My surgeon tried ot cancel my transplant... Updated!! I've been VINDICATED!!!

[Neo]

Hey guys I haven't posted in awhile. I have over the last year become a very lucky guy. I have a close friend who is like a sister to me match me and I was 93% sensitized. I have been on dialysis for 7 years and i just turned 32. I recently had a date set for transplant for August 19th. Well everything was going well. I jumped through all the pre transplant hoops. And than 4 days prior to surgery my surgeon (the only surgeon in my area that does transplants unfortunately said he wouldn't do the surgery because of pain meds im on. I thought well why did he wait til 4 days til surgery to tell me this? Than I said why would he do this? does it interact with the transplant med? Turns out it doesnt. Now I have a nephrologist, a pain specialist who helps me manage excruciating pain in my legs i get from the fluid balance in my body, and a psychiatrist who asked the surgeon what the problem was and he said Im addicted to the med. I am not addicted nor have I been addicted to pain meds. My nephrologist who I see every week told the surgeon, look I know this guy well, hes like a son to me, and I will vouch for him, hes not addicted to these meds. The surgeon wouldn't listen. Than the Pain specialist who was a Captain in the Airforce during the war in Iraq and has treated many soldiers in the field who gives me the med for my pain told the surgeon that he has seen me monthly for 4 years and he knows pain and I am in pain. He is a very respected doctor and doesn't not prescribe pain meds lightly. We went through at least 9 different non-narcotics before we settled on the narcotic he had put me on. He wrote 2 letters and showed the surgeon all the documentation about pain and told him I have chronic pain do to dialysis. The surgeon said he wouldn't do the transplant til i was off the med. The surgeon told me to go to an addiction specialist, let me tell you I was insulted that I was even going to go, but turned out to be good. I went to the addiction specialist he reviewed all the records talked to me for 2 hours and said," I don't know why your here?" Your not on nearly enough dose for it to cause respiratory problems and you aren't addicted to it. I have no history addiction ( i don't drink, and ive never had a cigarette in my life, and never smoked weed before or done any drug for that matter). So than after all that he called the surgeon, now mind you this is 4 DOCTORS telling the surgeon I have no addiction problem and I am in severe chronic pain. As you guys see I play baseball when im feeling well and I really try to do all I can while on dialysis. I dot know if because I look healthy on the surface that the surgeon thinks this or what. But the Transplant nephrologist and all of the team approved it and this surgeon canceled/postponed it with 4 days left. But anyways the addiction specialist got him to agree to the surgery, which is great. So I made an appointment with the surgeon and he said,"Well I guess I have to do the surgery now, you got a specialist and 4 doctors telling me your in real pain" And basically was acting like he was pissed off he HAD to do it... I'm extremely insulted, and I said, "Do you not believe that Im in pain?" And his response was," Well you cant prove it to me." I was shocked! I couldn't believe this..I told him I have dialysis nurses, family members, friends, and doctors that cant attest to it. Also when my transplant was postponed the first time in August his office called my Mother BEFORE calling me. So I found out from a call from my Mother. And I said to him, " Why did you call my Mother before me? Im a 32 year old man!" He said he told the transplant office and they called my Mom. So I asked her? and she said that it was the surgeon's head Nurse who called her. Which I think is a Hippa violation if im not correct. So he basically lied to my face as well. Than I found out they told another lie about a stay in the hospital I had. I was in the ER and I had some tests done and they drew blood from me and did a bunch of tests. And I found out through my Psychiatrist that the Social worker form the transplant office told her that I didn't get any blood drawn cuz i didn't want them to drug test me. SO I AM FURIOUS! My psychiatrist said she wanted to tell me cuz it didn't sound right. And I told her to keep it documented. I got my records from the hospital visit which specifically shows they drew 10 vials of blood from me including cultures. I confronted the transplant social worker with this and he completely denied saying it. So I am really mad, Ive been dragged through the mud and accused of being a drug addict. I cleared my name and my surgery is scheduled for October 21st. But I fully plan on consulting an attorney after my transplant. This 1 person because he is the only surgeon in a big stretch of area where I live is trying to play GOD with me. Now I don't mind putting guidelines like no alcoholics or drug abusers. But the fact that Im not and never showed any signs of it is completely wrong. This guy put me through hell for the last few months! I have been told by my other Doctors that I should seek legal advice after the transplant. And also I should get the local news involved. Anyone have any similar stories about being kept off the list? This was just insane.. Its finally over and im getting my transplant thank God but I should have had it in August and every day that I wait I lose time on my life. Thanks for reading. I just thought Id ask your opinions? I'm not shaking the boat now til transplant, in fact i halved the dose of pain meds i was on.In a gesture to prove I'm not an addict to the surgeon just to really stick it to him. Even though im in some pretty agonizing pain right now Im trying to bite the bullet. The plan me and my pain specialist always thought would happen would be once i got the transplant i could taper off the pain meds because my fluid balance would go back to normal so my pain should go away. He said that there's an 80% percent chance that I wont have to be on them after that. And I dont want to be on them anyway but they allow me to function and go to college. I just cant believe that i had to go through so much and have my name dragged through the mud for this one guy to finally approve my transplant. And he still says he doesn't believe im in pain. So Ive been lied to twice(both documented and had my name dragged through the mud as stated before) But IM getting my transplant. I am very thankful I'm getting this kidney. But I shouldnt have had to go through that, No one should.

