Post transplant

[Red65]

Hello good people,

Just over 3 weeks post transplant, I was in QE exactly a week. I know it's early days and apart from walking everyday I take it real easy.

They say it takes a minimum if 3 months to feel better, just wondering if anyone can tell me their experience of pain levels etc..the anti rejection meds are playing havoc with my glucose level (diabetes 2).

Thanks in advance.

[alfredthegreat]

HI red65.

It sounds like you are doing extremely well if you are 3 weeks post transplant and walking every day.

We are all different as regards pain after transplant.

Some that have been ill for a long time can take longer to recover than others and some people have more pain and discomfort than others.

I was told that it can take a year or even longer to get over the operation.

I was unfortunate in that it took my op wound 13 weeks to close and heal properly and so moving about wasn't easy for me as it would aggravate my wound site.

I know that quite a few on the forum had problems with raised glucose levels after transplant. I was warned before transplant that it would probably happen to me but I was lucky in that it didn't. In fact 6 months after transplant I entered remission for diabetes type 2 after having the condition for over 20 years.

Just remember the no lifting rule, it's very easy to do it in a forgetful moment.

Hope that your recovery goes really well and those glucose levels are soon back under control.

All good wishes.

Alf.

[Red65 in reply to alfredthegreat]

Thanks so much..I'm getting the staples out tmw, in some places you can barely see a scar!!...they say I've made a spectacular recovery.

Isn't it great we can confide in each other this way.

[alfredthegreat in reply to Red65]

That's great!

Yes, it's a wonderful forum.

I found this forum after transplant, I came across it when I was looking on the internet in the hopes of finding out how long my incision would take to heal.

Everyone was so kind and helpful.

I had been feeling very isolated up to that point.

The support on here is tremendous. I only wish that I had known about this forum a few years earlier

[Hidden in reply to alfredthegreat]

Where 2Reds can Pow wow about their Tipi. That's nice. 😜

[alfredthegreat in reply to Hidden]

LOL. So quick!

[Huggy7614]

Morning Red,

Firstly, congrats on your op, and sounds like you’re doing well, really good to hear.

As Alf says, we are different re pain. I was on morphine for about 3 days post op and then just paracetamol. When I got home after 9 days my paracetamol was occasional - made sure I had some before staples came out, but that really wasn’t that bad!!

But the guy opposite me was on tramadol

For over a week and was really struggling to come off it. He hated the stuff but still had it. All so very different.

Keep up the gentle walking. You’ll feel better every day.

Good luck, Andy.

[Red65 in reply to Huggy7614]

Thanks Andy

I was on morphine in QE but found it bunged you up which gave me terrible pain.

Thanks for your words mate.

[ThreeSmiles]

Hi Red

Wowee out in a week - superman or what! And getting TP so quickly as well. You must have good friends up there!!

I agree with others like Alf and Andy. We are indeed all different. I was ill for at least 4 years before TP so I am still getting there ( 15 months BUT back op two weeks ago doesn’t help) but this isn’t to say at all that I’m not doing incredibly well imho.

I reckon your recovery will be speedy - well it is already - I mean walking after 3 weeks! That must nearly be a record if it isn’t already! Good Job! (Not wishing to sound condescending!)

I hope you continue to get well at the same rate. One word of warning - sorry 😟 - don’t, please don’t, be tempted to overdo it - even after the six months embargo on heavy lifting. I speak from umm well experience? Not to be repeated well can’t be 😃.

Good luck.

Bet you wished I hadn’t said anything- I don’t want or mean to come across negative - because I’m not really, honest!! I’m ecstatic actually in the greater scheme of things 😁.

Miles

[Red65 in reply to ThreeSmiles]

Thanks Miles.

I do feel as though a big hand came down and plucked me out, Also I do have to remind myself not to push it too far, my body is very good at giving me a reminder.

Cheers

[Hidden in reply to ThreeSmiles]

How's your back recovery coming along Miles ? I do hope your behaving and not lifting👍👎

[ThreeSmiles in reply to Hidden]

As you know been there done that and too late was the cry! That’s a saying by the way and not me crying 😁.

[Steak]

First of all well done. We're u diabetic b4 transplant. I became diabetic after transplant blood sugars all over the place so went on insulin twice a day. When steriods stopped insulin stopped then I got an cmv infection so back on prednisolone 5mg and insulin hopefully when steriods stop insulin will. The steriods play havoc with my blood sugars take it easy remember small steps.

[Red65 in reply to Steak]

Thanks steak,

Been type 2 for about 6 years.

I will bring it up at clinic today, I ran out of Valganciclovir last Friday which prevents cmv infection, they didn't give me any at last clinic which I asked for, then I called them last Tues but no one's got back..not happy.I was on 4 met forming and 1 gliclazide a day before tp..they sent me home on just 1 gliclazide. .then increased to 2...it's not coping.

[Steak in reply to Red65]

Did they not give u 3 months supply of valganaclovir when u were discharged as they did with me. After my cmv infection I am back on valganaclovir taking 1 a day of 450mg was on twice a day but now reduced. I was the same as local chemist cudnt dispense them hadn't 2 get from jimmys in leeds were I attend clinic.

[Red65 in reply to Steak]

No, about 3weeks worth

[Steak in reply to Red65]

I was told u had 2 take them for 3 months after transplant. Only back on as of the cmv infection.

[Steak in reply to Red65]

Can't understand why u were only on 4 3 weeks maybe different hospital do different things. I'd maybe question it at clinic.

[Hidden]

Hi

I am 15 months post and still improving.

I was in the QE for 9 days, it took another week before the drain was taken out.

The scar healed together totally within a week

The pain disappeared mostly after a month, although was reducing daily.

My bloods stayed high while I was on steroids, but as they reduced so did the blood sugars.

Once stopped, my insulin continued to drop until I went into remission. Took about 9 months

Difficult to say how it is for everyone, but my journey has been straight forward. Went on Holiday at 6 months and enjoyed it fully!

Best wishes for your recovery, take each day as it comes

David

[Red65 in reply to Hidden]

Thanks David,

You experience seems very similar to mine.

[Tourguide]

Good on you. Your body will tell you how you are going. Just increase the walking etc a little each day. Walk on bus routes and if getting tired jump on it. I was back working 3 months after transplant age 67 but everybody different. Cannot comment on diabetes. The only problem I had with anti rejection drugs was skin probs but that was down to me not following or understanding that is a important area. Follow advice given - hat, sun cream even in winter, I get sun cream on prescription which is good but I live in scotland and prescriptions are free but would still be cheaper I expect than having to buy it for yourself. I am now 6 years post and enjoying life and still working 2 days per week driving tour guide. Hope this helps.

I got off tramadol ASAP. Did not like side effects

[Hidden]

Hi Red

I'm not a TP patient but just wanted to wish you a full speedy recovery so you can begin to enjoy all the beauties that life can offer!' Now whilst your resting enjoy some Christmas movies.....Christmas Chronicles on Netflix is an ace film to watch !

Take care and behave in the meantime ....no heavy lifting

Love Trish x

[Red65 in reply to Hidden]

Thanks Trish...x