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Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/20/2009 9:18 AM (GMT -6)   
I would like to start this thread on Treatments.  What kinds, positives and negatives and outcomes.
I will start. 
Stents put into place in both ureturs to permantely inlarge them.  These are painful for me when I have to have them in for up to 6 weeks.  My urologists over the years say some can have this done and not feel a thing.  But others seem to stay in pain the duration.  I seems to be in the later group my body tries to reject them everytime.  One time is coiled into the bladder, you want to talk about pain!!!!!!
Hoops, retrieval of stones or obstructions.  I handled these really well not much pain after other than bladder spasms.  Longrun complications is scarring.  I was never told that scarring can occur.  Now I look like my career was a
Laser Lithotripsy  I was not a canidate for this procedure.  My stones are like glass shards and inbed like slivers.  So this procedure wouldn't help me any.  Anyone else have this done?
Looky Looky  ..  LOL  Going in and poking around.  I had this done which at the time I was more concerned with scarring.  The pain was really bad afterwards but the findings helped find a path of treatment.  They also went ahead and placed another stent while in there.  Last December.  Holiday time was a painful one.
Those so far are my sugical treatments.
Non surgical treatments.
Low dairy and calcium intake.  Didn't like this treatment.  Then to find out the stones are not calcium based so I went through misery not having my cheese and milk.
Medications.  I lived on Macrodanten (antibotic) for years.  I probaly have such a huge tolerance to this med.  Never really helped I still had kidney infections which caused more scarring.
Straining urine, I have strained gallons and gallons of urine.  Never really understood why for I never caught any
I'm probaly forgetting alot, I just wanted to start a treatment thread for myself and others to come look through...
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Regular Member

Date Joined Aug 2008
Total Posts : 470
   Posted 6/20/2009 10:42 AM (GMT -6)   


This is a great idea so that we can see, discuss, compare and comfort each other.

I've mostly had the go up and remove method due to my stones having spurs on them and getting caught in the ureter - little did I know this causes scarring - until I read your post - probably why my tube is now closed!

Did the lithotripsy thing - they said 2 came out but didn't have any indication at all so I had to take their word for it.

Had the percutaneous nephroscopy - then all went downhill - supposedly only had 1 large & 2 small stones going into procedure but when dr went in, kidney was full of stones, it him him 3 hours to remove them all.  Came out with very large nephroscopy tube that leaked urine constantly from my back, was always changing my clothes and bedding for the first week.  Ended extremely ill with c difficile (infectious colitis) due to urologist over medicating me with antibiotics - they have to be extremely careful with me and antibiotics because I only have 2 inches of my colon left.

Ended up being rushed to my colon surgeon and got a new urologist who was reluctant to take over the case but did and put in new tube, said there was a blockage but would deal with it later due to severity of c diff.

Am now 7 weeks later still with neph tube, dr found ureter closed with scar tissue, wants to open with laser & put in stent.

Between reading others experiences and knowing I can't the chance of this not working, am seriously thinking of not having this done and having robotic surgery instead, can't afford to miss more work.

Thanks for the info; it really helps especially when we have decisions to make.


spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
Am now down from 17 meds a day to 8 and VERY healthy:)
There's always hope and things will get better :)

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/22/2009 8:43 AM (GMT -6)   

Ok whats all your thoughts on "Lisinopril"

I have done some more research on studies they are doing for PKD.  Slowing the progression.

A big one is the use of Lisinopril to slow the progression.  I'm kinda curious about this one.  I take the highest dose for my BP.  But in the last year we have noticed a slowing of cyst growth.  Before this medication it was progressing pretty fast.  Now new scans show minor changes.

Are any of you on this medication and have you seen any changes?????


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 6/22/2009 10:20 AM (GMT -6)   
Hey Laurie, I am on 40 mg of lisionpril, Not for stones or PKD but to help with the protein leaking in my urine and it is working ok. Okay, to be honest, I haven't seen a change in really anything. I think my bp went back to normal but a few weeks into it, it has jumped back up to 142/107...thats where it likes to stay for some reason. I wish I could answer some of your questions about the other kidney problems...I am interested in knowing the aswer to this!!!



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/29/2009 5:08 AM (GMT -6)   

I started doing alot of research for all of us and everyone who might wander into our forum for information.