[Zach]

If you continue to have problems with the surgeon, how about Tampa's LifeLink Foundation:
http://www.lifelinkfound.org/

It is one of the better transplant centers in Florida.

[Rerun]

Since you have a donor I'd go to a different transplant center.  This guy could still screw you during surgery.  I would NOT trust him.  Just check out the closest transplant center get your transplant and come home for followup from your Nephrologist. 

[okarol]

I am with Rerun on this. If the surgeon is using inaccurate judgement regarding your medications, what makes you think he is a competent surgeon?

I also wonder who the surgeon is that will retrieve the donor kidney. Do you want to put your good friend and donor into the hands of a man your have no faith in?

This is just my opinion, but you're going to deal with a transplant team for years after the surgery. What if this guy continues to be a problem, accuses you of unfair stuff, and God forbid maybe you have some rejection episode and he blames your drug addiction or labels you difficult or non-compliant?

I would be frustrated too, but I would not use this hospital just because they're the only game in town.

[natnnnat]

I went in to see Gregory (who has the flu) and since we were hanging about chatting I told him about your post.  He said the same thing as the other replies here, that if you can get a different surgeon that will be helpful, because you really need to be able to trust your surgeon.  I wonder how hard it is to change though, it might be a real horror story?  Depending on where you are?

[Neo]

Thanks guys.. Yea i live in fort myers, and the main problem ihe does all the transplants from fort myers, and basically everywhere between Tampa and Miami.. I went to Miami and Tampa did the pre transplant list tests and they said they'd do it and im a great candidate for a transplant. However my donor wants to do it here. She said that if they cancel the October 21st date that shes done with them as well and were gonna go to Tampa or Miami. This surgeon is an excellent surgeon in terms of his skill . Hes operated on me before. I mean, I really use to look up to him, being as i'm Going to school to be a physician assistant. That's also what makes it so hurtful. You guys don't think he would mess up the actual surgery because of this would he? I wouldn't think he would. I'm probably just being paranoid there. I don't know what his problem is, maybe hes on some sort of power trip..  So what do you guys think about this? Ive been told by my other docs and many people that I should get an attorney consult after the Transplant. Because I'm that they put this stuff in my records and that will follow me around. I dont know I'm just fee; at wits end. Its been draining having to protect myself from this slander.. Has anyone had this problem? have you been denied a spot on the list? I wasn't denied a spot on the list so my situation is a bit different being as i have a donor. But ive been reading up that this happens a lot. That there are a lot of people denied a spot on the list over some very trivial things. I agree that there should be guidelines, but people that work there ass off and do things the tight way deserve a second chance at life... This makes me want to becomes  patient advocate in the future.... Thanks for all your guys help. Its nice to e able to identify with someone.

