Pancreas Transplants

[lukus89]

Hi,
I'm new to this forum but after searching all over for answers i'm now registered here, hoping someone can help.

Let me start with myself.

I'm 25 years old.
I've had type 1 since i was 3.
I've never had good control.
I've relied more on my senses than testing my blood sugar for the last 14 years or so.
I do on average about 30 blood tests with my own machine a year.. (i know).
i have a terrible diet. not with food, just sugary drinks. I have an addiction to coca cola and red bull / lucozade. I get an enormous buzz from these drinks and even tho i've tried to stop or lower my drinking of them i simply can't. Trust me, i've tried. A LOT.
my food diet is healthy, but i eat a lot... a real lot.
I'm a slim build of 5'9.
I

Until recently, my worries towards my diabetes have been minimal. I'd say i'd think about it maybe once or twice a month, normally when eating something bad.
Recently its starting to scare me. I was told my kidneys were starting to leak proteins and had to get new medication to take along with my 2 injections a day..
As said, i'm quite good with my feelings.. i can tell when i'm low / high fine.


This changed recently... and now i really cant tell that well at all.
Going to sleep at night is a worry. I worry i'm going to go low..
i worry my girlfeind wont be able to deal with it.

For this reason i started looking at Pancreas transplants.. in my mind.. ending all the problems in one, for a small sacrifice of a month in hospital and maybe a different drug to take for the rest of my life.

After asking ym diabetes specialist about it.. I felt destroyed. I was told he was the head of Diabetes in my local area and he'd not even seen one ever done, nor reffered anyone for it. This news i didn't take well and when questioning further i was told after he'd looked into it that i'd have to be on dialysis with kidney problems before it would even be considered and having around 3 hypos a week, with absolutely no feeling of when it was coming on...

So, my thoughts were this: Why, in this day and age, do i have to wait for my body to get worse before something will be done to stop it?
WHY DO I HAVE TO RISK MORE HYPOS??
WHY DO I HAVE TO BE CLOSER TO A COMA OR DEATH BEFORE THE NHS WILL DO ANYTHING?

IT MAKES NO SENSE.

My question is this... how do i get myself further into this?
how do i get on the waiting list?
do i have to be referred by my doctor or is there another way?
do private hospitals do this?

Please, please help me if you can.

Thanks

 

[Auckland Canary]

Quite simply pancreas transplants are not at all effective. You would need to take anti rejection drugs for the rest of your life which (so I'm told) are really strong and dangerous and the transplants do not work over a long period of time. It is far worse than controlling your diabetes with insulin. It is not a quick fix solution and hugely expensive. Do you think that if it was that easy we wouldn't all be trying to get one?

I don't want to be blunt but you have clearly stated that you haven't bothered to look after yourself and drink fizzy drinks etc so you really need to get a grip on your diabetes first. There are numerous Type 1 diabetics who have tried their hardest for years to look after themselves and still end up with problems. This is not an easy condition to live with and some days I want to just give it all up but that is life. You need to look at this as a wake up call, start testing your blood, counting your carbs and taking responsibility for your own health. The NHS is not there to bail you out because you can't make an effort to help yourself.

 

[noblehead]

Hi Lucas and welcome to the forum.

You don't have to wait for things to get much worse, you've clearly highlighted yourself where you are going wrong and by taking control of your diabetes now might prevent your health deteriorating further.

No one can say what their bg is like by feelings and that is why you need to test your bg regularly when you inject insulin, over time if you run low bg levels and have frequent hypo's it's inevitable that you will lose your hypo awareness symptoms, not to mention the long-term damage that high bg does, it these swings in bg that do the damage.

Rather than pursue the transplant route, try and take control and ask for help in doing so, your diabetes team can give you support and if you mention what insulin regime you are on we will try our best to help also, but it's down to you to what your future holds.

 

[Flowerpot]

Diabetes is a largely self managed condition. The NHS helps us to manage our diabetes as effectively as possible but it is our job to do the hard work.

A pancreas transplant is major surgery with potential complications including a risk of death. The immuno suppressant drugs you have to take for life to prevent rejection of the transplanted pancreas have their own very dangerous risks. Donated organs are a very scarce and precious commodity.

