Pyeloplasty

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Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

Pyeloplasty

Post by Carol »

Hi Everyone
I'm new to the site and as I'm recovering from surgery thought I'd let you guys know some of my journey with my kidneys to help others who are or have been through similar issues.

21 years ago when I was 23 yrs and 13 weeks pregnant I was rushed to hospital in agony and throwing up constantly. After tests it was discovered my left kidney was hydronephrotic and 3 times bigger than it should have been. I was told it would have taken years to get to that size and I must have had symptoms. I had. From the age of 5 years I would throw up and be in pain for 3-4 days at a time. I was told I was "neurotic" and got "worked up" so I learned to live with it. When I was 18 I could see a permanent swelling on my left side and went back to the doctor's again - he told me to go away and stop wasting his time... so again I lived with the pain. I met a wonderful man and we got married 2 years later. I had 3 miscarriages and was then pregnant a fourth time when I was rushed to the hospital. I was in critical condition and my husband was told I and my baby may not make it through the night. The doctors tried to put a stent up through the ureter to drain the kidney but it wouldn't go up so I was then sedated and they put a nephrostomy tube through my back and into my kidney. It was agony as the pressure was so intense, but it worked. I had the tube in for 7 months and the final 2 months was in hospital permanently as the tube kept blocking up and needed flushing 3-4 times a day. Each time it blocked up I would be in alot of pain again and the baby would get distressed. As I look back on the day by day journey I am amazed. The team looking after me were wonderful and at this time I was in Surrey, England. I had the baby by C-Section under a general anaesthetic and had a beautiful boy who we named David. He was healthy inspite of the meds, a miracle baby. 2 weeks later I had a hynes anderson pyloplasty (cut front to back) and they cut away a chunk of the kidney and ureter and rejoined it all. I tried to continue breast feeding but was in so much pain with the drains that I had to give up. They didn't put a stent in and after 3 weeks I began to have fluid leak and burst open the wound - scary! After more tests they found the kidney wasn't functioning and the join had completely broken down and I was peeing out of my side! So my left kidney was then removed on 10th December 1987. My right kidney was "sluggish" but doing okay.
I got pregnant again and gave birth to another son (John) in May 1989 and although I needed some bed rest my kidney did really well.
In 1994 I was very sick for a year and the old symptoms I used to get with my left kidney appeared. I had many tests but a diagnosis was not made. Then, amazingly, I found I was pregnant again (I had half an ovary - that's all another story) During my pregnancy they found my kidney was not draining properly but with me stretching in a particular way I was able to get it draining again. So I was on bed rest for the whole pregnancy and self managed the kidney draining. Everthing settled down again after I had a baby girl (Sophie) in Oct 1995.

Having moved to Canada in 1997 I was put under the care of a urologist who ran tests annually to keep an eye on my right kidney. During those tests in the summer 2007 and having been in alot of pain again, it was discovered the narrowing of the ureter was causing it to not drain properly and to avoid kidney damage I would need to undergo a pyloplasty surgery, this time a laparoscopic one. So I am now on day 6 after the surgery and home. The surgery lasted 4 hours and they removed the narrow section of the ureter and also moved a blood vessel that was constricting on the ureter as well. They put a stent in which is uncomfortable and will be in until 21st February. The kidney is doing very well and had become larger to compensate for only having the one which has been monitored over the years. All in all I'm doing well. Resting and trying to stay relaxed.

One thing that has changed in 21 years is laptops - its wonderful to stay connected with people while you're restricted in the activities you can do. So this is why I'm writing this. To encourage anyone facing a day by day walk to keep going, do what you can, try not to get frustrated with yourself (and those looking after you) and you will get through it. Also for those with children who are sick - keep pressing into the doctors to ensure you get a correct diagnosis - technology has changed alot since I was growing up and this will hopefully mean that more people are diagnosed properly and don't get left on the side as I was.
:) Carol
Cheryl in CT
Posts: 412
Joined: Wed Apr 21, 2004 10:17 pm
Location: Connecticut, USA

Post by Cheryl in CT »

Dear Carol -

What a story! I simply can't imagine all that you've had to endure with your kidney issues. It sounds as if you've come away from it all with a wonderful attitude, tho, hard as that may have been to accomplish! Three children, too - simply amazing!

Thanks so much for sharing your story. My own is not at all similar, but I think the common denominator is the fact that over the last 20 years, things have come a very long way, medically speaking, in how medical science deals with kidney problems.

