Does a kidney transplant help the pancreas calm down?

Posted by cathyherman @cathyherman, Nov 1, 2021

Type 1 Diabetic since I was 9. I’m 57 and stage 5 kidney failure. Being evaluated for a pancreas/kidney transplants. Denied pancreas transplant because doctors were concerned that surgery and recovery would be extremely challenging due to my poor and declining health and underlying condition type1 diabetic.Okay for kidney transplant . My pancreas is failing as I wait for kidney transplant. I’m taking Creon 12,000 USP units. Colonoscopy and endoscopic done in October . Dr. was concerned everything was very swollen,pale and irritated. All the side effects listed when on Creon. Any input appreciated. Does a kidney transplant help the pancreas calm down. Food is a foreign body to my stomach. My sister wants me to do a pic line so my insides can recover. Now I’m worried to weak and underweight for kidney transplant.

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@cathyherman, I can imagine that you are concerned. Being approved for a kidney transplant but denied for the pancreas transplant due to declining health is worrisome. However, you ask good questions. I'm bringing fellow members @2011panc @cehunt57 @benlam11 @barbtc @linnea84 into this discussion to see if they have experiences to share.

Naturally, I think you should also ask your transplant team these questions. Members can also help you to know what questions to ask. Have you shared your worries with your doctors and asked what they recommend to keep you as healthy as possible (given the circumstances) to remain eligible for the kidney transplant?

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@cathyherman I am sorry you are facing these ordeals. I had a pancreas only transplant 10 years ago. It was a perfect match except for one point. My transplant has worked perfectly since the day of the transplant. I received one injection of 2 units of regular insulin during the first week following the transplant surgery and nothing since. At that time my kidneys were already showing damage and they told me I would need a kidney transplant within three years because of how hard the immunosuppressants are on kidneys.

Sure enough, three years later I was worked up for and put on the kidney transplant list. Among the multitude of tests was a test that showed oxalate crystals in my kidneys were the primary cause of the damage. I went on a strict no-oxalate diet and was able to improve my kidneys enough to be taken off the transplant list. After initial improvement my kidney function held steady until last year. There was a huge drop in function, some recovery, and a continued slow decline so that last month I began getting worked up for a kidney transplant again.

That is the broad strokes of my story. To help you understand why you were approved for a kidney transplant and not a pancreas transplant, they are very different surgeries. This is what I believe about your situation:

Unless procedures have changed, you will be opened from just below your breast bone, down and around your belly button, and stop at your pubic bone. The pancreas is much more vascular than the kidney and attaching all those vessels takes a long time, meaning the surgery will last around 6-8 hours. The kidney surgery does not require such a large opening or have as many vessels, and so is a shorter and less invasive surgery. I believe the expectation is about 3 hours.

Considering the health status you reported, you do not have enough reserves to make it through the rigors of the pancreas surgery. Which is what your physicians have told you. You should feel better after your kidney transplant, and that should help you improve your status for a possible pancreas transplant at a later date. Your digestive system seems to be heavily involved, and that also will make your recovery more difficult. You won't have to wait as long for a kidney transplant, because you do not have to wait for a death. Use the time you have to contact family, friends and your community to look for a volunteer donor match. Pancreas is a death donation, so you will not be able to receive a transplant from a living person.

There might be a chance that after your kidney transplant you can improve your overall health and qualify for a pancreas transplant at a later date. I pray that will be the outcome for you. I encourage you to be as stable as possible with your diabetes, as that will also help to improve/maintain your health status. No matter what, I believe you need to get your digestive issues addressed before your can undergo a long, involved pancreas transplant surgery.

I can tell you this for sure, if you do get a working pancreas you will feel worlds better. Right now you are the place where you need it, it will help your overall health, but you are not healthy enough right now to get it. That's a tough place to be. Please feel free to respond with any specific questions you have. There is a great deal of information to take in. Blessings to you. I will continue you in my prayers.

