Hi S,
I hope the hospital did not promise utopia for Peter after his transplant. You are right, it is not the easy option; it is the last resort. But stick with it (like you have a choice!!), things will get better!
The tremors do decline with time, very slowly. Imperceptibly. I still get tremors 2 years post transplant, although these are now pretty minor. Some circumstances make them worse, hunger being the main one. The drug I am on is Cyclosporin, not tacrolimus, so Peters tremors might subside more quickly. I found (and still find!) the tremors embarrassing! Especially when in a pub or shop clutching a quivering ten pound note in my hand!! I must look like an alchohlic with DTs or a really nervous kind of bloke! But heck, I try to see the funny side and I prefer it to dying any day.
Tell Peter they will subside. But yes, they are horrible at first.
The side effects of the meds are quite something, and take some getting used to. As does having a heart that does not know you are doing anything energetic for a few minutes (no nerve supply means only slower chemical messages reach the heart to tell it to change speed iyswim). But you DO get used to the new way you feel and they DO diminish over time. The first year on every visit I would ask about side effects. They always shrugged and said 'thats normal' and 'it will get better' And they were right.
Headaches: sadly they are BAD. But I never liked the feeling of nausea, breathlessness, cough, tiredness, thrist, pain and prospect of dying pre-transplant . The good news is the headaches get better too. I have found that timing the Mycophenolate pills to coincide with eating (not to take with but soon after or before food) helps, as does eating before I feel too hungry. Is Peter on Mycophenolate? Another thing to remember is they can and probably will reduce the meds as time passes by.
Exerise is good for anxiety and gaining confidence (I found). Peter has been through quite something and life post transplant is not without its trials and will never be perfect. But it can be pretty damn good and with the benefit of the experience of nearly dying and getting 'bonus time' can make the new life seem all the sweeter so don't get down about things. Life will get better every week for the first year. It is a long road to 'recovery'
BTW Peter will get tired and want to sleep - this is very common. Even now some days I just have to have a kip.
Crowds: LOL!! After just a few months in hospital I found being outside pretty strange! Our first stop on the journey home for a rest break at a motorway service station was like entering an alien world!! So big, so many strange people. Tell Peter not to worry, to take his time, find his feet again. It is all quite normal.
As for infections, with young children around Peter is going to be pretty well exposed to bugs and things and if he is like me he will tend to get all the illnesses the kids bring home and more! But again, this is normal, his immune system is deliberately suppressed to prevent rejection of the transplanted heart.
S, if ever Peter would like a chat, on the phone or PC, I am always here.
All the best to you both!