I was referred to the transplant team as I have no hypo awareness and was falling unconscious but having discussed the operation, the implications of taking drugs for the rest of my life and all the very serious potential complications of surgery I decided not to continue with it at that time in my life.

Take control of your diabetes, you obviously know what to do, there are different ways to achieve good control and limit the chances of hypos. Ask your diabetes team for help on getting good control, work with them and follow their advice on regular testing and insulin regimes. Put all your efforts into establishing good control and making your future healthy and happy.

 

[Brunneria]

So, my thoughts were this: Why, in this day and age, do i have to wait for my body to get worse before something will be done to stop it?
WHY DO I HAVE TO RISK MORE HYPOS??
WHY DO I HAVE TO BE CLOSER TO A COMA OR DEATH BEFORE THE NHS WILL DO ANYTHING?

IT MAKES NO SENSE.

It makes perfect sense.

The NHS provides you with everything you need to do your best to avoid hypos, coma and delay death as long as possible (though I'm afraid it's inevitable for us all, sooner or later).

The NHS gives you testing meter, strips, insulin and other medication, regular check ups, monitoring and blood tests. These give you the best chance possible to prevent you from developing complications.

Why on earth should the NHS prioritise a pancreas transplant to someone who doesn't look after their own condition, when there are many, many others who have tried harder, for longer, and who are, despite their best efforts, in a far worse situation than you?

 

[phoenix]

Donated pancreases are scarce . There were only 456 such donations last year and of that they were only 246 that were eventually transplanted (that's not because they weren't needed but mainly to do with suitability and logistics) There were just 246 pancreatic transplants in 2013 and of them only a small number were pancreas alone. Most were for pancreas/kidney transplants ie for those who have very serious kidney problems ie people needing dialysis.
.https://www.organdonation.nhs.uk/st...nt_activity_reports/ukt/pancreas_activity.pdf
You need to do everything you can do to avoid getting to that situation since there is then no guarantee that a suitable donated organ will be available in time(most on the list wait for about a year but some for much longer)
You can far more chance of an active and good life if you start taking control for yourself. things for yourself ..
I doubt you could really feel your blood glucose levels that accurately in the past. As you are now worried about it, this is the time to start testing.

 

[Charles Robin]

Hi Lukus, and welcome to the forum. I understand your situation perfectly, becaus it bears striking parallels to how I used to be. I am 27, also diagnosed at age 3, and equally did not think much about my diabetes. And like you, I convinced myself I couldn't change. It was true as well. I just did not care enough to make the effort. But then, everything got put into perspective. I got married in 2013. And it made me start thinking about how I was just thinking of myself. You are in the same situation with your girlfriend. Do you discuss things with her? Do you explain your diabetes well, or do you avoid talking about it?

I knew, like you do, that things were going downhill. I would shield my meter with my hand when I tested if my wife was in the room. If she asked me anything about diabetes, I would tell her everything was fine. When she didn't believe me, I would get angry. I did not for one moment think about how it was affecting her. Then, her father had to have a serious operation (he's not diabetic so nothing to do with that). I watched the tears, the worry, the feeling of helplessness she had. She said to me 'we have to look after ourselves so we don't have problems in our old age.' Her words hit me like a tonne of bricks. I realised that I was making her feel exactly the same as she felt about her dad; helpless. She couldn't talk to me, she couldn't help me. And then I started to think further down the line. When complications started to set in, she would have to support me. She would watch me slowly disintegrate, and at the end she would be married to a horrific mess, enraged at everything and in constant agony. We would probably have children, and they would have to watch the torture as well. And this would happen much sooner than old age. I imagined being 40, and struggling to see her. Hobbling across the room to collapse in her arms, the pain in my legs too much to bear. My vision too poor to enjoy, but still enough to notice the blood in my urine. Laying awake T night, knowing I had done this all to myself. Maybe I could live with that. But what I would do to that wonderful, beautiful woman that had lit up my life, that idea made my blood run cold.

