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I've been so busy with school-related stuff since the beginning of the year that my 9 year heart transplant anniversary slipped up on me. I took some time this morning to go back over the journals I kept prior to, during and after the transplant and again realized just how blessed and fortunate I am.
First of all, I have to thank Tiffany's family for the gift of life. As I rejoice, I'm sure they continue to grieve and miss this special young lady. Even though she had made the decision to be an organ donor as soon as she got her driver's license, the final agreement had to be given by her family to follow her wishes. I do know she donated several organs to others, and I continue to pray that they are doing as well as I.
Then I have to thank all of my family. My immediate family supported me (and continue to do so) from the beginning. From the little things like coming over to clean my house, put out my garbage, help me buy groceries to the bigger things of taking me to doctor appointments and procedures and helping to purchase medication....they have always been there for me. Aunts, Uncles, Cousins....all of them....helped support my family and me in any way they could, and continue to do so.
Next, I have to thank my medical angels who continue to help me stay in such good shape. Dr. E (who you can see on the new St Francis ad) and Dr. T continue to monitor my progress (or lack thereof as was the case in October) and help me keep on a good path. The staff at my pink vacation home have always treated me well during every visit. If I have to be in a hospital, I'm glad it is SFH!
I also have to thank BAPS for their support during these years. Downtown administration allowed me to have shortened days as my health began to weaken. Oliver staff helped in any way they could (and wore paper hearts on the day of my transplant) both before and after. When I moved to Sequoyah, they continued that support as I still had to have procedures done. And now my SIHS family (and future Freshman Academy) continue to be supportive and positive. I work with great people!
Emmaus friends started a prayer chain from the beginning and kept it up for years after the transplant. I still see many of those friends and am always grateful for their prayers and concerns.
Finally, I have to thank some special friends who were there from the beginning and continue to be today. Lisa, Amy, Melenda, Dawn and their families....thanks for being there from the beginning and hanging in there with me now. Love you guys!
I am a realist which to the dismay of many can seem a little harsh at times. Transplant patients average around 20 years if there are no rejection issues or complications from the drugs we take (cancer related mostly). I'm almost halfway through that length of time. I call it "bonus time" because on the day they called about the possibility of the transplant, I was looking at the calendar to see if I could hold out to Spring Break then take the rest of the semester off. I could barely walk into the building and often had to stop twice on the way to the office. I could tell I was getting weaker and weaker each day. From the day of the transplant on, I've felt great and for the most part have done well.
I had many dreams once upon a time....now I've learned to just enjoy each day as it is. I'm grateful every morning I wake up and every day I go to sleep. I have no idea how long I will walk this Earth, but for however long it may be I hope to find good in each day. As Tim McGraw sings, "live like you were dying". That's the best way to honor Tiffany and her gift...do the best you can each day. Thank you, Tiffany...I'll continue to try to do that.
Saturday, February 22, 2014
Monday, December 30, 2013
Reflections on 2013
As the days of 2013 run down, I'm taking a moment to reflect on what has occurred during the year.
As January began, I was mid-way through my new job at the Intermediate level of Counseling as well as continuing with working Night/Virtual school two nights a week. The Spring semester is extremely busy for counselors between enrollment and state testing taking most of the time. Also in January, my docs decided that one of my anti-rejection drugs was putting stress on my kidneys and they decided to make a change back to Cellcept, one of the original ones I was on from the transplant. This meant that I had to go back to having biopsies again to monitor rejection issues.
February to May were taken up with night school, day school responsibilities, and dealing with 3 biopsies and the annual heart cath. All the reports came back with no rejection and levels were adjusted to where the doctors felt comfortable.
By the time I left my job in June, I was tired. Working day and night for two years was stressful, although I loved every minute of it. I had hoped it could prove to any doubters that I could handle an administrative position, but alas, that doesn't seem to be in my future. (I do always find it funny that people I know that ARE administrators often ask me my opinion on things they deal with as if I was an administrator. Oh well.) I spent the summer with my parents doing things for them (like mowing the yard, taking one day trips, etc.) and rested.
August came way too fast, and soon I was back at work. A couple of weeks after returning I started coughing in a persistent manner. Television and doctors had remarked that this summer was one of the worst for allergies, so I thought that was what was going on. I fought through it until mid-September when I finally went to my primary care doctor, who also thought it was allergy related and prescribed medication for that. I went back a second time where I had some xrays and CT scans ran that showed nothing in the sinus area, but the coughing continued.
