Kidney Transplant Patient with bladder cancer

I may be facing a radical cystectomy in the near future and I wanted to talk to someone who has gone through this. And is there anyone who has had a Kidney transplant and has gone through a radical cystectomy.

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We do have some transplant members who have had rc. Hope you will get a response from one of them. If I recall correctly they have done fairly well, with little effect on kidney function, but they are in a far better position to answer that than I.

jj

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I hpoe so too! thank you for responding!

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Hi Sharan, sorry to hear you may have to have a RC in the near future. I received a kidney from my sister in 1981, due to cytoxan for the transplant, developed Bladder Cancer in 1995. Neo-bladder surgery was completed in 2009, in fact I have a CT scan in April and my third year check-up has been scheduled for May. If I can, I will answer any questions you have but also you may want to follow GAREBO's Journal as he just went through an RC and Neo-Bladder surgery. He also has a transplant and did a good job documenting his journey. Peace, Duane

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Thank You Dfrank, are there any videos or anything written on a surgery like the one you had?

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Hello Sharan,
First off I am sorry you have ended up here due to bladder cancer, but, let me tell you that you are certainly not alone. The people that you will talk to on this site are remarkable and tons of help! I had my kidney transplant on July 23, 2005, diagnosed with t2 bladder cancer beginning of February 2012. You can read my entire journal which may be helpful. All in all RC is a tough surgery, once I found out I needed the RC I excercised every day for an hour to an hour and a half. In no way am I trying to scare you, just be prepared. The excersise I feel got me out of the hospital in 5 days. It has been 2 weeks out from surgery and catheter is still in, supa pubic cath. Is still in, stomach and below are still very sore. Everything gets better each day, keep that in mind. Good luck with your journey and feel free to contact me.
Gary

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Wow! I am a kidney transplant, pt. When I joined rBCAN last year and asked about others w/tranplants, nobody with a TP replied. A lot of others did though. I am now on the verge of RC. I was dx last year w T1, high grade. I had MMC, initially 6 tx then 3 3 week maintenanced rounds, after which I was "clear." Now cysto on 3/6 revealed a recurrence. Turbt and bx on 3/22 not in yet. Waiting but sure RC is going to happen.

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Loislane, I only joined in November at the time was told buy my urologist I was a rarity but now there are a few of us on this site. I pass the 30 yr mark with the kidney my sister loaned me, if I can be of any help just ask away. Had bladder cancer since 1995 and a neo-bladder since 2009. Take care Duane

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Thank you so much for responding to my call. I have been reading up on the patients tips on the home page and it has helped me a lot. Ordered some books from the library too! This site is awesome! I'll be praying for you!!!

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Wow, that's about where I am. The doctor will go back in May 8th TURBT. I just learned what that was on Patient Tips. Anyway We pray it has not gone into the wall. Let's keep in touch OK.

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30 year Transplant! That gives me so much hope. What is your Creatine? Mine runs 1.7 to 1.9.

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Hi Sharan, my Creatinine prior to the neo-bladder averaged 1.1, but since the neo-bladder it varys from 1.3 to 1.5 but both my kidney doc and urologist feel this is normal due to the science behind the neo-bladder. The one complication I have to deal with is that my potassium is very high at 5.5 +/-, but my last physical I was able to get it below 5. This is also a side effect of the neo-bladder. Since the "new" bladder is made out of a piece of the small intestine that is turned inside-out, it can cause problems as it puts the potassium the kidney extracts right back into the blood stream. I was told this is rare but something to watch for with the one transplant kidney. But hopefully having to watch my diet more due to the potassium, I can stay off the zocor which my doctor just stopped and have not been on blood pressure med since just before the neo-bladder surgery (since 2009). Less meds the better since the bladder cancer is due to a med I was given to fight any kidney rejection (cytoxan). Meds are not necessarly bad just always need to out-weigh cost vs benefit, but sorry dont mean to lecture - just got side tracked. Duane

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Well it is nice to have transplant buds though I am sorry for the bladder cancer that came as a result. I have had 2 transplants; 1982 from brother and a 2nd in 2001 from a non-living donor. Creat 1.1-1.3 avg. RC coming soon. What's it like for TP pt?

