Pancrease Transplants

[anonymous]

I was pondering how much it sucks to have your pancrease not work. I'm a 17 year old female with CF...I have to take enzymes and have CFRD. Anyways, I was thinking..."Why not get a pancrease transplant?" It would fix a lot of problems for those with CF and pancreatic insufficent. My question is, has anyone ever thought about this, what are your feelings, and if you've discussed this with your doctor, what has he/she said?They can give us new lungs, why not a new pancrease...?

 

[kybert]

i dont think there is such a thing at this stage. only islet transplants for diabetics. and they have been pretty unsuccessful from what i hear. the pancreas is far more complicated that other organs. bummer eh?

 

[anonymous]

<a target=new class=ftalternatingbarlinklarge href="http://www.iptr.umn.edu/ar_midyear2003/03_midyear_update_page_1.htm">Text</a>check out this link, click on text

 

[anonymous]

why would you want to risk the operation, and then be on immune suppression for the rest of your life, which inturn would cause more trouble then the few enzymes needed to digest your food.you have new lungs to save your life as a last option, you would have a pancrease transplant because of the incovenience of taking enzymes. The risk and the drugs wouldnt be worth it in my opinionpancreatic insufficency wont kill you, your lungs eventually do.Think all us transplant ppl would say the same, that if there was a pill to take as an alternative to a transplant we all would have jumped at the offer.just my thoughts. take carecf/18months post transplant

 

[kybert]

ok i dont know what it is with some people on here lately but lighten up. this person was only trying to get us to think about the possibility of a pancreas transplant. i mean, a successful pancreas transplant, what a discovery! it would be used for various diseases, not just cf. besides, its just discussion.<blockquote>Quote<br><hr>Think all us transplant ppl would say the same<hr></blockquote>do you think you are more right or deserving? i wonder... reminds me of the reply by 'e.a.p.' in relation to a person asking for help on their writing. they get their head bitten off just because they DONT have cf.im not going to retaliate on this one and i hope no one else does. i dont want a 2 page long argument. just want to let people know that there is alot of 'talking down' being done here to the non cf'ers or the healthier ones. i also dont want people thinking cf'ers are bunch of self righteous idiots who think they are better than everyone else. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[anonymous]

Hi, I posted the original question. Many good points have been made here. I suppose it can be viewed as more of a conveneice issue, but think about this. If you have diabetes (CFRD), that's putting your Cf in jeopardy just by itself. Whever my blood sugars get out of control (I try to do my best, but sometimes it comes second to my CF care) I ALWAYS end up developing a lung infection. I just figure getting a pancrease transplant would be well worth the risk, considering the benefit to your CF (for both diabetes and enzyme insufficency).

 

[anonymous]

Hi, The pancrease transplant is something I have often wondered also. My grandson, age 10, wcf, is not thriving due to pancreatic inefficiency. Next month he will be having surgery for a g-tube. If anyone knows, has, or experienced in anyway a child of his age with a g-tube, I would appreciate a reply. We have not had much success locating anyone close to his age. So far only adults. I have been searching and searching on the "net" for more "personal" info. Thanks.

 

[Diane]

I think a transplant.... unless it is in dire need.... would be a bad idea for a few reasons. -Some people do not survive the surgery itself-the transplant might not work-you may be taking a vital organ from someone who needs it desperately right now to stay alive-you will probably still have diabetes from the medicines you'll need to take-you may end up with worse pancreatic problems then what you previously had It is a bad idea all around, you could be asking for more problems than you already have. I agree with whoever wrote that a transplant should be only used as a last resort option, not a convenience. I know diabetes is hard to deal with sometimes, i've had it 24 years now and it isnt always easy. You just have to find a way to deal with it as best you can. Cf is what it is, diabetes or no diabetes. Take as good care of your blood sugars as you can, check them often to help keep better control. In my eyes when you have cf and diabetes, checking your blood sugars 2 or 3 times a day isnt enough. I check mine around 7 or 8 times a day to keep tighter control. Usually right before i eat, so i know how much i can eat ,and what i should avoid. If i suspect low blood sugar i check them , because sometimes high blood sugar feels like low blood sugar and can fool you ( happened many times ). If you take extra steps it can help in many ways. Transplant is too risky, stick to enzymes and insulin (if you are taking insulin ) good luck<img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Diane 39 cf / diabetes / b.cepacia

 

[anonymous]

Wouldn't it be nice if one could be injected with stem cells and within weeks have their own pancrease, lungs and heart functioning at 100%. The Rejuvinating capabilities are astronomical and countries like Singapore, India and even Germany are making great strides. Too bad stem cells are a sin and against God's (the United States) divine plan to make those with Cystic Fibrosis, Parkinsins, Diabetes and other disease's suffer.

