Concerns over sternal discomfort post Heart Transplant

Hi @exhcmposttx, I'm calling in the heart transplant brigade. I think members like @andyp @danab @estrada53 @scottij @glinda @bellini @amynewheart @mlee1969 @chugly11 @nanmargaret @jcwilliams might be able to share their experiences about recovering from heart transplant and tips for sleeping and getting relief.

I'm glad that you talked to your transplant team to rule out any issues. Do you find sleeping in a recliner helpful? Do you find your heart pillow helpful?

@exhcmposttx

Scott Jensen here. Coming up on four years with my new heart on December 30. I am sorry you have some pain post transplant but that said, welcome to the fraternity. Secret handshakes and passwords to follow. I had very little pain that I can remember. I do recall I stayed a bit longer as I my left lung tore when they opened my chest due to scar tissue from a previous heart surgery. It did cause some discomfort in my upper left chest as air from the lung leaked out of the tear and filled the cavity. I did have a big cavity to fill and perhaps the tear was small. the team was surprised that I did not consider it to be too painful. It resolved after an additional six days at Mayo-Phoenix. Of course, your challenge is that you are prohibited from taking most pain meds other than some opioids and those are generally not worth it in my mind. May I ask where you had your transplant?

Best always,
s!

I am a side sleeper and find it nearly impossible to sleep sitting up or on my back. As for the pillow, it was helpful at first but my sternum and upper rib cage seem to get tighter and more restrictive as they heal. I have found that trying to give my body equal time on both sides as I sleep seems to help a little. I just want to know if this is normal and if anyone had stretches or anything like that suggested to them in the course of their recovery.

Hi and Welcome to our very exclusive club. Congradulations and I promise as i was told also life will improve. I myself have had a great life since transplant and any issues seem so long ago now. But anyway, I remember pain when trying to get up and while lying down. I'm 6 years post this January 5th so my memory is not as sharp as I like. But I do remember asking why my rib cage stuck out so much near my neck. I was told it was normal and would flatten out. And as they said it did. I just can't remember when. I know I had a difficult time getting off the pain meds. But was basically told after 6 weeks I should not need them and as strange as it sounds within a week the pain was down to a level that Tylenol was good enough. I do believe I was maybe getting addicted to the pain meds. So I don't remember a spacific pain near the neck just overall chest area. I found the pillow against the chest was very helpful when getting up or lying down. But if your like me I was writing letters to my team often. I like that about Mayo as usually I could get answers right away. I had also a lot of trouble with appetite as food tasted bad particularly solid foods like meat and sandwiches. My poor wife who is an awesome cook was getting frustrated with me not liking some of my favorite foods, Salads also. Pretty much it was mashed potatoes and soft foods. Once the predasone started coming down is when that got better. So sorry I don't have much to offer for you particular pain. Maybe a wedge might help. I found when in the Hospital with a bed I could raise the head are helped with pain and sleeping. It was another thing once I got home I missed for a while. For a positive note things really started to improve at about 6 months when the medication load started dropping.

So if I can help further please ask. Do you mind sharing where you had your transplant? I had mine at Mayo Clinic Phoenix. Keep in touch and have a Blessed Day

Thank you, @danab. My issue is precisely with my ribcage near the neck. I am a side-sleeper, so ESCAPING the hospital bed was a big part of my motivation while in the ICU. The bed pumped air in and out of itself so I was roiling around like I was adrift at sea. I thought the mattress was heated and kept accusing the nurses of lying when they told me it wasn't. I didn't sleep for days. Like with most complaints in my life now, turns out it was the meds! Since my last post I've found that alternating sides throughout the night seems to help a lot. I've had a tremendous problem with tremors and hand cramping also. And I follow you on the food. Horrible! Everything has this awful sweetness to it-even water. After the second week out I successfully weaned myself off of the pain meds, muscle relaxers, etc., with the exception of two 1 mg serotonin to help me sleep. I'm looking forward to the sixth month mark as most heart recipients say this is when things get considerably easier. Regaining my driving privileges next month will be a major milestone for me and my personal chauffeur, or "wife" as I used to call her. Thank you for the insight. As you probably know, it's a little hard to find others to relate to after this experience. People seem to view you as some sort of medical oddity or assume that your problems were over the moment you walked out of the hospital. Far from it! What a bizarre thing to have happen to a person.

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.

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.

Yes I was so looking forward to that first milestone driving again. and You made me chuckle with your personal chauffeur (ie wife) comment. Mine was mine also. especially having to be in the cramped rear seat (air bag front seat not allowed).

I have been on magnesium supplement (6 pills a day) plus i eat walnuts (high in magnesium). From my blood work between the two, my magnesium is ok. Before I started supplementing with the walnuts, my magnesium was low. However, the tennis balls is a good idea to try.

I'm not sure what type of anti-rejection med you are on but I looked up both tacrolimus and mycophenalate when I started having the problem and both drugs listed cramps as a side effect. I hope you find some relief. I know first-hand how awful it feels. I eat walnuts, too. I stopped eating refined sugar because of diabetes from the prednisone and nuts have become my go-to snack.