So I started to change. I began looking at what I was eating again. It took time, but I started to involve my wife as well. I began discussing what I was eating, and the crushing disappointment of my blood sugars not being good. I tried so hard, and my blood sugars were all over the place still. I remember being out for 2 hours on my bike. Usually I enjoyed the solace of watching the cycle path roll by, but it genuinely felt like I had company. I had a long, frank conversation with my future self, and he hated me. He screamed at me the entire time. He showed me his legs, amputated above the knee. He told me I might as well quit my job as an accompanist, because my hands would not be able to play the piano much longer. And even after all that, it didn't feel real enough. So I started looking for help. I found this forum, just like you have. I looked at the complications section, at what I was looking forward to. One theme stood out; don't become me. Some of the people with complications did not come for hope, or for answers, but to save others from experiencing what they had. I read, and I trembled, and I physically shook for over an hour. And I decided to do whatever it took; I would master my diabetes.

I was still trying to limit my portion sizes, to carbohydrate count, and to 'be good.' It felt horrific. I was having loads of hypos, and would over treat and go high. I was constantly starving. I knew that this was not the way forward, that there must be another way. And then I came across a book that has saved my life. I was researching diabetic neuropathy, and online I came across a chapter from a book on diabetes. It was very descriptive, and gave good advice. I noticed the book was called 'Dr Bernstein's Complete Diabetes Solution.' It sounded like a tall claim, but I thought what have I got to lose? So I purchased the kindle edition, and I started to read. I won't lie, it was a very, very hard read. Dr Bernstein's solution seems extreme; cut out almost all carbohydrates. But again, I decided I would try it. I believed I was saying goodbye to any enjoyment with food. I scoured the Internet for something that would refute his theories. I couldn't find anything convincing. The best I could find were the excuses I was trying to make myself. And Dr Bernstein takes his own medicine. He was diagnosed with type 1 as a child, and it was killing him. He changed his ways, and is now a healthy man in his 80s, all because he has excellent diabetic control.

I set a date to start the diet, and tried an experiment. For a week I ate my high carbohydrate diet, keeping track of everything I ate, my insulin and my blood sugars. Then I started eating low carb, and kept the same diary for that week. It was like someone had flicked a switch. My blood sugars were stabilising, I was having far less hypos. I had considered 14 to be an ok result before. Suddenly I was going no higher than 10. And I was being cautious with my insulin, to avoid hypos. I started experimenting, matching insulin to protein rather than carbohydrate. It was working. I was amazed by the change. And I was finally discussing everything with my wife. I was no longer ashamed of my blood sugars. I was still going high sometimes, but now I was showing her, and we were working out what I could do differently in he future.

The first few 3 or 4 weeks were tough. I wanted so much to eat a snickers bar, or a pack of fruit pastilles. But I had made a decision to do this, and I wanted to see it through. And my blood sugars were a massive incentive. Then, I noticed something strange. I ate my breakfast, and afterwards, I wasn't hungry. I had eaten 2 fried eggs, some red bell pepper and a rasher of bacon. And it had filled me up. 3 weeks earlier, I had eaten a medium dominos pizza, along with potato wedges. I had then had half a tub of Ben and Jerry's. After that I was starving. Not being hungry was a bizarre feeling. It was liberating.

Almost a year on, I am pleased to report that choosing to go low carb was one of the best things I have ever done. I enjoy food so, so much more than I ever did before. It satisfies me, and I can go 4 or 5 hours without needing to eat again. Hypos are a rarity, and highs are even more rare. I now consider anything over 7.8 to be unacceptable, because I don't need to run at that level. I have also learned to bake, something I was hopeless at before. I would need to look up how to boil an egg before. Now I have found all sorts of low carb recipes. A lot of them may surprise you. I will always have a sweet tooth, and I don't miss out on that front. I use a sugar free sweetener called Stevia, and I make cakes, muffins, pancakes, all sorts really. I use ground almonds instead of flour.

I strongly urge you to research diabetes control, particularly low carbohydrate diets. There is no quick fix, and I truly believe that pancreas transplants offer a cure that is worse than the illness. Please, please involve your girlfriend, listen to her, and teach her what she won't know about diabetes. I could not be happier I took this step with my wife. If you do nothing else today, watch this video. It gives an excellent insight into the benefits of low carbing.

