In the ER again after kidney tube surgery last week

[Kimmilemo]

So tired of seeing my husband in and out of the ER, hospitals and surgery’s. His right kidney feels like it’s going to explode. He had surgery last week getting back tubes and stents into his kidneys . And he kept his Foley in he had from the emergency room the week before from retention. I just know since aug 2 and his SP they did its been a living nightmare. At this point I’m ready to take him to the top prostrate cancer urologist anywhere he may be.

[Tall_Allen]

What a nightmare! Isn't a nephrologist more appropriate now? It sounds like his problems were caused by the salvage prostatectomy rather than the prostate cancer.

[Kimmilemo in reply to Tall_Allen]

I agree on all accounts , but I’m always curious that the path report shows involvement of the bladder neck. Know any good nephrologist? Also at the same time they confirmed his prostrate cancer recurrence they had a adrenal cyst show up , we tried following up with a endro to see what that was about but they were not interested due to him having PCA they wanted him to keep that as his focus. I wonder if someone is missing something.

[jimreilly]

sorry! I hope things improve quickly!

[Kimmilemo in reply to jimreilly]

A couple of shots of pain meds helped some. We’re home 🏡. Thank you for the kind words.

[Hidden in reply to Kimmilemo]

I’m so happy that you are home at least..I’m praying for him to get thru this torture .. Keep strong yourself , keep the faith.. scott

[Lynsi13]

The tubes can become dislodged very easily! My dad had to go back in several times to have his fixed. He always knew that they were out of place because of the pain!

[Kimmilemo in reply to Lynsi13]

Thank you for the insight.

[Hidden in reply to Lynsi13]

No fun indeed.

[TWTJr]

It seems that you are describing problems of obstructive uropathy, with bilateral percutaneous nephrostomies and a foley catheter. You describe stents. Stents are internal, placed during cystoscopy, and extend from the renal pelves to either the bladder, or through the bladder, penis and drain externally into a bag. I am not completely certain what types of urinary diversion your husband has, and cannot specifically comment. However, all of your difficulities fall within the province of urologists and interventional radiologists, and almost certainly both. It seems that he has nephrostomies that keep falling out. This does occur if they are not secured internally and externally. They are secured internally with a pigtail that has a string that is tightened that can come loose. If they are not sized properly they can also fall out.

From what I can tell from your description, the urologic plumbing that has been placed may not have been done well, or his anatomy or disease state may be affecting drainage.

Nephrologists are concerned with medical treatment of renal failure, and rely on skilled urologists or interventional radiologists to adequately unblock obstructions or place external drainage, which may even include supra-pubic cystotomy.

These procedures are complex and require good judgement, experience and extreme skill. I don't know where you are being treated, but going to a large medical institution, hospital or teaching hospital would be best as they perform these procedures almost daily. Smaller community hospitals may provide these services but these procedures require skill, optimal supplies and equipment, often lacking at smaller hospitals.

I have personally completed these type of procedures in my practice, (neuroradiology and interventional radiology) but over the final 20 years or so quit doing so simply because my results were substantially less optimal than others who performed these procedures daily.

Good luck and I wish you the best.

[Kimmilemo in reply to TWTJr]

Thank you so much for your intellectual post and time and thought. My husband is considering a bladder ostomey, do they remove your bladder to do this procedure? He has prostrate cancer around the bladder neck they found during his selvedge prostatectomy as well as positive margins. Nalkrats said we might look into my husband having NET cancer of the prostrate, he said with a 10 year remission and then lots of catheter problems now with mineral buildup since the SP it’s something to look into with a special blood test. We are located in Saint Louis MO, my husband Mel gets his care from cancer centers of America outside of Chicago in Zion Ill, that’s when we’re not in the ER at our local small hospital but is affiliated with big Barns hospital if they every would need to transfer him.

Thank you again for your time and talent.

