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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.
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