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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Nov 16, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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@lamino. Your post is so uplifting. The relief you feel is almost palpable to those of us reading it. I could not be happier for you and for your family, and for all the other families effected by this.
JK

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JK | @contentandwell | Nov 16, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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@lcamino The tacrolimus, one of the immunosuppressants, causes my creatinine to go up. They are considering 1.4 to be my baseline. I am supposed to drink 80 - 100 ounces of water a day to keep my kidneys flushed. Is that an option for you? It is a nuisance because I have incontinence problems - put those two together and I am up all night plus have to always know where there will be restrooms.
JK

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IWantToBelieve | @IWantToBelieve | Nov 16, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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@contentandwell - I'm not sure what you are asking me my option is. For the study I'm in I must drink 64oz of water to stay hydrated because Tolvaptan empties you of fluid whether you have had a lot to drink or not so it is easy to get dehydrated. The medicine suppresses a vasopressin hormone which is responsible for having you retain water so you don't get dehydrated. They now know that drinking a lot of water is important for PKD (something I did not do earlier in my life) even if you are not in the study because if you drink a lot you can help your body naturally suppress the vasopressin hormone and they know that suppressing that hormone slows down the growth of cysts.
Although I only have to drink 64oz of water a day I drink about 3/4 to a gallon (128 oz) of water a day. It is easier than it sound because the medication does make me thirsty. I drink about 20 oz. during the night (yes I'm up a lot to go to the bathroom) and about 60 oz by 10 or 11 am because I take a larger dose of the medicine in the morning. In the summer and when I exercise I probably drink a gallon and a half. I must admit though that I have gotten used to drinking even when I'm not thirsty.
I understand having to be near a bathroom. Road trips take a lot longer as I have to stop every hour and hikes or bike rides have to be in areas where I can find a bathroom. Flying is a real nuisance because you have to time everything since there are times you can not get up at all.
Have you talked to your gyn re your incontinence issues? There is a lot that can be done about that now.

REPLY
JK | @contentandwell | Nov 16, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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@lcamino Lynne, I was just asking if a large fluid intake is a possible option for you. Obviously you are drinking even more than I am though and your creatinine is still too high. I asked if drinking more is an option because my brother has a very high count but he says because of other health problems he cannot drink a lot of water. So far, as long as I do do manage to drink a lot my creatinine is within my baseline. Of course I probably get up about 10 times, (literally) during the night. Any wonder that i’m Tired?
JK

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JK | @contentandwell | Nov 16, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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@lcamino I did mention it to my gyno and he will send me to a urogynecologist if I want him to. I don’t think I would be a candidate for surgery tho and I really do not want to add more pills to my arsenal.
JK

REPLY
IWantToBelieve | @IWantToBelieve | Nov 17, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

Jump to this post

@contentandwell - Usually drinking a lot of water is good for the kidneys. If I go on dialysis it will be the exact opposite and I would have to ration liquid severely. Heart problems can have you limit water intake too and maybe other reasons - I don't know. Valid question though because I had the same one when I first went to Mayo. I assumed that drinking all that water would make your kidneys work harder and not be good for them. I do not understand how kidneys work but I was told drinking a lot helps flush out the toxins and helps kidney function. It helps my disease and kidney function to an extent but the growth of cysts eventually chokes out the filtration part of the kidney which is what leads to kidney failure. I just learned that my kidneys are 9x the size they should be (one 4x and the other 5x) due to so many cysts they can't be counted. I met a man on Instagram who is in his 30s and had both his kidneys removed because they each weight 35# due to so many fluid filled cysts! He is on dialysis and waiting for a transplant so in the grand scheme of things I'm quite fortunate.

Wow! You are up twice as much as I am and I get tired during the day. You are probably getting very little REM sleep.

REPLY
IWantToBelieve | @IWantToBelieve | Nov 17, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

Jump to this post

@contentandwell - understood. I just was encouraging you because so many women put up with symptoms that are easily solved but they stay silent because they are embarrassed. There are some nonsurgical techniques for some issues but I know you do a good job advocating for yourself.

REPLY
JK | @contentandwell | Nov 18, 2017
In reply to @IWantToBelieve "Well it's been awhile since we have all "talked" but I thought I would share some..." + (show)
@IWantToBelieve

Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

Jump to this post

@lcamino My brother whom I mentioned has some heart problems so I assume that’s why he cannot drink that much water.

At this point I know more abut livers than I ever wanted to and I am sure you know more about your kidneys too. Of course in your case there were problems within the family so you may have been more knowledgeable.

I think I am up more than ever recently because I am not sleeping soundly due to the pain in my leg. I will always be up a lot though, I don’t see any way around that. It is very fatiguing. More often than not I end up taking a nap at some point during the day.
JK

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 20, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my 'normal' medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@davidgenebarnes

I hope that all is going well for you and that you have a great Thanksgiving.

Teresa

REPLY
davidgenebarnes | @davidgenebarnes | Nov 20, 2017

Hello Teresa! My life has done a complete 180! It has been 10 weeks since the surgeries (4) and they tell me it will take another 4 to 5 months to heal, I feel like I did three years ago, FANTASTIC! My energy level is back up, dizziness maybe once a week, appetite is good, blood work almost perfect, sugar is low (off insulin) and life in general is once again, wonderful. While I am still recovering and have to deal with some pain, I feel truly blessed. I owe to: God, my Wife and the wonderful/fantastic doctors, nurses and staff at MAYO. I found a new church near my new place and have begun volunteering for events that fit my capabilities.
I would like to thank yourself and all the many people on Mayo Clinic Connect. (I feel like I am accepting an award and making my acceptance speech).
Best Wishes to you and yours during the upcoming holidays.

Dave Barnes
P.S. Please feel free to give my email contact information to anyone who would like to discuss both pre and post surgeries and symptoms.

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