Pancreas transplant

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Get a finger pricker that has a good range of adjustable depths. It makes a HUGE difference. I used to hate testing my blood sugar until I got one if those. I put it on the lowest setting that draws blood. Also ( and you may know this anyway) just hold it against the skin. Don't press down. Finally, maybe try a different lancet?

A pancreas transplant isn't a magic answer. My consultant told me that they'd never do one unless the person was ill and needed new kidneys too. The reason for this is that the anti rejection drugs can do damage long term. Obviously, if someone needed a kidney they'd have no choice, but diabetes is controllable so that's a far better option than those powerful drugs. So if you 'only' needed a pancreas they wouldn't do it.

No offence meant by this, but you sound like you may be resisting your diabetes and testing a bit. That's understandable. It's a tedious illness on a day to day basis. BUT by not testing, you're letting your diabetes win. The only person who will suffer in the end is you. It's like cutting off your nose to spite your face.

Get testing, get your control as good as you can, and you'll feel a lot better, both physically and emotionally. You'll be winning, if you do that. If you don't, you'll be handing victory to diabetes on a plate.

It's hard work. You can't forget it or ignore it. But, when they eventually find a cure, then you'll be better placed to benefit from it if you've kept yourself in good health.

Good luck and be strong.
 
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mrspuddleduck

Guest
My pancreas is now dead but my kidneys are ok but Im not eligible for a pancreas transplant. My doctor told me that he would never recommend it unless it was a life saving situation. Despite 15 years of treatment even having to take drugs so I can eat at all, he says its still a better option. Its a very risky op and it definately wont make life easier! I do symaphise with your frustrations but hang on in there! Sue xxx
 

patrickkamau

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
A pancreas transplant is an organ transplant that involves implanting a healthy pancreas (one that can produce insulin) into a person who usually has diabetes. Because the pancreas is a vital organ, performing functions necessary in the digestion process, the recipient's native pancreas is left in place, and the donated pancreas is attached in a different location. In the event of rejection of the new pancreas which would quickly cause life-threatening diabetes, the recipient could not survive without the native pancreas still in place. The healthy pancreas comes from a donor who has just died or it may be a partial pancreas from a living donor. At present, pancreas transplants are usually performed in persons with insulin-dependent diabetes, who can develop severe complications. Patients with the most common- and deadliest- form of pancreatic cancer (pancreatic adenomas- which are usually always malignant, with a poor prognosis and high risk for metastasis- as opposed to more treatable pancreatic neuroendocrine tumors or pancreatic insulinomas) are usually not eligible for valuable pancreatic transplantations, since the condition usually has a very high mortality rate and the disease, which is usually highly malignant and detected too late to treat, could and probably would soon return.


In most cases, pancreas transplantation is performed on individuals with type 1 diabetes with end-stage renal disease, brittle diabetes and hypoglycaemia unawareness. The majority of pancreas transplantation (>90%) are simultaneous pancreas-kidney transplantation. It may also be performed as part of a kidney-pancreas transplantation. Complications immediately after surgeryn include thrombosis, pancreatitis, infection, bleeding and rejection. Rejection may occur immediately or at any time during the patient's life. This is because the transplanted pancreas comes from another organism, thus the recipient's immune system will consider it as an aggression and try to combat it. Organ rejection is a serious condition and ought to be treated immediately. In order to prevent it, patients must take a regimen of immunosuppressive drugs. But as episodes of rejection may reoccur throughout a patient's life, the exact choices and dosages of immunosuppressants may have to be modified over time.


The prognosis after pancreas transplantation is very good. Over the recent years, long-term success has improved and risks have decreased. One year after transplantation more than 95% of all patients are still alive and 80-85% of all pancreases are still functional. After transplantation patients need life long immunosuppression. Immunosuppression increases the risk for a number of different kinds of infection and cancer.
https://en.wikipedia.org/wiki/Pancreas_transplantation
 
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SAH154

Well-Known Member
Messages
74
I had a pancreas only transplant over 3 years ago. It seemed more luck and meeting a separate kidney consultant who put me in touch with a team that offered it.

