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..
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