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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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 14, 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, Thank you for sharing! This is indeed exciting news about a treatment for PKD - medical history in the making.

Lynn, I have been reading about your kidney health journey here on Connect, and it has been, and continues to be an honor to be a part of your journey. I am at a loss for words about what this has to mean to your daughter, your relatives, and all patients with PKD. The research being carried on by doctors such as Dr. Torres and team, along with volunteers like you, are some of the reasons why Mayo Clinic is a special place!

Will you be able to continue on this treatment until it is time for you to need a transplant? How often are you monitored to see if there is an actual decrease in your own disease progress?
Rosemary

REPLY
IWantToBelieve | @IWantToBelieve | Nov 15, 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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@rosemarya - I finished the first study (the one that has been published and I got the placebo for) and immediately enrolled in a follow up study where I have been taking Tolvaptan for 8 months. That study is 24 months so I will probably get a transplant before that study is completed. I don't know the plan if the med is available to the public before the study is done. I suspect they will finish the study but instead of me getting the med for free, via the study, I might get it via the pharmacy. Either way I should continue to get the medicine until I have my transplant as long as the FDA approves it.

The study requires me to go to the Mayo monthly for blood and urine tests. My disease will continue to progress, just more slowly than if I was not on the medicine. Dr. Torres says my creatinine has been going up slower than before. The cysts I have will not get smaller and more will still grow, just slower. My kidneys are 9 times bigger than they should be (one 4x and one 5x) and they will continue to grow. The more cysts grow the more my kidney function will decrease so the whole process is just slowed down so it is buying me time. For obvious reasons that is why the sooner you get the medicine the more of a benefit you receive. My dose has had to be decreased because my creatinine got too high. Once the dose is decreased my creatinine goes down, and if it doesn't that is not a good sign.

Hope that explains it. Thanks for your interest.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 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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Lynn,
Thanks for telling about this. How satisfying to have contributed to advancing medical care. Can you tell us a bit more what it was like to participate in the study? Did you have additional appointments or obligations? Did you know if you were receiving the treatment under study or the placebo while you were in the study?
Do you have the link to the study?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 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

Oops, Lynn, I see you answered some of my questions already in your response to Rosemary. I got excited by your first post about the study and just started typing.

REPLY
IWantToBelieve | @IWantToBelieve | Nov 15, 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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@colleenyoung - I'm sorry I don't have a link to the study. Dr. Torres gave me a copy at my appointment just three days after it was published! It is satisfying, exciting, and a true honor.

The first study (published study) involved visits every three months. At those visits I met with the study coordinator, answered questions about how I was doing with the side effects (for part of the study everyone took Tolvaptan and then once the dose you could tolerate was determined you got either the med or a placebo - double blind at this point) and my general health. Always got weighed, temp taken, and provided a urine sample. I got new meds and then went to the lab for a blood draw. In the afternoon I met with Dr. Torres, answered more questions, sometimes an exam was given. The worst part was having to bring a urine sample from the first thing in the morning which meant I had to do that in the airport in Chicago and carry it on the plane. Thankfully I never had it leak in my carry on!

For the other months I had a nurse come to my house who was trained about how to do the study. If I had lived near Mayo I would have had monthly visits but if you were far away just every 3rd visit was at Mayo and the other months were with visiting nurse. The study was a year. The visiting nurse drew blood and then stayed while she spun the blood in a centrifuge and completed paperwork. A courier then arrived, packed the blood in dry ice and drove the blood sample to the airport, or if it was too late he drove it two hours to Indianapolis. I believe all the bloodwork had to be analyzed at the same lab for consistency and the closest to my house was 2 hours away in Indianapolis.

I did need a CT scan, and I think a chest x-ray (been awhile so memory fuzzy), to be admitted into the study. There was a period where I had to show them I could drink the required 8 glasses of water a day. They know how much you are drinking based on blood work (sodium level I believe).

It really was not very invasive, especially if I had lived within driving distance of Mayo. I got a small stipend for each visit to help with travel expenses (I got the maximum amount because I had to fly but it did not come close to covering costs for me). Most of the time I left at 6:15am and arrived home at midnight but I did get stuck over night in Chicago and Rochester a few times due to weather.

It was very organized and staff were very patient if I was late due to my flight being delayed. Mayo Clinic runs very efficiently and I would encourage others to participate in studies if they are able (time) and their doctors approve. I'm delighted that I was able to be a part of this study and am so thankful to the researchers for their years of work to find the first treatment for PKD.

REPLY
IWantToBelieve | @IWantToBelieve | Nov 15, 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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@colleenyoung - I don't know how to give you a link but if you go to http://www.nejm.org and search for Tolvaptan in Later-Stage Autosomal Dominant Polycystic Kidney Disease you can read the first page of the study (need a subscription to New England Journal of Medicine to access the entire study).

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 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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I found it
Torres et al. Tolvaptan in Later-Stage Autosomal Dominant Polycystic Kidney Disease; N Engl J Med 2017; 377:1930-1942November 16, 2017DOI: 10.1056/NEJMoa1710030 http://www.nejm.org/doi/full/10.1056/NEJMoa1710030

The good news is that this article is free providing one subscribes. Often one has to pay to access such studies unless you are affiliated with a learning institution.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 16, 2017

Last week, I saw an article on the Mayo Clinic News Network. https://newsnetwork.mayoclinic.org/

Lynn, I actually thought of you and wondered if this was 'your' study - Now I know!
https://newsnetwork.mayoclinic.org/discussion/vicente-torres-m-d-ph-d-discusses-new-findings-on-tolvaptan-as-autosomal-dominant-polycystic-kidney-disease-treatment/
Rosemary

REPLY
1 reply
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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@colleenyoung - yes that is the one I have at home but when you click on the link it only shows page 1 of 13 pages. What floored me when I read the entire study was that 2292 patients were assessed for eligibility and by the time they got to the randomization phase (splitting between placebo and Tolvaptan) there are only 1370 participants. 687 received the placebo (that's me!). That made me feel fortunate enough but then I read that participants were from around the world with 282 who got the placebo from the United States (that is such a small number that I feel so blessed to have been able to be a part of the study) and 381 that got the placebo were from "other" geographic locations. I had no idea the numbers would be so small. It's just such an honor and privilege that I can't really put it into words.

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