Liver TP assessment

[peteingloster]

Just been up to Birmingham QEH for the 2 day assessment, all seemed to go well and the specialists said the readings that applied to their specific speciality showed no signs that would affect my suitability for the TP, however, the dietician said my muscle mass was low due to wastage over the last year, hopefully this shouldn't play too significant a role in their decision making, will find out this PM ; everything crossed and will update this post when I find out.

[Godfrey1]

Everything crossed here for you 👍

[h0b0]

Wishing you lots of luck.xx

[LAJ123]

Peter,

Like you I had a lot of muscle wasting and weakness. Every appointment was with the consultant, transplant nurse coordinator and the dietician.

Between them they kept me well enough to be listed for transplant and beyond.

The dietician was brilliant. Each appointment I was weighed and muscle mass measured and given a detailed dietary regime to follow. At one point they did consider giving supplements via a nasal tube, thankfully that was avoided.

By sticking to the diet and her prescribed supplements I'm here to tell the tale. I was sticking to the diet ? Lucy, my partner, later confessed, most of my food contained the powdered supplement !

So, don't worry about it too much, this particular problem, with hard work can be overcome.

Remember, its not just diet which will help prepare you for the transplant, despite feeling tired and fatigued all the time, you have to keep as active as you possible can.

Take care,

Jim

[peteingloster]

Thank you all soooo much.

[Hidden]

Good luck Peter!

Best wishes from all at BLT

[peteingloster]

Just got the great news have now been accepted onto the TP list to be confirmed as active sometime next week. One query though; has anyone been advised how a tooth extraction affects your waiting list.?

[AyrshireK in reply to peteingloster]

Congratulations on the listing.

My hubby had several teeth removed post transplant listing as they were a potential infection risk should transplant have happened. It made no impact on his listing what so ever and needed done. Hubby hadn't been registered with a dentist since childhood - his teeth weren't bad just loose due to bone density loss, but, as part of his listing criteria they did demand he go and have regular dental treatment.

All the best to you.

Katie x

[peteingloster in reply to AyrshireK]

Thats a great help thank you

[7265sunlower]

hope everything goes well

[peteingloster in reply to 7265sunlower]

Thanks so much, just got the call yesterday they have accepted me for Liver TP, consequently didn't sleep too well last night, everything and anything going through my mind, still at least I'm retired so easy enough to catch up on my beauty sleep, much needed.

[bobbycat in reply to peteingloster]

Great news

[LAJ123 in reply to peteingloster]

That's excellent news.

Be prepared - my transplant came two weeks after being listed.

Jim

[peteingloster in reply to LAJ123]

Thank you so much, here's hoping mine isn't too long. Will keep the postings going.

[andy-g in reply to peteingloster]

Congratulations on getting on the list.Just want to say do not be disheartened if you do not receive a transplant the first time you are called sometimes the liver is not good enough .I was called three times before I received my transplant . I was knocked back the first time not fully realising how it works . I got my transplant 4th time along with some 1st call recipients , just so you know they will be trying to get you a liver that is good enough.I hope you are lucky soon the wait was so worth it .

[peteingloster in reply to andy-g]

Thanks, yes they did make sure I understood that I could face disappointments when called. Hows your recovery going

[andy-g in reply to peteingloster]

Got a split liver shared with a child so I was lucky as it has to be very good for children. Liver has been great from day one , no problems at all.kidneys not quite on-board yet. Apparently 1 in 3 recipients suffer some degree of kidney failure I had it before transplant courtesy of meds.They are improving all the time. So happy not to be draining 12 to 14 litres of ascetic fluid every week. I was malnourished ( lost 6 stone and most of my muscle tissue) but feel like a new person.Hope you get your transplant soon . We are so lucky to our health service and brilliant doctors and nurses not least of all the wonderful donors. Look forward to hearing how well you are doing post Transplant.

[peteingloster in reply to andy-g]

Thanks, sounds like you've been on an epic journey as well just waiting for the call will keep you posted

[andy-g in reply to peteingloster]

Hi the greatest difference is now I plan for things in the future. My liver is performing beautifully, kidneys not quite joined the party.I am a bit sensitive to the meds but small price to pay for a life.When you get your liver you will feel like shouting from the rooftops just keep thinking when not if. Got my fingers crossed for you. Looking forward to getting your post op message.

[peteingloster in reply to andy-g]

Hi Andy, your news sounds fantastic I would place a large bet on your kidneys "joining the Party" anytime soon. I was accepted onto the list late July and got the TP call 22/8/2017 0200 Tuesday AM, couldn't believe it was so quick. I had consented to the VITTAL research programme, The organ perfused within about 90 seconds so in I went. It was on the machine 4 hours and behaved perfectly, the TP went like a dream [ so I am reliably informed ], ICU 3 days and than to the 4 man ward, Ohh but the visions and dreams . Not good V scary. but so worth it; and yes my wife and I are now planning for a life!!!!!! Am now on 6 tablets a day! Prograf am and pm etc so really brilliant . am going to QEH Birmingham for clinic once a fortnight so they are really pleased, Will update when and as ! so a huge thank you all above and bless our NHS and all who sail in her!

[andy-g in reply to peteingloster]

So glad you are on the mend isn't it great to plan for the future! Tablets will gradually reduce but there will always be some. Just take it easy and don't overdo it. Yes our health service is great. Congrats again welcome to the survivors club.

[peteingloster in reply to andy-g]

Many thanks, andy-g ; I have been a bit impatient but am learning; like a baby; small steps and walk before running; without doubt one of the best clubs to join; no rules just take things easy!!!!Keep in touch.

[7265sunlower]

good luck

[GeorgeDav]

👍