For a very long time, I, too, was "sloughed off" by doctors whenever I complained of what turned out to be very obvious signs of renal failure. I had one doc who actually referred to me as "the gal who dumps protein" (and did he EVER say that was bad??? Nope, not once... I simply thought it was "normal for me"), and another doc, to whom I'd gone because I was sometimes gaining weight at the rate of 10-12 pounds a DAY (then losing it again, overnight) actually told me, "You girls will do anything to keep from admitting you're getting FAT." sigh... Some VERY bad memories there!

Anyway, Carol, I'm just happy for you that you've escaped from the "dark side" and have found the proper care for your renal issues. Thanks again for sharing your story!

all the very best,
Cheryl
Connecticut/USA
squiggles
Posts: 684
Joined: Sun Jul 09, 2006 1:25 pm

Post by squiggles »

Hi Carol and welcome to the group,many thanks for sharing your story with us :)
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

pyloplasy

Post by Carol »

Hi
Thanks so much for your posts.

I go in tomorrow for the stent to be removed... a little apprehensive... more to do with hoping and praying the site where they joined the ureter together wont leak! All in all I've done pretty well over the past few weeks. I have had moments when I've had pain but more often its just uncomfortable. Will let you know how I get on after tomorrow.
This group is so wonderful, with so many stories, and support.. thank you.
Carol
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

Pyloplasty

Post by Carol »

Hi everyone
Well its out! It was so quick it was amazing and my husband was so surprised to see me come out of the room he thought it still had to be done!
My surgeon has been so great throughout all this - we had a good chat and I let him know about this group so that he can let patients know about this resource.
Having the local gel anaesthetic was a bit cold and sore and when the camera was inserted was just like having a pap test done and then the surgeon said that's it... it was over in seconds.
I have no bleeding at all and peeing is fine. On my way home my kidney was feeling very tender and still is a bit but I took pain meds as soon as I came home and its easing off now.
I will go back in 4-5 weeks for a regular ultrasound to see how things are going and 9 months for another isotope scan and then back to annual check ups all being well.
The only thing I've been told not to do for another 6 weeks is sit ups due to the risk of possible hernia from the "pole sites" from the pyloplasty... my nice firm stomach will just have to wait a few more weeks! :lol:
Also I asked the surgeon about antibiotics and he said to just keep an eye on things as they don't like to give antibiotics unless its really necessary due to the resistance of them these days.
Take care everyone
Will check in again soon
Carol
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

infection!

Post by Carol »

:( Hi Everyone
Well my week of my kidney feeling so tender after the stent was removed and then a week of feeling exhausted and in discomfort over the past weekend resulted in me seeing my GP and speaking with the urologist. After some tests found I have a kidney infection and my Potassium is high. I'm on antibiotics and having more blood work done next week. Having an ultrasound scan done on Friday afternoon.
Its 2.10am as I'm not able to get into a comfortable position to sleep and getting up 3-4 times in the night to pee! Then feel exhausted again!
Has anyone else had similar problems. Before the pyloplasty my kidney was working ok just not draining properly.
Any advice or anything I should be on the lookout for?
Thanks
Carol
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

Post by Carol »

:D Well its been a while since I posted and just wanted to let you all know that I'm feeling so much better.... still have the odd ache but on the whole doing great.
I have the next renogram on 27th May.
I'm back to work and the sun is shining! :D Its been a long winter here in Canada but summer is here!
Take care
Carol
Yvonne
Posts: 2
Joined: Fri May 02, 2008 7:34 am

Another UPJ patient

Post by Yvonne »

Hi Carol,

Just wanted to say hi - I had a plyoplasty to correct a UPJ obstruction in my right kidney on March 31st, and had the stent removed today. Generally my recovery has been good, although the stent drove me crazy. (I just posted on the introduction thread if you want to read my whole story). I am also in Canada, I live in Vancouver and had my surgery at UBC. I read your posts before I went in for surgery and found it very helpful.

Glad to hear that you are feeling better now.

Yvonne
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

Post by Carol »

Hi Yvonne
Isn't this site wonderful - I'm so glad you found some of the posts helpful for you going in for your surgery and that you're recovering well too. Yes the stents are uncomfortable and its a relief when they're out!
Take it easy still and watch you don't lift for a while!
Let me know how you're doing
Take care
Carol :D
EsmereldaPea
Posts: 6
Joined: Tue Feb 03, 2009 4:30 am

Pyeloplasty 30+ years ago

Post by EsmereldaPea »

Hi, Carol and all -

I found this site via Google, and Carol's story sounded similar to mine.

