advertisement
 

  Back to Chat Pancreas Transplants

Transcript of the a Special Chat About Pancreas Transplants

For more information about pancreas transplants, visit the Insulin-Free World Foundation. Be sure to read Christian's story about getting a pancreas transplant.

Wed Aug 30 2000 20:41:43 Eastern US
Jeff Hitchcock from 206.112.197.133
Our special chat with Christian Hobbis and Deb Butterfield about pancreas transplants will begin at 21:00 Eastern. See you in a few minutes.

Wed Aug 30 2000 20:59:10 Eastern US
Charla (Mom of Eric, 9, dx'd 9/26/96) from 209.131.220.55
I'm really excited about this chat. Transplantation is something that I don't really know a lot about.

Wed Aug 30 2000 20:59:48 Eastern US
Laura (Sam's mom, 10, dx'd 8/98) from 63.31.8.239
Hey, Charla! I'm with you... not much knowledge in this area. Should be a very informative chat!

Wed Aug 30 2000 20:59:57 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Good evening everyone. It's just about time to start our chat.

Wed Aug 30 2000 21:00:43 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Hello.....

Wed Aug 30 2000 21:00:45 Eastern US
Jacque (mom of kolt dx'd 11 months ago) from 205.161.152.85
Transplantation is something you dont here alot about

Wed Aug 30 2000 21:00:52 Eastern US
Deb from 167.76.159.32
Hi Jeff! Hi everyone!

Wed Aug 30 2000 21:00:57 Eastern US
Christian from 209.252.168.133
Hello everyone

Wed Aug 30 2000 21:01:08 Eastern US
rebecca (Mom of Emily, 8, diag at 2 1/2) from 202.53.54.6
I'd like to know about the side effects of the drugs that you need to take after transplant

Wed Aug 30 2000 21:01:17 Eastern US
mnm (DE) (Mom of Jimmy, 11, dx'd 6/9/2000) from 152.163.213.53
Hi everyone

Wed Aug 30 2000 21:01:23 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
By way of introduction, Christian Hobbis has recently received a pancreas only transplant. It has cured him of his Type 1 diabetes. Deb Butterfield, our other guest, is Founder and Executive Director of the the Insulin-Free World Foundation.

Wed Aug 30 2000 21:01:38 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Hello all - I'm ready to soak up some info on a topic that I know nothing about

Wed Aug 30 2000 21:01:42 Eastern US
Deb from 167.76.159.32
THat's so true Jacque, people are rarely told about the options involving transplantation for diabetes.

Wed Aug 30 2000 21:01:50 Eastern US
Christian from 209.252.168.133
Hi Deb ! How are you ?

Wed Aug 30 2000 21:01:50 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Good evening Christian. Thanks for taking the time to chat with us tonight. Deb should be joining us momentarily.

Wed Aug 30 2000 21:01:59 Eastern US
BaBy PoPcOrN cHiCa (I am Curly:-)) from 209.144.25.204
Hi Jeff aorry to intrupt but where is that chat room going to be??

Wed Aug 30 2000 21:02:23 Eastern US
Deb from 167.76.159.32
Moon puppee, do you have insulin-dependent diabetes?

Wed Aug 30 2000 21:02:32 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
I'd be interested to hear what immunosuppression drugs you are each taking, as well as side effects you've experienced.

Wed Aug 30 2000 21:02:37 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Baby: You've found the chat about transplants.

Wed Aug 30 2000 21:02:54 Eastern US
Jacque (mom of kolt dx'd 11 months ago) from 205.161.152.85
How much recovery time is needed

Wed Aug 30 2000 21:03:06 Eastern US
BaBy PoPcOrN cHiCa (I am Curly:-)) from 209.144.25.204
deb are you the one from hawii??

Wed Aug 30 2000 21:03:09 Eastern US
Deb from 167.76.159.32
Hey Christian!!! CONGRATULATIONS!!! Go and get a candy bar and sit down to enjoy the chat! How's it going?

Wed Aug 30 2000 21:03:29 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Yes Ma'am - 2 shots a day - Humulin R & N

Wed Aug 30 2000 21:03:38 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Christian, you're likely to get a lot of questions. I'll post a transcript after we're done for everyone to review and for those who missed it.

Wed Aug 30 2000 21:03:41 Eastern US
Deb from 167.76.159.32
No, I'm orignially from Bermuda and live in St. Louis

Wed Aug 30 2000 21:04:27 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Christian, can you start out by telling us how you're doing now?

Wed Aug 30 2000 21:04:33 Eastern US
Christian from 209.252.168.133
Judith, here is the list prograf,cellcept,prednisone,cytovene,bactrim,mycelex,prilosec,coumadin,axid,zocor alot !!

Wed Aug 30 2000 21:04:47 Eastern US
Deb from 167.76.159.32
Let me give you a little background here ... pancreas transplants were first done in 1966 and today they have a usccess rate in freeing people from insulin injections of about 85 - 90%

Wed Aug 30 2000 21:04:54 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Deb - I'm in Poplar Bluff, grew up in Cape

Wed Aug 30 2000 21:05:05 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Where were your transplants done?

Wed Aug 30 2000 21:05:19 Eastern US
Christian from 209.252.168.133
Jeff I am doing great my blood sugars have been perfect for the past month avg 100 am 110pm

Wed Aug 30 2000 21:05:35 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
A lot!

Wed Aug 30 2000 21:05:44 Eastern US
Deb from 167.76.159.32
After you've had your transplant for a a few more months Christian, you'll be left with prograf and cellcept alone ... I just had the 6th anniversary of my transplant

Wed Aug 30 2000 21:05:44 Eastern US
Heather from 209.198.115.248
Christian, how has this changed your life, other then the obvious ?