I knew I had a 6 month appointment with the cardio docs the first days in October, so I delayed calling them. Looking back, that wasn't the best decision. When I went in for the echo, even I could tell there was something wrong. After having about 60 of those over the years, you get to know what things are supposed to sound like, and this didn't sound good. So, when I went in for my appointment the next day, I went in with a packed bag because I had a feeling I'd be staying at my pink vacation home for a day or so.
Sure enough, the cardio guys got really excited when my ejection fraction was at 29%....considered heart failure. Funny thing, that day was the best I had felt since early August! I was put in the hospital and was given a biopsy that day as well as taking some fluids off and high dosages of prednisone. The biopsy showed mild rejection (not as bad as they had feared) and after about 5 days of being in the hospital, I was released to stay home for a week away from germy kids. I also lost about 20 lbs of fluid and about 10 pounds of fat as a result. I did go to the Eagles concert simply because I had been looking forward to it so much and it was probably the last time they would play together in Tulsa. So, I masked up and enjoyed the show.
I came back to work right before Fall Break so I could adjust to everything and slowly get back in the swing of things. I have fantastic co-workers who had covered for me while I was out and felt totally supported by my administration and faculty. I had a biopsy right after I was released that still showed some rejection, so they wanted to do another one three weeks later. It showed one sample with rejection which the doctor felt might have been the result of contamination on the instruments he used.
November was uneventful health wise, but busy with school. We're changing from an Intermediate to a Freshman Academy next year, and all of us in the counseling department were hoping that we could stay together as a group because we work so well together. So, the uncertainty of that was a bit stressful. Also, I finally started getting reduced on prednisone which also meant reduction in Insulin shots. Since I have a medicine-induced diabetes situation, the prednisone raised my sugar levels to where I had to give myself shots when my level was above 140. As the prednisone came down, the frequency of those shots went away.
December came in a rush. Another biopsy was done which showed no rejection, but the docs wanted me to stay on my low level of prednisone and continue with the current medications. I'll have another biopsy and the annual heart cath the first week in March. Oklahoma got hit with a very cold snap with snow and ice, so we were out for 4 days at the worst possible time. But, on a good note, we did find out that all 3 of us would remain at the Freshman Academy as counselors. The last week was sent doing schedule changes for students, placing students in alternative programs, talking with parents, and doing all we could to finalize plans since that busy Spring semester was advancing rapidly. In fact, if we are in our office 7 days total in the month of January I will be surprised!
The holidays were spent with family and I was gifted with much more that I should have been. I am very blessed to have both parents, a supportive brother and sister-in-law, a four legged buddy, and an honorary mother-in-law to spend them with. My mother had a little flair up with her sugar during the holidays and she still isn't feeling well. So, I handled the Christmas Eve dinner then we went to the show and out to eat on Christmas so Robert and Susan could have a quiet day with her family.
This week, I've been dealing with a back issue that has given me some grief. I called one of my counseling buddies who was kind enough to come over and help me put up my Christmas decorations....again, very blessed to have such people in my life! Tomorrow, I plan on getting out and doing a few errands then settling in for a quiet night at home.
I know I'm lucky to have dodged a major problem with the fall medical issues. It could have been so much worse. It was a reminder that you can't take things for granted and to be diligent in doing what is needed to monitor your health. As 2014 comes in, I'll face challenges like flu and exhaustion from all that has to be done, especially in January. But hopefully, we will all get through it and begin the new challenge next Fall rested and ready.
As ever, I'm grateful to still be on this Earth and feel fortunate to have been given this opportunity by Tiffany and her family. If you have never considered being an organ donor, please discuss it with your family and think about becoming one. I wouldn't still be here if Tiffany hadn't made that choice at 16 and discussed it with her family.
Here's hoping that we all have a healthy 2014. May you and yours enjoy the rest of the holidays and each other! Happy New Year!
As January began, I was mid-way through my new job at the Intermediate level of Counseling as well as continuing with working Night/Virtual school two nights a week. The Spring semester is extremely busy for counselors between enrollment and state testing taking most of the time. Also in January, my docs decided that one of my anti-rejection drugs was putting stress on my kidneys and they decided to make a change back to Cellcept, one of the original ones I was on from the transplant. This meant that I had to go back to having biopsies again to monitor rejection issues.