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Likewise nice to have someone to discuss experiences with, just would be better not under the "C" cloud - LOl. I am short today and being quiet since it is Owie day. I have my grandson and its nap time - shhhh. But always happy to foam at the mouth most days. If you do have any questions please dont hesitate to ask, that is of anything. Fighting the cancer is the toughest part due to our surppressed imunity systems. Surgery and recovery from RC is pretty much the same. However the actual surgery is a little more dangerous due to the location of most transplants being so close to the bladder and nodes that also are removed during surgery - this results in an increase risk to damaging the borrowered kidney (not that I plan on giving it back anytime soon, I'm just breaking it in now - LOL). Dont mean to be short but its been a 2 hour nap, nothing like a hike into the woods and fresh air -LOL to tire him out and me (he's 18 Months). Take care, Duane

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My transplant doctor is concerned about the kidney making it through a bladder removal. I also have heart disease. I have lost 12 pounds in the past month and a half and just about to my goal. I hopes that my health will inprove for the odds. I have a great faith in the Lord guiding me through all this but I know I need to do my part.

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Sharan, hi the pounds will help to being in good health, but with Spring here dont forget the exercise. Not sure how you did the 12 pds but if it was with exercise, great. Sometimes I forget I'm preaching to the choir, but even 10 minutes here, 20 there it all adds up to a healthier heart, mind and body. In regards to the kidney have you picked a doctor for the RC surgery, if not ask lots of questions about their experience. For example my Urology surgery is also a transplant surgeon, so that helped relieve my worries about how he would be around the transplant kidney. Duane

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Hey sharan, I am going to echo dfrank about the excercise. I had a heart attack in nov. 2011, triple bypass and mitral valve repair, diagnosed with bladder cancer early feb. 2012, the rest is history and in my journal here. I excercised 11/2 hours a day leading up to surgery knowing this would help my chances of a successfull RC. Transplanted kidney did fine with this surgery, went in with 1.7 creatine it spiked to 2.08 just after and quickly came down to actually 1.4 today, go figure..lol. So I guess the battle cry here is to excersise your buttooty as it really helps. It also helps to have a good support system, my hunny has carried me on her shoulders through all of this, I am very lucky. Good luck and our prayers are with you.
Gary & Cynthia

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Hi guys, thank you for the great feed back. I am walking 30 to 60 minutes a day with my dog. My energy level has come up some since surgery and chemo so I can do that. I weighed 160lbs not that long ago and that has been my highest weight ever. First I broke my foot, then my bluging disk went out and bladder cancer kept coming back. I gave up and started eating what ever. Now I weigh 148.2 as of today at my TOPS ( Take Off Pound Sensibly) group. I have 3.2 to get to my goal of 145. I was at my goal weight for 7 years until the broken foot.
My Doctor is Dr Lange from University Of Washington Medical Center. He is a great doctor and he is going to get together with my transplant doctor to talk about all this. I'm sure there will be a lot of discusssion if he decides to take the bladder out. I want a transplant doctor in the surgery room if that happens. Did you guys have a team of doctors?

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Hey sharan, good job on the excersise. My surgeon and urologist is dr. Mathew hayn in Portland Maine, he has been nothing short of brilliant according to other surgeons and most importantly with my surgery. He had the transplant surgeon available if he needed him, but it turned out to not be necessary. It was nice to know he was near though. My transplant docs didn't have any issues with RC as they were familiar with dr. Hayn and his abilities. Good luck as you go forward. Thoughts and prayers from my wife and I.
Gary and Cynthia

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Same on the exercise - sounds likes you are doing well given the distractions, I know its always something. I just got a cortisone shot in the hip a few weeks ago and feel like a million bucks ever since. Keep it up, in regards to the docs I've been blessed. I been in the VA system since I was 22, but to say that and then be in the Boston system is amazing since at least here it is a teaching system for Harvard and Boston Universitys. I have had the same kidney doc most of my life, meeting him six months after the kidneys had shutdown in 1978, and he has been my only kidney guy since (with exception of his trainees that he supervises). I will probably get a local doc when he finally retires, but given that he is also on the staff of Boston Medical and a professor at BU I feel that I am getting one heck of a bargain. My urology surgeon is on staff at Lahey Clinic and I may had told you is a transplant surgeon as well. He does kidneys and livers, again a bargain as he is a pretty talented guy originally from Italy. When time was up trying to treat the cancer, both kidney and urology head at boston VA recommend that I go private and boston area docs due to the transplant, consulation that paid off. This month I have a CT scan scheduled and next month I see my new Urologist. I have graduated and no longer need to see my surgeon for yearly check-ups as this will be my third anniversary with the neo-bladder. The good thing is that Lahey Clinic recently open a doctors office in Portsmouth with Lahey trained urologist, so if anything did happen I am already in their system. It does make everything go a little smoother.

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have you guys had problems with skin cancer or heart disease?

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