OMG?Kidney and pancreas transplant

[Sugar pie]

Well where do start. To make it brief my kidney function has slowly been declining and now functioning at about 13%. I was at guys hospital today and it has been recommended that I have both kidney and pancreas transplant. I have never thought this would happen to me but then again who does? I'm not quite sure why I am writing this but I am totally lost for words and still think that it might not happen. I was shown around the ward, had some blood taken and arranged for a cardiac stress test. I have been type1 diabetic for the past 28years of my life (i'm now 33years) and this is the most bizarre feeling that I may no longer need to test or inject. Apparently I should feel excited and grateful but for some reason I don't. I'm petrified and think that maybe its not too bad and easier staying diabetic. I'm just wondering if there is anybody on here that could give any information on having the transplant, what to expect and how they felt etc. Sorry if I do sound ungrateful but the fear of the unknown is just too much to bear.

 

[Robinredbreast]

Well where do start. To make it brief my kidney function has slowly been declining and now functioning at about 13%. I was at guys hospital today and it has been recommended that I have both kidney and pancreas transplant. I have never thought this would happen to me but then again who does? I'm not quite sure why I am writing this but I am totally lost for words and still think that it might not happen. I was shown around the ward, had some blood taken and arranged for a cardiac stress test. I have been type1 diabetic for the past 28years of my life (i'm now 33years) and this is the most bizarre feeling that I may no longer need to test or inject. Apparently I should feel excited and grateful but for some reason I don't. I'm petrified and think that maybe its not too bad and easier staying diabetic. I'm just wondering if there is anybody on here that could give any information on having the transplant, what to expect and how they felt etc. Sorry if I do sound ungrateful but the fear of the unknown is just too much to bear.

Hi sugar pie It must so scary for you. It's a huge thing to undertake and for you to get your head around. Of course a transplant could be the best thing in the world for you, but it's still major information to take in.

Could you make an appointment to see your consultant or a nurse regarding the procedure and ask lots of questions, I find writing things down in a note book is really helpful.
All I can do is send you my very best wishes and wish you good luck.

Take care RRB

 

[catherinecherub]

Hi,

I cannot imagine how you must feel, I hope someone will reply with some experience.
These sites, although American are quite useful

http://www.kidney.org/atoz/content/kidpantx.cfm
http://my.clevelandclinic.org/services/ ... plant.aspx

Please keep us informed and take care,

CC.

 

[donnellysdogs]

My distant relative organises transplants including islet cells for Scotland.

I was talking to him about it when I saw him earlier this year.

He said that he had been involved in islet cell transplants for about 31/2 years in Scotland.

Hypo recognition is immediately restored.... His experience said that it was pretty much around 2 years free of insulin injections depending upon the person. He also said something about the huge amount of cells required to give a good go at a transplantaion, but I cannot recall the exact numbers...

 

[NorthernPam]

Hi Sugar Pie,
I am so sorry that it has come to this for you but could be the best thing that could happen if it will give you good quality of life. I agree with RRB that it would be a good idea for you to talk again with the team ... maybe ask them to put you in touch with someone who has had this surgery to find out how he/she felt about it, what happened in hospital, and how he/she is now?

Many years ago when I was a little younger than you are now I had a bone tumour and at one time was given 6 months to live. I was lucky enough to find a surgeon willing to have a go and am so grateful for the 30+ normal years that I have had since then. Any surgery is scary but you perhaps have a great opportunity here. In your position I would have no hesitation in going for it but it is your body and your decision.

Whatever you decide I wish you well. I look forward to reading more in the future about what happens next so please post an update in due course.
Pam

 

[TopoGigi]

Hi Sugar Pie
I am 16 years post Pancreas Transplant and know quite a few people who have had Kidney and Pancreas transplants and are doing quite well. I f you need to get in touch with other people who have experienced what Guys have proposed to you then please have a look for Kidney and Pancreas support groups on 'Facebook' this has been very helpful for people that may be facing this. Hope all goes well.
Jenny

 

[catherine1964]

Hi I'm 49 and had a kidney/pancreas transplant at Oxford 5 years ago after having being a Type 1 diabetic doe 25 Years. I wasn't that keen to go ahead with everything but decided to take the fatalistic approach, that if I passed all the medical hurdles and suitable organs became available, so be it.
I was on the waiting list for 6 months and was about to be fitted with the appropriate plumbing for pereneal (sp?) dialysis that week, when the transplant call came through just I was part way through my second pint of Pimm's!
I was horribly unwell afterwards but after 4 months I felt that I was finally on the home straight. I spoke to someone from the transplant support group on the phone regularly afterwards which helped. 5 years on, I'm still off insulin and my kidney function is adequate but not perfect (I have over issues apart from diabetes that have affected this).
catherine

 

[Sugar pie]

A quick update to what is going on with the whole pancreas/kidney transplant thing. As of today I am now officially 'active' on the donor list and could expect a call at any time. My creatinin level is at 390 but my other blood work are not too bad all considering. I will be back at the renal clinic in two weeks time just to discuss the options of dialysis if the time does come for it but they are hoping to avoid going down that road. All considering things are not too bad at the moment. I am trying to be more positive in terms of hoping for a better quality of life, easing some of the complications that have already started, finally going back to work and having some sort of normality in life. I am finding it very difficult mentioning it to friends and family but also feel bad not telling them. At the moment I have only told my parents and sister. That is another hurdle I have to challenge I suppose?! Thanks for the previous advice and understanding of my negative feelings regarding the transplant. Onwards and upwards from now on

 

[Tracey167]

Hi Sugar pie

I just want to wish you all the best and that everything works out really well for you, to be honest you are so brave, like you i think i would feel happy but also nervous and shocked to think you are in with a chance of never having to inject insulin for hopefully many years

Good Luck, all the best

tracey167

 

[audsital]

Hi sugarpie, good luck to you :grin:

Sent from the Diabetes Forum App

 

[Sugar pie]

Thank you both it means so much x

Sent from the Diabetes Forum App

 

[WhitbyJet]

Sugar pie, you are incredibly brave, I hope and pray for you, that it all works out really well; big hugs x

 

[punto53]

Well sugar pie good luck I wish you well!! Keep us informed how your doing ...