February to May were taken up with night school, day school responsibilities, and dealing with 3 biopsies and the annual heart cath. All the reports came back with no rejection and levels were adjusted to where the doctors felt comfortable.
By the time I left my job in June, I was tired. Working day and night for two years was stressful, although I loved every minute of it. I had hoped it could prove to any doubters that I could handle an administrative position, but alas, that doesn't seem to be in my future. (I do always find it funny that people I know that ARE administrators often ask me my opinion on things they deal with as if I was an administrator. Oh well.) I spent the summer with my parents doing things for them (like mowing the yard, taking one day trips, etc.) and rested.
August came way too fast, and soon I was back at work. A couple of weeks after returning I started coughing in a persistent manner. Television and doctors had remarked that this summer was one of the worst for allergies, so I thought that was what was going on. I fought through it until mid-September when I finally went to my primary care doctor, who also thought it was allergy related and prescribed medication for that. I went back a second time where I had some xrays and CT scans ran that showed nothing in the sinus area, but the coughing continued.
I knew I had a 6 month appointment with the cardio docs the first days in October, so I delayed calling them. Looking back, that wasn't the best decision. When I went in for the echo, even I could tell there was something wrong. After having about 60 of those over the years, you get to know what things are supposed to sound like, and this didn't sound good. So, when I went in for my appointment the next day, I went in with a packed bag because I had a feeling I'd be staying at my pink vacation home for a day or so.
Sure enough, the cardio guys got really excited when my ejection fraction was at 29%....considered heart failure. Funny thing, that day was the best I had felt since early August! I was put in the hospital and was given a biopsy that day as well as taking some fluids off and high dosages of prednisone. The biopsy showed mild rejection (not as bad as they had feared) and after about 5 days of being in the hospital, I was released to stay home for a week away from germy kids. I also lost about 20 lbs of fluid and about 10 pounds of fat as a result. I did go to the Eagles concert simply because I had been looking forward to it so much and it was probably the last time they would play together in Tulsa. So, I masked up and enjoyed the show.
I came back to work right before Fall Break so I could adjust to everything and slowly get back in the swing of things. I have fantastic co-workers who had covered for me while I was out and felt totally supported by my administration and faculty. I had a biopsy right after I was released that still showed some rejection, so they wanted to do another one three weeks later. It showed one sample with rejection which the doctor felt might have been the result of contamination on the instruments he used.
November was uneventful health wise, but busy with school. We're changing from an Intermediate to a Freshman Academy next year, and all of us in the counseling department were hoping that we could stay together as a group because we work so well together. So, the uncertainty of that was a bit stressful. Also, I finally started getting reduced on prednisone which also meant reduction in Insulin shots. Since I have a medicine-induced diabetes situation, the prednisone raised my sugar levels to where I had to give myself shots when my level was above 140. As the prednisone came down, the frequency of those shots went away.
December came in a rush. Another biopsy was done which showed no rejection, but the docs wanted me to stay on my low level of prednisone and continue with the current medications. I'll have another biopsy and the annual heart cath the first week in March. Oklahoma got hit with a very cold snap with snow and ice, so we were out for 4 days at the worst possible time. But, on a good note, we did find out that all 3 of us would remain at the Freshman Academy as counselors. The last week was sent doing schedule changes for students, placing students in alternative programs, talking with parents, and doing all we could to finalize plans since that busy Spring semester was advancing rapidly. In fact, if we are in our office 7 days total in the month of January I will be surprised!
The holidays were spent with family and I was gifted with much more that I should have been. I am very blessed to have both parents, a supportive brother and sister-in-law, a four legged buddy, and an honorary mother-in-law to spend them with. My mother had a little flair up with her sugar during the holidays and she still isn't feeling well. So, I handled the Christmas Eve dinner then we went to the show and out to eat on Christmas so Robert and Susan could have a quiet day with her family.
This week, I've been dealing with a back issue that has given me some grief. I called one of my counseling buddies who was kind enough to come over and help me put up my Christmas decorations....again, very blessed to have such people in my life! Tomorrow, I plan on getting out and doing a few errands then settling in for a quiet night at home.
