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ron50's picture
Posts: 1729
Joined: Nov 2001

G'day all, have just had my second scope in a month. The first one the prep got wrecked by meds I am on. I am currently on 75mg daily of prednisone for Minimal change kidney disease. It wreccked my prep so I had to do it all again. Last time I had a scope they removed two polyps and said see you in two years. This time it was a strange report saying that no polyps were removed and no large lesions identified but my GI made it very clear to me she wants to see me in 12 mos NO later.
The way my kidneys are going I'll be lucky to be around in 12 mos. The prednisone has not helped at all with my protein loss and all it has done is to turn me into a beach ball with wall to wall duodenal and peptic ulcers. I am being weaned off the pred now, which can take months. My doc wants to try me on a drug called avapro but from what i have read it has more side effects than pred. My only other options are the immunosuppressants like cyclosporin. They have dangerous side effects,. To make matters worse my doc is no longers sure he has the right dx. He didn't get much of a sample with the kidney biopsy so I may have FSGS and not Minimal change. Fsgs is a progessive scarring of the kidney filters and always progesses to end stage kidney disease. It looks like I may finally have to go on a disability pension as my health just will not allow me to get around and work. Cheers Ron.

2bhealed's picture
Posts: 2085
Joined: Dec 2001

Hi Ron,

I was so happy to see your post! Been wondering how you're doing. Now I know. Hope they get the right dx soon so then they can treat it properly. Dang, I am so sorry you're having this rough go.

Are you a candidate for a kidney transplant?

Seems to me we had that conversation but I don't remember the answer.
Didn't Stacy want to give you her kidney? :-)

Off topic: Don't you wonder how many posts you (and I) really have on here since we've been "on board" for 7 years? I know you have more than 10!! HA!

Do you ever see great white sharks when you're out on your boat there in your picture? Doesn't Australia have lots of sharks?

peace, emily

ron50's picture
Posts: 1729
Joined: Nov 2001

g'day emily nice to hear from you. Yes stacy did promise me that kidney. I check the post every day but no show so far. Unfortunately with MCD they don't transplant and with FSGS there is no point as the condition does the same thing to the new kidney.
I haven't been getting offshore too much lately. My health has been a bit ordinary to say the least.. Yes we do have a lot of sharks I see them almost every trip. I don't have to worry about great whites,,the tiger sharks ate em all. I have been fishing the rivers and estuaries and have seen a lot of crocs this last year. A viet vet checking his crabpots got eaten a few weeks back in the Endeavour river in North Queensland. I was up that way two months back. Fortunately the only crocs we saw would have choked on me.
All my best wishes to you and your family. Stay well and kep on juicing.xxxxRon.

StacyGleaso's picture
Posts: 1249
Joined: Mar 2003

Uh, my offer still stands! Let's see if we're a match big fella and let's get this done! You know, spare parts are for sharing and I have a kidney with your name on it. Or, you can do the urban legend and go to a bar, put a drug in a drink, and have someone wake up in a bathtub missing a kidney. Although, I think my offer is both safer and more legal.




kimby's picture
Posts: 804
Joined: Oct 2007

You must be at the end of your rope. Tests, retests, misdiagnosis.... I hope things turn around and start going your way.

Your avitar makes me want a vacation! I soooo want to go to the beach, the water...ahh...Thank your for that small break. It reminds me to dream!


Posts: 1961
Joined: Aug 2003

Hi Ron,

Sorry you had that hiccup with the colonoscopy. And also sorry to hear about the kidney situation -- about the meds and also the continuing uncertainty about diagnosis. I can only imagine your frustration with all this. I can''t remember if you have already considered getting a second opinion -- or if that is an option. Sorry things are so bleak at the moment. I am sending lots of warm wishes your way and I hope things take a turn for the better soon.


Posts: 881
Joined: Feb 2007

Hi Ron,

Do what you have to do to take care of yourself. If it means disability, then so be it. I guess the first step is to get an accurate diagnosis; then they can adjust meds to permit your kidneys to function as best they can. I, too, would like to know if you are a candidate for transplant. Either way, you MAY NOT reach end stage kidney disease. Find options.

Lots of love,

betina61's picture
Posts: 644
Joined: Aug 2006

Sorry to hear that things are not that good, I'll pray that soon you will start looking at some light at the end of the tunnel, I always remember you with gratitud, you answered my first post,and it was a powerful one and we all know what that means to the newbies. God bless you.

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