Update on my Situation

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Apr 2007
Total Posts : 106
   Posted 8/1/2007 9:26 AM (GMT -6)   
Hi Everyone,

I hope everyone id doing well, as well as to be expected, I went down to London yesterday and spoke to the Urologist that would be doing this Transplant, he is very good apparently ppl from all over Canada come too see this guy and you know he can't be more then 30-38 max...great Dr, so he explained LPHS to me agreed with the other Dr.s that this is what I have, explained the operation to me, They no longer remove any ribs and are able to remove your kidney orthascopicly with a hand assist through the incision in your abdomen. hence smaller incision instead of a 25-30 inch scar yoiu are now looking at 15 inch, just the front of you.. So they are going to start preparing me for this, first I have to go down on Aug 28 & 29 and they are doing a cat scan on the 28th and on the 29th a Renogram & GFR,this will be able to tell them how my Kidneys are functioning,nerves the whole bit, the test takes about 2.5-3 hrs, as one of the risks of having this procedure done is they could lose the kidney during the 8 hr surgery, so they have to make sure that the Right kidney is functioning at a proper level in case this happens, then I have to go see a Pshychatrist to see if I can mentally handle this and to make sure I am not crazy and just making this up, he said please don't take offensive to this,We don't belive this nor does the Nephrologist you saw, but this is just another thing that we do for everybody, I told him not at all, like he does not know me from adam and I am ok with that, another risk is the Kidney could clot and then of course I would lose it, and then the last risk very unlikely but it could happen as they are reattching all the stuff in my abdomen so this is vascular also and if I got a clot in my leg I would be pushing up daisy's, he has done 5 Auto-transplants and out of that 5 3 are pain free..My gosh that would be wonderful, 1 their Kidney clotted but they are doing just fine and pain free with 1 Kidney and the other I can't remember I don't know if he told me or not, lots of info yesterday, he also put me on 75mgs of Lyrica 4 x a day,just  to try, they don't figure it will work but it was worth a shot, So this is where things stand, alot to digest,alot to think about it, and alot to be scared about it, but on the other side of the coin 4 out of 5 of his pts are PAIN FREE, could you imagine!!!, now this is not a permenant solution but even of I got 5-10 yrs, oh that would be so worth it, I am 34, Anyway I just wanted to keep you all posted as you have all been so kind to me through this journey that I am taking, and for the first time I can see the light at the end of the tunnel-- AND IT IS  NOT A TRAIN!!! LOL..

Take Care


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Oxycodone, Amitriplyne,Ace Inhibitors 

Regular Member

Date Joined Jul 2006
Total Posts : 495
   Posted 8/1/2007 12:52 PM (GMT -6)   
Tracey- Good luck! And keep us informed on how you are doing! I'm sooo glad that someone is helping you look to the future!
"When we come to the edge of the light we know, and are about to step off into the darkness of the unknown, of one thing we can be sure; either God will provide something solid to stand on... or we will be taught to fly.'"

"Cause when push comes to shove You taste what you're made of, You might bend, till you break Cause its all you can take; On your knees you look up Decide you've had enough, You get mad you get strong Wipe your hands shake it off, Then you Stand" From "Stand" by Rascal Flatts
Dx.: Polycystic Ovarian Syndrome, Ulcerlative Colitis, Chronic Inflammation of the Colon, Ruptured & Fused L4-L5-S1 w/pinched nerves, Degenerative Disc Disease, Chronic Costochondritis, Back Muscle Spasms, Asthma, Benign Tremmors (hands)

Veteran Member

Date Joined Nov 2003
Total Posts : 7314
   Posted 8/2/2007 11:37 AM (GMT -6)   
Tracey, I'm so glad that it's not a train! It's nice to hear that you've got all these great Docs working to get you feeling better. We'll all be sending good thoughts and hoping that everything goes smoothly for you. It'sbeena long road and you deserve the relief.

Be well.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator

Regular Member

Date Joined Apr 2007
Total Posts : 106
   Posted 8/2/2007 7:05 PM (GMT -6)   
Thanks, Guys,
I am very grateful that I have these Dr.'s. peole come from all over Canada too see these guys, and the best thing about it is they are NICE!! so easy too talk too,answere's all my qoestions plus my husbands, nurse's,secretary's, all nice, they all treat you with dignity, I have been to so many!! Dr.'s that just treated me like dirt, so this is just wondeful, Thank-you for all your support and good thoughts' I will keep you updated, on Sept.6th I find out if I can have this surgery, he will have all the test results then, I am so happy and relieved, that finally I have a Dr. who can help me, for all of you that are having trouble with your Dr.'s I would advise you to switch, there are so many Dr.'s that really do care, it just takes some weeding out, and some heartache, but it can happen, and I trully hope all of you find some peace and some hope in your life, it's a undescriable feeling,
Take Care All
DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Oxycodone, Amitriplyne,Ace Inhibitors 

Regular Member

Date Joined Apr 2008
Total Posts : 33
   Posted 4/7/2008 6:04 PM (GMT -6)   
Hi,I am brand new to this site and am soo happy to have found you all. I have been suffering (since 99) from repeated kidney stones (had one in 99 the size of a "golf ball" that passed down thru my ureter...(you get the picture) Since that time, I've had too many to count "procedure" for stones,strictures,you name it...by the way, it's my LEFT kidney only that I have pain (where I have all the problems) It's like a constant, dull ache, with sometimes "spasms"(like when you pass a kidney stone (they call it: Renal colic)...I also always have hematuria and almost always can count on an infection becoming a kidney infection at least 1xmonth! I am currently on Norco 10/325 can take up to 6 prn. I take no other meds. At my last visit with pain dr (have been going to PM dr's office for over a year now) the owner of the practice would give me this rx w/3 refills, now I'm seeing his partner..(they're trying to build up his clientele) and he had me sign a "contract"yada, yada...(I worked PM for over 5 years as the DR's assistant, so I know the routine) although I was ALWAYS respectful and understanding and helped as much as I could for our patients (I loved this job, but left when had to move out of state to take care of my parents (who are now deceased) To make a long story short (will get into it later) I am now at work (at an OBGYN"S office and it's almost time to leave! 5pm! I just want to talk to people who are in pain too...and oh yeah, my dr said he wants to "convert the same amount of medication into "long-acting" same dose...just distributed differently" Now, I've been taking this amount for over 7 years with NO increase, NO request for increase, and it helps my pain just fine (he knows this)...My question is WHy would you want to change if it's still working? I know better not to "question his decisions...dr's don't like that" but....(my MRI (first one ever) was done 2 weeks ago and showed a 2.0 cyst inside the medullary region of left kidney...of course my urologist is "not concerned"...Does anyone think this is LPHS? He never mentions this possibilty...I'll type more tomorroow...gotta go eyes
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 22, 2018 12:58 AM (GMT -6)
There are a total of 2,995,367 posts in 328,259 threads.
View Active Threads

Who's Online
This forum has 161328 registered members. Please welcome our newest member, carp46120.
193 Guest(s), 3 Registered Member(s) are currently online.  Details
borrelioburgdorferii, carp46120, jrpsf