a chest full of red jello. The nurse came running in and remembered that she had just fed me the jello and started yelling, "It's jello, not blood! It's jello, not blood!" and things began to calm down.
They all went home after that to clean up and rest, and I slept for a bit. But my blood pressure kept dropping through the night and I was visited by a couple of docs who were on call and worked with Dr. E in his practice. At one point, the night nurse became really concerned and asked me if I wanted her to call my folks. Knowing how stressed they were, I asked her not to unless I started to code...which did come close to happening. I started to pray to God that if it was His will that I leave this world, to go ahead and take me. But, and I will swear to this till my dying day (although I've not told many about it) I distinctly heard a voice tell me, "It's not your time to go, My Child. You still have things to do." And suddenly a feeling of peace just came over me and I finally began to sleep. My vitals began to stablize and things began to improve.
Since I obviously couldn't go back to work, some of my coworkers began to come up and check on me. I was still a little out of it but I was improving. Dr. E came in to check on me and apologized for what had happened, but I told him I was always the kid who had trouble with every medical issue I had ever dealt with. He referred to me as his "problem child"....a name that still is in use! About noon on Saturday, they took me from CICU and moved me to the cardiac floor, which allowed more family and friends to come by. Now, on the Sunday of Memorial Day our family decorates graves and has a big BBQ at our house, and I really wanted to be there but knew that I would probably not. Amy offered to come and sit that morning so my folks could continue with those plans but about 10 am, here they walked in. And about 30 minutes later, in walked Dr. E. who said, "For someone who I tried my best to kill you look pretty good". He released me to go home and to only work half days for the next 10 days then to rest all summer. We made appointments for him to check on me the next week. Needless to say, I appreciated the gathering with my friends and family (although I didn't go to the cemetary....that was just a little too much to deal with!).
On Tuesday, Amy's daughter Katie drove me up to school so I could say goodbye to the staff and thank them for all their concern from this "procedure that became an ordeal". I moved pretty slow but was grateful to be there with them. For the next 3 days I stayed home then came in to work on half days the next week, although I did very little. But it was great to begin to get back into a normal routine.
My summer was spent gathering strength, adjusting to new meds (Coreg was added), and an occassional trip to Branson when I felt like it. I went back to work in late July and continued to see Dr. E on regular checkups and regular echo's. In November of 2003, I underwent a series of tests to see if there was some improvement....there wasn't. It was at this point that Dr. E began to talk about the possibility of heart transplant. Still in a state of denial, I just new that drugs were going to be my saving grace.
In March of 2004, Dr. E wanted me to have an internal difibulator inserted in my chest. His fear was that my heart was weakening so much that if I had a heart attack I would die before I could get any help. Now, to do this you have a small incision on the left side of your chest and this 2 inch by 2 inch metal object is inserted under your skin. Wires are sent to your heart and your heart is stopped to make sure the difibulator works.........yes, the heart that the doc is not sure will start if you have a heart attack will have to be stopped to make sure it will work if this thing kicks in. A very scary thought!
Once again, family gathered at St. Francis (we're beginning to know the hospital inside and out by this time) and they do the procedure. Again, you're awake during this thing talking to the nurse (who gives me some dirt on Dr. E) about how you are the "problem child" and that things that normally don't happen to others seem to happen to you. Luckily enough, there were no problems with the surgery and all went well. What didn't go well was that fact that I was in a room with a nut case (that got changed shortly) and that when I was supposed to be dismissed by noon the next day and was still there at nearly 6pm, I got just a tad upset with the poor nursing staff. Anger management was not something that worked well with the meds I was on!
In May, Dr. E told me that the medication was not working as he hoped and it was time to start talking about going on the transplant list. I had some concerns, primarily taking a heart that some child could use more than I since I had lived a decent life. I asked if we could wait till August to give me some time to think about it, and Dr. E agreed. He also gave me the name of a patient of his that lived in Stillwater and asked me to contact her and visit about the transplant process. She had her transplant about 7 years ago and had actually had to live in the hospital for a while before. We met Deb over my birthday weekend in July and she explained her experience and success and put both my folks and I at ease. One of the best things she said was that God would choose the heart that would be right for me, just as He would choose the heart that every person in my situation would need and that I should not feel guilty about any of it. In August, I told Dr. E that I was ready to go on the list.