I know I'm lucky to have dodged a major problem with the fall medical issues. It could have been so much worse. It was a reminder that you can't take things for granted and to be diligent in doing what is needed to monitor your health. As 2014 comes in, I'll face challenges like flu and exhaustion from all that has to be done, especially in January. But hopefully, we will all get through it and begin the new challenge next Fall rested and ready.
As ever, I'm grateful to still be on this Earth and feel fortunate to have been given this opportunity by Tiffany and her family. If you have never considered being an organ donor, please discuss it with your family and think about becoming one. I wouldn't still be here if Tiffany hadn't made that choice at 16 and discussed it with her family.
Here's hoping that we all have a healthy 2014. May you and yours enjoy the rest of the holidays and each other! Happy New Year!
Wednesday, October 9, 2013
A Bump In the Road
Well, my October started out pretty exciting this year. Not exactly how I wanted it to go, but a sober reminder that you can't take anything for granted.
Back in February, the cardio docs wanted to change one of my anti-rejection drugs because of the affect it had on my kidneys....let's face it, I don't need to deal with a kidney transplant! So, after a couple of biopsies where I was on a low dosage of Cellcept, things looked great. Blood work was coming back fine, no rejection issues were being seen, and everyone thought everything was fine. I was finishing school and working at night so naturally I was tired but for the most part, I felt fine.
This summer, I rested. I wasn't as active as I probably should have been and I began to notice a cough in July. Hearing that allergies were very high this year, I was thinking it was just that. Then, after a couple of weeks of being at school I could do nothing but cough. My coworkers took up the mantle and did some of the presentations we were supposed to do because I couldn't talk without breaking out into a coughing fit. I went to my primary care doc who recommended Claritin and a 14 day round of antibiotic. And she noticed that my blood pressure and heart rate was up. I went back 2 weeks later and she decided to change my BP meds after consulting with my cardio docs, but a key bit of information wasn't exchanged....my heart beats had gone up 20 beats/min faster than it should have.
I knew I had a 6 month cardio checkup coming in October so decided to not go ahead and make an appointment earlier, which I probably should have. I also had gotten out of the habit of doing some things that transplant patients need to monitor, like weight, sodium intake, etc. and so I didn't notice that I was putting on extra water weight. My hands and feet don't swell like others, my calfs and arms do. When I noticed that I had put on water weight and I added extra Lasix to help take it off, but it didn't get it all.
I had an echocardiogram on the 30th and since this was something like #35, I could tell that something wasn't quite right about the heart's performance as soon as I heard the test. So, knowing I met with the cardio docs the next morning I went ahead and packed a bag to take just in case. I was right. The echo showed an ejection fraction (the ability of your heart to pump) at 29% which is heart failure....since the transplant mine has run somewhere between 65% and 55%. Naturally, this caused my cardio docs to freak and they put me in the hospital. The ironic thing is that Tuesday was the best I had felt in a month because I decided to stop taking the Claritin and added the extra Lasix.
But, transplant patients have a very delicate chemical balance to follow, and all of this had thrown me off completely. I had a biopsy done that afternoon and a Swan catheter to measure the inside of the heart was added. I was put on large dosages of Lasix and Prednisone to help with the rejection possibilities. Luckily enough, I haven't seem to have done any major damage to the transplanted heart. I'm back up to around 60 pills a day (I will come off of some of them gradually) and now watching my diet a little closer. I go back in a week to get another echo to check the EF (it was 49% at checkout) and check my progress with the cardio docs. I stayed off work this week because of being on high prednisone and around sickly kids at work but am going back next week full time for 2.5 days then will have Fall Break to rest some more. By that time, I'll be on a much lower dosage of prednisone and hopefully off Insulin (this is as a result of the high dosage of Prednisone) and back to oral meds for that. One good side effect is that I'm losing a little weight as well!
This is a great reminder for those of us who get complacent with our health. We need to get active, we need to watch our sodium intake and sugar intake, and we need to be proactive in our health care. If any of the pieces of the puzzle were figured out earlier, we probably could have avoided the hospital stay. I had one other instance of this same type of rejection right after the transplant and bounced back, so everyone is thinking the same will occur this time. It wasn't a major rejection and no tissue damage seems to have been done.
