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.

Interested in more discussions like this? Go to the Transplants group.

@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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@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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@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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At 64.5 I will check with Mayo JAX transplant insurance department what my options will be. They will direct me to plans that cover Mayo.

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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, I want to send you a second Welcome. I am sorry that I cut my first on short, but I ran out of time on Saturday.

I recall that in an earlier post that you mentioned having problem getting an appointment about a transplant evaluation. Have you been able to get an appointment scheduled ? Have you had contact with anyone?
Rosemary

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@rosemarya

@donnan, Hi and Welcome to Connect. I see that you have just recently joined us. I am a volunteer mentor (liver/kidney) and I want to invite you to take a look at any of our discussions and to join in at any time with any questions or comments. We are a group on individuals who support each other by sharing our transplant experiences to help and encourage others.
Donna, I understand your desire to connect with others who are 'related' by pancreas transplant. Please let me know if there is anything that I can assist you with. I would like to introduce you to @cehunt57 and @2011panc who have both received a pancreas transplant.
Rosemary

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thank you for the connect i'm wanting to get a pancreas transplant. I have never had kidney troubles until about two months ago i been feeling pain but i started cranberry juice three times a week and a lot I mean a lot of water the pain stopped and the blood work shows no issues. But the sugar level is a whole other ball game it will be 150 then i'm sitting watching TV and it will shoot up to 600 i'm on the pump but it bounces so much.

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@lovette26

thank you for the connect i'm wanting to get a pancreas transplant. I have never had kidney troubles until about two months ago i been feeling pain but i started cranberry juice three times a week and a lot I mean a lot of water the pain stopped and the blood work shows no issues. But the sugar level is a whole other ball game it will be 150 then i'm sitting watching TV and it will shoot up to 600 i'm on the pump but it bounces so much.

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Nice update profile, @lovette26! Thank you.

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Does a Pancreas Transplant help with EPI? Type 1 for 48 years. On enzymes but still have the horrible symptoms. Going to Mayo for a Pancreas Transplant evaluation. Stage 4 Kidney failure with future live donor if needed. Hoping Pancreas Transplant will help kidneys. Thank you.

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@pamherman you sound quite a bit like me. Diabetic for 47 years and stage 4 CKD. The difference between us is I had a pancreas only transplant going on 17 years ago. It did not “cure” the diabetes but was my own personal miracle anyways. Complications of diabetes reversed &/or stabilized and the CKD stayed mild/moderate for 11 years. Kidney function started declining 5-6 years ago. I’m pretty good with acronyms (like CKD) but I don’t know what EPI means. It is great that you are going to Mayo for Pancreas Transplant evaluation. I went there in 2016 for Pancreas/Kidney Transplant evaluation. My pancreas transplant in 2005 was done at a another transplant center. Mayo seems way better for so many reasons: thorough, multi disciplinary collaborative team approach, meticulous follow up, good communication … etc. I was accepted & approved for kidney transplant and have continued with Mayo for a yearly update/ review until the pandemic. My local providers continue to monitor my conditions. If and when another transplant or 2 are needed I will go to Mayo. You will be in good hands there. Prayers and best wishes for your improved health in the New Year.

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