Wed Aug 30 2000 21:05:55 Eastern US
Christian from 209.252.168.133
Univeristy of Maryland Dr. Stephen Bartlett

Wed Aug 30 2000 21:06:02 Eastern US
Jacque (mom of kolt dx'd 11 months ago) from 205.161.152.85
Christian, how old were you when you were diagnosed

Wed Aug 30 2000 21:06:39 Eastern US
Laura (Sam's mom, 10, dx'd 8/98) from 63.31.8.239
I'm feeling really ignorant here... How many pancreas transplants are done each year... is this becoming a more common procedure to address type 1? Or is it still considered experimental?

Wed Aug 30 2000 21:07:00 Eastern US
Christian from 209.252.168.133
Heather ....i don;t even know where to begin ...Today I went for blood work and skipped breakfast ...did'nt eat until 12:00 and no problems low bs ect

Wed Aug 30 2000 21:07:08 Eastern US
Deb from 167.76.159.32
Last year 1,500 pancreas transplants were performed ...

Wed Aug 30 2000 21:07:19 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Congrats, Deb!

Wed Aug 30 2000 21:07:30 Eastern US
Christian from 209.252.168.133
I was 14 years old

Wed Aug 30 2000 21:07:50 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Deb & Christian you both are so fortunate - good luck w/your recovery Christian

Wed Aug 30 2000 21:08:03 Eastern US
Heather from 209.198.115.248
Wow thats amazing. How young can a person be ?

Wed Aug 30 2000 21:08:04 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
forgive my stupidity,, but why trade insulin for that many drugs?

Wed Aug 30 2000 21:08:17 Eastern US
Charla (Mom of Eric, 9, dx'd 9/26/96) from 209.131.220.55
I've heard that immunosuppressant drugs increasing the risk of certain types of cancer but cannot find any details. Can either of you help out with the answer?

Wed Aug 30 2000 21:08:30 Eastern US
Christian from 209.252.168.133
Thank you I am ging back to work part time in another week

Wed Aug 30 2000 21:08:33 Eastern US
rebecca (Mom of Emily, 8, diag at 2 1/2) from 202.53.54.6
Christian, how do you feel about all those pills, and Deb how about you?

Wed Aug 30 2000 21:08:54 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Did either of you have a kidney transplant at the same time? Why did you choose to have the pancreas transplant?

Wed Aug 30 2000 21:09:30 Eastern US
Laura (Sam's mom, 10, dx'd 8/98) from 63.31.8.239
And do all the medications interfere at all with your work (what do you do if you don't mind sharing...)???

Wed Aug 30 2000 21:09:30 Eastern US
Christian from 209.252.168.133
These are side effects with almost any drug I can provide you a list later feel free to email me @ cHobbis@prodigy.net

Wed Aug 30 2000 21:10:29 Eastern US
Deb from 167.76.159.32
That is a GREAT question Maryann ... that is where the decision lies. For people who suffer from kidney failure ... 35% of the insulin-depependent population, it is an easy decision. They will need a new kidney and will need immunosuppression so there is no reason not to be free of diabetes at the same time. For a pancreas transplant alone, the questioo is whether or not you would risk the secondary complications of diabetes or take immuno drugs.

Wed Aug 30 2000 21:10:31 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Christian: How do you feel now compared to before the transplant?

Wed Aug 30 2000 21:10:34 Eastern US
Christian from 209.252.168.133
The pill taking is no problem ...quite a change from 3 shots a day

Wed Aug 30 2000 21:10:38 Eastern US
Charla (Mom of Eric, 9, dx'd 9/26/96) from 209.131.220.55
Is there information on the CWD site, or anywhere else, on this subject? Perhaps a suggested book?

Wed Aug 30 2000 21:10:40 Eastern US
Jacque (mom of kolt dx'd 11 months ago) from 205.161.152.85
Did you consider any other options before deciding the transplant?

Wed Aug 30 2000 21:11:23 Eastern US
Christian from 209.252.168.133
Jeff alot more energy....all the side effects from lows and high bs are gone !!!!

Wed Aug 30 2000 21:11:54 Eastern US
Deb from 167.76.159.32
Remember, Christian just had his transplant so he is taking alot of things ... some of them are to prevent viruses etc... when you have had a transplant for a while you take only a few pills .. the same as with islet cell recipients.

Wed Aug 30 2000 21:11:55 Eastern US
Christian from 209.252.168.133
Yes the pump...but it did'nt go that way ...

Wed Aug 30 2000 21:12:12 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Deb, how do you feel too?

Wed Aug 30 2000 21:12:16 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
where do you begin - how did you get so lucky

Wed Aug 30 2000 21:12:36 Eastern US
Christian from 209.252.168.133
Thank you Deb ...that is true in the long run I will only have to be on a few meds

Wed Aug 30 2000 21:13:07 Eastern US
Brigitte (friend of Christian's mom) from 152.163.197.84
Christian, congratulations for your courage and for being so persistant. It shows, if you are determined enough, there can be solutions. You are to be congratulated. All the best and continued good health.

Wed Aug 30 2000 21:13:17 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Some of the drugs Christian takes are to thin the blood, prevent infection, reduce gastric acid, etc.