I'm fortunate that my parents were able to be around to help as well as my brother. My parents are getting older and this takes a toll on them, but friends and family also stepped up to check on them for which I will be eternally grateful. Transplant patients often have a life expectancy of around 20 years and I'm approaching year 9. I have always said that these extra years have been bonus time because I was so sick before the transplant. My plan is to be around for a lot more years but I also have to understand that situations like this will not help my situation. I'll just keep plugging along and see what happens and cross all those bridges when I need to. Live in no fear, enjoy each day to the fullest that I can, and go forward with faith. Not a bad way to live!
Back in February, the cardio docs wanted to change one of my anti-rejection drugs because of the affect it had on my kidneys....let's face it, I don't need to deal with a kidney transplant! So, after a couple of biopsies where I was on a low dosage of Cellcept, things looked great. Blood work was coming back fine, no rejection issues were being seen, and everyone thought everything was fine. I was finishing school and working at night so naturally I was tired but for the most part, I felt fine.
This summer, I rested. I wasn't as active as I probably should have been and I began to notice a cough in July. Hearing that allergies were very high this year, I was thinking it was just that. Then, after a couple of weeks of being at school I could do nothing but cough. My coworkers took up the mantle and did some of the presentations we were supposed to do because I couldn't talk without breaking out into a coughing fit. I went to my primary care doc who recommended Claritin and a 14 day round of antibiotic. And she noticed that my blood pressure and heart rate was up. I went back 2 weeks later and she decided to change my BP meds after consulting with my cardio docs, but a key bit of information wasn't exchanged....my heart beats had gone up 20 beats/min faster than it should have.
I knew I had a 6 month cardio checkup coming in October so decided to not go ahead and make an appointment earlier, which I probably should have. I also had gotten out of the habit of doing some things that transplant patients need to monitor, like weight, sodium intake, etc. and so I didn't notice that I was putting on extra water weight. My hands and feet don't swell like others, my calfs and arms do. When I noticed that I had put on water weight and I added extra Lasix to help take it off, but it didn't get it all.
I had an echocardiogram on the 30th and since this was something like #35, I could tell that something wasn't quite right about the heart's performance as soon as I heard the test. So, knowing I met with the cardio docs the next morning I went ahead and packed a bag to take just in case. I was right. The echo showed an ejection fraction (the ability of your heart to pump) at 29% which is heart failure....since the transplant mine has run somewhere between 65% and 55%. Naturally, this caused my cardio docs to freak and they put me in the hospital. The ironic thing is that Tuesday was the best I had felt in a month because I decided to stop taking the Claritin and added the extra Lasix.
But, transplant patients have a very delicate chemical balance to follow, and all of this had thrown me off completely. I had a biopsy done that afternoon and a Swan catheter to measure the inside of the heart was added. I was put on large dosages of Lasix and Prednisone to help with the rejection possibilities. Luckily enough, I haven't seem to have done any major damage to the transplanted heart. I'm back up to around 60 pills a day (I will come off of some of them gradually) and now watching my diet a little closer. I go back in a week to get another echo to check the EF (it was 49% at checkout) and check my progress with the cardio docs. I stayed off work this week because of being on high prednisone and around sickly kids at work but am going back next week full time for 2.5 days then will have Fall Break to rest some more. By that time, I'll be on a much lower dosage of prednisone and hopefully off Insulin (this is as a result of the high dosage of Prednisone) and back to oral meds for that. One good side effect is that I'm losing a little weight as well!
This is a great reminder for those of us who get complacent with our health. We need to get active, we need to watch our sodium intake and sugar intake, and we need to be proactive in our health care. If any of the pieces of the puzzle were figured out earlier, we probably could have avoided the hospital stay. I had one other instance of this same type of rejection right after the transplant and bounced back, so everyone is thinking the same will occur this time. It wasn't a major rejection and no tissue damage seems to have been done.
I'm fortunate that my parents were able to be around to help as well as my brother. My parents are getting older and this takes a toll on them, but friends and family also stepped up to check on them for which I will be eternally grateful. Transplant patients often have a life expectancy of around 20 years and I'm approaching year 9. I have always said that these extra years have been bonus time because I was so sick before the transplant. My plan is to be around for a lot more years but I also have to understand that situations like this will not help my situation. I'll just keep plugging along and see what happens and cross all those bridges when I need to. Live in no fear, enjoy each day to the fullest that I can, and go forward with faith. Not a bad way to live!
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