All posts by Craig Silko

Update to my story (Craig)

Well I wish I had better news. Unfortunately, I have now been diagnosed with LPHS of my native right kidney (Native because both my kidneys are on my right side because of an earlier autotransplant). I started showing symptoms about a year ago and they progressively got worse. I am now at the point that I am no longer able to live a “normal” life. Normal in the sense that I consider normal; pain everyday but manageable. I am no longer working due to the pain and I am having a very hard time trying to cope. The pain has not been very easy to control, when it is controlable. For the past 8 months, I have been not able to do much. I rarely feel up to doing anything because it excites the pain so much. My doctor’s are at a loss. I am still seeing my pain management doctor, who by the way has gone out of his way to help. He feels that if he keeps me stress free (Yeah Right! In these times) and calm the pain is more manageable. It is but I get these extreme pain attacks that just put me in a complete funk. I now see a nephrologist. Due to the years with LPHS and the treatments, I have been diagnosed with chronic kidney disease. It is only level 1 however if you look at my GFR, my right transplant is doing much better than my native right kidney. Now it is something else to keep an eye on. I have been put on blood pressure medicine to try to prolong the stages of CKD. Even though things are rough, I still try to maintain a positive attitude. Its hard but I know that in the end things will be fine because I will do everything I can to ensure my quality of life.

21 Years with LPHS (Aug 20, 2008)

21 Years with LPHS

My Name is Craig Silko. I have been suffering from LPHS since I was 12 years old. I was actually diagnosed when I was 17 because it took so long to rule out every other possible medical reasoning behind the constant pain and blood in urine. I have been treated with many medications but none actually rid the pain completely.

Under the advise of my first surgeon (Dr. John Marks, NYC), I went to a surgeon (Dr. Zelik Frischer, SUNY Stony Brook, Long Island, NY) to undergo a Renal Autotransplantation. Dr. Frischer performed the surgery in May of 2000 when I was 13 years into the syndrome.

He was still optimistic, even though it was most effective if performed before 5 years, and I agreed at this point what did I have to lose. The surgery didn’t go as planned and I had many complications. I really don’t want to relive that moment, so I am not going to write about it. The surgery ended up being a success for about two months. Two months of complete relief and I was in heaven.

It came back just as it started many years before that, this time only pain where my kidney was transplanted, right side-lower abdomen-just below my right kidney but in front. We thought that it could be my other kidney developing the condition but we didn’t want to take any chances with scoping, the so far symptom free, kidney. Till this day, now age 33, I do not have pain where my right kidney is, just in my lower abdomen in the transplant location.

I am still treated with pain management services, which my doctor (Dr. Robert Vincent, SUNY Stony Brook)is my angel. Since 1998 when I started going to him, he has developed a plan which keeps me out of the emergency room. On a side note, I don’t know how many of us out there who have gone to the ER have been treated like drug addicts and disrespected; due to the fact that LPHS sounds like a made-up disease.

I ended up filing many complaints about the staff of my local ER. I hope that many of you never had to go threw that. Well back to pain management.

I am able to work and live a somewhat normal, well my normal, life. My pain management Dr’s plan helps me get threw my day without the extreme pain but a liveable amount of pain. I am so use to it that I can ignore it. Its just when I get, what I refer them to as, attacks (Severe untreatable pain) that last sometimes a day to my longest of two months that it gets harder.

Believe it or not, I still work when I am like this. I treat it the best I can, because I know what it is. I do not do more than I can, I don’t go to the ER, I just wait it out. I guess to some my story up is I understand how everyone feels. I don’t recommend getting an Auto Transplantation unless it is your last resort, even then I still wouldn’t recommend it. My surgeon wont perform them anymore because he feels it not the cure all that it was suppose to be.

My one question I pose to any of you, Does anyone have any other ways they control the pain, or the anger that comes with the pain?

If you do please write me at [email protected]