Renal Pain Of Unknown EtiologyFor the past seven years or so I have dealt with pain in my right kidney that's been increasing with frequency and strength.
About a year ago I finally got referred to a urologist. They got a CT, an MRI and an IVP and nothing looked very remarkable about my kidneys at all. So, the urologist suggested that I might have a pain syndrome and I had three options to consider.
1. A denervation
2. A renal autotransplant (where they take it out and put it back in)
3. A total nephrectomy.
Just as soon as they could be certain the pain was from my kidney and not something else. So they did a renal nerve block where guided by CT a doctor injects lidocaine into my renal capsule. It worked! For 45 minutes, I couldn't feel my kidney. Until then, I hadn't realized that even when it wasn't hurting very bad, it was still there, aching away.
So I decided to have the whole thing taken out. If it was perfectly functional, why not get it out and save someone's life with it, right?
The kidney donation process is long and very tedious. I had to have a cystoscopy and a colposcopy, a 24 hour urine test and, that's where the donation process ended. My urinary excretion of calcium is too high, I am at risk of developing stones and because of that, they wouldn't accept one of my kidneys on the off chance that I formed a stone that would one day ruin my only kidney.
The news was devastating. I had felt so good to be able to give this gift to someone and all of a sudden, I find out I can't.
So I go back to my urologist and tell him I've decided to go ahead and get the autotransplant even though the surgery is long, very invasive and the recovery time is also long and invasive. 7-10 day hospital stay, several weeks at home recuperating.
The denervation is something I considered for about two minutes but it needs to be done over and over again and sometimes it doesn't even work at all so, pass.
In preparation for the autotransplant I need another CT scan so they can see how the arteries to my kidneys go and I need a kidney scan to see if the right one is even really working as much as the left one is. (It's doing 52% of the work, I'm glad I'm keeping it)
So far so good, all the tests are coming back like they should, everything is on track, I have my surgery date scheduled, I've taken the time off work, sorted out child care and an old friend is flying out to NYC to help me after the surgery.
Well, the day before I get a phone call from this doctor telling me that she had been looking at my chart and saw that I had rescheduled a procedure that had previously been scheduled for the day before the surgery. She had called my urologist and explained to him that she thought it was more important to get this LEEP procedure done BEFORE my kidney surgery so he canceled/postponed the surgery. THE DAY BEFORE IT WAS TO BE DONE!
I was furious that I hadn't been consulted about this, I should be able to make my own decisions about my health, right?
Not only that but I had spoken with my regular doctor about getting the LEEP (I have a grade 3 cervical dysplasia, basically a pre cancerous lesion in my cervix) and the LEEP interfering with me healing from my autotransplant so she called the office they do the LEEP and it was apparently not a big deal. At my two week pre surgery evaluation, I spoke with the doctor who met with me that day about it, a week before my surgery, I wrote the urologist about it. NOBODY at any point expressed any concern about me getting the LEEP after the kidney surgery. Until the woman who was set to do it decided to call my urologist.
So after she called me, I drove to her clinic in a rage, sobbing and furious at the same time. When I met with her I asked, "who do you think you are? Do you have ANY idea what you have done to me?"
"Those work shifts I got covered, I can't get those back. The friend who is coming to help, she can't stay here forever. My insurance might expire in March, what about my after care? What about asking for another four weeks off work for a job I've only had two months? I know I won't have a job when I come back, now what?"
She got teary eyed a few times when I explained to her that I have no kind of life right now, I am in bed all the time, it take me forever to recover from just doing day to day activities, my life revolves around my pain. I have been in so much pain for so long and it's end had only been 16 or so hours away.
She explained to me that my urologist won't do the surgery until pathology reports come back saying that I don't have cancer cells in my body. Yeah ok, I understand that that is really important, it is cancer after all. But, it's an extremely slow process, the CIN to carcinoma, it's not like I was going to develop a tumor in two months.
So, this doctor calls my urologist and talks to him, he said as soon as the report comes back good, I'm getting surgery, she said it would be about a week. So I got the LEEP that day. It was a very fast and highly traumatizing experience and I've been in quite a bit of pain for four days now.
Tuesday, the day I should have been on the operating table I get a phone call from the urology scheduler. The earliest he can get me in is Feb 20th!!!
Last I checked, that's a month, not a week. I understand that since there will be two surgeons doing my procedure (one guy is taking my kidney out, another one is putting it back in) it's not easy to find a day where they are both free and the scheduler said that other doctor had no right whatsoever telling me what urology surgerys schedule is like.
So now I wait.
I have no job, no source of income.
My boyfriend leaves mid Feburary to work in another country for six weeks so, I can't count on him to be there. My friend from NYC will have to go home at some point, she can't stay here forever.
I just don't understand how these doctors can be so cavalier about changing things on a whim. This is my life. This is my life with another month of pain, this is my life with another month of uncertainty.
Missamberlee 31-35, F 0 Jan 26, 2013