When I was discharged, I mentioned that they sent me home me 18 medications. It seems like a lot of folks were surprised at this. Before transplant, I took 9 medications every day, some multiple times a day. I thought it would be interesting to share with you what types of medications they have me on.
Anti-rejection (1, 2, 3)
Our immune systems have a set of cells called T-cells, These are made in our bone marrow, and then travel to the thymus. Most of the cell is the same, but it has small proteins on the outside that can recognize and bind to other small protein receptors on cells. There are lots of different of these proteins, in the same way that there are lots of different locks and keys. Our body determines which ones bind to our own cells, or which keys fit perfectly or don't fit at all, and gets rid of those so our immune system does not attack itself. The ones that fit a little bit it allows to develop, as those develop into more specialized immune cells. Once the T-cells bind and recognize something as 'non-self', it then signals other types of immune cells that will attack the invaders. Overall, there are four main types of T-cells. This response is what can cause a fever, and often destroys the invader cells. When you hear about an auto-immune condition, this system is not working right and our immune cells are attacking a part of our own body.
Since my heart is not a perfect match, my T-cells would recognize it as foreign, and that could set off the cascade resulting in rejection. To stop this, there are three main medications. Cellcept and Tacrolimus both suppress the one of the types of T-cells being made so that there are less of them around to notice my heart and signal these downstream effects. I am also on Prednisone, which is a steriod that also decreases the immune system. This decreases a different type of T-cell that would lead to attack and inflammation. If my levels of these are too low, then I could get rejection. The Prednisone I am on a taper for, so I'll slowly take less every month and be off of it (potentialy) by the end of November.
The reason that transplant patients need to basically be in isolation for the first few months after transplant is that we are really immunosuppressed. Over the years, as things go well, they can sometimes decrease amounts, but I can expect to take some anti-rejction meds the rest of my life. We seem to have found a good stable dose thus far.
Anti-Infection (4,5,6)
Since my immune system is so suppressed, it is much easier to get sick. Because of this, they have me on three different medications - one that is an antibiotic to keep me safe against bacterial pneumonia, another that is an antiviral that fights off common viral infections that people are normally exposed to but might not be active (like the one that causes cold sores), and an anti-fungal medication to fight against thrush. These are usually only prescribed for 3-12 months after transplant.
Heart-function medications (7,8,9,10)
I went home on two blood pressure medications, as tranplanted hearts tend to have higher blood pressure. So far we have swapped out one of these for a different one, which seems to be working better. We are still working on the best doses long term. I also take a baby aspirin, and a medication that both lowers cholesterol and helps prevent rejection. These are all most likely long term.
Pain medications (11, 12, 13)
They sent me home with Tylenol, something a bit stronger as a 'just in case', and a medication that helps with nerve pain. So far I am off the Tylenol, and I'm not needing the stronger pain meds anymore. I am not sure how long I stay on the one for nerve pain, but will be asking when we go into clinic this coming week.
Other medicationss (14, 15, 16, 17, 18, 19, 20)
There were some other medications they sent home with me.
- A diuretic to help get rid of the excess water in my body. This helps the heart not have work as hard, and it really brought down my swelling
- A medication that inhibits stomach acid production to decrease gastrointestinal discomfort
- Magnesium, as one of the medications can decrease levels
- Calcium, to help with bones health as I heal
- One to help with sleep and mood, as patients are more prone to depression immediately after tansplant
- One to to help with diarrhea (which luckily I have not needed)
- They also added potassium after my diuretic increased, which caused my potassium levels to go down (but now I'm off that)
Most of these I won't need long term.
So there you have it. Once I get to a year out, it may get closer to the number of medications I used to be on, but for now its all 18 every day (some of them multiple times). I have 5 medications times throughout the day - 9am, when I take 11 of these (total of 19 individual pills/capsules given the available doses and what I need). Then again at 1pm, which is just two pills. I have one pill at 3pm, and then at 5pm I take 4 more medications. Finally, 9pm is my last pill time, and I take another 5 meds, (total of 9 different individual pills/capsules).
Its been interesting learning all these new meds. I was on most of my old ones for 13+ years, so I knew what they were for. Right now, there are only 2 medications that stayed the same, so I have had to learn all the rest. Luckily, only one of the medications tastes really bad, and I'm good at swallowing pills.
So if you are ever looking to reach out to me, its usually pretty safe to do so a little after a medication time, as I will be awake and most likely figuring out what to do next.
BACKGROUND
As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.
In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.
WHY DID WE START THIS BLOG?
Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.
We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.
Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.
Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.
God bless,
Jodie & Peter Elliott
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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