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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14 9:57pm | Replies (1677)Comment receiving replies
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".
Replies to "Well it's been awhile since we have all "talked" but I thought I would share some..."
@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
@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
@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.
@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.
@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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@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.