Hey, I am Allie have had my heart transplant for 1 year!!! I have been keeping a blog about my experienced offling for awhile, but reading other Tx patients blogs has really helped me. So I am putting mine out there to help others! Enjoy! By the way, I got the name "Girlfriends guide to heart transplants" from a book pregnancy book Rachael (from the TV show "Friends"), read called, "Girlfriends Guide to Pregnancy".
Friday, June 18, 2010
A spoon full of sugar helps the medicine go down....
So the number 1 question people ask me after they hear I had a heart transplant is how much medicine I take. It is quite a bit...but it could be worst (and actually it is better than my pre-trasplant medication (I had to take A LOT (like 20ish pills a day) of potassium and it really upsets your stomach). I take about 20 pills in the morning, 20 in the evening, and about 10 throughout the day. And yes, I can swallow all of them in one gulp-it is quite the talent because some of them are really big and it totally grosses my mother out. Some of these are prescription medication (like my immunosuppressants) and some are supplements like potassium or magnesium (which may sound like "just a vitamin" (and there is that whole debate over vitamins just being expensive pee and such) but these are very important vitamins. For example: if you don't have enough or you have too much potassium in your body it can effect your heart rate/beats (in fact that is one of the reasons why I spent 3 weeks in the hospital pretransplant (you potassium is supposed to be between 3.7-5.0 and mine was 1.2!) and then I have medications I chose to take like Ambien (Prednisone makes me WIRED).
When I was filling out disability paperwork they wanted me to list every medication and every side effect it had. The disability paperwork is amazing how much there is, but how was I supposed to decipher what medication made me feel what way?
Today my mom was telling me about one of her friends whose son has a pacemaker. After he got the pacemaker he stated getting headaches (the same thing happened to me and the more I research the more I have learned it has happened to others). His mother was asking me what they have tried for the headaches. The biggest thing for me was the side effects. They had tried many medications, most of them didn't work, but even with the ones that did (or did not) I could not stand the side effects.
This is still a problem of mine, I hate the side effects of my medications, but many of them I do not have the choice to take or not-I have to take the. Some days are better than others, but it is still and "up-hill battle". But I have learned to somewhat trick myself and solve this problem. I always have a treat afterwards. Sometimes a little piece of candy, or sometimes I wait until dessert time to take my meds (which can be quite late). I don't think Oprah would like this because I am eating after 7 pm lol, and my doctors would not like it because of the sugar, and my psychology teacher because I am using positive reinforcement with a bad food-but it gets the job done! And I guess the other non-food option would be to buy a Chanel purse every time I had to take my medicine-but I think my father would be out of business pretty quick.
Anyways there are some funny effects of the medications:
1.) Prednison-It finally gave me eyebrows, I never had very much eyebrow hair, but now I feel like Brooke Shields (they look great!)
I get these hot flashes and I joke that I am going through man-o-pause.
Also, Prednisone is a steroid and when you take high doses it can make you really mean or cry a lot. I cried a lot, and was so emotional, it was kind of comical to my family and I freaked out about EVERYTHING. Like someone would mention school and I would start crying that I was not getting to take my finals and I may never be able to-but I never knew why I would not be able to, lol.
2.) Ambien gives me the weirdest dreams/hallucinations. Sometimes I can't remember if something has really happened or if I dreamed it. I have these vivid dreams, and during the day I don't know what is real or not. I wake up in the middle of the night and text people-sometimes it makes not sense at all-like it is not in English and I don't speak any other languages. I have emailed my doctor (how embarrassing). I text people and I don't remember it. I emailed my sister apartment listings in states we don't live in for like 5 room. The day after she got this email she was like: "Thanks for looking for me, and the house is really nice, but I am one person and this is in Kentucky (or wherever)".
My sister calls my transplant experience since October 2009 to now "One big acid trip".
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