Mayo Clinic Connect
Hello! I am listed for SPK at MayoClinic in Jacksonville Florida. I have not seem anyone talking about any SPK or even pancreas only transplants. I know we are rare, but is anyone else out there?? Love to discuss the experience!
Liked by cehunt57
@nikkispk, I want to welcome you to Mayo Connect. I am a simultaneous liver and kidney recipient, I am happy to meet you. I would like to introduce you to cehunt57 and @2011panc who can tell you about pancreas transplant.
Here is a discussion that you will also find interesting. -Looking for other pancreas only transplant recipients.
Edit- @cehunt57, I wanted to tag you to this conversation. I just noticed that I didn't include the @ before your name.
Liked by cehunt57, nikkispk
@nikkispk I received a pancreas only transplant January 15, 2011, at Mayo Clinic Complex, St. Michaels Hospital, in Rochester, MN. As I have come to understand, pancreas only is more rare than kidney/pancreas. There are several of us on Connect. According to UNOS, there have been 192 pancreas only and 839 pancreas/kidney transplants over the last 30 years. I do not know the outcome of the transplants. Mine is a Gift of God and has changed my life considerably.
Many people, including medical personnel, do not know that pancreas transplant is even possible. Now that I know this, I am not surprised that I have had such a hard time finding other pancreas transplant recipients. I am glad but hesitant to discuss my journey with you. I am glad to help in any way I can, and hesitant because I have many additional medical issues that has made my recovery and life quite challenging. I do not want you to expect that your journey will parallel mine and hope that yours is much less involved.
I was a long-term, brittle, Type I Diabetic that started insulin therapy in the dark ages when home sugar test were done by checking urine for the amount of sugar and injections were all long-acting, animal-derived insulin based on periodic testing at the doctor's office. We have come a long way. Before transplant my glycemic highs and lows were so unpredictable, frequent and intense that I had to carry injectable glucose recovery kits. I would have no symptoms until it was too late to help myself.
Please feel free to ask me anything and I will answer to the best of my ability. I have shared about my journey and you should be able to read any of my previous posts by entering @2011panc. I believe you can look forward to an exciting and life-changing event with many benefits for you future. Do you have any particular questions for me? Blessings to you.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, JK, Alumna Mentor, cehunt57 ... see all
I have an evaluation scheduled in the Phoenix MAYO clinic next week for a Kidney/Pancreas/Liver transplant evaluation. I'm a type 2 diabetic with a creatinine level of 3 and 17% of kidney function. My Las Vegas doctor estimated my MELD score at 25+. While I feel OK now (other than staying tired most days), I do not want to be literally at the end, especially since my numbers are on a downhill slide. If I'm approved I know I will be on medications the rest of my life (however I've been on something for 40 years anyways). Is there any ideas that would make my life easier before during and after the transplants? Any issues on transplanted organs to look for? I feel very comfortable with the MAYO doctors. Has anyone seen major unexpected outcomes?, especially since Liver transplants are not available in Nevada and many specialties of doctors do not exist here – so there will be many trips to the Mayo in Phoenix.
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I am glad to meet you! I, too, have some other significant challenges, so I understand completely that there could be a rough road. But my past 26 years have not been easy, and the last 10 has been downright difficult. I can get through this, i have to tell myself that every day!i am going to check out your story! XOXO
Short history: Ten years ago, I was diagnosed as a Type II diabetic. Five years ago I was diagnosed with pancreatic cancer. In my Whipple procedure, the surgeon removed most of my pancreas. The pancreas was not reattached to my digestive system and I became a Type I diabetic. A rare reaction to the chemo gave me a disease that damaged my kidneys. For the last 4 years, I have had Stage 4/5 CKD. Last August, I asked Mayo Rochester about a pancreas/kidney transplant. The doctor told me that because of my size (6 feet 3 inches/230 pounds) that a transplanted pancreas would not produce enough insulin to cover my needs and I would still have to give myself insulin shots. He also said that internal scarring from my Whipple would make the pancreas transplant very difficult. Still working on a kidney transplant.
Hi, @benlam11 I have only had a liver transplant in September 2016 at Mass General Hospital.
The only issue I can comment on is that the immunosuppressants can cause other things, and you have to be very careful of infections. I have developed either IBS or a lactose intolerance from the immunosuppressants.
That's great that you are comfortable with your doctors, I believe that is extremely important. I too have always felt very comfortable with mine at MGH.
I would get in the best shape you can prior to transplant, it makes the recovery easier. While I was waiting for that magical day I worked hard to improve my physical condition and to lose weight in a healthy manner — I was overweight. Those are the best things I can suggest. Fatigue is definitely an issue when you are having so many problems, your body is using its energy to be as healthy as it can. Don't hesitate to take a nap or even two a day. I was often taking a nap in the late morning and another one in the afternoon.
I hope you don't have to wait too long for your transplants. I am sure having all of those new and healthy organs will make a huge improvement in your life.
Liked by Rosemary, Volunteer Mentor, cehunt57, marvinjsturing
Thank You for the info.Overall I feel healthy, however I do have weight issues (250lbs and 6' tall). I hope it does not disqualify me. I do aqua aerobics 2 times a week and Chair Yoga twice. I do have balance issues, however that started with my ammonia poisoning of the liver that was not diagnosed for over a month in hospitals, until I went into a coma after having weeks in an altered state.
Liked by Rosemary, Volunteer Mentor, JK, Alumna Mentor, cehunt57
@nikkispk, @benlam11, @marvinjsturing
Here is more information about Pancreas transplant from Mayo Patient Care & Health Information
Tests & Procedures>Pancreas transplant
Here is a dicussion about multiple transplants.
