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What can I expect (for recovery, quality of life, life expectancy, etc.) after just having a percutaneous nephrostomy procedure done on my right kidney, with a stent inserted, and now facing the same on the right side, without the stent?

By June 20, 2009 - 11:10am
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What can I expect (for recovery, quality of life, life expectancy, etc.) after just having a percutaneous nephrostomy procedure done on my right kidney, with a stent inserted, and now facing the same on the right side, without the stent?

I am male, 55 years-old, and battling high and rising Prostate cancer-PSA numbers. We can't proceed to find out why the PSA number is such, after successful radiation treatment, with a supporting LHRH Agonist Eligard® six-month shot*, until the kidney(s) problem is stabilized (shooting now to get the creatine levels down from a high of 6.5 eleven days ago, before the stent and nephrostomy tube - last at a 4.2 four days ago - down at or below 1.5). Post-radiation got my PSA number down to .6 (from an astronomical number!). *But I discontinued the Eligard® teatment due to side-effects. Alternatives (such as Casodex®) have proved less successful, and now I have this kidney situation, with many questions. I'd been given an opportunity while hospitalized to speak with a Nephrologist, but it has not materialized. The big problem is, my urologist has been on vacation this whole week following the stent and tube procedure, and I've been left with only a PA to interact with (???). On receiving the results from my latest blood test (this past Monday), the PA determined I should immediately return to the hospital, to prepare for and have a nephrostomy tube inserted on the left side, as it must be slowing the recovery process (I tend to agree). There was no mention of the stent procedure. But I refused to move that quickly, at least without consultation with my urologist, a recommended substitute, or with a certified Nephrologist, mostly for general questions such as I've entered above. I am now scheduled for the left-side procedure in three days (Tuesday, 6/23), after a new blood test Monday. This, to my knowledge, will leave me with a bag on both sides of my body, one expected to be removed some time soon, and the newer one basically "permanent", unless and until some other procedure and approach is taken, such as transplant or dialysis.

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Wow. Thanks for the nice words! I didn't know you knew Kelley! She's an amazing, warm soul. That's really good to hear.

A couple of things:
- Tina has submitted your questions/our thread to another doctor. I have my fingers crossed. If that doesn't work I'm going to start stomping my foot.

- Did you see up above that an Arizona urologist has found our thread and says he also could offer advice? I am trying to get in touch with him personally to ask if he'd review our thread.

-- I'm sending you a private message through EmpowHer's message box that has my personal email address in it. Feel free to write me there with anything that you don't want on the general board.

And I'm hoping that all your numbers are good after today's checkup/blood test. I know how important it is to be making some progress, even a little at a time. We can often handle baby steps as long as we know that they keep moving in a good direction. I'm thinking of you. And I'll go send you my email address now.

July 2, 2009 - 8:24am
EmpowHER Guest

Thanks. Kelley Howard confirms (without need or prompting) that I'm in very good hands indeed with you.

I'd prefer to give my doctor's name to you directly, or to a known, qualified and preferably local specialist.

July 1, 2009 - 5:11pm

Hey, Philedude. Has your right side pain gone away, I hope?

I'm sorry we haven't been able to get our expert to answer your question quickly. We're disappointed about that too. But I am still here ready to help you research anything, and Tina and I are still determined to get someone to look over your question and give you any thoughts or answers she/he can give.

It's not just about money, though of course I'm sure that enters into it. Most of our experts are happy to be associated with EmpowHer and they want to help. But I guess sometimes our question goes to the bottom of the pile on the desk when they are busy with patients and we have to wait our turn.

Hang in there with us, Philedude. And let me know how you're doing, OK?

July 1, 2009 - 9:53am
EmpowHER Guest

Nice to hear from you, Diane P. First, since I don't truly have "kidney disease" as far as anyone has told me (just a problem with a "mystery something" blocking the tubes to the bladder), I am personally watching my diet according to the standard hospital literature for the disease (man, is it a lot and very limiting!). My appetite is indeed coming back, but I think I'm still down more than 35 lbs. compared to two months ago. I'm looking to split the difference, to get back into peak tennis condition :-) !

It's Tuesday, and my next visit to Dr. P. for labs and a look-over is Thursday. I had a bad day (just no energy) Sunday and a better day yesterday, until bedtime, when I felt there was/is something wrong on the right side... maybe the stent is somehow incorrect or something that's giving me pain when I urinate upward toward the right side. It is better this morning. I would never, ever have believed it would be so difficult jsut to get to talk with a specific expert in an area of health care in this country. I guess it really is all about money. Don't get me started!

Have a great day.

June 30, 2009 - 7:26am


Please do keep updating us as you feel up to it. We're looking for another doctor to read this thread and give us an opinion since the first one has taken so long.