Wed Aug 30 2000 21:13:36 Eastern US
Christian from 209.252.168.133
I had an arguement with a parent on this web site in the parent chat room ...some one saw it and told Deb and the rest is history

Wed Aug 30 2000 21:13:56 Eastern US
Deb from 167.76.159.32
I feel really terrific ... as good as a 40 year old can!!?? I travel all the time, work 14 hour days, eat whatever and whenever I want ... couldn't be better ... all the complications have reversed and I am left only with some trouble with balance

Wed Aug 30 2000 21:14:04 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
I take Prilosec myself and must say it's a miracle drug.

Wed Aug 30 2000 21:14:56 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Deb and Christian, if a young adult with Type 1 came to you for advice about seeking a pancreas only transplant, what would you tell them?

Wed Aug 30 2000 21:15:05 Eastern US
Christian from 209.252.168.133
I have gone crazy with the food yet ...still stuck in the diabetic mode 15 yrs is hard to break

Wed Aug 30 2000 21:15:26 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Deb - please fill me in - where do you begin?

Wed Aug 30 2000 21:15:50 Eastern US
Christian from 209.252.168.133
To explore all their options and see what is right for them it is a personal choice

Wed Aug 30 2000 21:15:58 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Did you have any complications, Christian? Why did you decide to risk the side effects of immunosuppression?

Wed Aug 30 2000 21:16:12 Eastern US
Jacque (mom of kolt dx'd 11 months ago) from 205.161.152.85
I imagine it would be hard to break old habits

Wed Aug 30 2000 21:16:38 Eastern US
Charla (Mom of Eric, 9, dx'd 9/26/96) from 209.131.220.55
First thing Eric plans on doing when he's cured, and he will be, is eating "until he pops" at Dairy Queen!

Wed Aug 30 2000 21:17:06 Eastern US
Christian from 209.252.168.133
My bellie has been a little upset ...but that is all

Wed Aug 30 2000 21:17:13 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Christian, you decided that a transplant was your best option. Did you have difficulties with blood sugar control before the transplant?

Wed Aug 30 2000 21:17:21 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
Did both of you have some complications? is that why you took the plunge?

Wed Aug 30 2000 21:17:23 Eastern US
Deb from 167.76.159.32
Without question I would tell them to learn about it ... go for an evaluation and I'll tell you why... soon there will not be pancreases available for transplants ... either pancreas or islet transplants... the technology to develop alternative supplies is further away .. I wouldn't want to be caught in that gap. People who have not looked into the option and are not on waiting lists have made the decision not to have a transpalnt. People who are prepared have a choice.

Wed Aug 30 2000 21:18:41 Eastern US
Christian from 209.252.168.133
I was only on the waiting list for two weeks...
Blood type AB helped alot

Wed Aug 30 2000 21:18:58 Eastern US
Heather from 209.198.115.248
Deb, When was your transplant ?

Wed Aug 30 2000 21:19:09 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Good advice Deb.

Is there an age at which transplants aren't done? I'm thinking young people, in their teens or twenties.

Wed Aug 30 2000 21:19:14 Eastern US
Deb from 167.76.159.32
Yes Maryann ... I waited too long. NOt as long as many, but too long. Today it would have been different because the success rates are so high ... in my day, pancreas transplants alone weren't as common. Also, I didn't have enough information to know to act sooner... that is one of the reasons I started the Insulin-Free World Foundation so that people could have access to the information they need to make an informed decsion.

Wed Aug 30 2000 21:19:45 Eastern US
Christian from 209.252.168.133
I have had alot of problems with my eyes ...many lazor treatments ...but still have 20/20 vision

Wed Aug 30 2000 21:19:51 Eastern US
Charla (Mom of Eric, 9, dx'd 9/26/96) from 209.131.220.55
What is the norm for being on the waiting list?

Wed Aug 30 2000 21:20:26 Eastern US
Deb from 167.76.159.32
Pancreas transplants are rarely done in children and only then in really extenuating circumstances... the oldest recipient was 67 at teh time of transplant

Wed Aug 30 2000 21:20:40 Eastern US
moonpuppee (w/f/30 dx'd at 26) from 64.209.134.133
Deb - what is your e-mail address?

Wed Aug 30 2000 21:20:51 Eastern US
Christian from 209.252.168.133
Deb was a great resource for me ...I could not have gotten all this done without her help ..and
her Web site

Wed Aug 30 2000 21:21:22 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
I'm amazed that a person of 67 would have been considered at all for a transplant.

Wed Aug 30 2000 21:21:34 Eastern US
Deb from 167.76.159.32
Waiting list time varies ... for a pancreas/kidney "O" blood type, about 3 years now at the larger centers ... for a pancreas alone, about 3 - 6 months.

Wed Aug 30 2000 21:22:05 Eastern US
Christian from 209.252.168.133
I has shared a room with an 80 yr old man who got two new kidneys and is doing fine

Wed Aug 30 2000 21:22:07 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
I agree with Christian: Deb's site is the best resource for transplant information:
www.insulinfree.org

Wed Aug 30 2000 21:22:16 Eastern US
Melissa from 167.76.159.32
How long does it take before the complications start getting better after a pancreas tranplant?

Wed Aug 30 2000 21:22:36 Eastern US
Deb from 167.76.159.32
Thanks Christian ... I am sooo happy it all worked out for you so quickly!!

Wed Aug 30 2000 21:23:02 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
I understand anti-rejection drugs, but I don't understand what keeps the new pancreas from getting attacked like the original one did stop too

Wed Aug 30 2000 21:23:07 Eastern US
Deb from 167.76.159.32
WOW!! what an 80 year old ...

Wed Aug 30 2000 21:23:09 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
If in fact there is such a shortage of organs (and there is) HOW can anyone justify giving 2 kidneys to an 80y/o??!!!