@benlam11 Most hospitals do not make weight a constraint. I know some do though, so not knowing if I would need to dual list I dieted and lost a very significant amount of weight, which I am so glad I did. What I had read about hospitals that do use weight as a criterion is that if your BMI is over 30 they might turn you down. Mine was well over 30 so I got it down to about 26.
When you do have transplants your recovery will be greatly improved if you are in better shape, so regardless I would try to lose some pounds. I heartily recommend using myfitnesspal.com to help you along. It seems cumbersome at first but once you get used to it, it's easy. You have to be totally honest with it. It's so easy to grab a cookie or something like that without ever thinking about the calories in it. It can be eyeopening too to see the calories in some things. I used that, exercised a lot, at that point, it was mostly water exercise and my recumbent bike, and used a scale that gives you a gauge of BMI and fluid retention. That can be comforting if your weight goes up and you see that it is fluid retention. It sounds like you are already getting some good exercise in, but maybe you could increase that a bit, alternating days between one type and another type.
Keep up the good work and please keep us updated.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, cehunt57
@benlam11 To make your life easier before/during/after transplant, get yourself as healthy as possible. Stop tobacco and alcohol, eat a healthy and natural diet (cook things from their natural state), reduce caffeine and sodas, and get as fit as possible (walking or swimming daily are the best start). Begin practicing cleanliness: sanitize countertops before, during and after use; designate separate cutting boards for vegetables and meat; stop using wooden cutting boards for meat; wash hands well and often; get used to having and using sanitizers; reduce use of perfumes, air fresheners, etc. (that may be masking odors rather than cleaning them); review your live plant situation and reduce to minimal care house plants; review your pet situation and arrange for someone else to manage bathing, brushing and urine/feces; look for and address any mold issues anywhere in your house; and set a schedule for cleaning heat/air vents/covers.
Issues for transplanted organs should be provided by your doctors at the time of transplant. You will be informed of the points of mismatch (for example, my donor was +CMV and I was -CMV) and instructed if/how to manage them. You will also be instructed what symptoms to watch for and report.
I have experienced many unexpected issues following my transplant because, I believe, I was a brittle Type I long-term diabetic and all this underlying issues that had been attributed as secondary to diabetes were now jumping out of the cupboard and saying, "Me! Take care of me now!"
Since I have a pancreas only, I cannot address any issues with any other organs. I do understand that each organ has it's own issues and each person has their own individual experiences and expectations.
You have a healthy interest in your personal health. One thing I would suggest, if you are interested, is to begin journaling. Many people have found it helpful. You can expect lapses of memory throughout the process, as you will be given anesthesia and pain medications that may alter your memory functions. A journal that you keep, even in an altered state, can help you piece everything together later.
Primarily my advice (and what works for me) is to turn your will and your life over to God and trust that He will take care of things when you cannot. That underlying belief, faith and knowledge has always served me well and helped me calm myself and press on. Blessings to you and all your supporters.
Hi Rosemary. That was informative thanks. I'm 50. Type 1 diabetic for 39 years. Was always pretty good with it but an athlete my entire life not an excuse but I did struggle at times. Also a successful happily married athlete at age 40 when I had 4 unexplained strokes. I'm lucky to be here. Had to learn to talk and walk again. Took 2 1/2yrs of therapy. Was told I would need a cane or walker for life. Have 3 kids. My only daughter was 5. She couldn't run to me and jump into my arms. That was my motivation. I can run now. Stage 2 dementia and a multitude of other issues. In September I fell 10ft landed on head cracked my skull. Has given me a lot more to deal with. So I'm 5 for 5 surviving brain injuries. I'm not religious at all but so very appreciative to be here. Everyday is a great day. A lot is difficult and I do get bummed. I miss working but I worked hard and thankful I provided. My awesome wife took the opportunity,since I love being a Dad, to further her career.
I want to get a pancreas transplant. I'm very nervous i won't qualify so I haven scheduled an appt.
Well that's most of my story I think. What do you think? You can say anything it's impossible to offend me. Thanks
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, JK, Alumna Mentor, cehunt57
You won't ever know if you don't try. If you get turned down, and you have the funds, you can always try another location. I had a friend that needed a liver transplant and his age kept him from qualifying at Baylor. He found a transplant center in another state and received his transplant. He was 72 but in fabulous shape. He's now in his 80s and doing quite well. Don't give up and all they can say is no. By the way, My name is Ann and I'm a liver transplant recipient from 2/2007 and I'm currently 56. Got my liver at 44.
@realisticdad Your story is amazing, you are very lucky to be here. I hope you are able to get your pancreas transplant. As @annmariaa said, you won't know if you don't try. Some regions can transplant at lower scores so look into that too. I was told when I first qualified for a liver transplant that I might want to look at a couple of other regions. Happily, my transplant came through sooner than anticipated in September 2016 and all is well.
Liked by Rosemary, Volunteer Mentor, cehunt57
I am very excited, there is a woman in one of my support groups that just had her SPK at Mayo Jax a few days ago!! I hope to see her up there soon!!
Liked by Colleen Young, Connect Director, JK, Alumna Mentor
@realisticdad, I think that you have an admirable attitude and an inner strength to achieve what you have, in spite of the barriers that have been set up in front of you. I can feel the love and support that exists between you and your lovely wife and children. And I can certainly understand your desire for a transplant (if needed) and your hesitancy about scheduling an appointment. My 'thinking' is that I don't know anything, except to encourage you to make some phone call inquiries about appointment, and to let the medical experts decide whether or not a transplant is in your best interest. Does that sound reasonable to you?
Liked by JK, Alumna Mentor
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