Denied a transplant without dialysis. Any suggestions??

[dstevens]

I am 34 years old and was born with cystic fibrosis. At age 15 I was diagnosed with diabetes and at 27 I was diagnosed with kidney failure. I was immediately put on dialysis and needed a transplant. I was lucky enough to find a total stranger that was willing to donate hers to me (I found her through MySpace) and received the transplant 8 months later. I had an exceptional amount of complications due to my other illnesses and because of my CF and the immunosuppression drugs developed pneumonia multiple times as well as a potentially fatal fungus that was growing on my lungs. The nephrologists could not have shown any less compassion and/or care towards myself and my family during an already extremely difficult time. They were completely unwilling to work with my pulmonologist (who I have a great 20 year relationship with) or hear me out on any of my own suggestions. It was their way or the highway so to speak. After months of seeing my health do nothing but decline I made the decision to cut ties with them and proceed with treatment from my pulmonologist. I felt like he knew me and my medical situation better than anyone and instead of just treating me like every other patient, I would receive specific care based on all of my other medical ailments (including my kidney). I understand that may have been a mistake in hindsight, but being literally scared for my life at 27 years old and under all of that stress, people don't always make the best decisions. Regardless, after about a year my doctor got me back to normal (by my standards anyway). My lungs and kidney function were both very high. Now fast forward to present day and my kidney has failed yet again from the same condition that caused it the first time (FSGS). Here is where my problem comes into play. I have been told by the doctors at UPMC of Pittsburgh that because of my noncompliance issues and not following up with them after my first transplant that unless I show 100% compliance with them this time they will not do the transplant. I understand this to a degree, but here is the issue. I do not currently need dialysis. I was told that based on how things are progressing that I would need it before the end of 2012. I have a relative that is willing to donate his kidney and was previously tested when I needed a kidney 6 years ago and was shown to be a match (they did not use him though because the other person who ultimately gave me her kidney was a better match). Instead of starting the evaluation process that I know is mandatory and doing the necessary retesting I have been told that I would need to have a fistula put in and be prepared for dialysis because "the process takes about a year" (despite the fact that it took 6 months from finding out my kidney failed to receiving the transplant last time). I am being told that I have to unnecessarily suffer through dialysis again and wait a year to receive my transplant even though it could be done without putting me through either of those things. I am essentially being punished for (in their opinion) making a mistake that I felt was the right decision at the time. And now they feel as though they have the right to play god and deny me a transplant because I didn't listen to them? Keep in mind, UPMC had their entire kidney transplant center shut down by the health board for months and are currently being sued by multiple parties for doing kidney transplants and giving the recipients Hepatitis C from improperly screening the donors. To say I do not have the most faith in them or their "protocols" would be a gross understatement. Those poor people "complied" with everything they were told and look what happened to them. Because of all of my other health ailments (mainly CF which life expectancy is around 40) I understand I do not realistically have a lot of time left. I feel like I am only asking for a little bit of quality of life for the time I DO have left and in my eyes going through dialysis again is just something I cannot do (unless it was absolutely necessary and even then I DO NOT want the fistula. I would prefer the catheter which they are also saying I cannot have. Do I not have a choice between my method of sufferring through dialysis if I HAD to have it? Can I not choose between a fistula or a catheter?). If I could find someone that was willing to do the transplant in a reasonable amount of time there is a very good chance I could avoid dialysis altogether. That is all I want. I don't know if anyone has any suggestions or thoughts on any other courses of action I could take, but I would love to hear any thoughts or ideas. I don't know much about how insurances work as far as going to another facility out of state (I have heard amazing things about Johns Hopkins) so any information about that would be great. I just feel like as a patient, as a human being, I should have some say over my own health care and if dialysis isn't something I want to do, and it is not currently necessary, I should not be forced into it to receive my transplant. I apologize for the length of this, but I just wanted to make sure I got all of my points across. Thank you for taking the time to read this and I appreciate any input I receive.

[jeannea]

Transplant depts are strange things with lots of rules. While you may want to find another center, I would try closer than Johns Hopkins first. Maybe Cincinnati?