I was 17, a senior in high school, when I started having pain in my right lower quadrant. I was having flu-ish symptoms at least one or two days a week. I was in x-country and running 6-9 miles a day. I don't remember having any pain during the week, while training. The pain would only come on during meets (stress?). It took them awhile to diagnose hydronephrosis in my R kidney.

It was a UPJO. I had an open pyeloplasty - not sure which technique. A fairly normal recovery, and intermittent kidney infections over the next 4-5 years, after which time I had few if any additional infections.

My symptoms were very atypical:
- Right lower quadrant pain, no back pain
- Normal Creatinine, BUN
- No blood in urine
- No UTIs

I was diagnosed with Stage IV endometriosis in my early 20's. Treated with laparoscopies and hormone therapy. At 35, went to a new "endo expert" Gyn - told her I was feeling worse and asked if they could go back in and "take a look around" - it had been about 10 years since my previous one. Her response: unless you are ready to have children or are in excruciating pain, we won't go in.

Seven years later and self-employed (read: uninsured), I was urinating 5-6 times a night and started to have kidney back pain in addition to the pelvic pain. This drove me to the doc.

Tests revealed large masses in my abdomen and bilateral hydronephrosis with extrarenal pelves. I had a frozen pelvis with large endometriomas on both sides and a 20-week sized uterus.

The surgery took 5.5 hours, with extensive uretal, bladder, and rectosigmoid involvement. The ureters were tunneling through the endometriomas, and had to be skeletonized to free them of the adhesions and ovarian material. The bladder was oversewn in one area that was thinned. Entering surgery, I was told that there was a possiblity that the ureters would have to be dissected and reimplanted into the bladder, if there was enough length. I may end up with a urostomy. I almost ended up with a colostomy. Fortunately, neither happened.

I never had any followup with my kidneys/ureters after the pyeloplasty or the hysterectomy. I was never told I should, but apparently, it is recommended. Hindsight on my part??

So, here I am, 6 years post-hyst, with right lower quadrant pain and more frequent urination than usual, and fatigue. I have had numerous tests recently, other than the renal stuff. I DON'T have sleep apnea, appendicitis, diverticulitis, or lung cancer. Yes, all of these things are piling up. Fatigue could be from a TBI 2.5 years ago or perhaps from kidney malfunction?

Had a renal scan today (MAG3 and Diuretic). Was there an hour and forty-five minutes - should have taken an hour. Overheard the techs talking about how the transit slowed at some point. Going to see the doc on Wednesday.

I guess I'm posting this b/c I'm a little freaked out about this. I have a bad feeling that I will need surgery on at least the right side, if not both. I read that skeletonizing the ureters could compromise blood flow, and am wondering if that and/or "hardening" of the ureters from scar tissue or adhesions could be happening as well.

Has anyone here had a successful secondary pyeloplasty? Open, laparoscopic, or robot-assisted laparscopic?

Anyone else have endometrial involvement with the ureters or bladder?

Looking for some encouragement, I guess. Perhaps I should have posted this is in a separate post introducing myself.

Cheers,
Esme
Carol
Posts: 13
Joined: Sun Jan 27, 2008 8:06 pm
Location: Canada

Post by Carol »

Hi Esme
Wow - you've been through alot - glad you found the site - its an amazing resource and good to know that others are going through or have been through similar things and that you're not alone.
Is it your GP you're seeing on Wednesday or are you seeing a urologist for all your tests? Have you seen the urologist yet?
I've been fortunate to have a urologist that has been seeing me and doing tests to keep an eye on things every year for the past 11 years, which I have found really helpful - and I feel I'm being looked after - at last!
I want to encourage you to just take it a step at a time - see what your Dr/urologist says tomorrow - please let me know - I'm thinking about you.
Take care
Carol
:)
EsmereldaPea
Posts: 6
Joined: Tue Feb 03, 2009 4:30 am

Post by EsmereldaPea »

I saw the urologist last week, and he ordered the renal scan. My GP is good for sinus infections and little stuff, but not really for the big stuff. :?

I had a horrendous experience with a urologist prior to my hyst - to the point that I wrote a very long letter of complaint to the administration of his practice, and asked for a face-to-face sit down after my recovery. Still makes my blood boil!

There was a different urologist on call for my surgery who was day to the first doctor's night.

With all that has happened to me and my family over the years, I have learned to push docs and demand answers, and switch docs if I'm not happy. Questions, questions, questions!! Luckily, I understand medical jargon pretty easily, and with the Internet, it is easy to educate yourself. That wasn't around in the days of my first pyeloplasty and my initial endo treatment.