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@cathyherman your post caught my attention and then @colleenyoung responded to your post mentioning me and fellow members that may have some experience with your situation. @2011panc has already given lots of info in the above response. I’ll try to add my info for you. I’m type 1 diabetic since age 18 in 1975. (I’m 64 now.) I developed all the usual complications of diabetes and ended up having a pancreas only transplant in 2005. At that point my Chronic Kidney Disease (CKD) was only mild and a kidney transplant was not recommended. The pancreas transplant was not considered a success by the medical community because I never became independent of insulin but it was like my own personal miracle anyway. For the first time since diagnosis I could control blood sugar (with insulin, diet and exercise) instead of bouncing from “H” (>300) to 30 something and back numerous times in a day. My A1C went from double digits to 5. The retinopathy & peripheral neuropathy reversed. The autonomic neuropathy (gastroparesis & terrible GI symptoms) stabilized. The CKD remained stable for 11 years before my kidney function started decreasing again in 2016. That being said, transplants are major surgeries and the lifelong commitment to immune suppression is difficult. In my opinion it is still worth the effort. In 2016 I was evaluated and approved/accepted for kidney transplant. I’ve been looking for a living donor ever since. I believe that if it is meant to be it will happen in God’s way and in His timing. My hope and prayer for you is that you can keep as healthy as you can in regards to your diabetes. (I never heard of Creon, the medication you mentioned.) Get as much information as you can about transplantation and find a good transplant center/team to work with. I personally recommend Mayo (MN, AZ or FL). I used a different center for my pancreas transplant in 2005. I am grateful for the care I received but the evaluation and follow up could not compare with what Mayo offered when I began my kidney transplant journey in 2016. I wish you all the best and have added your situation to my prayers.

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Thank you for sharing your story helpful information. Success on your journey with your kidney transplant.

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@2011panc

@cathyherman I am sorry you are facing these ordeals. I had a pancreas only transplant 10 years ago. It was a perfect match except for one point. My transplant has worked perfectly since the day of the transplant. I received one injection of 2 units of regular insulin during the first week following the transplant surgery and nothing since. At that time my kidneys were already showing damage and they told me I would need a kidney transplant within three years because of how hard the immunosuppressants are on kidneys.

Sure enough, three years later I was worked up for and put on the kidney transplant list. Among the multitude of tests was a test that showed oxalate crystals in my kidneys were the primary cause of the damage. I went on a strict no-oxalate diet and was able to improve my kidneys enough to be taken off the transplant list. After initial improvement my kidney function held steady until last year. There was a huge drop in function, some recovery, and a continued slow decline so that last month I began getting worked up for a kidney transplant again.

That is the broad strokes of my story. To help you understand why you were approved for a kidney transplant and not a pancreas transplant, they are very different surgeries. This is what I believe about your situation:

Unless procedures have changed, you will be opened from just below your breast bone, down and around your belly button, and stop at your pubic bone. The pancreas is much more vascular than the kidney and attaching all those vessels takes a long time, meaning the surgery will last around 6-8 hours. The kidney surgery does not require such a large opening or have as many vessels, and so is a shorter and less invasive surgery. I believe the expectation is about 3 hours.

Considering the health status you reported, you do not have enough reserves to make it through the rigors of the pancreas surgery. Which is what your physicians have told you. You should feel better after your kidney transplant, and that should help you improve your status for a possible pancreas transplant at a later date. Your digestive system seems to be heavily involved, and that also will make your recovery more difficult. You won't have to wait as long for a kidney transplant, because you do not have to wait for a death. Use the time you have to contact family, friends and your community to look for a volunteer donor match. Pancreas is a death donation, so you will not be able to receive a transplant from a living person.

There might be a chance that after your kidney transplant you can improve your overall health and qualify for a pancreas transplant at a later date. I pray that will be the outcome for you. I encourage you to be as stable as possible with your diabetes, as that will also help to improve/maintain your health status. No matter what, I believe you need to get your digestive issues addressed before your can undergo a long, involved pancreas transplant surgery.

I can tell you this for sure, if you do get a working pancreas you will feel worlds better. Right now you are the place where you need it, it will help your overall health, but you are not healthy enough right now to get it. That's a tough place to be. Please feel free to respond with any specific questions you have. There is a great deal of information to take in. Blessings to you. I will continue you in my prayers.

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You are correct pancreas surgery to risky right now for me. Everything you shared is right on target and just what transplant team told me. Thank you

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@cathyherman

You are correct pancreas surgery to risky right now for me. Everything you shared is right on target and just what transplant team told me. Thank you

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Diagnosis EPI of the pancreas. Put on 3,000 Creon which produces enzymes so I can eat. Waiting on kidney transplant GFR is 25 highest it’s been in 3 years. Has anyone experienced Creon raising the GFR. Any helpful hints on getting the diarrhea under control. Doctors say GFR has to be under 20 consistently. UNOS rules?! Juvenile type 1 for 50 years. While waiting fir GFR to drop pancreas problems developed. My worry is while waiting it’s inevitable that my organs are working overtime to compensate. What fails next? Quality of life is wearing depends and toilets . I’m an Olympic Athlete and looking at me you would never know it. I don’t know why they don’t focus on the whole package with lab results. Thank you ! This site really helps me .