The criteria are a lot tighter than when I had mine and covered on the NHS website under pancreas transplant page.

You cant mess up with forgetting pills and the main anti rejection drug Tacrolimus scars the kidneys and has many side effects on offer. One is a weird type of type 2 diabetes in the new pancreas. This also happens to say kidney transplant only recipents.

I no longer have any micro albumen in my urine it was about 75 dropped within a year to 0.
 

SAH154

Well-Known Member
Messages
74
Forgot to say my HBA1C results are usually 35 to 37 with 37 being my highest so far. 30 was the lowest.

It chucks the insulin straight into the blood same with any glucagon.

Approx 20% of the insulin gets lost in the process.
 

susyross

Member
Messages
20
Type of diabetes
Type 1
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Other
Dislikes
people who don't make the effort to be healthy
I'm thinking about asking about a pancreas transplant any advice on this
I am a happy pancreas transplant recipient, I got mine on February 18th 2016, not more pump, no more monitors, no more hypoglycemic comas etc... etc.... However this is not the easiest life altering surgery - my first Kidney/ Pancreas transplant was done in 2008... I only had 30% chance of survival after the grafted pancreas leaked and I became septic.. it was a terrible and exceedingly dangerous situation. I had type 1 diabetes for 38 years , back in the days when testers didn't exist, been through all the technological changes, had the best pumps and monitors (very expensive) after the failed pancreas transplant, it took me 5 years to go back on the list - living with my belly wide open and a wound-vac was not easy, but neither was hypo unawareness and repeated comas. If you can control your BGs with a pump and avoid the complications, hang in there... there are other potential "cures" out there - check out Dr. Faustman's research at MASS General: www.faustmanlab.org/
Worth waiting for - I did not qualify for the trials because of my kidney transplant. Now I am a very happy non-diabetic but I will continue being part of the forum because diabetes has been part of most of my life... never give up and never give in -
peace out !
Susy
PS my HbA1c is perfect
 
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TeamBeal

Active Member
Messages
27
Type of diabetes
Type 1
Treatment type
Insulin
How can a pancreas transplant be successful in a T1 diabetic because it's an auto immune deficiency, therefore wouldn't the immune system just attack the new pancreas and kill off the beta cells?
Is that what the auto-rejection drugs also battle? Do they have to suppress your immune system to make sure you don't attack the new pancreas too?
Well happy for you though!! Xx


Greg&Rachel (parents to Carter T1 aged 8)
 

Ilya83

Well-Known Member
Messages
113
Type of diabetes
Type 1
Treatment type
Insulin
If you're sick of taking injections, try to use pomp. If you're sick of measure your blood, try to use glucose monitoring (Dexcom for ex.). Transplantation is a crazy idea anyways.

" im in and out of hospital" Whyyy??? I think theres something wrong. Doctors can not help you with your dia. You should handle it yourself.
 

brendan101

Well-Known Member
Messages
64
Type of diabetes
Type 1
Treatment type
Insulin
Hey Coralkay,

Pancreas transplant is not a good idea. The pancreas does a digestive function as well as an endocrine function of producing insulin and the anti rejection therapy is with you for life. There are no guarantees with it and you open yourself up to getting infections that your body can currently deal with. ANdy gave some great advice with the Freestyle Libre. It's about £50 a sensor which lasts 14 days but it was a real eye opener for me and how my levels flucuate. Diabetes is life changing and you need suportive people around you. I went through a terrible bad time last year with side effects and I trialled the inhalable insulin and my life was transformed. It's called Afrezza although it is not available in the UK yet. I had to import it at over £700 a month which was not sustainable. I now inject Victoza once a day and I use Humalog and Tresiba and I find that the Victoza really helps to stabilise my levels. I have also reduced my daily dose by 20%. Although diabetes type 1 is easily defined, we are all different and we need to be proactive in caring about ourselves. I value the NHS and I obviously pay into it but it is somewhat lacking to say the least. You can do this. There are various groups on social media where you can meet other diabetes sufferers for support. I never engaged with this before but I am starting to now. It is not your fault and it's ok to feel bad about it. There are solutions out there. The pump was not for me but that doesn't mean it's not for you.
 