Best of luck, keep posting, and keep asking questions.

 

[iHs]

I would forget about a transplant for the reasons already explained. If you start to bg test before a meal, mid morning, before lunch, mid afternoon, before eve meal, before bed, you should be able to start adjusting the carb that you eat a bit more correctly so thst yr bg levels start to be controlled with sensible targets and you wont be heading towards a dialysis unit at a hospital that might be miles from where you are living. Dialysis is not nice.

Unfortunately, better control of bg levels can at times cause the hypo feeling but testing bg more often can help prevent them being severe and as long as we eat something sugary, they become manageable.

 

[novorapidboi26]

A lot of good advice there...............

do you know what your latest HbA1c was?

its time for your clinic to start advising you on how to manage it effectively and that means getting you educated and on to a multiple daily injection regime...........

twice a day is no use, I suppose there will be some that say they manage OK on it, but quite simply, the human body is far too complex for a twice a day insulin regime........

once your have been educated and start getting the right amount of insulin in you will start to see light at the end of the tunnel.............

 

[Bazzza]

Already been said here by numerous posters, you need to look after yourself first and take your insulin. Drinking all the sugary drinks you mentioned...I bet 95% of the time your hypos are just when your BG falls back into normal ranges. I thought I was having a hypo once or twice when I first started to take my insulin again, but when I checked it be like 7/8mmol/L but because I was so used to running so high all day for years on end I wasn't used to it being that low.

It seems to me at least, your having a hard time dealing with this or have never really dealt with it in terms of acceptance. I think that's why you don't care to check your BG or manage your diabetes correctly. That self-destructive behavior has already started to cause you problems and its only gonna get worse if you don't stop now, take responsibility and do what needs to be done.

A transplant wont be an end all solution/ way out of diabetes. As many other people have already said there is a host of potential heath problems/risks with transplants. Also, supposing you got it...but there was still IgG antibodies in your immune system...well they would attack your new beta cells and BOOM! your back to square one again. Your only 25 man...you still have time.

 

[iHs]

A lot of good advice there...............

do you know what your latest HbA1c was?

its time for your clinic to start advising you on how to manage it effectively and that means getting you educated and on to a multiple daily injection regime...........

twice a day is no use, I suppose there will be some that say they manage OK on it, but quite simply, the human body is far too complex for a twice a day insulin regime........

once your have been educated and start getting the right amount of insulin in you will start to see light at the end of the tunnel.............

Hang on, hang on......where have you got all this info from? Have you tried twice daily insulin? I had ok control using it for 20yrs and only changed to MDI cos I thought the grass might be greener, meaning I could do one injection instead of two. I never realised that on top of the one injection, I would also need to do 3 more.

 

[novorapidboi26]

Hang on, hang on......where have you got all this info from? Have you tried twice daily insulin? I had ok control using it for 20yrs and only changed to MDI cos I thought the grass might be greener, meaning I could do one injection instead of two. I never realised that on top of the one injection, I would also need to do 3 more.

I have tried twice a day insulin, yes, for about 9 years probably.........

OK control is what it says on the tin, but is OK good enough, well, everyone is different, so we should try to get better in my opinion....

its is only my opinion though.............i stand by it though...................

so you said you went over to MDI but expected to only inject once a day...........you realize the M in MDI stands for multiple..........?..........

 

[LucySW]

I understand your situation perfectly, becaus it bears striking parallels to how I used to be. I am 27, also diagnosed at age 3, and equally did not think much about my diabetes. And like you, I convinced myself I couldn't change ... Now Hypos are a rarity, and highs are even more rare. I now consider anything over 7.8 to be unacceptable, because I don't need to run at that level.

Gosh, Charles, what a story. Thank you for telling it, and WELL DONE for turning around and taking you'd life in hand. Awed.

 

[izzzi]

Get your self back into control and before you know it , in the next 5 to 10 years bionic pancreas and artificial pancreas will be more available.
Just look what happened to phones in last 5 years.