Kim , (Mel’s caregiver and support )

[TWTJr in reply to Kimmilemo]

No, the bladder is not removed. A foley type catheter is inserted just above the pubic bone, directly into the bladder. It is usually done with mild sedation, and using fluoroscopy (real-time x-ray), ultrasound or CT scanning.

Your problem may lie with the small hospital ER services. I doubt very seriously that they would have the skill and materials to provide optimal care to you. Cancer Centers of America employ various skilled MDS, predominately oncologists, and often subcontract for specialty services (like urology). They may, or may not, even have an interventional radiologist (IR) on staff. If so, the skill level of the IR may be problematic. I of course do not know the specifics, but was myself initially treated at Tulsa CTC, and there was no IR at that hospital.

I am getting the feeling that it would be beneficial to seek the best urologic and interventional radiology consultation that you can get. Washington University St Louis uses Barnes-Jewish Hospital, which should provide a level of skill that would be helpful.

[Kimmilemo in reply to TWTJr]

If my husband already had Radiation for his first line at initial DX 10 years ago can he still do some form of radiation on the bladder , kidney problems from the SP surgery and or bladder neck cancer?

[Kimmilemo in reply to TWTJr]

He did have a sub pubic catheter with a Foley catheter that both were surgically placed but his Foley catheter started working well with no more input into the super pubic so they took that one out. Then his regular foley clogged up with a mineral buildup and he ended up with renal failure . Thank Hod he was able to go to the bathroom or at least urine came out in large volumn so after four days and his numbers went better they met him out. Then a few weeks later he couldn’t go at all his pads were dry , the ER gave him a new Foley and it worked but cat scan showed still retaining and his kidney functions were not good. So that’s when they did the tubes and left the Foley. That’s where we are now.

[TWTJr in reply to Kimmilemo]

You are describing the issues that are involved with complex urinary obstruction, involving the upper urinary tracts, lower urinary tracts, or both, and really can only be answered by very skilled urologists and Interventional radiologists who do these procedures very commonly. Every case may be substantially different, and review of all images from recent procedures would be necessary for specific advice. Get a copy of recent studies and seek second opinions as advised.

[Kimmilemo in reply to TWTJr]

Doing it now. Thank you 🙏

[Hidden in reply to Kimmilemo]

I was in that condition ..

[Hidden in reply to TWTJr]

The cath labs are busy....

[j-o-h-n]

To quote you:

"At this point I’m ready to take him to the top prostrate cancer urologist anywhere he may be."

How about checking out NY Presbyterian Weill Cornell Neurologists for help. Hospital has great reputation (New York City).

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/27/2018 6:59 PM EST

[Kimmilemo in reply to j-o-h-n]

I’m game, better than west coast ?

[j-o-h-n in reply to Kimmilemo]

**See Below**

The top ranked hospitals for nephrology for 2017 - 2018 include:

1 Mayo Clinic

2 Cleveland Clinic

3 Johns Hopkins Hospital

4 New York-Presbyterian Hospital<----- NYC

5 UCSF Medical Center

6 Ronald Reagan UCLA Medical Center

7 Hospitals of the University of Pennsylvania-Penn Presbyterian

8 Massachusetts General Hospital

9 Barnes-Jewish Hospital

10 Mount Sinai Hospital<-----NYC

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/27/2018 9:26 PM EST

[Kimmilemo in reply to j-o-h-n]

Barns is here in Saint Louis but thank you so much for putting this together . I’ll will show yo my husband when he feels up to it. He’s running a low grade fever tonight. I’ll will keep everyone posted.

[Hidden]

A prostate cancer specialist is best.. not nessasarily a urologist, you also neeed a uro. The specialist makes the best calls. My wife and I are aware of the what he’s experiencing around the clock.. We pray it gets better.for him and that you retain your strenght too.. . Hope that he can now stay out of the ER and hospital. Thank you i was hoping to hear from you.. Take care....Scott