When I go into the doc tomorrow, I'm going to make sure I ask about life-long follow-up. I never thought about the pyeloplasty failing, but am not surprised based on what the Gyn surgeon had to do. If that is indeed what happened.
EsmereldaPea
Posts: 6
Joined: Tue Feb 03, 2009 4:30 am

Update

Post by EsmereldaPea »

Hi, Carol, and all -

I realized I hadn't posted a follow-up to my original post. I hijacked someone's thread - sorry!

I went back to the Urologist for my renal scan results, and it was better - and worse - than I had imagined.

The renal scan showed both kidneys with potential UPJOs. As most of you probably know, normal transit time with a renal scan is <10 minutes. Between 10 and 20 minutes is "indeterminate", and 20 or more minutes is definitely blocked and usually requires surgery.

Transit time for my R kidney was 19 minutes, and the L was 17 minutes. Not terribly good news. Wasn't expecting problems with the L. From what I was told, those numbers would NORMALLY indicate surgery on the right side, especially with the L side being compromised as well.

However, since the pain is manageable (but I have a really high pain threshold), my numbers are good, and the kidneys are sharing the load equally, he wants to just monitor me. I'm OK with that, as I don't want to rush into surgery. I just don't want to compromise my long-term health by putting off surgery short-term, especially with BOTH kidneys having problems.

The good news is that when surgery IS done on the R (it seems inevitable long-term), they will not do an open surgery, as it is inadvisable to do the same type of repair/entry twice. The risks of a repeat surgery are high any way you slice it, I guess. (pun not intended, but acknowledged!)

So that's where I sit - on the fence. Anyone been in my position and regretted, or relieved by the decision they made?

Esme
cayla_n
Posts: 1
Joined: Tue Mar 30, 2010 3:00 pm

Hope

Post by cayla_n »

Carol-

I just want to cry after finding this post you put up. I am 22 yrs old and have a 6 month old son. When I was 20 weeks pregnant I was rushed to the emergency room with the same symptoms you had. Upon an ultrasound found severe hydronephrosis and two weeks later had a stent put in, stent failed and had an emergency nephrostomy tube put in. Dealt with multiple infections as i'm sure you know all about the upkeep of a N. Tube, it is miserable. Got an infection so severe at my 37th week we had to induce me early because the antibiotic that I needed was harmful to my baby and without it I was at chance of becoming septic and dying. Two weeks after having Max I had to have a pyloplasty surgery I had a stricture in my ureter. 2 weeks after the pyloplasty it failed, Hydro came back and I flew to cincinnati where my family lives and saw a specialist. We found that since I was a baby I had dialation of my kidney however it never posed a problem until I was pregnant. I had a renal scan done and my right kidney was functioning at 32 percent and the left one at 68. Three weeks ago I had another pyloplasty done. I have a stricture right at the top where the ureter and kidney meet. After the surgery I had internal bleeding and had to have a blood transfusion, it is now under control. I go tomorrow to have the stent removed and hopefully be done with all of this! I dread the hydro coming back because the next step is to remove the kidney. I am so emotional after reading your post because throughout this year I have not been able to find any similar story, I have felt so alone and isolated in all of this because I have been unable to reach out to someone who knows what I can possibly be going through. You have given me so much hope! I have been told I can not have any more children. Possibly If they remove my kidney I can, but there are so many risks as you know. I would love to hear your insight on everything and your thoughts. Its so easy for a Dr. to give their medical opinion but they have no idea what it is like to be on the other side. Your opinion matters so much more because you have went through it and are living proof of what is ahead of me. As well as anyone else with similar stories of success or failed attempts!

Thanks so much!
Cayla
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Post by amanda in CA »

I am so sorry to read your stories, you are 3 very resiliant people. It just strengthens what I believe, that too many people are fobbed off when they shouldn't be and doctors should listen to their patients. My renal failure was caused by glomerulonephritis, but it took several years of non-specific symptims, falling haemoglobin (despite taking iron tablets continuously for several years) and increased blood pressure, abnormal blood tests which indicated the possibility of chronic renal failure. It eventually took one doctor, who incidentally I was seeing about infertilitiy and not these issues, to take a stand and get me admitted for investigations. He kept telling me to talk about these issues to my military 'GP', which I did with no result. It's a shame that there are so may arrogant, but ignorant doctors out there, but thankfully, also, some very good ones.
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