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Donna N (@donnan)

Looking for other pancreas only transplant recipients

Transplants | Last Active: Jan 21 5:10pm | Replies (42)

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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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Replies to "@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is..."

@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

@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.

@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

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

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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