Will He Ever Lose All Those Meds?

in the beginning. about 2/3 the daily meds

When people don't really know about transplant life, they will often ask about Benjamin's meds and therapies and what transplant life is like. Most people have only heard about transplants in the movies, or maybe read an article about it or perhaps a book. Most of these things do not go in to detail about exactly what transplant life is like. One of the things people seem most concerned about is, "Will he lose all of his meds one day?" Short answer: No. He won't. A lot of people are shocked by this. Some I have gone in to detail with, others I just leave it at that.

The truth is, Ben has lost a lot of his meds. He came home on sixteen different meds given approximately every 3 hours around the clock. It was exhausting! Lets see if I can remember everything he came home on. He was on cellcept, Prograf, Magnesium, aspirin, iron, Bactrim, Nystatin, Digoxin, Propanolol, ativan, methadone, Valcyte, Prednisolone, Bumex, and another diuretic that I can't recall at the moment and another drug that I can't recall. It was a lot. We lost methadone and Ativan fairly soon after we left the hospital. I think we lost methadone while we were at Kohl's House and Ativan was a week or so after we got home.

Throughout the months, we have lost more and more meds. We eventually got to the point where we were only giving six meds twice per day. We eventually had to go up to four times per day due to the fact that Ben can't keep his Prograf levels up when he is only at twice a day. Some of those meds we will eventually lose as well. As soon as he has his biopsy done, if everything comes back clean, we will lose Bactrim. There is a possibility that he could go off of magnesium soon as well. He is on a very tiny dose right now. He also may lose his Cytra eventually, once they are able to lower his dose of Prograf. He is on a fairly high dose of iron though, so I don't see him losing that one any time soon.

The big ones he will never come off of are Prograf and Cellcept. Due to being on these drugs, he sometimes needs other drugs as well. For instance, the prograf is known to leech magnesium out of the blood. This is why he is on magnesium. He started off on aroudn 10.5 mL a day and is now down to 2 mL a day. So, it is getting better. I believe the Cellcept or the Prograf also leeches iron out of him, which is why he is on iron supplements. He takes 2 mL twice a day. He started off on 0.5 mL twice a day.

People seem to worry about what all of these medicines can do to his body, especially some people I know that are into natural cures for everything. Well, I tell you, if there was a natural cure out there for his dilated cardiomyopathy that meant he didn't need the heart transplant, I would be all over it! If there had been a natural way to safely keep his heart, that would be awesome! But, there's not. There is no way for a body to accept an organ that is not its own without the use of immunosuppressants. In Ben's lifetime, there may be. Science is always discovering new things. And I have recently read some articles on ways that people can have a donor heart (in the future) without the need for immunosuppressants. Not soon, but maybe eventually. For now, we are just so grateful that he is able to live, and if that means medicine every day, then so be it!

I confess, I worry too, about what these meds are doing to his body. I read Bill Coon's memoirs of his heart transplant life. I know that eventually Benjamin could need a new kidney as well. Or he could get Post-Transplant Lymphatic Disease (PTLD) from being so immunosuppressed. And if you think a heart transplant is scary, well it is, but I think a heart transplant and cancer treatment is terrifying! He could also get Transplant Coronary Artery Disease (TCAD). He could get any number of things from the meds. Not to mention the fact that any illness is so much harder for him to fight off since we are suppressing his immune system. He has had a cold for 21 days now. He was on antibiotics for it, due to the fact that they thought it was turning in to a sinus infection. It still is not going away and we may be lookign at a chest x-ray this week and possibly postponing his biopsy that is scheduled for Friday. But, this is the risk we have to take. There is no other way to prevent rejection. This is also why I am so unwilling to bring Ben around anyone we know is sick or has not had their flu shot, and why I do not like taking him in big crowds during cold and flu season. He just gets so much sicker and for so much longer than everyone else.

So, we go about our days, thankful that he is mostly healthy and has not yet succumbed to any of the illnesses that are possible with the drugs he is on. We keep our appointments with all of his doctors. We give his meds every day, and we hope that in the future, we may see a day where Ben does not have to take any meds and has absolutely no limitations. Maybe one day.