June 29, 2009 - 9:32am

Ah, outpatient. That's awesome. Just being at home helps, I know.

I am laughing at "so tired of ... being so $$%^%&! skinny all of a sudden!" It's a sentence I don't see very often! But I know it's very real to you. My brother was in the hospital with heart issues and they gave him medicines that got sooo much of the weight off him so quickly. He'd always been proud of his body and felt like nothing but a weakling after that. I'm sure the pounds will come back on when you feel like eating more, and when your body's not under such stress as it is right now.

Are you restricted right now as to what you can eat?

Here's one page with food tips for those with cancer and it says calcium is especially important for you. I know that you feel the prostate cancer is gone, and I sure hope so. I'm sending you these pages more in terms of building your strength and immunity back:


This page also deals with lack of appetite and constipation:


Can you eat watermelon? :


and one more:


And here's one for the kidneys:


And the Southwest Kidney Institute web site looks very good. With 30 physicians, I'm hoping one can get to see you soon.

Glad you're home. Hope this weekend is better than last, by far.

June 27, 2009 - 9:47am

Hey, Philedude. Creatine it is. I'll go with that on my web searches unless I hear otherwise from you.

So glad for the update. And I'm really happy that your procedure turned out well. That's one good step in the right direction. Though dealing with your pain and fatigue sounds rough. And I know that getting actual "rest" in a hospital can be an exercise in frustration, what with having to wake up to take medicine, go for tests or just mind to bodily functions. Especially if you're having to steel yourself for an hourly urination test of wills.

Any possiblity of that visit with the nephrologist after all? Can your urologist help you schedule such a thing? I continue to wait and hope along with you that our kidney expert will come through for us, any hour, any day. If we haven't heard anything by Monday I'll see if we can start fresh with another expert. (I don't have to tell you how busy they always are; you are dealing with it daily).

Can you tell me what city and state you're in? I would be glad to try to research experts in your area if that would prove helpful.

Hang in there, update when you feel better, and know that we're thinking of you here at EmpowHer. I'm sending peaceful healing vibes over the cyber-ways to your kidneys, and I'll check in on this thread this weekend. Diane

June 26, 2009 - 11:02am
EmpowHER Guest
Anonymous (reply to Diane Porter)

First, want to make sure you know the last procedures done on Wednesday were outpatient. I went in at 8:30 am and was out around 4:30 pm. One thing I'm great at is anaesthesia - out like a light, and awake with a gentle word, like nothing happened.

Dr. P. has assured me he is intent on providing me with contact with a nephrologist as soon as possible, probably through the same organization that had called me (Southwest Kidney Specialists, here in Phoenix, Arizona). This "recovery" I'm going through has so many different phases so far, I need to write something new down to ask about every ten minutes or so! Today's earlier weakness may have been as much attributable to the constipation battle I'm waging, and s-l-o-w-l-y gaining ground on, as anything else. But I'm so tiredof being tired, and being so &%$#@! skinny all of a sudden!

June 26, 2009 - 7:44pm

Hi, Philedude,

Hoping you're doing well. Wondering how your dye test went, and whether you've had more procedures or blood tests since then. I was so happy to hear that both the creatine and PSA numbers were falling.

You have probably come upon this page in your own research, but here's a thorough page from the New Prostate Cancer Infolink that lists current articles and other pertinent links regarding Degarelix and other similar medicines:


I have a question for you, Philedude. We keep writing of creatine, but should it be creatinine? (Both substances do exist, so I want to be sure).

For others in similar circumstances or who might just be following along, here is a page on understanding kidney function:


Take care, Philedude. I'm looking forward to any further updates.

June 25, 2009 - 4:32pm
EmpowHER Guest
Anonymous (reply to Diane Porter)

I'm still here, Diane P. Wednesday's procedure, to explore the left kidney structure and determine how to proceed (instead of the dreaded PN!) indeed worked out as I imagined; the tube blockage allowed a large stent to be inserted from below. And, the nephrostomy tube on the right side was removed. Dr. P did the stent procedure, and I felt and feel virtually nothing from that - he is very accomplished and capable. I still don't know what blocked the tubes, but that is also to come, as I get better.

Adjusting to the tube removal is proving to be a challenge, with a good deal of right kidney pain that then enlists the left kidney as a warrior ally, so to speak, each time I urinate, which is pretty much hourly, so far (day and night). It's getting better here on day 3 (Friday, 6/26), but I'm very, very tired today, with lower and upper back pain I didn't have yesterday. These are the kinds of things I wish to discuss with a kidney medical expert, and look forward to your efforts coming through.

Thanks for hanging in there with me. I have more to say, but am not in a great mood to sit here right now. You are much appreciated, for many things you've done, said and continue to.

June 26, 2009 - 10:34am
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