I don't really understand why you had to cut ties with the docs originally but I can see they would be pissed. The transplant centers like to have a lot of control. You either have to find a new center or do some serious groveling. Sorry but it is what it is.

As far as having to do dialysis, I would think you could use a catheter at first. I know of others who have refused to get a fistula. Esp if you have the transplant in the works. Just be calm but firm.

I hope you can find a way for your docs to work together. It's for the best.

[MooseMom]

I can't imagine having to deal with both CF and FSGS.  That's just too many letters to have to cope with.

I've read your post several times as there is a lot of information there to digest, but I am not sure I have it all straight in my head.  It is hard for any of us who have never met you to offer advice or suggestions that come across as informative.  I got told off recently for saying the wrong thing to someone here on IHD despite my best intentions because it is true that we don't all know everyone else here 100%.  But I will once again risk saying perhaps the wrong thing because I don't want you to feel that you are being ignored; that's the worst feeling of all.  But I will offer my apologies now if anything I post here is stupid or ill-informed.

Yes, I do think that in hindsight it may have been a mistake to drop your tx team and hand over all of your care to your pulmonologist, although I might well have done the same thing in your situation, so I can't chastise you!  LOL!  I have to wonder if your pulmonolgist was comfortable with this; surely he had some reservations about being the primary/only caregiver to a transplant patient.  Did he ever say anything to you in this regard?  Well, anyway, that's in the past.  The issue seems to be this "non-compliance" folderal.  In my view, far from being non-compliant, you were being pro-active in your care, but I doubt your tx team at Pittsburgh would agree.  What do you think of having your pulmonologist to write a letter to Pittsburgh telling them that no, in his experience, he does not see you as "non-compliant."  Would that carry any sway? 

I am flummoxed by their "requirement" that you have a fistula created before they will start you on the eval process.  I will point out, though, that just because your relative was cleared for transplant six years ago doesn't mean he will be cleared now, so I'm not sure it's a good idea to assume anything.  On the other hand, my neph thought I'd be on dialysis quite soon...and that was 7 years ago, so I'm not sure your tx center has an accurate crystal ball.

Why do they refuse to let you have a catheter?  What reasoning are they giving you for this?  Maybe there is a very good reason...maybe they feel that as there is a higher risk of infection with cath use, said infection could render you ineligble for transplant.  Could that be it?  Are they perhaps treating you with kid gloves because of your CF and therefore don't want you to be at higher risk for infection from the cath?  I'm just guessing.  I do think you might want to find out, though.  Like I said, they might have a very good reason.

I certainly understand the desire to avoid dialysis if at all possible.  I'm trying to get a pre-emptive transplant (I have fsgs but have not yet had to initiate dialysis), but no one at the tx center has made me get any kind of access.  However, my neph strongly suggested it, so I do have a fistula ready to go, but that was MY decision made with my neph, not the tx center.  But my neph isn't part of the tx center as yours is, so I guess that's the difference.

I would look at my insurance policy and determine if I could go to another center out of state.  You may be wise to investigate changing centers entirely.  Do you think it might be an idea to speak to your pulmonologist about this?  He probably refers patients to transplant clinics for lung transplants, so maybe he could guide you in this regard.

I doubt if I have helped much, but I wanted you to know that someone was reading!  Let me know more of your thoughts when you have them.  LOL!

[chook]

I wish I had some words of wisdom to help you, Danny, but being in Australia, our system is entirely different. I, too, can relate to the desire for a pre-emptive transplant - it doesn't seem such a big thing to ask for. Any day without dialysis is a good day! hope you can get this all sorted to your satisfaction.

[dstevens]

Moosemom, believe me nothing you say could possibly anger me or cause me to tell you (or anyone else) off. I appreciate any/all input I get on here, even if I don't necessarily agree with all of it. I am very thankful that anyone has taken the time to read my post as I know it is a lot to take in. I'll try to answer any questions as best I can.