[Neo]

Thanks so much guys.. Im in such pain now because he said i had to be on a lower dose of my pain med before he would even think of doing my transplant. He also said that he wanted me to do a month in-center detox before i saw this addiction specialist. And the addiction specialist said point blank.. What is wrong with this guy?! He said i would never recommend you in center detox and im sorry you had ot go through all this. So IM on half dose like i said before and i am having no withdrawal symptoms.. What a surprise..lol I am just in extra pain. I also think that the surgeon doesnt like that hes been proven wrong. Do you guys get that leg pain? Its not cramping, it started out as a diagnoses of restless leg but. We tried neurontin,lyrica, and all those non narcotics and none worked. Its not taht they are restless they really hurt bad when I lay down in bed and during and after dialysis its the worst. Im 99% positive as is my nephrologist and pain specialist its caused when the fuid leaves my legs cuz ill and goes into my upper body.. Anyone else have this happen to them and need to go to a pain specialist? Thanks for your support.. Youve all been with me through a lot. And i feel my journey to transplant is finally going to be realized.. Youve been a big help. THanks for letting me vent 

[Bajanne]

Here's a hug for you   So sorry that you have to go through all of this.  My caring thoughts are with you all the way.  And your IHD family is going the long haul with you.

[Sluff]

i would find a different surgeon at all costs. To hell with this one. Why give him the money.

[Riki]

I've had the same kind of trouble with a social worker and one of the doctors on the transplant team.  They believed that I was deliberately doing things to myself in order to get into the hospital and get attention, and this included somehow sabotaging both my transplanted kidneys, because they both failed the same way.  They tried, unsuccessfully, to keep me off the transplant list.  The social worker has since left the team, but the doctor is still there.

When my peritonitis problems were beginning in July/August of 2008, the doctor who admitted me to the hospital was the same doctor who'd tried to keep me off the transplant list. I had had one bout with peritonitis a week before, but had been treated at home by the dialysis nurses (I think one of them actually gave it to me, but I can't prove it, and that's another story).  My little brother had taken me for a clinic visit at he hospital and I got sick while I was there, and he was sitting with me when the doctor came in to see me.  My brother knew none of the history I had with her.  She looked at me and said, "two instances of peritonitis in as many weeks.  That's rather suspicious, don't you think?" I knew exactly what she meant.  My brother's face was red, and he was clenching his fist.  I could tell he was biting his tongue, and the only reason he didn't hit that doctor is because she was female.  She believed, and I'll bet money she still does, that I can caused the peritonitis as well.

I am extremely lucky that one member of the transplant team is the pediatric nephrologist.  He knows me better than the other doctors do, as he makes a point of getting to know his patients on a more personal level than the doctors who treat the adults do.  It helps the younger kids especially, so that they're not afraid of him.  It was from him that I found out what was being said about me to the rest of the transplant team, and I don't think he was supposed to tell me, but the social worker kind of outed herself by asking me why I sabotage kidneys. *L*

The treatment I received by the nurses when I was admitted the summer of 2008 has made me do whatever I can to keep from getting admitted again.  They watched me like a hawk, and I felt like I was in a prison, and not a hospital.

[Neo]

Rikishi you are absolutely right... They try and treat you like your not a free citizen. It's absolutely wrong. I am lucky as well it finally is gonna happen for me! I got a copy of a letter the addiction specialist sent to the transplant office and surgeon. It's basically a big Eff u letter to the surgeon... LoL here's a line from it....... "he does not demonstrate the use pattern suggestive of addictive illness; THERE DOES NOT SEEM TO BE ANYTHING SUPPORTING A HISTORY OF CHRONIC ABUSE OR OF THE PATTERNS OF DEMONSTRATED BY INDIVIDUALS STRUGGLING WITH ADDICTIVE ILLNESS." "IN SHORT IT IS MY IMPRESSION THAT THE PATIENT IS CURRENTLY STABLE AND PREPARED FOR TRANSPLANT SURGERY.THIS CONCLUSION IS DRAWN FROM THE STANDPOINT OF HIS PSYCHIATRIC STATE, AND FROM THE STANDPOINT OF NOT DEMONSTRATING SIGNIFICANT BEHAVIORAL PATTERNS OF ADDICTION, OR INDICATIONS IN THE EVALUATION SETTING OF THAT TYPE OF ILLNESS."