Looking for other pancreas only transplant recipients

Posted by Donna N @donnan, May 29, 2018

Had my transplant almost 2 years ago. I would like to connect with others.

@donnan

Meant to type help others

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@Donna LMBO I took it as bringing others on board like when one hails a cab.

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I like that too. I’m glad I found Mayo Clinic Connect.

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@donnan Thank you

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@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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@rosemarya

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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Although I'm not a pancreas transplant, I have had many years of pancreatitis. I've been blessed that it has subsided. It all started when my gallbladder went bad, at the same time my pancreas troubles started. After many stays at weeks at a time in the hospital and stents placed and removed my pancreas has since settled down. Currently I'm working on a kidney transplant due to PKD.

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@rosemarya

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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Not sure if I can be helpful. I was a brittle type 1 diabetic for almost 51 years. Had pancreas transplant almost 2 years ago. Please ask any questions and I will try to be helpful. @donnan

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@rosemarya

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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@rosemarya, Thank you for the intro. I am pasting what I posted in endocrinology group: I was dx'ed with chronic pancreatitis about a dozen years ago. I am very familiar with all of the attending symptoms, but one seems to have gotten much worse of late. Nausea is very common with pancreatitis, but in my case, it typically comes and goes. In the last six weeks, It has been severe and constant from the minute I wake up until I go to sleep and that usually does not last nearly long enough (my sleep time is short is what I am trying to say). I am diabetic and it has been a real struggle to eat enough to keep my blood sugar from going too low and have any energy at all. I have used Phenergan, Zofran and the Transderm Scop patches and only Phenergan gives the slightest relief.

I guess my questions are; Has anyone experienced a significant increase in nausea related to chronic pancreatitis? If so, were you and a physician able to discover anything that may have been the culprit? What action was taken either knowing the reason or just treating nausea without knowing the root cause?
Thanks, Gary

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@2011panc

@donnan Please do a search for my name and you will find my story, which is somewhat similar to the beginning of @cehunt57's post. Please let us know how you are doing and what questions you may have. We will do our best to help you.

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@2011panc, I saw in an earlier post that you are Sophie, but don't know your last name to do a search. How else could I do a search to see your story as I am very interested in hearing from anyone with a transplant or chronic pancreatitis?
Thanks, Gary

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@cehunt57

@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

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@2011panc, @cehunt57, @donnan, Thank you all for posting your history pre and post-transplant. I do not have as much difficulty managing my blood sugar as you all recount, but I don't leave home very often, so that makes it much easier, but does not do much for social interactions. I also have a pretty high avg pain level (5-8 most days and higher on occasion) and h=terrible nausea related to my pancreatitis. Has transplant alleviated the other symptoms of chronic pancreatitis? Were you taking enzyme supplements prior to transplant and have you needed them afterward? I also appreciate your willingness to talk about your faith. I rely heavily on my walk with God as He is the one who is always there when I feel isolated from my illness. What is the burden of anti-rejection medication and protocol following a transplant? Have you been able to have reasonable insurance coverage for medications post-transplant?
Peace and Blessings, Gary

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@2011panc

@donnan Please do a search for my name and you will find my story, which is somewhat similar to the beginning of @cehunt57's post. Please let us know how you are doing and what questions you may have. We will do our best to help you.

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Hey @gman007
The best way to read @2011panc 's story and what she has shared with members on Connect, is to click her @username and read her past posts. Hope that helps.

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@cehunt57

@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

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@gman007 My social life has been greatly reduced over the last 15 years while I struggled with my physical health. I find I am much more protective of my private time now and always need time to recover from any event. For example, we went to a wedding out of state and had 7 events to attend in 3 days. We went a day early so I could rest from the travel and I planned a day of rest when we returned. Unfortunately I became ill during the trip and spent 3 days in bed upon our return.

I existed with a level 8 pain every day for 8 months while fighting with my insurance company for back surgery, so I am well aware of the toll pain takes on your physical, mental and emotional well-being. Since my transplant my pancreatic nausea is relieved, but I am still sometimes nauseous from foods that I forget I can no longer eat. I also get nauseous if I allow myself to get too tired. Exhaustion is always a step or two away.

I never took pancreatic enzyme supplements prior to transplant, but they were tried for a time for some of my symptoms post transplant. They did nothing for me and were stopped. I have had good coverage for my post transplant medications through my insurance companies. At the beginning of this year my husband retired and we switched to Medicare and supplement insurances. It took a bit of juggling to get everything adjusted, but I still have good insurance coverage.

I am grateful that the longer I exist and work at improving my physical well-being, the better it gets. For example, in the last month I have been able to resume eating Cottage Cheese and yogurt, which were impossible for 10 years. I am thrilled that I can now have some protein with my breakfasts again. My best start for a day is yogurt, a banana and coffee water. I say coffee water because I always add 8 ounces of hot water to 2 ounces of coffee. I like the flavor of coffee, but full strength caffeine is too much for me. This way I can have up to 4 cups of "coffee" a day, which I like because I like something warm to sip.

Peace, health and blessings.

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@rosemarya

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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@gman007 I’m one of the people Rosemary referred to in the introduction above. I’m 40+ years type 1 diabetic and I have had a pancreas transplant (but that is besides the point here). During my diabetic journey I developed a complication of autonomic neuropathy. It is damage to the nerves that control internal organs. In my case it resulted in gastroparesis. It makes your stomach unable to move food on through to the rest of your GI system for normal digestion. Grossness alert: your whole system locks up & food just sits in your stomach rotting. It causes nausea, vomiting, pain, cramping, constipation & diarrhea. I’ve had 2 bouts of this serious enough to cause hospitalization. During those times I was checked for pancreatitis, had a surgical consult to rule out a bowel blockage, had upper and lower GI tests AKA endoscopy & colonoscopy, plus a stomach emptying test. Once the gastroparesis was diagnosed it became a matter of finding a medication to alleviate &/or prevent the problem plus some dietary changes. Gary, I’m not suggesting you have gastroparesis, but as a fellow diabetic it is worth considering and asking your provider about.

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@cehunt57

@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

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@donnan. I’m under 65 so I’m on Florida Blue Options plan. Costs have been virtually low for transplant meds. God has His plan for us even if we don’t understand it.
Your in my prayers, Donna

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@rosemarya

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

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@river, welcome to Mayo Clinic Connect. And thank you for joining this conversation. I sorry to hear about the medical problems you have experienced.

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REPLY
@cehunt57

@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

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@donnan Does that mean once you turn 65 you know longer qualify for Florida Blue Options Plan?

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