pain and muscle aches after tx---I got new lungs Jan 4!

[musclemania70]

A little background: I was evaluated about 2.5 years ago on my own request because I wanted to be prepared for when the time came.
at the end of Nov 2012 I was having some pain in my chest, and thought I was being admitted for a regular IV treatment. I went downhill fast.
In two weeks they sent me by ambulance to PITT to see if they could help me. I was getting sick fast and all that was holding me from being listed was paperwork. By the time I was transplanted on Jan 4th, i had been on the list for less than two weeks. CRAZY. But the doctors were amazing.

My question is about healing afterwards. I am home now-3 months out and my lungs are feeling great. Its my muscles that atrophied so much and now I am having pain in my legs, arms, back, and a significant loss of movement. I try to walk daily which i have no problem with but i still have majorly achy and weak muscles. Did this happen to anyone else? How did you handle it?

I am going for follow up next week too.

thanks!

 

[baco623]

Don't worry, what you are feeling is completely normal even this far out. I had my transplant 2 1/2 years ago and I have to be honest it took me about 6 months to a year for my muscles to feel normal again and even now I still have some muscle problems. Granted I was in the ICU for almost 3 month before and after my transplant so my muscles really really atrophied badly but that is completely normal. You just can't forget that you just went through MAJOR surgery so your body is still trying to adjust to what you have just gone through. Your nerves take a while to heal and your muscles especially in your chest are still getting used to the new lungs. Also when it comes to the muscles in your arms, legs and back they probably aren't used to getting as much oxygen as your getting now with the new lungs so they need time to adjust as well. My advise would be to get as much excersize as you can... BUT DON'T PUSH YOURSELF TO FAR!!! That was a big mistake I made. I tried to do to much to fast and it actually set me back cause I started having muscles rip and strain. Walk as much as you can stand. Its good for your leg muscles and your lungs of course. If you can get to the gym do very very light weights for your arms, but careful working your chest and shoulders, they are still healing. I would ask your transplant clinic if they have a physical therapist you could talk to and work with. They would know what to do the best. Congratulations on the new lungs, enjoy them, take care of them, take all your meds and stay in constant communication with your transplant team if you have any questions or concerns... WELCOME TO YOUR NEW LIFE, IT ONLY GETS BETTER FROM HERE!!! If you have any further questions feel free to ask or private message me!!

 

[musclemania70]

Thanks for your response!
Were you taking any pain meds while you had the leg problem? It seems I am always fighting with myself to try and not take any but its the only thing that helps. I only allow myself one pill per day. (.25 mg) percocet.

 

[baco623]

I wasn't really taking any pain meds before or after my transplant. Only Tylenol. My transplant center (UCSF) was a real stickler about having no pain medication and just getting through the pain. They didn't want my respiratory rate to go down because I was on any kind of pain medication because opietes make your respiratory rate go down. They just instructed me to take Tylenol every 8 hours and do hot compresses on my legs to ease the muscle pain. It is good to not take very much pain meds. I think one pill a day as you said is a good amount but just watch out with the pain meds, they can become very addictive very quickly (I know from personal experience, and they are no fun getting off of them, believe me) How are you doing post transplant? How are you new lungs feeling? Have you had any complications? Let me know how you are doing? Been thinking of you!! Any more questions feel free to ask!!