I found a treatment that they started doing but no common for advanced PKD.  It was kinda interesting.  I was impressed that it takes all the pain away.


What is a simultaneous bilateral nephrectomy transplant?

A bilateral nephrectomy is when both kidneys are removed. A simultaneous bilateral transplant is when the kidneys are removed and then a kidney transplant is done in the same operation.

What condition is this used to treat?

Polycystic kidney disease (PKD), and potentially it could also be used for renovascular hypertension and kidney cancer.

What is PKD?

PKD is the most common genetic, life-threatening disease that affects more than 600,000 Americans and an estimated 12.5 million people worldwide.

Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. It can also cause hypertension of the kidneys, as well as infection and pain. Ultimately, the diseased kidney shuts down, causing end-stage renal disease, for which dialysis and transplantation are the only forms of treatment.

PKD comes in two forms. Autosomal dominant polycystic kidney disease (ADPKD) is the most common, affecting 1-in-400 to 1-in-500 adults. Autosomal recessive polycystic kidney disease (ARPKD) is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children.

How many simultaneous bilateral nephrectomy transplants have been done at the University of Maryland Medical Center?

At the University of Maryland, we have done 50 total simultaneous bilateral nephrectomies then transplant for the treatment of PKD.

How common a treatment is this for PKD — to do the combined nephrectomy transplant?

This is not a common treatment for PKD. The University of Maryland Medical Center is one of the few centers nationwide that offers this treatment.

Normally with a kidney transplant the old kidneys are left in, but with PKD, since they have cysts in them, would the surgeon normally remove the old kidneys before they do the transplant?

There’s no protocol or consensus on it. This has not been an accepted case of transplant nephrectomy because of the risk of infection and how big an operation it is. That’s why there is not a consensus. Some people take them out way before, some people take them out after. I don’t think many surgeons do it all at once.

Sometimes you take out the native kidneys before transplantation, sometimes you don’t. I’d say for most of the transplants done, they don’t take out the diseased kidneys if it’s due to the standard conditions such as hypertensive nephropathy or nephrosis (congential). But patients who have renovascular hypertension would have their kidneys removed.

What are the benefits of combining the two operations?

One operation relieves patients of all the pain and suffering from the kidneys. They’re getting a transplant all at once so they can go home; the whole problem is solved.

I think there are two points: One, it’s unique and a good treatment option that makes sense and seems to work. And when it works it’s better than the other alternatives -- removing the kidneys before the transplant, doing it after, or leaving the kidneys in.

What are the risks?

The possible disadvantages would be if it weren’t working, if all our grafts were failing but we haven’t had a case of that yet.

But we wouldn’t do something that would increase the chance of infections. We’ve had good success and the cases I’ve been involved in haven’t had any problems. That’s not always the scientific method, but in this case there’s no model so we started doing it with good results.

Once the old kidneys are removed, does that cure the patient of PKD?

No. PKD is an autosomoal dominant disease. The liver will continue to grow cysts. Patients won’t get hypertension or renal pain, but they do get cysts in other places such as the liver and pancreas. But those cysts won’t cause the same type of problems that the kidney cysts do.

Is the transplant the only treatment option?

It’s the only cure for the renal manifestations of the disease, but there are other treatments. Some people get frequent cyst decortications (removal of part or all of the outer surface of the kidney). Sometimes if one kidney is having infections or pain, laparoscopically you can just go in and open some of those cysts. For some people, that is shown to be palliative. Draining the cysts is another palliative treatment. If the kidneys function some people get by with cyst decortications.

What should patients with PKD consider the University of Maryland Medical Center?

I think we can prove that based on patient testimonials -- because we’ve done thousands of transplants and we’ve done several that involve this -- that these patients are thriving and are doing well.

I don’t think a complex operation such as this would work just anywhere; this is a job that really should be done in a center such as Maryland.

We have an experienced team of urologists, transplant, plastic surgery and general surgeons and that experience is important. And it’s an advantage to go to a place where the urologists have done a number of these and we do it quickly. We’re doing this in the same location as a transplant program that’s done 2,000 transplants, so I think working with them is important because if it is a hard case they have the experience to come in and do a transplant in that situation.

That team approach is what makes us unique. The operation is successful if done in the right hands. It requires a center with the depth of expertise that we have.

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39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

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