Wednesday, December 23, 2009
Heart 131
Rachel has provided me the encouragement for writing this. Her "Following In My Shoes" blog has given me hours of laughs and tears as she has put herself out there for others to be encouraged by. So, I've decided to give this a try as well. Not sure I'll be as funny or interesting as Rachel, but we shall see!
So, where did the title come from? My heart....my second heart. I am St. Francis Transplant Clinic Heart #131......almost 5 years out. When people ask me how old I am, I always reply, "which body part are we talking about?" because this heart is currently 25 and I'm almost double that. The doctors have no idea what caused my heart to start to fail. I went from feeling pretty good to not being able to sleep at all to suddenly gaining lots of water on my lungs. After multiple trips to my PCP (primary care physician), I eventually was sent to a pulmonary specialist who immediately figured out it wasn't related to the lungs and put me in touch with Dr. Doug Endsley and warned me that there was a good chance I would be looking at a heart transplant.
After 13 months of trying multiple medications, I was brought in to have a routine heart biopsy and heart cath ran....only it wasn't routine. A hole was punched in my very stiff heart and for a while, it was a very interesting situation. This "procedure that became the ordeal" (as family and friends refer to it) scared all of us, including the doc. I spent that summer trying to get over the whole ordeal and preparing to go back to school for my counseling position. Another year of tests and changes in medication showed that I was not improving, so in the Fall of 2004 I joined the heart transplant list.
Fortunately (for me....not for others), Oklahoma is a wealth of donors. Apparently, we have a bunch of gunshot and car wreck victims in this state who have been kind enough to sign up as organ donors. Three short months of being on the list got me my page....the trial run...that did not work out. Two months later it was becoming obvious that a transplant was going to have to happen or I was going to be staying a while in the hospital, then suddenly, after arriving at work (yes, I continued to work up to this point) the call came. This heart worked out and I underwent the procedure. Eight days later, I came out with a new heart and a new lease on life.
As this blog continues you'll learn more about how all this worked out, what the experience has taught the "big 3" - my family, my friends, and me - and how I now live. Tim McGraw had it right folks...Live like you are dying. It is a lot more fun!
So, where did the title come from? My heart....my second heart. I am St. Francis Transplant Clinic Heart #131......almost 5 years out. When people ask me how old I am, I always reply, "which body part are we talking about?" because this heart is currently 25 and I'm almost double that. The doctors have no idea what caused my heart to start to fail. I went from feeling pretty good to not being able to sleep at all to suddenly gaining lots of water on my lungs. After multiple trips to my PCP (primary care physician), I eventually was sent to a pulmonary specialist who immediately figured out it wasn't related to the lungs and put me in touch with Dr. Doug Endsley and warned me that there was a good chance I would be looking at a heart transplant.
After 13 months of trying multiple medications, I was brought in to have a routine heart biopsy and heart cath ran....only it wasn't routine. A hole was punched in my very stiff heart and for a while, it was a very interesting situation. This "procedure that became the ordeal" (as family and friends refer to it) scared all of us, including the doc. I spent that summer trying to get over the whole ordeal and preparing to go back to school for my counseling position. Another year of tests and changes in medication showed that I was not improving, so in the Fall of 2004 I joined the heart transplant list.
Fortunately (for me....not for others), Oklahoma is a wealth of donors. Apparently, we have a bunch of gunshot and car wreck victims in this state who have been kind enough to sign up as organ donors. Three short months of being on the list got me my page....the trial run...that did not work out. Two months later it was becoming obvious that a transplant was going to have to happen or I was going to be staying a while in the hospital, then suddenly, after arriving at work (yes, I continued to work up to this point) the call came. This heart worked out and I underwent the procedure. Eight days later, I came out with a new heart and a new lease on life.
As this blog continues you'll learn more about how all this worked out, what the experience has taught the "big 3" - my family, my friends, and me - and how I now live. Tim McGraw had it right folks...Live like you are dying. It is a lot more fun!
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