Mayo Clinic Connect
Had my transplant almost 2 years ago. I would like to connect with others.
@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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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I will contact them. Thank you!
Rosemary your so helpful. Thank you
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
@donnan, hi. @rosemarya mentioned me as a pancreas alone transplant recipient. I heard you are one also and are looking for others. It would be interesting to trade stories if you’d like to. My basic stats are: female, age 61 diagnosed type 1 diabetes in 1975. I turned out to be “brittle” and developed most of the colmplications associated with type 1 diabetes. In 2005 I had a pancreas transplant. At that time nothing else was helping me achieve any kind of blood sugar control and I was afraid of loosing my vision and kidney function. As far as I’m concerned the transplant was a gift from God and was like my own personal miracle. 3 weeks post transplant for the first time ever I had a normal A1C. There were some transplant related difficulties at first but for the most part my diabetes has been well regulated and manageable the past 12 1/2 years. The various complications either improved or at least stabilized. My vision improved. My kidney function stayed around stage 2 for about 11 years. Two years ago kidney function began to decline and has been bouncing between stage 3 & 4. I anticipate kidney transplant at some point and am looking for a living donor.
Sometimes a topic on Mayo Clinic Connect turns up in more than one discussion or group and the thread can be a little hard to follow but the mentors are very good at helping sort things out.
How have you been doing? I hope your 2016 transplant has been successful. Transplant is a journey for sure. I would like to hear about yours.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor, Gary, Alumna Mentor
@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.
Liked by beckyjohnson
Thank you so much for responding. I’m 62. Had my transplant on 08-01-16 at Phoenix Mayo. I was diagnosed with type 1 diabetes at age 9 so I had it 2 months shy of 51 years. My problem with going low without symptoms and going unconscious. Somehow someone always found me, tried to call me the perimedics crashed my door down. My A1C’s were always between 6.8 to 7.2. My other medical issue is vision only partly from diabetes. I’m almost 100% blind in right eye and partial vision in other. I use Lyft or my feet for transportation. Had to move to where health insurance would cover Mayo. Jacksonville worked perfectly. I moved last August at my one year anniversary. I have moved a few times but now live very close to Mayo primary care in Jacksonville Beach . I get to walk for labs.
Do you live close to JAX Mayo?
@donnan I go to Mayo in Rochester, MN. Before my transplant I also had hypoglycemic attacks with no warning and even passed out in public several times. Once I was finally able to call 911 and got help. My husband asked why I didn't call him but I could not remember the numbers or make my fingers work to dial it. It took many tries just to dial the three numbers "911". My A1C's were horrible but I could not keep my blood sugars level, even with an insulin pump. I did not drive for a long time, but am able to now. I am still careful to be sure that I can manage the traffic and be able to get there and (more importantly) get back. I have huge issues with fatigue and stamina and am finally working on them with physical rehab.
I also have had problems with my eyes. I have tunnel vision in my left eye, but my right works well and I depend on it heavily. I am glad you have been able to find living quarters so convenient for your care. As it is an all day trip (10 hours) for us to get to Rochester.
Up until a few weeks ago I had spinal issues needing surgery. Now that I have been able to get the surgery done I am much better overall as I no longer have a #8 pain level daily. I am able to do more light housework and walk. It will take a while, but I am grateful for each pain free step I can now take.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Teresa, Volunteer Mentor, Gary, Alumna Mentor
How often do you go for labs? Can you have them done close to you? People are funny because they would tell me to get one of the medical buttons. I would tell them if my brain knew to psh a button I would’ve eaten glucose tablets. I had them everywhere.
I ended up at my pharmacy one day where they got sugar in me. I could never not answer calls from my ex-husband because he would’ve called the police. I’ve been divorced for 10 years so I’m on my own. My trust and faith are 100% in God. I feel He gave me the most wonderful gift. I don’t fear about when will it happen again.
I was at the MN Mayo way back when I was 18. Next for transplant at Phoenix Mayo and now JAX Mayo. I live where health insurance allows me too. 3 more years until I’m 65 then I decide where to live according to health insurance.
Best of luck to you. Can you tell me your first name so I can add you to my daily prayers? I’m Donna
I go to MN twice a year for exams and labs and have labs gathered here every three months. It is helpful that my husband was a lab tech, so he can draw and collect my labs and mail them in.
I stopped carrying glucose tabs when I could no longer use them. I was at the point that I needed an injection of sugar water to recover.
My name is Sophia. You are in my prayers constantly. It is tough to do it alone and I applaud you for that. Sometimes it is easier alone that with a millstone around your ankle.
I am grateful for a loving husband and family (some) that care for me. God has blessed me greatly in that regard. I, also, have turned my life and my will over to God, so I don't fret much unless I am trying to figure something out. Blessings to you, Donna
Liked by Rosemary, Volunteer Mentor
My ex is still my best friend. Known him for 50 years. I don’t date because I have no desire. He is in Phoenix. He had me move back to Arizona in 2013 after visiting me. We were roommates. I started doing research on my condition. One thing lead to another and ended up consulting with an Endocrinologist at Phoenix Mayo. That started in September of 2015. On January 4, 2016 was placed on waiting list. Had on false call in May. My transplant took place on 08-01-16. Have had a few hiccups but not many. I still see my new transplant dr here in Jacksonville every 4 months and labs are every month unless a number is off. My ex was my caregiver. Our daughter who will be 40 next month says we’re are crazy family. They both came here this past Christmas. My ex, Mel, will be coming to visit in September. Our daughter is in US Navy and hopefully will visit at Christmas. I live a very quiet life. Run my ex’s business and live stream in my church service in Atlanta. It still amazes me that I don’t need to check my blood sugars and take shots. I am beyond grateful for the grace of God.
Have a wonderful life and please keep me updated. Hopefully the kidney transplant won’t be needed.
Liked by Rosemary, Volunteer Mentor, beckyjohnson
@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.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, 2011panc, beckyjohnson
@cehunt57, @2011panc & @donnan , I want to drop in and say how happy I am that you all have connected!
You have successfully accomplished within a few short days one of the reasons that Mayo Connect exists: " Mayo Clinic Connect is an online community where you can share your experiences and find support from people like you." (Mayo Connect Home Page)
Hugs, Hope, and Health,
Liked by 2011panc, beckyjohnson
I’m finding it very interesting and will heil others as much as possible
Meant to type help others
@donnan This is the place to connect with knowledge gained by experience that slips through the criteria used to print information. We are honest, candid & transparent which is a good thing for everyone in the loop.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, jeanne5009, beckyjohnson
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