 

[lukus89]

Some of the replies here haven't helped at all, but Charle's thank you so much for yours.

It's quite inspiring to read about someone who's been exactly the same as myself and came out the otherside.

I've just bought the book on Amazon. I'll be giving it a read.


Again,
Thank you for your reply. Thanks for the time you put into that.

A couple of questions:

1 - Did your doctor change your insulin for you or was it all self changed? I currently use novomix twice a day, which i'm fairly sure isn't doing right good but obviously i have no blood sugar results to show this... If i was to change my diet similar to yours, would i be able to go back to one long lasting injection a day combined with a fast acting one at meal times?

2 - Most of my hunger is between meals... literally around 45 minutes after i've eaten my meal i can eat again, and it wouldn't be a small amount. Were you the same?

3 - Have you gained weight since the change? My weight is 11 Stone right now, and i'm quite slim apart from my belly.

I can't think of much else right now.

Thanks again Charles.

 

[Charles Robin]

Some of the replies here haven't helped at all, but Charle's thank you so much for yours.

It's quite inspiring to read about someone who's been exactly the same as myself and came out the otherside.

I've just bought the book on Amazon. I'll be giving it a read.


Again,
Thank you for your reply. Thanks for the time you put into that.

A couple of questions:

1 - Did your doctor change your insulin for you or was it all self changed? I currently use novomix twice a day, which i'm fairly sure isn't doing right good but obviously i have no blood sugar results to show this... If i was to change my diet similar to yours, would i be able to go back to one long lasting injection a day combined with a fast acting one at meal times?

2 - Most of my hunger is between meals... literally around 45 minutes after i've eaten my meal i can eat again, and it wouldn't be a small amount. Were you the same?

3 - Have you gained weight since the change? My weight is 11 Stone right now, and i'm quite slim apart from my belly.

I can't think of much else right now.

Thanks again Charles.

No problem at all, happy to help. Regarding insulin, I have been on my current regime for about 15 years- 1 long acting dose, and short acting at meal times. I personally think it's the best way of managing, and I have not changed this, but give much smaller doses now.
A lot of people report weight loss with low carb, but for me it was the opposite. However, I'm honestly not sure whether this was the diet change. A few months before I went low carb, I also left my job to be a self employed piano teacher. Business was very slow at first, so I had loads of free time. More often than not I was out on my bike, and was covering 100-150 miles a week. Around the time I started low carbing, business really picked up, and getting out on the bike was a much rarer occurrence. My weight went up over 8 months from 11 stone 5 to 12 stone 5. I'm now about 12 stone 2, having restructured things to get a bit more exercise in again.
Regarding hunger, I was the same as you. A meal was a distant memory an hour later, and I was well ready for the next one. Nowadays I am much easier to satisfy. I still need to exercise some self control sometimes, but it is not very difficult.
One very important point, your body will take time to adjust to low carb, and you will need to watch a couple of things. Dehydration is very common early on, so make sure to drink plenty of water. Also, you are likely eating a lot of food at the moment that has a high salt content. You will lose a lot of this on a low carb diet, and too little salt is bad just like too much. Add small amounts of salt to your meals to offset this. You will know you need more if you start getting cramp, particularly in your legs. A change in sex drive can also be common early on. Some report a massive increase, others a massive decrease. I found for a couple of weeks that my sex drive was much lower. This was temporary and a month later things were back to normal.

Well done for getting the book, be sure to read the testimonials at the front, they are very inspiring. Be sure to persevere reading it, it's a difficult pill to swallow at times. It's also a pain that it's an American book, so his blood sugar measurements use a different scale. Be sure to keep an online converter handy for easy reference.

 

[lukus89]

Thanks again Charles.
Really, thank you.

 

[Charles Robin]

Thanks again Charles.
Really, thank you.

No worries at all. Now it's up to you to get to a good place so you can help the next person in need.

 

[Nickers]

Charles what a great story made me have a good think aswell so thankyou and lukus good luck I'm sure once you have ur head around it U will be fine and get urself on the right track

 

[Ilya83]

Bad Idea! You will need to take so much drugs all the time:***: So forget it