 

[anonymous]

Kylie,I would like to know where in my answer I said I was better then anyone else on here that has CF just because I have needed a transplant.Yes this is a discussion board, which means that not every answer is going to one to which you will agree with. there are two sides to every coin.The question was asking about pancrease transplant, transplant being the operative word, so obviously you would think someone thats had a transplant might be able to relate to it just a little bit more.Dianne is right, transplanting a pancrease wont necassarily mean you wont have diabetes, because you are on steroids and anti rejection meds for life. and some people devolpe diabetes after transplant for this reason.But it seems the only one who is permitted to have a opinion is you!To make a rationale decision you need all the facts, not just hindsight.The person asked why they can give us new lungs and not a new pancrease......... I simple gave some logical reasons why in this present time they dont.so if anyone is biting anyones head off m'dear its you

 

[anonymous]

Hopefully the stem cell research ban will be lifted in the United States and clinical trials can begin on growing and replacing damaged lung tissue in PWCF. For those of you who may be interested, there is an upcoming CFRI (Cystic Fibrosis Research Inc.) Annual Education Conference at the Sofitel Hotel, in Redwood City, California, were CF Researcher Dr. Richard Mollard, PhD of Monash University, in Melbourne, Australia will discuss Stem Cells and CF and Growing New Lung Tissue to Repair Damaged Lungs.The conference will be in 4 days, but for those interested in more information, you can go to http://www.cfri.org

 

[kybert]

i agree that a pancreas transplant isnt worth it but i think you could have been a bit nicer to the first poster thats all. to me, your reply almost sounds as if your implying that the first poster is 'ungrateful' and im sure they arent. please dont turn this into a personal attack on me, im just trying to stick up for some on here because ive seen so many people getting a raw deal when it comes to posting. you can have your opinion, it doesnt bother me, im not the one who asked the question. just beee nice <img src="i/expressions/face-icon-small-smile.gif" border="0"> finito. done. over.to stem cell poster. i didnt even realise until a week or so ago that the US had such strict regulations on stem cell research. i thought they were the front runners with all this stuff. it all popped up on the news because of the politics campainging etc. it seems a shame, you guys have such good research facilities etc.

 

[RadChevy]

Hi, They do perform pancreas tx's. I know when I was waiting for lungs, there was some discussion on whether they might as well do a pancreas at the same time from the same donor. By that time I had been diabetic for about 5 years, but doing well.I think that most often those that get the pancreas, also get a kidney tx at the same time. I know a couple of women ( not CF) who had kidney, pancreas tx. I also know a woman waiting for a kidney tx, and if pancreas becomes available, they will do that too.Yeah, a great thought... talk to your doctors about it. Won't hurt to learn all the detials.Joanne SchumJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/Lungs for Life Foundationhttp://www.lungsforlife.orgJoanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelethttp://www.lungsforlife.org/other_ways/lfl_store.htm

 

[anonymous]

I think it would not really get rid of your cf its like when you get new lungs it doesnt get rid of your cf cf is in your genes so the only way to get rid of cf is gene therapy which they are trying to do but cos there are so many different gene types for cf it makes it very hard to find a cure<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I am a father of a CF son now in his late teens. He is doing well and is very active in sports.

I found this site today and after scanning the messages and threads I came across this one.

I found the comments to the original question in this thread interesting in that when my son was about 2 years old and was hospitalized we asked an intern if eventually they could just do a lung transplant later in his life – if and when he might need it.

“The intern replied – no way were still having real issues with heart transplants.”

I told my wife to ignore him, as with the new technologies I’m sure eventually science would get to a point where the heart and lungs could be transplanted!

Well this thread brought back some old memories…

I know the Pancrease is not the same as lungs as far as being required for keeping us going but it would make an improvement in the lives of many.

Remember quantum improvements could be around the corner! I agree with those that say it’s not needed… however; you never know when we could get new technologies that could make this viable!

So I say – stay positive and remember what might seem like an impossibility today does not mean they will not get there soon!

 

[anonymous]

Hi everyone...I thought this was a very interesting question...I asked a dr once myself... here's what I was told... (and take it for what it's worth... I am not a dr...only repeating what one told me)...

Pancreas transplants are done...that's not an issue...they can certainly do them for various reasons....but with CF it's a different problem. When a baby is born with CF the pancreas works fine...it makes enzymes that should be delivered to the stomach to absorb food...however, because of the extra mucus that CF patients have the ducts that are supposed to deliver those enzymes from the pancreas to the stomach are clogged with mucus and the enzymes cannot get through. After a while the body realizes that the enzymes that the pancreas is making are not being used so it stops making them altogether, basically the pancreas just stops working... I was told this could take months or years...it depends on the individual body. So basically, even if you got a new pancreas, your body still has all this extra mucus that is blocking certain ducts or tubes therefore the enzymes still would not get to the stomach. So you take them orally and they go directly to the stomach.

Hope that makes a little sense...it's easier to say than to write... And again this is what a CF dr told me a few years ago...I'm not saying it's postively correct...just what I was told when I presented this same question to the dr.

Renee