End of a Dream

[TopoGigi]

Hi all
I am in limbo at the moment.
My Pancreas Transplant is no longer functioning and I am now back on Insulin after almost 21 years of freedom, but still have to take immunosuppressants.
I am lost as things were very different back in the 90's.
I have gone back to my original Diabetic team and find the Diabetic Nurse unsupportive

 

[eabhamurphy]

Oh I am sorry to hear that. That must be a total shock to the system.
Have you gone back on the same insulin as before? What advice have you been given about your therapy options?

 

[Phoenix55]

Sad to hear your news. It may be that you caught the nurse on a bad day, we all have them, so give it another try. If they are still unsupportive ask to see someone else the following time.

 

[DCUKMod]

Hi all
I am in limbo at the moment.
My Pancreas Transplant is no longer functioning and I am now back on Insulin after almost 21 years of freedom, but still have to take immunosuppressants.
I am lost as things were very different back in the 90's.
I have gone back to my original Diabetic team and find the Diabetic Nurse unsupportive

TopoGigi - What a blow for you, after all this time. Will you be able to have a further transplant, if a suitable donor can be found?

I have a friend (formerly T1) who had a kidney transplant, with a "bonus pancreas" some years ago. The kidney failed after a while (due, largely because the reason for her original kidney failure was misdiagnosed). She has subsequently had a further kidney transplant a is extremely well. She now had 4 kidneys, as they leave the originals and initially transplanted on in situ.

I really hope you can do something similar.

Maybe you could give the nurse another go. Maybe she was having a dire day, for whatever reason.

 

[Jaylee]

Hi @TopoGigi ,

Sorry to read of your news.. What insulin regime have you been prescribed?

Tagging in @Grant_Vicat whos had experience with pancreas transplant, & may have input..

 

[phdiabetic]

Wow, terrible. Are your numbers as bad as a T1 would normally get or do you still have some pancreatic function? Will you get yet another pancreas? Or are you just in the same situation you were in before the transplant, with the added difficulty of needing immunosuppressants now? Also does the pancreas still do all its other functions or is everything useless including beta cells? Good luck

 

[Grant_Vicat]

Hi all
I am in limbo at the moment.
My Pancreas Transplant is no longer functioning and I am now back on Insulin after almost 21 years of freedom, but still have to take immunosuppressants.
I am lost as things were very different back in the 90's.
I have gone back to my original Diabetic team and find the Diabetic Nurse unsupportive

Hi @TopoGigi , how I feel for you, especially after such a long time without having to deal with daily fluctuations. I wonder several things: Where was the transplant done? Which hospital "looks after" your diabetes? (I was at King's College Hospital from October 1978 - 2000). Have the transplant team said this is the end of your dream? I had my kidney/pancreas transplant done at Addenbrooke's 4.5 years ago. While I was in post op observation, I was in a room with 5 liver transplantees, one of whom was having a third liver transplant. He was young and extraordinarily philosophical. Obviously I don't know anything about your age and fitness, but I do know that fitness is paramount for further treatment. I had 2 MIBI tests in 2 years just to check that my heart would stand the transplant. I was 5 days away from my 55th birthday - finest present to date. Yet always somewhere near the surface is "What if this fails? Am I doing the best to ensure it doesn't? Why did they adjust my immunosuppresant dosage after 2 years?" I would guess you must have been through all that and never became complacent. Do you keep in contact with the transplant co-ordinators? At Addenbrooke's they have been superb, and I have contacted them on several occasions by Email, phone and in person. I would advise you to contact PALS to let them know of your concerns. I have done this at the Diabetic Department at Addenbrooke's in the past, and it produced excellent results. I can only pray that, whatever the outcome, you come out the other side and that life is as best as it can be. I have always been (sometimes absurdly) optimistic. Good luck.

 

[Grant_Vicat]

Hi @TopoGigi ,

Sorry to read of your news.. What insulin regime have you been prescribed?

Tagging in @Grant_Vicat whos had experience with pancreas transplant, & may have input..

Thank you @Jaylee All the best

 

[TopoGigi]

An update
I was originally referred to St Marys Hospital Paddington London for a Pancreas only Transplant in !996 by my now retired Diabetic Consultant at the Royal Free Hospital London as he had concerns about my deteriorating health.
It was not an easy journey initially as I had serious life threatening complications post surgery and endured other health problems over the following years not necessarily Transplant related. I have had CMV, Shingles, Pneumonia, Fractured Heel, Frozen shoulders, Hypothyroid, Microscopic colitis, Rheumatoid Arthritis, Complete Heart Block, Pacemaker, Heart Stents, Cardiac Autonomic Neuropathy, that's just a few that I can think of. So you can see I attend quite a few different departments in about 4 different Hospitals/ Trusts so its not easy, especially when they don't communicate with each other.
I will eventually see a Consultant whom I've known for some years and a Surgeon to discuss another Transplant but because I had so many problems immediately after the first one I am cautious, however my Renal function is now stage 3b/4 so if it comes to the crunch I may need to think again about my options. I have never seen a Transplant Co-ordinator pre or post.
As far as the Type 1 Diabetes we don't know how much if any function I have in my Transplanted Pancreas it's a bit of a guessing game at the moment and I've just had my second Diabetic appointment cancelled to August??? But I am going to a "Freesyle Libre" course next week but apparently although I might get one I probably wont be eligible for the equipment.
On a positive note I have just started working part time after a break of 10 years having been sole carer to darling Mummy who sadly lost her battle with COPD Emphysema in November 2017.