Great site. Thanks!

[SandraDee]

Hello everyone! Great forum.

I've been a cystinuriac since the age of 14! By the time they figured it out (I was always diagnosed as having the flu instead of kidney infections) both my kidneys were filled with staghorns and had both kidneys operated on to remove the stones. No bikini-line incisions back in 1984! I lost my right kidney at the age of 18 because it never recovered from the original surgery.

So, I started off on Bicarb, but the stones came. Then Uricit K, but the stones came, and bigger. I found a fantastic Urologist at Loyola Univ Med Ctr who removed my latest staghorn with non-evasive surgery (worst experience ever) and put me on Thiola, the miracle drug for me. I finally find a drug that works for me after all these years, and BANG! Its manufactured by an idiot drug company who can't pass the stability tests to warrant a shelf life of over 30 days. And now they are on backorder. Can someone please tell my kidney that Thiola is on backorder? ;)

Anyway, I just got off a lengthy conversation with the FDA who says that they are looking for an alternate manufacturer for the drug and hope that they will have a backup manufacturer within a few months. Just wanted to vent, and share.

Thanks for listening!

Good health to you all!!

[Matt Lewis]

Welcome to the forums SandraDee! It looks like the members are becoming quicker than i am... :) Good to see you jumping right in!
Thanks for sharing your past experiences and the information regarding Thiola. I know Mission Pharmical has really been in the doghouse for the past year or so on this topic. I can't imagine why they're not moving faster on the issue, seeing as how they could potentially loose the market for one of their main products. Oh well, the busisness world will never cease to amaze me i suppose. :)
Welcome to the group, i hope you find it a great resource.
I apologise for being incredibly behind in updating the main site, but life's been busy for me lately. I DO hope you find good information in what's available, though, and enjoy your time here with the other members!!!
Please don't hesitate to contact me if you have any questions about the site or forum.
It's great to have you! :)
Kind Regards,
Matt

[Tim Walsh]

Hi Sandra,
I'm at Loyola too. When I first went there three
years ago I had Dr.Albala, who has since went to
Duke. Now I'm seeing Dr.Turk, and I wonder how
familiar he is in the use of the retro-laser
proceedure. Are you seeing Dr.Turk also? He was
trained in using scopes by Dr.Albala.

[SandraDee]

Hi Tim. Yes, I am seeing Dr Turk and he's been wonderful. I actually forgot to update my posting. I am having surgery, again, on Dec 9th with Dr Turk. I've managed to create 2 stones at 1cm and because I only have 1 kidney, we'll be doing PNCL. Is that what you're referring to where they make a small incision and go in with a scope to pull out the stone piece by piece? If so, Dr Turk did a great job taking out a staghorn the size of an egg using this procedure. If you're having it done with Turk, I've got to warn you about the prep surgery where they insert the guide wire. Try to get this done on the same day or while you are asleep. Its pure torture.

Is there anything I can tell you about Turk or the procedure? Any help I can offer, I'd be happy to give.

[SandraDee]

OOps. I realized after the the posting that we may not be talking about the same thing. Can you explain the procedure if its not what I described? Also, what meds are you on? I've still battling the Thiola issue.

[Tim Walsh]

Hi Sandra,
This is my second attempt to reply; the first got
blown away last week.
Having had many "percs" (4 on each kidney), I feel
that alot of the pain I feel on a daily basis is
from the scar tissue that is left from all the
cutting through the muscles and into the kidney
itself. Therefore on my last surgery Dr.Albala
wanted to do another perc but I told him I wanted
a retro-laser instead. This procedure entails the
use of a flexible endoscope being threaded through
the urethra, bladder, up through the ureter and
into the kidney where the holmium laser blasts
the stone. No cutting into your flank is done.
Ironically even though Dr.Albala first tried it
together with Dr.Grasso at NYU, Dr.Albala thought
it was too dangerous, but Dr.Grasso kept on until
the problem (hydrogen-cyanide) was vented out and
it is now safe. Dr.Grasso is probably the best
is hard to get because he was booked up last time
so I went to Mayo to have the retro-laser done
by Dr.Segura. Needless to say, Dr.Albala was not
too happy! But I feel that they're my kidneys
that I have to keep functioning by proventing
any more scar tissue. I don't want to upset the
apple cart, but if I were you I would find out
how much training Dr.Turk has with the retro-laser
before letting him cut into your one remaining
kidney any more. Don't listen to them tell you
that the perc is the "gold-standard" for our
stones - that just means they don't have the
training/experience in using the retro procedure.
It is probably true that if the stone is really
large i.e., several cm, then a perc might then
be better, but Dr.Grasso has worked on some really
big ones with success too. The added out-of-pocket
expense to me is worth it if it prolongs my function. But you need to ask Dr.Turk how much he
has used the technique and make your own decision.

I have been off the Thiola for nine months and
use buffered or ester-C (as calcium ascorbate)
and Magnesium Citrate and 50mg B-Complex all
twice a day. My formation has drastically reduced
which might also be because of getting older too.
Anyway, whatever you choose Dec.9th, good luck!!!

[SandraDee]

Wow. Thanks so much for this information. If there's anything I can do prevent being cut open, I'll inquire about it. Great advice, thank you!

I've had one perc on this kidney, many ESWL and a few laser type procedures. I've been concerned about the scaring myself as well. I'm glad you told me about your experiences.

Good luck with Dr Turk yourself. I hope he works out for you. I'm going to call his office today.

Best Regards,

Sandra