Pancreas and Kidney transplant - share experiences

Posted by charba1 @charba1, Jul 23, 2011
@colleenyoung

Hi @bszychow @sandras @sophiadelgado,
It’s been a while since we’ve heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?

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@sophiadelgado, In 2014, I replied to you that I “admired your positive attitude”. That statement goes double, and even triple today as I am reading your post. I am sorry that you have been facing so many detours of the medical insurance system. It is remarkable that in the midst of this mess, that you have been able to focus on living life, and that your kidney function has actually gone up! Are you on dialysis? My experience was pretty much an emergency event, so I do not have any background in what %function makes dialysis necessary. I want you to know you will be in my prayers. Rosemary

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@colleenyoung

Hi @bszychow @sandras @sophiadelgado,
It’s been a while since we’ve heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?

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@bszychow , time does pass slowly while waiting. And, as if waiting alone is not difficult enough, it sounds like you have endured more than your share of trouble. It also sounds like you have a positive and optimistic outlook. That will help carry you forward. I am happy for you that the biofeedback has been working for you. Our minds and our bodies are capable of amazing accomplishments! Would you be comfortable to share a little about how you used biofeedback? Rosemary

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My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

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@colleenyoung

Hi @bszychow @sandras @sophiadelgado,
It’s been a while since we’ve heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?

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———- Forwarded message ———

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@colleenyoung

Hi @bszychow @sandras @sophiadelgado,
It’s been a while since we’ve heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?

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Hi Sophia – it looks like you tired to post a message in response to Rosemary, but it is blank. Can you please try again?
So glad to hear from you again!

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@ters1993

My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

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Hi @ters1993, welcome to Connect.
Wow, so great to hear about the longevity of your husband’s transplants. We have a few members who are long-time transplant recipients. @rosemarya, I believe you are 7 years and counting, right? @dglass4040 was your transplant 2011?

I’d love to move this conversation to the discussion called Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/ Will you join me there?

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@ters1993

My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

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@ters1993, Welcome to Mayo Connect! And thank you for entering this discussion and sharing your longevity of your husband’s transplant. I am a 7 year liver/kidney transplant. People like your husband are an inspiration for me; and especially for those who are on the waiting list to receive an organ. Thank you for sharing hope with us. Rosemary

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@ters1993

My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

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@ters1993, I know of some people who share your longevity with an organ transplant. I am going to try to notify them and ask them to enter this discussion. Before my transplant in 2009, I did not know anyone who even had a transplant. Now I find friends, and friends of friends who have transplanted or who know someone. If anyone out there can add anything about longevity (any organ), please join us. We welcome you to share in this discussion. Rosemary (liver/kidney 2009) enjoying 7 wonderful years!

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@sophiadelgado

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

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I received a pancreas only in 2011. I had been on the transplant list for about 6 months and had 12 hours to get to the hospital. We live 10 hours away, but it was the middle of winter with an icy storm between us and the hospital in Rochester, MN. We had made contact with a charter flight that was able to meet us at the local airport and fly us to Rochester, landing just before the airport was shut down due to the storm. Then we had about 4 hours to wait before we could check into the hospital and were not allowed to wait at the hospital. We stayed across the street at the Kahler. During my hospitalization my caregiver moved into the Gift of Life Transplant House, which we have been using ever since when it is available to us. If we had not lived close enough, the Transplant House would have been available for us to wait until a pancreas became available. The first year was horrendous, as other issues that had been hidden by long-term diabetes came to light. I was hospitalized 9 times in the first 12 months, lost my independence and ended up in a wheelchair. I could not drive, cook or clean my house and had to depend on other people to take care of everything. Fortunately things began coming together and I am now back to driving and only using a wheelchair for long distances or where there is no seating available. I am now stable and my goal is to stay so for as long as possible. At the time of my pancreas transplant I was informed that I would probably need a kidney transplant in 3 years. Sure enough, at my 3rd annual exam I was referred to the renal department to be assessed and followed regarding a kidney transplant. Thank God for that! We discovered that oxilates were the primary cause of the damage to my kidneys. I began a low oxalate diet and have since been able to improve my kidney function enough to be removed from the transplant list. We also discovered that I cannot assimilate fats and I have also added a low fat diet to my treatment plan. Despite the rough first year, this has been a wonderful experience for me. I have discovered underlying issues that are now being treated and am greatly improved. I no longer take insulin or need to check my blood sugars 4-6 times a day, and my blood sugars are stable with an a1c of around 4.7.

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@sophiadelgado

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

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@2011panc Welcome to Connect. I’m happy that you found us. Thank you for sharing your amazing and dramatic story of your arrival during the storm. I’m happy that you are doing well after that rollercoaster first year. I am short on time right now, but I had to welcome you, a fellow transplant recipient – and from Mayo Rochester, too!
I’ll be back in touch soon.
In the mean time check out the Living Life after your Transplant discussion for some helpful hints. I’ll bet you have some that you could add, too.
Rosemary liver/kidney 2009

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@sophiadelgado

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

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Hi @2011panc. I’d like to add my welcome too. Here is the link to the discussion Rosemary refers to
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
It would be great to have you add to that discussion.

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@sophiadelgado

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty

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You are amazing!! What a struggle you have been through yet you are pushing forward and remain positive. This will be the perfect platform for you to inspire others!! Congratulations on your perseverance, courage, and love of life!! Happy Thanksgiving:))

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