December 23, 2006

My Kidney Story - Part 4

If you are new to reading my Kidney Posts, please feel free to catch up with Part 1, Part 2 and Part 3.

In picking up the story following my three treatments of Cytoxin.....

After having endured more than enough of my nephrologist, and already living in Virginia, we made the decision that I needed to change to someone more local for my kidney treatment. After doing a little research I found Northern Virginia Nephrology Associates.

Great find, in retrospect. My first appointment, though, was not good at all. I had an appointment scheduled at 3:30 and finally got in to see my new nephrologist at around 5:30. Not the way to start. Though I knew that my former doctor was old-school and antiquated, I never had to wait in his office.

This was also my first experience with a Dialysis center. As it turned out, the doctor only visited the satellite office once a week, so they just used two offices in the Dialysis Center. People sitting around me were there for completely different reasons. Some went back for dialysis, and some just sat and waited (and waited, and waited) for doctor appointments.

When I finally got back to see the doctor, things just got worse. He had received my records from my previous nephrologist only the Friday before (it was a Monday), and had read bits and pieces. He informed me of two things right off the bat, right after "hello, my name is":

I would be on dialysis in five years and
I would have a transplant in ten.

Extremely scary words for me to hear. (still) He proceeded to tell me that it was his last day, and they really should not have sent a new patient to him. He would be starting his own practice, but that was at least a year off.

I left his office that day feeling less confident about life than when I had gone in. I was upset to the point of rage. Why would they schedule me to meet with someone new, just to break the bad news about my future to me, so that when I got to meet with a longer-term doc, they would seem to be more lenient? I didn't care. I was told "5 years, 10 years" and did not have an appointment to see the new doctor for two months.

It was well worth the wait! I met with Dr V. Broumond about a week into his partnership with Neph. Assoc. of NOVA. As this was his first practice, I was one of his first patients. I became a challenge to him almost immediately. When I told him what the other nephrologist told me about the 5/10 year "plan" - he reassured me that we would find something to circumvent that idea and get me a much longer life.

We gave prednisone another chance, to no avail. Dr. Broumond talked to me about going onto Cyclosporine, which is a drug typically used for transplant patients. It's an immunosuppresant.

I was more than a bit nervous about it, but agreed that we had to have a new plan of attack. I started out quickly on 150 mg twice daily, which brought my protein levels in my urine down to much more manageable than they had been since getting sick.

About a year later, we began to lower my dosage slowly, which sent my protein back up. Not skyrocketting by any means, but we decided to keep things at a higher level, so long as my long term health was not in danger. I have continued on Cyclosporine, and am still on it.

Since that brings us to the early part of this year, I am going to close this post. I will have one more "My Kidney Story Part ##" to follow soon, and then will just keep things updated as they happen!


  1. Hello Rob,
    Thanks for your comment on my blog. I certainly appreciate people that I haven't met taking the time to offer support on what can be a gruelling journey on occasions. Keep reading, and keep in touch. I'm seeing the Consultant tomorrow and will update the blog shortly after. Just hope my fasting blood glucose has come back ok, as Diabetes is a major no no on my list of must haves!
    I haven't had a chance to update myself with your kidney journey but I certainly will.
    Also, I don't know if you have any contact with Heidi apart from posting support messages on her blog, but it would be nice to know if she's ok, seeing as she must have had her baby by now.
    Good luck on your journey fella.
    All the best

  2. That visit must have been terrifying for you. What a prognosis, and from someone who was obviously not interested.

    Do you have any side effects with Cyclosporine? It made me so violently ill, the way chemo does with some patients. I literally could not move suddenly without throwing up. Cycloblastin tablets have been the least invasive of any medication I have tried...apart from sterility (at 45!!) and very dry skin.