Post transplant aches

[Popel]

Hi all.id like to direct this question to the post transplant community who are further along than myself at five weeks.how were you all feeling at my stage?.ive been having really good days and day were I’m having an aching body like I’ve flu and the odd twinge which I find difficult explaining to people but I know you’ll all know what I mean.although saying this my fitness is improving daily .im not as breathless as I was.when I first came home I’d be out of breath putting my arms up for a minute lol.im so glad I found this site because as great as the doctors are at trying to explain what you’ll feel like there’s no substitute for experience.thanks guys.x

[Hidden]

You have had a massive operation and it takes time to heal. Try everyday to take a further step forward, rest when you are tired. I am seven months post transplant and only starting to be able to get back to the things that were once normal.

Good luck with everything, it takes time and you will feel better.

[Popel in reply to Hidden]

Thanks.its hard when you don’t know the recovery process.

[alfredthegreat]

Hi, At five weeks post transplant I was sill having the district nurses coming in and packing out my op wound. I didn't see more than the bedroom and bathroom for several weeks after discharge. Getting to any appointments was a mammoth effort. We are all very different dependant on age, fitness pre transplant etc. so I would say that it sounds like you are recovering really well. Regards Alf

[Popel in reply to alfredthegreat]

Thanks Alf.i suppose patience has never been a virtue of mine.it doesn’t help when you hear of people going back to work at three months.its been so hard on my partner for the past five years and seeing her going to work everyday is hard.because I feel like I’ve put enough on her shoulders and want to do my bit.thanks.

[alfredthegreat in reply to Popel]

It's been a very similar situation here. I've had some other problems too that are not transplant related and so only now am I managing to get back to things like lawn mowing and a bit of DIY. Don't try to push yourself too much, your body will let you know what it's able to do. Slow steps forward and no steps back is the way. I was told do not lift a kettle for 3 months and don't use a hoover for 6 months (my wife is still laughing at that one!).

[jojokarak]

Don't worry about it popel, I mean in regards to your comment about people being at work 3 months post... We are all different and have different experiences pre and post transplant.. Like you I was ill for years before and had a lot of problems I am now 2 and half years post and I have accepted I am never going to be how I was before I got ill I haven't got the energy to work but I have my independence in I don't need watching 24 hours a day 😉

Hopefully in time you will be able to but there is no rush your body and mind will recover in its own time x

Take each day as it comes and do what you want and don't feel guilty

[Popel in reply to jojokarak]

Thanks for replying helps loads hearing other people’s experiences.

[Hidden]

Certainly at your stage I was have good and bad days as you described.

I was told this would happen, as time as got on the good days are more than the bad.

I still suffer from aching, but that could just be my age! After the transplant I feel so much better that I have started to notice I am getting old!

[Jans1953]

I am 8 months post-transplant and I get terrific aches & pains. I try to increase my activity but I'm lucky I'm retired so don't have work to go to. I believe that my pains are due to side effects from my medication although my joints and muscles ache I have full function. It just hurts! I am hoping things will ease off the further I get post-transplant but if not then I guess I have to learn to put up with it. We're all different but report things like this to your doctor just to keep him aware of what's going on.

[Popel in reply to Jans1953]

Surly jan you medication has been reduced to the minimum amount after eight months yet you still believe its the medication that’s causing you aches.x

[Jans1953 in reply to Popel]

I was originally on Mycophenalate and Prograf but couldn't tolerate Mycophenalate so was changed to Prograf 2mg bd + Azathioprine 75mg after 3 months. This is when the aches & pains started. They will not reduce any dosage until at least 12 months apparently.

[Dorset123]

Hi Popel,

I’m now 2 1/2 years in & am now largely Lucius normal life (for a 62 year old!!).

Still get tired, but am ok as long as I don’t sit down!! Took me over a year to get back to playing golf. & they fibbed about the surgery..still can’t hit it straight!!

Also still get almost constant deep wound pain on the right. You learn to accept & live with it!

But it sounds like you are doing fine only a couple of months in.

Take it gradually...Apparently it’s easy to give ourselves a hernia.!!

[Popel in reply to Dorset123]

A hernia?from the wound itself.x

[alfredthegreat]

Yes, They have to cut through the muscle in the front of the stomach to get to the liver and so this area is very vulnerable, particularly in the first 6 months after transplant. That's why they tell you not to be lifting anything as heavy as a kettle full of water for the first 3 months and not to think of using a hoover for 6 months. Also I was told that when I get up from the bed or a chair try to do it without using the stomach muscles, which I found very difficult.Alf

[Popel]

I must of missed that memo but the QE did say not to lift anything heavier than a two litre bottle of water but didn’t say why.however I can’t fault them they’ve been amazing.i just wish all hospitals explained the ins and outs as well.five years ago when I had my first bleed got an ambulance to my local hospital and nobody explained anything all I was told was just make sure you eat little and often.that was all I’ve had to research everything myself they didn’t even refer me for a dietitian.doctors eh!

[alfredthegreat in reply to Popel]

Very similar. I too had been ill for roughly the same time. I had very little dietary information. It was only when I got to transplant assessment that I got the dietary info. Other than to eat eggs to keep my albumin levels up. Hence my muscles were very wasted and I had become very weak.

[Popel in reply to alfredthegreat]

That’s so my experience.although I did my best to eat well.it was also only when I got assessed and saw a dietitian at the QE who to told me about eating loads of protein.so between being assessed and being transplanted I ate over a 100 gram a day and managed to gain weight which I needed after for recovery.if only I’d been told this before I’d of recovered better and not lost all this muscle mass I lost every time I’d have a bleed.but hey ho onwards and upwards.

[alfredthegreat]

Yes, again the same here. I ate very healthily. I had HCC as well as cirrhosis and so I was avoiding all the foods that would upset the cancer. eating, fish, chicken, veg, fruit, etc but not enough protein or carbs to maintain my strength and muscle. As I have said many times on here, I wish I had known about this forum pre transplant.

[Popel]

It’s so hard eating or it was.i still eat healthily and the lack of salt in my diet was so hard to get used to but now I must have either a finally tuned palate in that I can taste a grain of salt on anything.which maybe is good thing and also I can’t tolerate to much sugar either even though I had a sweet tooth before the op.

[alfredthegreat in reply to Popel]

I've eaten so healthily that after having had diabetes type 2 for 20 years I have now gone into remission. I use stevia sweetener in drinks and in powder form on cereal. I use pepper and spices rather than salt now and actually enjoy my food more.