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Concerns over sternal discomfort post Heart Transplant

Transplants | Last Active: Jan 27 9:14am | Replies (11)

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@chickytina

Although I am not a heart transplant recipient, I was a double lung transplant recipient (May 4-5, 2022). In case you are not aware, for double lung transplant, they open you like a clam shell (horizontally not vertically like most people think) cutting the sternum in half. As Dana noted, I had severe pain in my rib cage that I thought would never go away. Then around 6 months, the pain eased up. I didn't want to take the strong medications, so after 1 week post surgery I was on Tylenol plus morphine and then just Tylenol by the end of the second week. At first I said that I didn't want any pain killers, but had to give in and they don't even ask when you first get out of surgery any way. I am also a side sleeper. I had to work up the amount of time that I was able to sleep on my side a little more each night until I was finally able to sleep on my sides (one or the other). Now it is no longer an issue. I do still have the head of my bed up on bricks, so that I am not flat due to other issues.
@exhcmposttx please let me know what they are doing about the cramps in your hands. I get cramps in my hands and feet to the point that I am not able to use them and it is very apparent where the cramp is. Sometimes my pointer will get stuck over by my thumb and sometimes it will go the other way and go toward the pinky. My knuckles will go the opposite direction (instead of on top of my hands they will stick out in the palm of my hand. I am not sure if yours is the same (the feet do the same thing). However, they are doing different tests to see what the issue is and what can help.
Due to the meds that I am on, I need to watch my potassium levels. However, one of the doctors that I saw said to try electrolytes. However, most are very high in potassium. My team told me that I can have 1 Gatorade a day though.

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Replies to "Although I am not a heart transplant recipient, I was a double lung transplant recipient (May..."

My cramps are exactly the same. They are sometimes among the most painful things I have ever experienced. I tend to yell out when they are at their worst which freaks out my wife and kids! My hands go on lockdown and have a life of their own almost. I don't get them as often as I did a month ago and now they seem to come on when I'm using my hands a lot, like when playing guitar or typing on my tablet. I keep rwo tennis balls close by when I'm at home and I've narrowed the cause down to the tacrolimus or the Cellcept. I have done three things: 1. My transplant team switched me to Envarsus which is a time-released tacro. That made the tremors a bit more manageable, but they still happen. 2. I take a magnesium supplement. You may already know this but mag is just as important as potassium, and some of the transplant meds cause a deficit in both. 3. I drink a can of diet tonic water sometimes when the cramps come on. It contains quinine which is an old folk remedy for cramps. For me, it's effectiveness is questionable but one of my transplant docs said many liver and kidney recipients swear by it. Like I said, my cramps have lessened but they still happen a few times a week-mainly in my left hand. I would think the first thing would be to check your magnesium. I not sure if Gatorade would contain enough to help a serious deficiency. Anyway, that's my two cents. I hope you find some relief. That was one of the more intense side effects that no one warned me about.