As far as the catheter/fistula issue their reasoning is what you said, they said that catheters get infected easier and they only use them as "temporary" accesses. Now, my issue is this; 1) When I was on dialysis the first time it was only using a catheter. I never had a fistula done. They wanted to at the time, but I had a tattoo done recently and they didn't want to mess with it so they just did the cath. I had it for 6 months (my entire time on dialysis) with no infections and no problems with it. Now they are insisting that it's not an option when I just know that isn't the case. I HAVE to have a choice in that don't I? 2) Hypothetically speaking, if my relative would still be cleared for the transplant wouldn't a cath be an acceptable means of dialysis since it SHOULD be done within a relatively reasonable amount of time if all the testing went ok? They are trying to tell me that the process will take at least a year.

My pulmonologist and I have a super close relationship. I've never had a doctor be as understanding and compassionate as this man. He's the only doctor I have encountered that actually listens and takes into account things I say. He never expressed any reservations about taking over care for me. He didn't necessarily agree with me (which I understood), but he could see where I was coming from. He ordered blood work, adjusted Prograf doses etc throughout the past 6 years and I was in pretty good health for the most part. I honestly don't think a neph or tx team would have/could have done much differently as far as my care was concerned (at least not without trying to force me into countless procedures that I probably would not have agreed to anyway). I feel like by not going to see them and their team I bruised their ego's and now I'm the one that is going to pay the price. I feel like they are playing god, deciding on how/if I live or die. I am beyond frustrated. I know my pulmonologist would absolutely write any sort of letter saying I "complied" with everything he said, but sadly I don't think it would matter at all.

The bottom line is I know I may have made a mistake, but I think it's horribly inhumane for them to punish me now by both denying me a chance to get a transplant and possibly avoid dialysis, or force me to do dialysis in a way I do not want to do. I don't know what else to do. I don't want to die, but I'm truly starting to feel like I'm running out of options. Thank you again everyone for reading. I appreciate all the comments I get. I have thick skin so don't worry about saying the wrong thing. I can take it!

[amanda100wilson]

Maybe, you made an unwise decision but you have FSGS which can recur in a transplanted kidney, so it seems unfair to term you non-compliant since it lasted a good few years.  That being said, you should not have dispensed with your transplant doctors, but rather should have found another transplant unit to care for you, which is what I suggest you do if you find yourself in the same predicament down the line.  In the meantime, get evaluated at a different centre, maybe get a referral to help you from your pulmonplogist, if he is willing to do this.  You can be listed at more than one hospital althogh once you have a transplant, the unit that does the op. will be the ones that manage your care

[cariad]

Ooooooh, I am fuming right now. Absolutely livid for you, dstevens. This represents everything degrading and control freakish about transplant. I don't think you made any mistake at all. I dropped my transplant center cold when I was 14, never bothered to contact them again. I had labs sent to them from prep school, and periodically they would try to track me down after, but that was it. I had my second transplant two years ago and one of the first things I did was call the original hospital to tell them to not contact me again. The obnoxious ones treat us like pets! I took a similar approach to yours in that I found a GP (not a specialist, a lowly GP) that I really got on with and who really seemed to care to a greater degree than I have ever seen from a doctor before or since, and just turned everything over to him. He also was willing to take me on when less confident and skilled doctors would shudder at the sight of my records. If there is one reason that I am glad for having had kidney failure my entire life, it's that today the doctors rarely dare to give me crap, and the ones that do hear about it.

Sad, because I have had a bit of interaction with Pittsburgh and they always seemed so nice. They probably wanted my insurance money.

OK, so it seems your best option is to find another center. I have NOT heard good things about Johns Hopkins for transplant. It is really not their strongest area as far as I can tell. Cleveland clinic, is that within range? Don't people rave about them? Did Rachel (rsudock) go to them? Perhaps she could get you in touch with a doctor there if you want to explore other hospitals. However, if you are most comfortable with Hopkins and can pull off the travel, then Hopkins it should be. With the catheter, once again, they are just being controlling. I suggest you invoke your patient rights whenever discussing this in future and do not admit any wrongdoing. They certainly never will, not with a gun to their heads.

By the way

[MooseMom]

Cariad, I'm really glad you posted a response...I was hoping you would!