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@cathyherman

Diagnosis EPI of the pancreas. Put on 3,000 Creon which produces enzymes so I can eat. Waiting on kidney transplant GFR is 25 highest it’s been in 3 years. Has anyone experienced Creon raising the GFR. Any helpful hints on getting the diarrhea under control. Doctors say GFR has to be under 20 consistently. UNOS rules?! Juvenile type 1 for 50 years. While waiting fir GFR to drop pancreas problems developed. My worry is while waiting it’s inevitable that my organs are working overtime to compensate. What fails next? Quality of life is wearing depends and toilets . I’m an Olympic Athlete and looking at me you would never know it. I don’t know why they don’t focus on the whole package with lab results. Thank you ! This site really helps me .

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P.S. I have a living donor!

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@cathyherman

Diagnosis EPI of the pancreas. Put on 3,000 Creon which produces enzymes so I can eat. Waiting on kidney transplant GFR is 25 highest it’s been in 3 years. Has anyone experienced Creon raising the GFR. Any helpful hints on getting the diarrhea under control. Doctors say GFR has to be under 20 consistently. UNOS rules?! Juvenile type 1 for 50 years. While waiting fir GFR to drop pancreas problems developed. My worry is while waiting it’s inevitable that my organs are working overtime to compensate. What fails next? Quality of life is wearing depends and toilets . I’m an Olympic Athlete and looking at me you would never know it. I don’t know why they don’t focus on the whole package with lab results. Thank you ! This site really helps me .

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@cathyherman, I am a liver/kidney recipient, and I want to say that I know how awful it is to wait, wait, wait and experience the changes in a previously healthy body. Reading that you are an athlete, gives me the belief that you are already proactive in healthy habits that will serve to your advantage when surgery might be required. Another advantage for you is that you have a potential donor.
How are you managing the waiting? What helps you to pass the time?

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@rosemarya

@cathyherman, I am a liver/kidney recipient, and I want to say that I know how awful it is to wait, wait, wait and experience the changes in a previously healthy body. Reading that you are an athlete, gives me the belief that you are already proactive in healthy habits that will serve to your advantage when surgery might be required. Another advantage for you is that you have a potential donor.
How are you managing the waiting? What helps you to pass the time?

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Equestrian Olympian and can’t ride because my calcium levels are extremely low. I could break a bone and my caregiver/sister watches closely. I do spend time with the horses. I had to lease out my equestrian facility. Declining for 2 years slowly now rapidly. I look sick , very thin. I’m doing my best. My body is breaking down. Juvenile type 1 for 50 years which means I need a kidney transplant sooner than later. If your condition can be managed why fix it?! Doesn’t matter if everything else is working overtime. My quality of life sucks !Health Care symptom is not helpful! My heart is strong and Im on top of my health. My lab work levels are either very low or way to high. UNOS has changed the formula fir calculating the GFR. Which makes mine higher. For 50 years and my underlining conditions that equals disaster. The doctors in my hometown use the old way. Transplant Hospital uses new way. I’m confused and maybe you can help me with some questions. Should I address the GFR with transplant Hospital. When I was checking UNOS updates . I read that now when you get listed you have to earn points. Even if you have a living donor. Transplant coordinator got my attention when I mentioned live donor. She corrected me as if someone needed my live donor then I would get one in return later. UNOS also has a clause about medically urgent. I know the longer I wait UNOS changes policy daily. Are you familiar with UNOS? Transplant Coordinators that I have dealt with don’t keep up with changes or familiarize themselves with UNOS guidelines. Any feedback much appreciated. Thank you

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@rosemarya

@cathyherman, I am a liver/kidney recipient, and I want to say that I know how awful it is to wait, wait, wait and experience the changes in a previously healthy body. Reading that you are an athlete, gives me the belief that you are already proactive in healthy habits that will serve to your advantage when surgery might be required. Another advantage for you is that you have a potential donor.
How are you managing the waiting? What helps you to pass the time?

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It’s not the waiting. My questions aren’t being directly answered . Transplant Hospital Cordinator’s are not familiar with UNOS updates and changes. Life or death for me. One transplant hospital told me I had 3 years to live. I need a living donor to save my life!

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@cathyherman

It’s not the waiting. My questions aren’t being directly answered . Transplant Hospital Cordinator’s are not familiar with UNOS updates and changes. Life or death for me. One transplant hospital told me I had 3 years to live. I need a living donor to save my life!

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Cathy,
Anyone in need of transplant is welcome to get a second opinion or to be multiple listed at more than one transplant center. If one place is telling you that you are too decompensated to be listed, others may tell you the same thing, but you won’t know until you ask.

Have you considered a second opinion at another transplant center?

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