Wed Aug 30 2000 21:23:35 Eastern US
Heather from 209.198.115.248
I am thrilled for both of you. Jeff, i have to go do a ck....will you be able to post a transcript or something?

Wed Aug 30 2000 21:23:49 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
And why TWO? One is all that is usually transplanted/needed.

Wed Aug 30 2000 21:23:58 Eastern US
Christian from 209.252.168.133
He was a really nice guy and recieved his Kidneys from a young child

Wed Aug 30 2000 21:24:51 Eastern US
Christian from 209.252.168.133
He had been on the list for 3 years...Everyone has a chance

Wed Aug 30 2000 21:25:00 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Heather: A transcript will be posted shortly after we finish tonight.

Wed Aug 30 2000 21:25:03 Eastern US
Kathy/Ohio (Tom - 16, dx'd at age 9) from 131.238.90.201
Hello....Christian and Deb, what percentage of the procedure did your insurance cover?

Wed Aug 30 2000 21:25:21 Eastern US
Christian from 209.252.168.133
They were from a Baby that had passed

Wed Aug 30 2000 21:25:24 Eastern US
Deb from 167.76.159.32
Maryann, the deal is this.... the drugs we take to prevent the organs from rejecting also stop the autoimmune process that causes diabetes. In fact, I had some tests done a few years ago because I was on very low immuno. and my organs were really stable .. we wanted to lower the immuno and learned that I still had a strong autoimmune problem and that the diabetes would return ... now Dr. Kevan Herold is actually doing studies to prevent diabetes using immunosuppression therapy!

Wed Aug 30 2000 21:25:32 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
So the kidneys were small for his body size...but still don't understand why they didn't go to a young person....no matter how nice he is!

Wed Aug 30 2000 21:25:50 Eastern US
Christian from 209.252.168.133
100% or so they told me ....

Wed Aug 30 2000 21:25:52 Eastern US
Brigitte (friend of Christian's mom) from 152.163.197.84
Christian, I have heard on CNN that the medical research team is very close to finding a cure for diabetics by injecting cells into the liver. Have you investigated this option versus a transplant?

Wed Aug 30 2000 21:26:12 Eastern US
Heather from 209.198.115.248
Thanks !! and thanks to you Christian and Deb :)

Wed Aug 30 2000 21:26:21 Eastern US
Christian from 209.252.168.133
He must have been the best match in the country

Wed Aug 30 2000 21:27:39 Eastern US
Christian from 209.252.168.133
Brigitte , yes I did University of Maryland is going to be one of the hospitals ....but
My doctor said it is going to be several years before that comes about

Wed Aug 30 2000 21:28:16 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Deb, how many hospitals in the US perform pancreas transplants?

Wed Aug 30 2000 21:28:43 Eastern US
Deb from 167.76.159.32
Those are god like decisions Judith. Imagine being a surgeon and having to decide who to give an organ to? The waiting system now decides ... that is run by the United Network of Organ Sharing ... it is a consolidation of the thoughts and wishes of patients, the public, donor families, recipients and more.

Wed Aug 30 2000 21:29:17 Eastern US
Deb from 167.76.159.32
More than 200 hospitals now in the US do pancreas transplants... there is a list of them at insulinfree.org

Wed Aug 30 2000 21:29:39 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
Yes, and I thought some new guidelines had just gone into effect, to make the selection process more equitable.

Wed Aug 30 2000 21:30:21 Eastern US
Christian from 209.252.168.133
Deb how many people and currently waiting for pancreas /kidney transplants in the US

Wed Aug 30 2000 21:30:45 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Deb and Christian, would you both recommend a pancreas transplant as a way of curing Type 1 for adults with diabetes who don't need a kidney also?

Wed Aug 30 2000 21:31:05 Eastern US
Minimed508 from 207.77.84.66
new rooom ehhy?

Wed Aug 30 2000 21:31:37 Eastern US
Christian from 209.252.168.133
yes, yes , yes , yes !!!!!!!! But it is a personal choice

Wed Aug 30 2000 21:31:48 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Minimed: It's a special room to discuss transplants. Welcome.

Wed Aug 30 2000 21:31:49 Eastern US
Deb from 167.76.159.32
the new guidleines mostly affected liver distribution. The distribution of pancreases has worked very well because there are currently more organs than recipients.. the problem is that there are 5,000 donor pancreases available per year, 1,500 are used for pancresses and the rest are wasted... There is a real disincentive for organ procurement organizations (OPOs) to recover the pancreases for islet transplants .. that is a real problem that we are addressing.

Wed Aug 30 2000 21:32:33 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
how long have you each had diabetes and what have your a1c's run over the yrs?

Wed Aug 30 2000 21:32:39 Eastern US
Christian from 209.252.168.133
Why was I going to wait until my kidneys went bad
I didnt want to tkae that chance.

Wed Aug 30 2000 21:33:30 Eastern US
Christian from 209.252.168.133
15 years ...a1c.s have been all over the place

Wed Aug 30 2000 21:33:45 Eastern US
Deb from 167.76.159.32
I think it needs to be clear that a pancreas transplant is not a cure. Sure, blood sugars are normal, we don't need insulin, we can eat whatever, we don't test our blood sugars,BUT .... pancreas transpalnts are BIG surgeries and currently require that you take drugs to prevent rejection, so it is not really a complete cure technically speaking.

Wed Aug 30 2000 21:34:56 Eastern US
Christian from 209.252.168.133
I can't even begin to tell you the number of times that I passed out due to lows over the yreas. Several trips to the hospital ...rough on my parents

Wed Aug 30 2000 21:35:06 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Deb~I thought you still had to do regular sugar checks. Is this not true?