 

[SAH154]

I had a pancreas only transplant (PTX) Jan 2012 and the blood sugars were a bit suspect, I failed the Glucose Tolerance Test it was 11 mmol 2 hours after the glucose. But I have since learned the organ can take up to 12 months to work at it's peak. The insulin goes straight into the blood and not via the liver so it can lag behind so it may sometimes appear wonky but they said 20% outside normal ranges is acceptable as it can bobble about abit.

The consultant said 'think of it like a plumbing bodge job, not perfect but it works better than anything else for T1'

Good luck with the transplant list I had 3 false starts 1st the organ on inspection was 'fatty' 2nd I was ill, 3rd high wind meant it was stuck in Scotland but a week later 4th time lucky.

Oxford had the general policy on the day of Pancreas only 1st, Kidney & Pancreas 2nd and Kidney only 3rd prority as the pancreas is not as tough an organ as the kidney (if that makes sense)

 

[Sugar pie]

Thanks for the support everyone like I said before it does really help. Hi Sah154 well done on your recovery how are things going at the moment. Do you feel much better than previously/was it worth it? I know that sounds a silly question but I have so many questions running through my head that I suppose this is what it narrows down to. My consultant at the renal clinic is not easiest person and does not seem to want to answer any questions or concerns I may have, the whole team seem to be so laid back. Also could you tell me if the side effects of the medication kick in straight away. I have gastroparesis and very frightened that these will make things worse especially while in hospital (weird I know). So sorry for bombarding you with all these but any little info would mean a great deal. Hope all is going well for you. x

 

[Ali H]

Very best of luck.

Ali

 

[SAH154]

Thanks for the support everyone like I said before it does really help. Hi Sah154 well done on your recovery how are things going at the moment. Do you feel much better than previously/was it worth it? I know that sounds a silly question but I have so many questions running through my head that I suppose this is what it narrows down to. My consultant at the renal clinic is not easiest person and does not seem to want to answer any questions or concerns I may have, the whole team seem to be so laid back. Also could you tell me if the side effects of the medication kick in straight away. I have gastroparesis and very frightened that these will make things worse especially while in hospital (weird I know). So sorry for bombarding you with all these but any little info would mean a great deal. Hope all is going well for you. x

I had the operation Jan 2012 - in hospitial for 9 days and total time off work was 11 weeks.
I can't take painkillers except paracetamol I had bad reactions to all other pain killers so I had to suffer a bit - it took about 6 months to really get used to it.

Yes I do feel better and I'm glad I had it done.
My pancreas is bladder drained (bit of a nightmare) but if you're having a dual transplant they should drain yours through the bowel. Plus you have a much lower chance of rejection having the dual transplant than just the one organ.

The side affects of the anti rejection drugs so far have been more irritating than serious. I do get more frequent colds but they are nowhere near as bad as a cold when on insulin. I have lost a lot of the shivering/aching you get when ill (the drugs?)
I get twinges like an ache where they cut through nerves but it's a lot better than it was - It wasn't painful just set off rejection paranoia.

My HBA1Cs have ranged from 30-35 since the operation. I have the odd highish blood sugar I did get a 10.8 once and do sometimes get the odd 8-9 one but these could be caused by the insulin going straight into the blood . On the whole the blood sugars are fine I checked one the other evening 1.5 hours after having a high carb meal and it was 4.4 ( was 4.8 pre meal)

I no longer feel hungry all the time which is nice.

Only real problems I had were nausea for about 4 weeks the mycophenolate does this. I had real bad backache for about 3 weeks (very common I'm told).

I do not feel hot all the time (this happened after 2 days of the op) as it had to be in single figures for me to feel cold - I'm not sure what caused this?

Sorry I have no knowledge of the kidney TX so can't advise on this.

 

[Lena Martin]

How is everyone doing from the transplant? I'm new from this forum and been lurking for some days related to my friend conditions. She's having a kidney transplant next month, she's been going through dialysis for some months now and finally she was able to find her match. She will have her transplant abroad since the kidney transplant cost in India is cheap. She cant bear too much cost because dialysis is very pricey. A medical tourism provider (PlacidWay) was able to assist everything for her from start to finish. We are hoping that there will be no possible complications after the transplant, because we've been hearing a lot from some patients about the possible rejection of the new kidney. But the doctor says that there are many medications afterwards that she will take as long as she has her transplanted kidney.

 

[collectingrocks]

Hi Lena

Thank goodness you're not going on dialysis! A transplant has got to be the right thing and you will have all the support here. Do let us know how it all went. Hopefully you'll have a working pancreas too producing lots of insulin (well...not too much!)

 

[collectingrocks]

Sorry Lena....should have been addressed to Sugar Pie :embarrassed: