Double Nephrectomy?

[BeachLove]

So I am 2 1/2 years into dialysis, still searching for a living donor because the wait in CO for my type O blood is 7 years : ( I have PKD, and the cysts have envaded my kidneys so badly that they are huge and I frequently suffer cycst rupture symptoms (fever, flu, inflammation.) My surgeons are ready to remove both diseased kidneys to prepare for a transplant. However it frightens me to live my life without any kidneys or urination at all. (I currently have 6% functioning.) Your feedback is appreciated fellow warriors!

[PostivelyJo]

Research Maddie Warren , queen of dialysis. No kidneys and something like 20 years on dialysis.

She can never receive a transplant due to her bodies response. Received a donation from her father but her body rejected.

A story that is inspirational .

[Eyak1971 in reply to PostivelyJo]

Researched her. She is developing a program titled make someone smile. Do you have an info?

[PostivelyJo in reply to Eyak1971]

kidneyresearchuk.org/case-s...

I’m not sure what’s she’s currently doing . She works for Quanta dialysis machines ….

Amazing women. I’ve met her and know her well

[Eyak1971 in reply to PostivelyJo]

What a great opportunity to have that relationship with such a positive person. She definitely motivates others to reach out to those hidden in their homes dealing with the frustration of kidney failure and treatments. This is a problem that will increase from generation to generation due to changes in diet from generation to generation. To me, it is a crisis that here in America needs more attention as to preventive treatment and support. Thanks for sharing. When you see her again tell her once she has her program together there are many willing to join her cause.

[BeachLove in reply to PostivelyJo]

Thank you so much! I will look her up.

[Tashikat]

I can relate to your desire to get a transplant & relieve yourself of the oversize painful kidneys. I also have PKD & had much pain in my kidneys. I had them removed when I had my transplant 14 years ago, along with a hernia repair & removal of my dialysis port in a 10 hr surgery. The recovery from the removal of my newborn size kidneys was very painful for the first couple of months. I did not want to have 2 separate surgeries to recover from…so I went to a hospital that did the removal & transplant in one surgery (UCSF). They were excellent. You can choose where you have your transplant btw. Medicare pays wherever..

So I sent out an email when I was on dialysis just a few months in, to a long list of friends…& a friend ended up being my kidney donor. Give it a try…you never know. Some people check with their church members, or other orgs they belong to, by putting the word out. There are altruistic organ donors out there. Another option a friend did…was move to an area of the country where the wait list is not so long for a live or deceased person’s kidney. I think he moved to Ohio. He got his transplant in less than 6 mos. Just sharing options. Best wishes …its quite a journey..but worth it!

[Balap]

both my PKD kidneys were removed 10 months prior to transplant to avoid severe cyst infections post transplant due to immuno suppressive drugs

[BeachLove in reply to Balap]

What was it like to live without kidneys?

[Balap in reply to BeachLove]

no urination, strict fluid restriction during dialysis, big relief, no more cyst bleeding, rupture, infection and pain. abdomen felt great, room for new kidney, so many benefits

[BeachLove in reply to Balap]

Thank you for your feedback. Then did you heal and wait for a kidney? Also how did you deal with the increased fluid restriction?

[Balap in reply to BeachLove]

My kidneys were removed laparoscopically. 1st week after surgery was very painful. By the end of 2nd week, pain is manageable. 4kg removed in every dialysis session. Hope this helps

[BeachLove in reply to Balap]

Thank you. Is fluid management harder? Are you waiting for a kidney?

[Balap in reply to BeachLove]

both my PKD kidneys were removed 10 months prior to transplant, now 10 years post transplant. Dialysis and fluid management for 10 months

[BeachLove in reply to Balap]

Again, thank you! When you were living with no kidneys at all, how difficult was the fluid management?

[KidneyFreeQueen in reply to BeachLove]

I've have very little issue with fluid retention since going to home dialysis. Even with no urination I only take off .7 to 3 liters per day. I was actually told to drink a little more at my last appointment. Everyone is a bit different.

[scotlap]

I have O-negative blood and donated a kidney almost six years ago. My recipient and I, both Colorado residents, are now involved with American Transplant Foundation, which is all about helping folks with finding a living donor. I know my recipient eventually found a donor (me!) through his advertising on the back of his wife's van, "Husband Needs Kidney." Don't give up! Colorado is leading the way in organ procurement, and I hope you'll reach out to ATF for help!! americantransplantfoundatio...

[BeachLove in reply to scotlap]

Thank you. I have had a sign on my back windshield for a couple years.

[Patient-Empowerment NKF Ambassador NKF Peer Mentor]

Hello beach love!

I have had a double Nephrectomy back in 2010. It was one of the best things that ever happened to me. Yes, I too have PKD and PLD. The difference here is that I also had a transplant the same day as my double nephrectomy. So, it’s easy for me to say that it was one of the best things.

Getting you native kidneys out before you’re immuno suppressed is one of the smartest things you can do. You surely don’t want to have to have that surgery after your transplant. After all you’re already on dialysis.

For me, the removal was a Godsend. The last anything you need to deal with is cyst ruptures, abdominal crowding, pain and all the complications that come from forever growing and multiplying cyst-filled sacks.

At 6% GFR, I believe dialysis is doing the same thing your failing kidneys are doing, so I’m not sure of how much you’d lose without them at this point.

You can donate your PKD kidneys to research if you call the PKD Foundation for instructions. That’s what I did and it really made me feel good that I was contributing to science and a future cure for PKD.

*If you need help finding a living, kidney donor, I have two great resources for you. One is a mobile APP which is on Apple and Android devices. It’s called: Donor Seeker.

You can also watch “how to” talk-up your search for a living donor videos online at Transplantstrong.com (under the Donor Seeker tab). The other, is a book on Amazon called “In Pursuit of a Better Life - The Ultimate Guide for Finding Living Kidney Donors.

Hope this helps…

The best thing you can do right now is share your story and get a team together to help you spread the word. Your ideal donor is out there. They just need to find you. I know this to be true because it’s happened to me and so many others. You might also look into Peer Mentoring at NKF so you don’t have to go it alone.

Stay strong, think positive, listen to your medical experts, and prepare to make room for your new kidney so you can live a better and longer life. The life I now live. This is what I hope for you!

[PostivelyJo in reply to Patient-Empowerment]

do you have liver involvement too .I’m pkd . Transplant 3 years ago . I’ve recently asked for I wanted my native nephrectomy but they seem to think a liver transplant should happen as it’s large.

My liver is big but I think removing kidneys would give me more space

Any thoughts

[Patient-Empowerment NKF Ambassador NKF Peer Mentor in reply to PostivelyJo]

Hi!

My liver function is normal so there’s no reason to remove it. Are your liver numbers within normal range?

Yes, my liver is gigantic too. But, when you have a large liver and huge kidneys, one has to make an informed decision. Considering my kidneys were failing, it was the most appropriate choice.

I don’t think a liver transplant would be approved if the function is good. Of course, that’s assuming no serious problems like immense pain and risks from crowding, etc.

Additionally, I believe liver transplants are a lot more complicated, with higher risks than nephrectomy.

Hope that helps..,

[PostivelyJo in reply to Patient-Empowerment]

my liver function is normal. I’ve no idea why they think it a second transplant a good option.

I will go for the tests and then discuss. Think removal if kidneys far better idea .

I wish they’d done it at the same time like you. How crowded goes your abdomen feel now ?

[BeachLove in reply to PostivelyJo]

I was in liver failure as well for the first year with terrible ascites. Over time my liver healed itself by 80%. They were going to do a liver and kidney transplant at the same time but now I just need a kidney. Keep in mind that liver transplants are one and done. You can never get a second one. And liver transplants typically only last 15 years. You may also want to get a second opinion.

[PostivelyJo in reply to BeachLove]

wow . How did your liver regenerate ? This is amazing . I know it’s capable of regrowing . Gives me hope !

[BeachLove in reply to PostivelyJo]

Hi, yes on liver cysts, However over time my liver partially regenerated itself although it is enlarged. I used to need a liver transplant along with a kidney but now I no longer need a liver transplant. After a kidney transplant I will have a double nephrectomy to create more room. Hi thank you for your reply!!

[BeachLove in reply to Patient-Empowerment]

Thank you so much for the support and resources. I am 62 and my surgeons feel that to do a double nephrectomy and transplant at the same time is too long a surgery and presents more risk. For example if there was complication or bleeding during the nephrectomy then they could not put the kidney in and I would lose it.

[Hydrangea2023]

Hi I had cyst as well.. My heart is with you. Have you considered possible going to a nearby country? Mexico, South American. You may have more luck there or any researching any projects who need individuals who have your same condition? Just a suggestion.

Also if you have a relative sister daughter who could donate. Please tell them the donor is never in pain post transplant. My sister said it felt as if she had eaten too much post surgery. HE was discharge after 5 days. She returned to Houston Texas. My sister bless her never experience pain post transplant. IT sad people who could donate are so fearful of the unknown when they could save a life. Ask about their stem cell research also. Try contacting Sanford University Hospital, Mayo and the big major hospitals in Boston., George Washington Hospital in Georgetown, OR maybe even Utah. Best of luck . Have a friend I met who was so desperate a go fund was done and she had a sign posted on a major highway where she live. IT' worked. She found a person who donated a kidney x military, No problem. May you be as lucky.

[BeachLove in reply to Hydrangea2023]

Thank you so much for your support and thoughts!

[Cabrilla]

I haven’t heard anyone mention the National Kidney Registry. Through the registry a donor who doesn’t match you can donate to an anonymous recipient and then you get a matching kidney from the national pool through “chain donation”. This way you get a living kidney which is probably healthier than a deceased donor kidney. The wait time is expected to be less than 6 months rather than up to 5-7 years here in Oregon. Even for O blood type. I’m B+ and have been told to expect 2 month matching matching process.

I’ve been on the deceased donor list for nearly a year but in March my partner donated a kidney to an anonymous recipient. Unfortunately I had a brain hemorrhage a few weeks later so we’re waiting for my neurosurgeon to clear me before they make me active on the list. Then I should expect a match within a few months.

Is there a transplant center that uses chain donation near you? This way you don’t have to find a matching donor, just someone willing and healthy enough to give a kidney.

[BeachLove in reply to Cabrilla]

Thank you for your support and feedback. I hope your match comes through quickly! Yes I am aware of the paired exchange.

[ShyeLoverDoctor]

There is a long wait for my blood type also - 7 years where I live if you wand a Blood type B kidney, but B types can also accept some blood type A kidneys and the wait was 4 years. I ended up getting a transplant at Mayo Clinic in Phoenix, Arizona after only 11 months and 3 weeks on dialysis - a blood type A kidney which is technically an incompatible blood type with a higher risk of rejection and death. Personally I found it annoying that a bunch of peole tried to tell me all about paired donation - like, they meant well, but did they really think I didn’t know??

[BeachLove in reply to ShyeLoverDoctor]

I hear you about feeling annoyed! I have been trying to find a living donor for 3 years : (. I have been thinking on getting listed for a deceased donor at Mayo AZ. My daughter lives in Tucson.

[ShyeLoverDoctor in reply to BeachLove]

Please do it. I was listed at Mayo April 28 and received my deceased donor kidney June 11. Good luck.

[KidneyFreeQueen]

I've lived without kidneys for 17 months and am doing very well! All my labs are were they should be and I have dialysis at home. The routine gets a bit monotonous, but that's life.

[ShyeLoverDoctor in reply to KidneyFreeQueen]

I’m so happy that’s worked for you so far. It’s your choice to have whatever treatment that’s the best for you.

[ShyeLoverDoctor]

I am sorry for your plight! Kidney failure is not a walk in the park. We all are kidney warriors! I used to think that was a dumb overblown saying but I came to realize it’s really the truth. It takes a strong will to live to do dialysis.

I can totally see where it would be scary to have no kidneys in your body at all. The truth is, with your kidney function at 6%, you would be dead without dialysis. And with them gone, you will not have cysts rupture.

All surgeries suck! Just how it is, whether they are lifesaving or not, they are an ordeal.

You might still be urinating, but I don’t know how long that will continue as that 6% continues to decline.

Fluid restriction is hard. I was on hemodialysis. I dreaded it for a long time and when it came, yes, it was awful. However, you do learn to deal with it. You can take a pill with only a sip of water, for example, you truly don’t have to guzzle half a glass like people may be used to. Using smaller glasses to drink from is psychologically very helpful I found. Avoiding salty foods, sugary drinks, and you will be less thirsty.. I don’t know if you are on PD or HD, I thought in some cases people who do PD can drink more? But everyone is so different. Maybe you can’t do PD. It’s all complicated.

You can request a free one on one mentor at kidney.org. Mine was nice.

Also some hospitals have transplant support groups on zoom for people trying to get on the list, on the list, and who have had transplants, and their caregivers. I encourage you to look into that.

[BeachLove in reply to ShyeLoverDoctor]

Thank you so much. I am doing in center dialysis for 3 years. I suck on ice to survive. My biggest life dream right now is endless glasses of ice water!

[ShyeLoverDoctor]

My goal post transplant was to get a 64 ounce red slurpee. I think they have that size. I still haven’t done it. I’ve been in a couple of gas stations and either the machine was out of order or they didn’t have one.