Wed Aug 30 2000 21:35:12 Eastern US
Kathy/Ohio (Tom - 16, dx'd at age 9) from 131.238.90.201
Do insurance companies balk at covering the procedure unless the situation is critical?

Wed Aug 30 2000 21:35:41 Eastern US
Robin from 205.188.197.46
I heard you have to take a LOT of drugs to prevent rejection

Wed Aug 30 2000 21:35:45 Eastern US
Deb from 167.76.159.32
I had diabetes fro 24 years ... they didn't do Aics when I was diagnosed at the age of 10. Meters were available when I was 15 and I did really well until nerve damage set in. Then the food I ate didn't digest properly .. I would take my insulin, eat and the food wouldn't digest for 15 hours! so i'd go low ... into the 20s sometimes and then shooting up high

Wed Aug 30 2000 21:36:11 Eastern US
Christian from 209.252.168.133
Test surgery was major...I don;t remember much about my first days in the hospital but was out in about 10 days

Wed Aug 30 2000 21:36:53 Eastern US
Pancreas from 205.188.200.192
It seems to me that a transplant is an option that needs quite a lot of thought. Yes your blood sugars are normal, but taking antirejection medications for the rest of your life has other consequences

Wed Aug 30 2000 21:37:28 Eastern US
Deb from 167.76.159.32
No Lisa ... there are much more refined ways to detect rejection that with sugar checks ... if the sugar is high, the pancreas is alreaady gone, so once a month we go to the lab to have amylase tested to make sure that the organs aren't rejecting. Rejection can be treated if it's caught early.

Wed Aug 30 2000 21:37:42 Eastern US
Christian from 209.252.168.133
prograf , cellcept and prednisone are the major anti-rejection drugs

Wed Aug 30 2000 21:38:06 Eastern US
Brenda H. from 10.0.1.3
Christian, did your family support your decision wholeheartedly?

Wed Aug 30 2000 21:38:15 Eastern US
Deb from 167.76.159.32
Exactly right "Pancreas" ... taking insulin for the rest of your life has consequences too ... it's knowing when to act that is critical

Wed Aug 30 2000 21:38:36 Eastern US
Christian from 209.252.168.133
Most rejections may just require an adjustment to your meds

Wed Aug 30 2000 21:38:41 Eastern US
Robin from 205.188.197.46
Yeah they're immunosupressants so you catch every little bug that goes by........

Wed Aug 30 2000 21:39:12 Eastern US
Christian from 209.252.168.133
My family was a bit scared for me at first ..but very supportive

Wed Aug 30 2000 21:39:32 Eastern US
Pancreas from 205.188.200.192
If our of the 5000 available organs only 1500 are used, why is transplant not more common and available to patients?

Wed Aug 30 2000 21:39:54 Eastern US
moonpuppee (f/30 dx'd at 26) from 64.209.134.133
Christian

Wed Aug 30 2000 21:39:55 Eastern US
Christian from 209.252.168.133
Maybe ....not problems yet but that is something that I will have to deal with

Wed Aug 30 2000 21:40:30 Eastern US
moonpuppee (f/30 dx'd at 26) from 64.209.134.133
who is your Dr.? & what city?

Wed Aug 30 2000 21:40:32 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Deb, have you found the immunosuppression to be a problem? Catching colds and things like that?

Wed Aug 30 2000 21:40:43 Eastern US
Robin from 205.188.197.46
Christian, where did you have this done?

Wed Aug 30 2000 21:40:45 Eastern US
Christian from 209.252.168.133
The organs have to be the best match possible

Wed Aug 30 2000 21:40:52 Eastern US
Deb from 167.76.159.32
not true robin. In fact, many of us notice that infections heal more quickly than when we had diabets ... also, you just don't get them as often. As far as colds ... i hardly ever get them even when everyone around me does.... it's a personal decision theough ... the best thing to do is to know about it ...

Wed Aug 30 2000 21:41:24 Eastern US
Christian from 209.252.168.133
robin ...at the University of Maryland ...lucky to have them close by

Wed Aug 30 2000 21:41:39 Eastern US
Flintstones3 (Mom of Seth, 2.5, dx 11/99) from 12.68.7.119
Hello Christian, how long was the time of surgery for the transplant?

Wed Aug 30 2000 21:41:42 Eastern US
Brenda H. from 10.0.1.3
Christian, do you find that you don't visit cousin Suzy if her son has strep or a similar sitution? That part should be easy, but how do you avoid germs on the bus, at McDonald's, etc? (Not really expecting an answer to that second one!)

Wed Aug 30 2000 21:42:11 Eastern US
Brenda H. from 10.0.1.3
You're talking about Univ. Hospital in Baltimore?

Wed Aug 30 2000 21:42:15 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
recap. how long have you had your new pancreas Deb?

Wed Aug 30 2000 21:42:24 Eastern US
Robin from 205.188.197.46
That's why I chat Deb,learn something new every time!

Wed Aug 30 2000 21:42:34 Eastern US
Deb from 167.76.159.32
"Pancreas" ... the main reason not more pancreases are done is that people don't know about them and the information they get about immunosuppression and success rates is dated.

Wed Aug 30 2000 21:43:03 Eastern US
Christian from 209.252.168.133
I am not really that worried about it ...I may wash my hands alot more than before

Wed Aug 30 2000 21:43:04 Eastern US
Deb from 167.76.159.32
I've had my pancreas for 6 years now.