[dstevens]

Cariad, thank you so much for your response. It makes me feel so much better knowing someone else has gone through a similar situation to mine and can relate. I could not agree more with your comment about feeling like their pet (in all honesty, I treat my dog WAAAAAY better than I've been treated). Here's my question though, if you dropped all contact with your transplant center how did you get a second one? Were you not labeled "noncompliant" like I was, and if you were how did you get around it? I just didn't know if I tried to go to another transplant center if my label of being noncompliant would follow me everywhere when the new place requested my records and whatnot. The Cleveland Clinic is actually closer to me and I contacted them earlier this week and am awaiting a packet of information in the mail. I also am not really sure how going to another center would work with my insurance and I have a feeling most places don't accept monthly payments on a kidney transplant (I wish!!) Do you happen to know how I could get in contact with Rachel (rsudock) about possibly helping to refer me to a specific doctor? I am still not entirely sure how to use this site and don't really know how to contact specific people.

I can't tell you how much I appreciate all of the input and more than anything the empathy and understanding I've gotten so far from everyone. It really does mean a lot. I am trying to hold out hope that something can work out. It's just very discouraging as I'm sure most of you know.

[RichardMEL]

Cariad is the champion of the people!!! And a lovely lady to boot!

dstevens, I don't have much to add to what the others have written except to make the general observation that you're not a "normal" (yeah I know, that is stupid to use that word) potential tx patient. Apart from your other complications like CF, you now have a PRA issue due to antibodies from your first tx - and that may WELL clash with your relative's potential donation. This, in part, may be driving the "this process could take a long time" stuff from the new tx team - remember I doubt any of your specialists are deliberately trying to make life even more frustrating for you, or difficult. The reality is that you are in a difficult situation because of your history-as you have related it (and I am so sorry for all you've gone through).

My thought on the catheter issue is that it is pretty standard these days to prefer to NOT use a cath long term. I never used one, I got my fistula 2 years before I started D (for a number of reasons that aren't relevant here). I understand you want to avoid having something like that that is very visible, but I wonder if their thinking isn't along the lines of - we may have 9 or more months here - let's get that fistula in and mature while we can so it's ready to go. Also the cath infection issue is very real, and remember you've already had a number of infections, so there's a bit of history there. With your othet complications suffering through peritonitis(sp?) could well be much worse than you imagine. And finally the fistula is the most stable and efficient method for hemo we currently have.

I'm not trying to defend anyone here but provide perhaps a bit of an alternative view to what may be driving some of the things you're being told.

I know this is distressing and frustrating for you and I do hope you find a path that works better for you.

[amanda100wilson]

Excuse me if I am making a very uninformed question,but why did you not have a kidney/ lung transplant and would this be an option this time?

[Riverwhispering]

I guess I'm confused again.   Why are you seeing a pulmonologist instead of a nephrologist when it comes to dialysis or kidney transplants?   I understand you are close to the one doctor but he isn't a specialist with kidney issues. 

[dstevens]

I see a pulmonologist because of my cystic fibrosis. I am seeing a nephrologist now but I hadn't for the past 6 years because of the issues I had with all of them at UPMC. I lost all trust in them and was treated horribly so I went to who I was most comfortable with. I don't think there is anything a nephrologist would've/could've done that he didn't do that would have prevented this kidney from failing as well.

I didn't have a lung transplant along with my kidney because it has not been necessary. As far as my CF goes, it's pretty good and there hasn't even been any discussion of needing a transplant. Thank god!

[cariad]

Cariad is the champion of the people!!! And a lovely lady to boot!

Aw, Richard - compliment of the week! Thank you!

Donny, first apologies but I got Rachel's transplant hospital wrong. She went to University Hospitals, not Cleveland Clinic. My uncle actually flew to Cleveland Clinic for his heart and was well impressed with them, but transplant is another arena all together. However, to answer your question about sending PMs (personal messages) to individuals, if you are sure of their screen name you can just click at the top of the page next to your avatar, at the place where it says "Hey, dstevens, you have X messages, X are new". Click the underlined part and it will take you to your message centre, then click on messages and choose new message. Then you would just type 'rsudock' or whatever screenname into the address box. I think it will do that autofill thing and make suggestions about whom you want to contact. The easier way is to click on the person's screenname and choose 'send message'. There is a list of members that is accessible at the bottom of the page, with the alphabet at the top of that section so that you can get to a screenname faster. Or you can click on their name anywhere else you see it - by their posts, at the bottom of the page in the list of members who have logged on for the day, etc.

