Pills, Pills, and More Pills

The last time I wrote, it was a day before my three month baseline appointment. Everything went great during that appointment - the biopsy showed no rejection (!) and the doctors showed us the images from that cath compared to caths done on my previous heart where the arteries were closing off - the difference is astounding. From there, they planned to start a new medication, increase another, and would decrease the prednisone at my next clinic appointment.

So, that has been the major thing I've been working with lately. So many medication changes, which then all require multiple blood draws to check and re-check levels. The day of the cath, my magnesium level was low so they added to that and started Rapamune - another anti-rejection medication. I had a blood draw a week later and the Rapamune was low, so they increased it, and then had another blood draw this week - still low, so they increased it again and want to check it next week. But this week, the magnesium was too high, so they decreased that again. Phew! It's quite the task to keep track of all of them. Definitely a balancing act.

However, since I had no rejection at the last biopsy, they came down again on the prednisone. I came home from the hospital on 40 mg every day, and am now down to 12.5 mg per day. I can't wait to be off of it completely - saying it is a nasty drug with awful side effects is still an understatement - but hey, every little bit helps. Also, since they started the Rapamune, they have decided to completely stop another medication called Myfortic. I was taking EIGHT of those per day, so that significantly decreased my morning and evening piles! ;) Crazy to think that I came home from the hospital on 44 pills per day, plus a central line requiring IV medication three times a day, plus two different insulin regimens, plus pain medicine. FOURTY-FOUR. Hard to wrap my brain around the fact that that was not even four months ago! I am currently down to 26 pills per day, don't have the central line anymore, still on the insulin, and rarely (if ever) take any pain medicine. It's almost been cut in half!

Anyways, other than all the medications that each have their lovely array of side effects and still dealing with the steroid-induced diabetes, I am doing great! Feeling great and trying to do as much as I possibly can. I am still going to cardiac rehab, and plan to do a 5K with the rehab team in a couple weeks! I am looking forward to that. I will continue to have blood draws almost weekly to make sure everything is at the right levels, and have another biopsy in two weeks. Praying for continued progress! :)

Cath & Biopsy on the Horizon...

Hi everyone! It's been a while since I've written anything on here and thought I should give you all an update. For the most part, I have been feeling great! I continue to get stronger each day and am recovering well. Heart wise, I feel so good and full of energy - and have NO chest pain. The only pain I still have is from the incision, and they've said that it will heal painfully slow because of the amount of steroids I am still on. It is amazing the difference in the way that I feel now compared to before my transplant. At one of my recent appointments, one of my doctors showed me a picture of my old heart and the arteries that were closing in it. At every heart catheterization (a procedure where they check blood flow in your coronary arteries and the function of different parts of the heart) I was always told that they were narrowing and closing off - but at a slow and steady rate, and that I had over 50% still left. It was clear that the ends were completely closing or already closed off, and that is why I was experiencing so much chest pain before this second transplant; but I was always told the middle of the arteries still looked okay.

One of my doctors showed me the pictures that they took after they took out the old heart. Come to find out, one of my main arteries had less than 5% of an opening left. They weren't able to see this in any of my procedures because they weren't able to see a 3-dimensional picture. It is so scary to think that that artery could have completely closed at any time. It is truly another testament of how incredible it is that I received my gift so quickly - God knew that my time was running short without getting another heart. I know I've said it here before, but my doctors had warned me to be prepared to wait a year and a half; possibly even two years before there would be a match. Knowing what I know now, we all know I wouldn't have lived that long. Absolutely a miracle and an answer to so many prayers! I am certain I have a few guardian angels watching over me. :)

I have my three-month baseline tests tomorrow morning, bright and early. This will include a right and left heart catheterization, a biopsy to check for rejection, an angiogram, chest x-ray, echocardiogram, and blood work. I can't believe it has already been three months since my second transplant! Time has flown by. These tests will give them a good picture of how my heart looks now, so they can keep a close eye on things to try to prevent CAV from developing again in this heart. I'm not looking forward to tomorrow, as they will go through my groin; which is very painful for at least a few days afterwards. But, I am so grateful to be doing as well as I am, and I keep telling myself that these follow up procedures and tests definitely beat the alternative! I am here! As always, your prayers are so appreciated, and Curtis and I will keep everyone updated!