Wed Aug 30 2000 21:43:10 Eastern US
Eva B from 205.188.200.192
Can any one of you comment on your experience taking the antirejection medications?

Wed Aug 30 2000 21:43:58 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Do you think that by the time Jace, (4), is old enough that this will be more of a common thing?

Wed Aug 30 2000 21:44:13 Eastern US
Deb from 167.76.159.32
That is sooo funny Christian! When I first had my pancreas transplant, I made my husband brush his teeth before he kissed me! I think he would have made me have my organs removed if I hadn't gotten over that!!

Wed Aug 30 2000 21:44:19 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
did insurance pay for the surgery and all the drugs?

Wed Aug 30 2000 21:44:21 Eastern US
Christian from 209.252.168.133
University of Maryland has close to a 97% success rate after 1 year ....average organ life around 10 years

Wed Aug 30 2000 21:44:51 Eastern US
ms from 152.163.206.176
christian, perhaps i missed it, but... what drew you toward having the procedure done? I am in MD - who is your doctor if i may ask?

Wed Aug 30 2000 21:45:05 Eastern US
Flintstones3 (Mom of Seth, 2.5, dx 11/99) from 12.68.7.119
and then what, after the 10 years? Another transplant?

Wed Aug 30 2000 21:45:10 Eastern US
Deb from 167.76.159.32
Lisa, for Jace there will be islets ... pancreases are great, but they are only a start ... science is advancing sooooo fast .. there will be islets, maybe even cell regeneration for Jace

Wed Aug 30 2000 21:45:16 Eastern US
Christian from 209.252.168.133
Small co-pay $5.00 for some meds

Wed Aug 30 2000 21:45:22 Eastern US
Jeff Hitchcock (Marissa, almost 13, dx'd at 24 months) from 206.112.197.133
Is that success rate common in the US? What about other parts of the world?

Wed Aug 30 2000 21:45:39 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
So, you are both realistically looking at having this major surgery done every 10 yrs? And if the supply by that time is less than demand, where will you be on the priority list?

Wed Aug 30 2000 21:45:46 Eastern US
Eva B from 205.188.200.192
If the average life of an organ is 10 years, does this mean you will need a new one or start using insulin again? How many transplants can a person have?

Wed Aug 30 2000 21:46:18 Eastern US
Christian from 209.252.168.133
Dr. Stephen Bartlett...I really wanted a better quality of life ...And to be able to avoid all the long term complications from diabetes

Wed Aug 30 2000 21:47:14 Eastern US
Deb from 167.76.159.32
What is your source on the average life of "an organ" being 10 years ... and what kind of organ are you talking about?

Wed Aug 30 2000 21:47:54 Eastern US
Christian from 209.252.168.133
I was told that at the hospital ...?? Pancreas

Wed Aug 30 2000 21:48:34 Eastern US
Christian from 209.252.168.133
I could be wrong Deb ..

Wed Aug 30 2000 21:50:22 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 63.162.254.106
And of course then you'd have to start all over with all the anti-rejection drugs, as the new pancreas would have different antigenicity....

Wed Aug 30 2000 21:50:23 Eastern US
ms from 152.163.206.176
never heard of Dr. Bartlett - is he the endocrinoligist? HOw long had you had diabetes prior to the the transplant? any complications prior?

Wed Aug 30 2000 21:50:36 Eastern US
Eva B from 205.188.200.192
can you get islet transplant if your current transplanted pancreas fails?

Wed Aug 30 2000 21:51:04 Eastern US
Heather S. (daughter Stephanie, 14, dx'd at 3) from 205.188.200.39
I really admire you both...major surgeries, rejection worries, more meds...is your quality of life that much better and how?

Wed Aug 30 2000 21:51:29 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
and what is the web sight you mentioned? are there people there that have had it done also that skeptics like us can talk to ?

Wed Aug 30 2000 21:51:40 Eastern US
Lynn from 152.163.205.10
Deb,Christian, do the drugs make you feel bad ?

Wed Aug 30 2000 21:52:37 Eastern US
Deb from 167.76.159.32
Oh Christian, how gloomy ... there are alot of people with pancreases that have lasted longer than that ... and with today's protocols they have extrapolated from current stats to show that pancreases are expected to last longer!

Wed Aug 30 2000 21:53:01 Eastern US
Brenda H. from 10.0.1.3
Christian, did you consider the new islet transplantation procedure developed in Alberta, or had you already made up your mind when the news of that process was made public in June?

Wed Aug 30 2000 21:53:41 Eastern US
Christian from 209.252.168.133
Sorry system issues I am back

Wed Aug 30 2000 21:53:44 Eastern US
Deb from 167.76.159.32
Maryann, if you got to diabetesportal.com you will find alot of info on this ... being skeptical is a really good thing ... it is a big decision and one that needs a lot of research.

Wed Aug 30 2000 21:54:07 Eastern US
Daniel (pump user) from 24.164.36.229
Are you more prone to infection and disease with the immune suppresant drugs? Was it worth it?

Wed Aug 30 2000 21:54:14 Eastern US
Deb from 167.76.159.32
Lynn, the drugs have never bothered me.

Wed Aug 30 2000 21:54:26 Eastern US
Brenda H. from 10.0.1.3
Deb, do you expect your new pancreas to last "forever?" Obviously, your body has not rejected it, but since it is "foreign" can it later degrade or stop functioning?

Wed Aug 30 2000 21:54:35 Eastern US
Christian from 209.252.168.133
I will most likely be several years before that will be avaiable

Wed Aug 30 2000 21:55:15 Eastern US
Robin (son Jay,16 dx'd about a week ago) from 205.188.197.46
Christian,how do the drugs make you feel?