Sorry, that was really long and probably way too detailed. Moving on to the medical stuff: most of what I am going to say is speculation, informed by some 35+ years of living as a transplant patient, and much of it is not very hopeful for your situation. I'm a cynic and I have been wrong many times, so don't let anything I say cause you to give up hope. You're here now, and IHD is behind you, so I'm hoping we can bounce ideas around and happen upon a good course of action for you. Firstly, Richard's response is certainly worth keeping in mind. There may be real medical reasons that they want you to have a fistula rather than a tunneled line (cath). If they feel that a cath is too dangerous, then the proper course of action would be to explain that in a calm, respectful, and concerned way, not to basically cry "Bow down before your rulers or suffer transplant banishment!" This is their highly-compensated JOB, and part of that job description should be "An ability to communicate clearly and compassionately with a diverse array of autonomous human beings."

So my story is almost exclusively one about blind luck. At the age of 14 I had already outlasted the stats of the day for transplant (this was roughly 1 million years ago come March). My original transplant hospital was full of world-renowned doctors (and world-sized egos) and they never bothered with any attempt to recognise that this was a little kid who did not know what was going on and was becoming more and more angry by the second because I was in pain, dying of thirst, and after the transplant was being bullied on a near-constant basis by my own family over my weight gain from prednisone. (Doctors contributed their own insults, too.) So, the minute I went to prep school, about as far away from my family as I could get without leaving the country, I ignored the kidney nonsense and just went about life, taking my drugs here and there, but only seeing doctors when I felt ill, and rarely kidney doctors. Switching hospitals was easy for me because all they could see was "she lasted 34 years with this first kidney and her PRA is near zero! She is going to make us look sooooooo good!!!" When you last 34 years with a transplant, no one questions your compliance. In fact, they will rewrite your history right in front of you. Many times I have had medical people, including surgeons, tell me that they just know I won't be an adherence risk. I told my mother, witness to my entire life, this once and she laughed and said "No, I can certainly promise them you weren't [compliant]" I wish there was something you could take from this story other than transplant like most things in life is truly unfair.

What I would do in your situation is try to get opinions on doctors/hospitals from people on this site. I don't want to lead you down the wrong path again, but I believe Paris (a moderator) went to Hopkins and had a great experience there. However, she has not been on much lately so I worry that she is struggling with her own personal issues at the moment. I'm sure she wouldn't mind you asking about her experience if she did in fact go there. You can also find her posts about her experience in the transplant section. Once you have found a hospital or two that sounds promising, make an appointment for an eval. They will probably ask why you want to leave Pittsburgh, so be ready for an answer there. I would answer this similar to a job interview answer (don't insult your previous employer, but instead lavish praise on your potential new employer). So, perhaps say something like "I have heard such wonderful things about this hospital and I know I have such a complicated case that I felt I needed to go with the best." If you do contact someone who has had a transplant there, I would mention that, too (probably want to get their permission first). They will want to know how you are going to keep appointments when coming from so far away, and especially in the first 3 months when clinic visits are so frequent. Try not to volunteer any information that they don't ask for. Definitely, I think your pulmonologist could be a great advocate for you. Most of these doctors only respect other doctors, and even then they are very competitive with one another. It reminds of congress - they will insult each other behind their backs, but defend each other to patients. Oh, and it's a microscopic field, so they all know each other.

Insurance: would you mind sharing who your carrier is and whether you have HMO or PPO? Transplant is it's own world in insurance, they tend to be much more lenient with transplant because they know that Medicare is going to pick up the bulk of the tab. (You have Medicare, right? Or planning on applying when the time comes?) If you have one of the major providers and a PPO, you should have no problems with the switch. HMOs are much trickier. Mine in California told me that they will approve a non-local hospital if that hospital offers something that your first hospital doesn't. You might want to investigate clinical trial options. I know my transplant hospital has a QOL (quality of life) study that they will put patients into that do not meet any other criteria. I imagine there is no medical component to this, it is all surveys and looking at records, so no real risk. If they do have some sort of clinical trial, you might be able to use this in two ways: argue to your insurance that this is a program not offered elsewhere, and increase the hospital's interest in you since you are helping them out, too. Your insurance should connect you with some sort of 'complex care' program so that you will have only a point person to contact about any of your different medical appointments. I have had some good ones and some awful ones. Just remember, in the end, these people are not your friends, so don't trust them too far.

