Prayer Request

[MN Cummins Lvr]

Brian,



My prayers are with you. Please keep us posted and let us know if there is anything we can do.



Paul

 

[Ol'TrailDog]

Geese Brian, sorry to hear about whats going on. I'll add my prayers for you too.

 

[rono]

I too will be praying for you Brian. If you don't mind, I'll mention this in my Sunday School Class Sunday.

Ron

 

[Rescue Ram]

I would appreciate it, rono. I had a followup appointment yesterday. I tested negative for any disease that they can treat. The next step is a biopsy that will be taking place tomorrow. I will be in the hospital at least overnight, and possibly longer, pending the results. This will be my first surgery... I am terrified. They are also working on typing me... I guess they are planning for me to end up on the transplant list, though they didn't say that explicitly. Hopefully they will find something treatable through the biopsy. Thanks for your continued thoughts and prayers. I really do appreciate them.

 

[rbattelle]

I am terrified.

Don't be. Well, try not to be anyway. I know I would be. But we're all pullin' for you.



-Ryan

 

[loncray]

Terror is okay - completely natural response - so long as it doesn't paralyze you you'll be fine. We'll all be thinking about you.

 

[Greenleaf]

Still praying, Brian.

 

[rbattelle]

He must still be in the hospital. I hope things turned out alright.



-Ryan

 

[Mike Ellis]

Hope things went well with the biopsy Brian!

 

[daytripper63]

My wife and I went through 6 mos of He%$ cause of the same diagnoses and had to go in for blood test every other week and after 6 mos a siezure passing out etc..... they finally looked into shellfish parasite and all better now although my wife is now allergic to any kind of seafood.

If you are a fish / shell fish eater you may look into this

 

[Rescue Ram]

Got out of the hospital yesterday afternoon. I was a bit too groggy to type anything that would make sense. It was perhaps one of the most painful things I have endured. It really hurt getting that needle inserted into the kidney. They kept me an extra 18 hours or so, becuase I had a great deal of bleeding internally. I should know the results, if anything, on Wednesday. For now, I get to spend my time sleeping... which isn't too bad a deal considering how bad my back hurts.



Brian

 

[Rescue Ram]

Update

I got news from the Dr's today... I guess it is not good, and I am not sure why I am surprised. They believe that I have focal-segmental glumerosclerosis. They are not sure why I have it, except that it may be a heriditary sort of thing. The prognosis that the doctr provided is not particularly good. According to him, the majority of patients diagnosed with this disease will be in full reneal failure within 10 years. They suspect that this has been going on unrealized since my teens, which does not give me long. There is an option of taking steroids, though this does not seem to help most.



I am not sure how I feel. Shocked and stunned, I guess. I am considering going to the Mayo Clinic for a second opinion. I don't know what other options I have at this point. As always, thanks for allowing me to vent. Your thoughts, prayers, suggestions and support are appreciated.



Brian

 

[rbattelle]

Are you eligible for a transplant? What I mean is, would a transplant fix you up?



-Ryan

 

[Mike Ellis]

Brian, I wish your news had been better bud, but at least you are not in an immediate emergency situation. You have time for planning and consultations with other docs, which can be tremendously valuable.

One thing to keep in mind is that you can have your biopsy slides sent out to other institutes for a 2nd opionion, I have heard that the Armed Forces (Air Force?) Pathology labs will do 2nd opinions, so will big clinics like Mayo and some of the big pathology labs. It doesn't cost much and can give you some very valuable info.

Something important to do right off the bat: get copies of ALL of your files, biopsy reports, x-rays and such, and have them ready so you can take them where you want to. It's a pain in the butt having to deal with the bureaucracy of getting them when you are already hassling with other things, but having those records could save your life. Why? Because believe it or not, doctors and hospitals are NOT obligated to keep your records for the long term, many of them dispose of them after as little as 5 years.

Good luck bud, I hope things go well with you!

 

[Rescue Ram]

Mayo Clinic, here I come...

I got word today from the Mayo Clinic in Jacksonville, FL. They want to see me as soon as possible due to the rareity and the severity of my disease. :--) I have an appointment on March 31, and will be staying in FL for an undetermined length of time. Now the project is to round up all the medical records, biopsy slides, etc, etc, by next week and get them shipped off. It is amazing how much one's life can change in just a few short weeks. I will be driving down with my boat, so if ya see a silver 3500 pulling a tan/cream colored boat, be sure to say hi. I will appreciate the company for sure. Thanks for all the support, well wishes, PM's, etc. They are really helping to keep me going.

Brian

 

[Mike Ellis]

Have a great trip, and keep us posted!

 

[Tony T.]

I hope and pray that everything works out for you Brian,hopefully you will get some better news on the second opinion. Best of luck and we will be praying for you.



Tony

 

[Rescue Ram]

Update.

I got some encouraging news. Mayo agrees with the diagnosis of FSGS, but does not agree that there is no cause for it. I am loaded with kidney stones; 7 in the left kidney and 5 in the right. They think that this may be one possible factor. I have been non-insulin dependent type 2 diabetic since I was in my teens, and have successfully controlled it through diet. I had a fasting glucose of 160, which is higher than normal and than it should be. The diabetes could have a role in the failure as well. The third possibility is excessive dehydration. The doctors conjecture that at sometime (running marathons, playing sports, in the course of firefighting activities) that I became so dehydrated that I damaged the kidneys. I have my doubts about this one, because I have always hydrated well... but who knows. The long and the short is that the kidney failure is gaurenteed, but it is unlikely to happen in the next 6 months. The doctors at Mayo are thinking more along the lines of 2-5 years, and possibly longer. They also have some therapies that they want to try over the summer. Not the best situation, but at least it gives me more time to make plans, etc, etc. I will head back to FL the first week of June and likely spend the entire summer there. Thanks for all the prayers, etc. They are so much appreciated.

 

[rbattelle]

Will they pulverize the stones for you?



-Ryan

 

[The patriot]

I'm glad there's some good news.

I have a constant stream of kidney stones. Just passed one the other night. :{ It wasnt that bad.

Depending on what the Dr's say, they can lythotrypsy (sp?) them... . what rbattelle said.

They may not want to beat on your kidneys like that. Makes you pee blood for a while. It stresses the kidneys quite a bit.

But gets them out.

As someone that's passed quite a few of these, you'll see less pain with each one you pass. I can actually tell when I have one. And predict pretty close whan it will pass.

Well... . were still praying for you.

Eric



PS They can also go in with a "basket" to get them. I didnt like the sound of that. :{