Wed Aug 30 2000 21:55:26 Eastern US
Christian from 209.252.168.133
Lynn ...they take some getting us to ...but overall I feel great ...the best I have felt in 15 yrs

Wed Aug 30 2000 21:56:20 Eastern US
Deb from 167.76.159.32
Daniel, my first transplant failed. Everything that could go wrong, did. Knowing the downside, I decided to do it again .. the reason was that I also had lived with the downside of diabetes. ... i really can't stress enough though, that people have to go and talk to a specialist at a transplant center to learn about the risks and benefits to them as an individual.

Wed Aug 30 2000 21:57:04 Eastern US
Daniel (pump user) from 24.164.36.229
thank you Deb :-) the more I hear the more I want it!

Wed Aug 30 2000 21:57:11 Eastern US
linda from 216.128.25.233
deb, my sister is 40 -dx'd at 9. She has only 25% function in both kidneys. Doctors advised dialysis, but now say due to no further changes - no dialysis. Can you advise- what should her considerations be at this point? Should transplant be explored or leave well alone?

Wed Aug 30 2000 21:57:16 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
HEATHER S. - MY COUSIN CHRISTIAN - WHO I AM VERY PROUD OF - WAS DX W/ DIABETES AS A TEEN - WHAT WERE THE SIGNS THAT LEAD YOU TO TEST YOUR CHILD AT THREE?

Wed Aug 30 2000 21:57:33 Eastern US
Maryann (daughter Jill, 15 dx'd 96) from 63.23.174.25
I apreciate people willing to try different things!! this has been a good chat, if it weren't for the chat room Jill would not be pumping now.

Wed Aug 30 2000 21:57:49 Eastern US
Deb from 167.76.159.32
I don't expect mine to last forever Brenda ... in my particular situation, I'm not sure I expect it to last more than another five years, but I hope that by the time I need another one, islets will be ready.

Wed Aug 30 2000 21:57:52 Eastern US
Christian from 209.252.168.133
I want to thank Deb and Jeff for helping so many diabetics with their web sites !!! We should all be very greatful to them both !!!

Wed Aug 30 2000 21:58:21 Eastern US
Christian from 209.252.168.133
Hey Kathy !!!

Wed Aug 30 2000 21:58:59 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
I LOVE YOU !

Wed Aug 30 2000 21:59:09 Eastern US
Heather S. (daughter Stephanie, 14, dx'd at 3) from 205.188.200.39
KathyKlein-she had the classic symptoms:excessive thirst, excessive hunger, excessive urination

Wed Aug 30 2000 21:59:31 Eastern US
Brenda H. from 10.0.1.3
Deb and Christian--do you think that our kids with diabetes may have a better chance at "surviving" with diabetes, i.e. fewer complications, given the newer technologies available to us/them? Obviously, before meters you were doing more guesswork about your BG and pumps haven't been around all that long.

Wed Aug 30 2000 21:59:56 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Deb~That must have been a big step to do it again. Were you afraid of another rejection?

Wed Aug 30 2000 22:00:04 Eastern US
Flintstones3 (Mom of Seth, 2.5, dx 11/99) from 12.68.7.119
Deb is pregnancy an option with the medicaions you are taking?

Wed Aug 30 2000 22:00:10 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
MY DAUGHTER AS YOU KNOW IS HAVING CERTAIN REATIONS TO FOODS - COULD THAT BE A SIGN?

Wed Aug 30 2000 22:00:25 Eastern US
Deb from 167.76.159.32
oh Linda ... you're sister should go as fast as possible to a pancreas tranpslant center .... that is terrible to think that in this day and age any doctor would recommend that an insulin-dependent diabetic go onto dialysis before looking in to a transplant ... that is just terrible.

Wed Aug 30 2000 22:00:41 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
HEATHER - HOW WAS HER BEHAVIOR?

Wed Aug 30 2000 22:01:24 Eastern US
Deb from 167.76.159.32
Flinstones ... I have several very good friends who are pancreas recipients who have had babies ... the immunosuppression drugs are modified during the pregnancy.

Wed Aug 30 2000 22:01:29 Eastern US
linda from 216.128.25.233
but doesn't it take a long time to get on a list?

Wed Aug 30 2000 22:01:58 Eastern US
Christian from 209.252.168.133
Technologies are advancing so fast ...islet cells ect ...The survival rate is so much better that the past

Wed Aug 30 2000 22:02:29 Eastern US
Deb from 167.76.159.32
Interesting psychology Lisa .. for the first transplant I was afraid of the surgery and the immunosuppression, for the second I was afraid that the transplant would fail and I would be diabetic again!

Wed Aug 30 2000 22:03:11 Eastern US
Christian from 209.252.168.133
It took me only one day to be put on the list once my insurance was approved ...then only two weeks to get the organ...it was from Oregon

Wed Aug 30 2000 22:03:17 Eastern US
Brenda H. from 10.0.1.3
Linda, I don't know the answer, but I suspect the wait time is AFTER you get on the list.

Wed Aug 30 2000 22:03:38 Eastern US
Deb from 167.76.159.32
Linda, call me at the office tomorrow okay? Our number is 1-888-RING-IFW ... I will help to get your sister in to see someone.

Wed Aug 30 2000 22:04:16 Eastern US
Brenda H. from 10.0.1.3
Deb, I think your phone will be very busy tomorrow!

Wed Aug 30 2000 22:04:22 Eastern US
Christian from 209.252.168.133
Deb you are the greatest !!!