susyross

Member
Messages
20
Type of diabetes
Type 1
Treatment type
Other
Dislikes
people who don't make the effort to be healthy
How can a pancreas transplant be successful in a T1 diabetic because it's an auto immune deficiency, therefore wouldn't the immune system just attack the new pancreas and kill off the beta cells?
Is that what the auto-rejection drugs also battle? Do they have to suppress your immune system to make sure you don't attack the new pancreas too?
Well happy for you though!! Xx


Greg&Rachel (parents to Carter T1 aged 8)
sorry for the late response, I was not in the office and didn't see your reply. Yes the immune system is suppressed, sure for anti-rejection purposes but I am not a doctor so I am not sure how the over active T cells are kept in check my best guess is the suppressed immune system - I hope your son Carter has a pump, it is hard enough for a young adult, but harder for a child. and must be hard on you as parents- I guess I was lucky in some ways as I was already away from home and just had to get on with it! I believe strongly in the research of Dr. Faustman.
I wish you and your son a long and healthy life
xx
 

susyross

Member
Messages
20
Type of diabetes
Type 1
Treatment type
Other
Dislikes
people who don't make the effort to be healthy
Hey Coralkay,

Pancreas transplant is not a good idea. The pancreas does a digestive function as well as an endocrine function of producing insulin and the anti rejection therapy is with you for life. There are no guarantees with it and you open yourself up to getting infections that your body can currently deal with. ANdy gave some great advice with the Freestyle Libre. It's about £50 a sensor which lasts 14 days but it was a real eye opener for me and how my levels flucuate. Diabetes is life changing and you need suportive people around you. I went through a terrible bad time last year with side effects and I trialled the inhalable insulin and my life was transformed. It's called Afrezza although it is not available in the UK yet. I had to import it at over £700 a month which was not sustainable. I now inject Victoza once a day and I use Humalog and Tresiba and I find that the Victoza really helps to stabilise my levels. I have also reduced my daily dose by 20%. Although diabetes type 1 is easily defined, we are all different and we need to be proactive in caring about ourselves. I value the NHS and I obviously pay into it but it is somewhat lacking to say the least. You can do this. There are various groups on social media where you can meet other diabetes sufferers for support. I never engaged with this before but I am starting to now. It is not your fault and it's ok to feel bad about it. There are solutions out there. The pump was not for me but that doesn't mean it's not for you.

I have to agree that we are all different, but my pancreas transplant has saved my life and effectively I had insufficient pancreatic enzymes, could not digest any thing and despite an extremely good pump and 2 CGMs I still had severe hypos including comas.. Since my transplant my BGs are perfect, I can eat almost anything ( although I still eat the same way which is a healthy vegetarian diet) But without a new pancreas I would be taking different supplements before every meal trying to get the food absorbed... and even with that is wasn't guaranteed.. now my enzymes are perfect too, so for people like me the transplant is life saving, life changing, rejuvenating and everyone keeps telling me how much healthier I look!
 
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LittleGreyCat

Well-Known Member
Messages
4,238
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Diet drinks - the artificial sweeteners taste vile.
Having to forswear foods I have loved all my life.
Trying to find low carb meals when eating out.
Sounds like the big issue is finger pricks because you have finger problems.

People have already mentioned alternative site testing - I was only ware of this because my tester comes with two different heads for the pricker - one for fingers and one for alternative sites.

http://diabetesdigest.com/glucose-monitoring-alternate-site/

I've never tried alternate sites, but the big bonus is less discomfort.
This may be worth a try.