Wed Aug 30 2000 22:05:24 Eastern US
Deb from 167.76.159.32
You should see how busy the phones are with islet registrations! If you don't get a person, leave a message ... we return all our calls in a day.

Wed Aug 30 2000 22:05:25 Eastern US
Jeff Hitchcock from 206.112.197.133
Christian and Deb, thank you very much for taking time to share your experiences and wisdom with us tonight.

Wed Aug 30 2000 22:05:31 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Deb~I remember talking to your mom about a year ago. She was very positive about Jace's future with Diabetes. How you see the future for children with Diabetes as far as transplants go?

Wed Aug 30 2000 22:05:38 Eastern US
Heather S. (daughter Stephanie, 14, dx'd at 3) from 205.188.200.39
KathyKlein:Her behavior was normal..but if you are concerned and have a family member with type1 just get her screened through the Diabetes Prevention Trial Type 1

Wed Aug 30 2000 22:05:52 Eastern US
linda from 216.128.25.233
Thank you. I wil call tomorrow. I t sounds like she needs to find better care in Boston.

Wed Aug 30 2000 22:05:53 Eastern US
Flintstones3 (Mom of Seth, 2.5, dx 11/99) from 12.68.7.119
Deb, when your first transplant failed, were you in a life threatening position, and how long between the first ans second transplant?

Wed Aug 30 2000 22:05:55 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 137.118.30.47
Thanks, Deb and Christian, and best of luck to you both.

Wed Aug 30 2000 22:05:55 Eastern US
moonpuppee (f/30 dx'd at 26) from 64.209.134.133
Christian - do you have an estimate for the final bill?

Wed Aug 30 2000 22:05:58 Eastern US
Jeff Hitchcock from 206.112.197.133
I'll post a transcript of this chat within the hour. It will be available via a link on the main chat page.

Wed Aug 30 2000 22:06:18 Eastern US
Deb from 167.76.159.32
Christian .. I am sooo happy that you are insulin-free ...

Wed Aug 30 2000 22:06:19 Eastern US
Christian from 209.252.168.133
Thank you for giving me the chance to share my transplant with others ...I hope this has helped some of you.

Wed Aug 30 2000 22:06:38 Eastern US
Christian from 209.252.168.133
Alot of $$$$$$$$

Wed Aug 30 2000 22:06:41 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Thanks Christina and Deb! Good luck to you both!

Wed Aug 30 2000 22:06:55 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 137.118.30.47
Thanks, Jeff and Brenda!

Wed Aug 30 2000 22:07:09 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
HEATHER S. - SHE DOES HAVE THOSE SIGNS - BUT ALSO VERY BAD BEHAVIOR - I AM LOOKING AT EVERYTHING FROM ADHD TO DIABETES

Wed Aug 30 2000 22:07:09 Eastern US
Deb from 167.76.159.32
Jeff, thank you sooo much for this program and for your TERRIFIC webistes! You do so much great work for all of us in the diabetic communtiy ... thank you VERY much!

Wed Aug 30 2000 22:08:02 Eastern US
Christian from 209.252.168.133
Thank you again Deb I will talk to you soon...
and thank you Jeff after all it was through your site that this all started for me !!!

Wed Aug 30 2000 22:08:03 Eastern US
Judith (David, 14, dx'd at age 2 months; Vanya, 16, dx'd at 6) from 137.118.30.47
KathyK, take your child to the doctor for blood tests if there is any question that she has diabetes or some other condition.

Wed Aug 30 2000 22:08:03 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Sorry! Thank you CHRISTIAN and DEB!!

Wed Aug 30 2000 22:08:14 Eastern US
Jeff Hitchcock from 206.112.197.133
Thanks Deb. You're too kind.

Thanks to everyone who stopped by. I'll keep this room open for a few more minutes, but I recommend that everyone adjourn to another room to continue chatting.

Wed Aug 30 2000 22:08:16 Eastern US
Heather S. (daughter Stephanie, 14, dx'd at 3) from 205.188.200.39
Jeff, can't thank you enough

Wed Aug 30 2000 22:08:20 Eastern US
Lisa (Mom to Jace, 4, dx'd 9/28/98) from 209.90.103.1
Thank you Jeff!

Wed Aug 30 2000 22:08:21 Eastern US
moonpuppee (f/30 dx'd at 26) from 64.209.134.133
Christian - can I e-mail you for more info?

Wed Aug 30 2000 22:09:05 Eastern US
Christian from 209.252.168.133
That sounds great !!! cHobbis@prodigy.net

Wed Aug 30 2000 22:09:19 Eastern US
Eva B from 205.188.200.192
Good luck to you both and thank you for sharing your experiences

Wed Aug 30 2000 22:11:28 Eastern US
Christian from 209.252.168.133
Take care everyone ...good health to all !!!!

Wed Aug 30 2000 22:12:18 Eastern US
KATHYKLEIN (CHRISTIANS COUSIN) from 205.188.196.51
TO ALL - GOD BLESS - CHRISTIAN - WE'RE ALL SO PROUD - THANKS FOR TAKING THE TIME TO HELP OTHERS!!

Wed Aug 30 2000 22:12:27 Eastern US
Jeff Hitchcock from 206.112.197.133
Room closing ....



                 
  Home Return to Top

Last Updated: Thursday August 29, 2002 21:04:28
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.

This site is published by T-1 Today, Inc. (d/b/a Children with Diabetes), a 501c3 not-for-profit organization, which is responsible for its contents.
By using this site, you agree to our Terms of Use, Legal Notice, and Privacy Policy.
© Children with Diabetes, Inc. 1995-2015. Comments and Feedback.