All right, I should let you go. Sorry! This is long, confusing, and filled with my personal views on transplant that could be way off base in your situation. I hope you can get answers and plenty of support on this site. Our forum is your forum, so please keep asking questions and participating in discussions.

[dstevens]

Richard, I appreciate the input and thoughts. My issue with the cath/fistula is this; I understand their concern about infection with the cath, but I also know that fistulas are not always guaranteed to work/mature properly either. I had the cath for 6 months before with no infection problems so I do have an idea as to how to properly care for them. My point is this, shouldn't I at least have a CHOICE between the two methods? I feel like as the patient that's my right. That's what I'm trying to figure out.

[lou]

I also wish i could offer some advice but am in the UK so totally different here. I just feel so bloody frustrated reading your situation and hope so much you can find a way round this. I just dont get this non compliance crap - we are all just trying to survive aren't we and want the best and are not trying on purpose to piss off the hospitals! ahhhh! Anyway sending best wishes your way and hope you find a way round this x x x

[sparklelady]

dstevens, can you go to Allegheny General? I'm so sorry you had this experience. I had a transplant at UPMC Montifiore and had a totally different experience. Not to say there weren't issues on the way, but for the most part, things went smoothly. I don't have all the medical issues that you do. It makes me sad to know you were treated so badly when I found new life at this hospital.

[dstevens]

Sparklelady,

Unfortunately AGH is who I am currently trying to go through and they are the ones that have told me that I have to go on dialysis and that the process would take at least a year (despite all the potential donors). Montifiore is also where I had my original transplant done. I wish I could've had the experience you did. I'm glad to hear that they don't treat everyone how I was treated though, so for your sake that's good.

[dstevens]

Cariad,

Thank you again for all the advice, especially what to say/what NOT to say at the eval at a potential new place. As far as my insurance is concerned I have UPMC for Life (HMO), Access (PA Medical assistance), and Medicare part A & B. At least I think that's everything. All of this insurance stuff is so unbelievably confusing to me. I don't even know where to start with most of it.

[MooseMom]

I would imagine that the financial people at the tx center you eventually go with will let you know what benefits you have!  The tx team wants to make sure you can survive surgery, and the financial dept wants to make sure you can PAY for it.

Keep us informed as to what you decide to do.  This is an important story for the many people who I'm sure are having the same sorts of issues with their tx centers.

[RichardMEL]

I definitely agree that you should have the choice of cath or fistula - certainly in the situation where you may only need dialysis a relatively short time(if at all) with a living donor hopefully lined up it does make some sense to go the cath route - specially since your previous good experience without infection. At the end of the day it's your body and your right to chose something - I think the docs should say they "advise against..." but shouldn't stop you, unless they consider it more harmful to you in some way that isn't obvious - but they should then explain their reasoning to your satisfaction. Again though you have the right I would think. It's a difficult one. It does seem though that you're not being given enough respect in terms of having the ability to make an informed choice about your own treatments, and I don't think that's right.

[dstevens]

Richard, I could not agree more. That's all I am asking for is the right to make a choice about something that is being done to MY body. I feel like a doctor should give me all of the information that is relevant, pros and cons of both methods, and his personal suggestion/professional opinion, but at the end of the day the choice should be left up to me. I think they are being grossly unfair and uncooperative in the entire matter. I go for an appointment on Thursday to talk with the doctor one more time so I will see if I make any headway. Here's hoping....

[Chris]

Well one thought I had is you should get a local nephrologist who can help monitor your kidney that maybe your pulmanary. can reccommend. That way if something comes up, they can be a liason to your transplant team. But I have no idea how far the Cleavland clinic is to you, but always good to have a back up doc. Like you and cariad, I have a doctor (or in my case 2 doctors) I can trust that are my local doctors compared to my transplant and primary care doctor associated with that hospital. I have had to fire my first nephrologist, endo(also primary), and cardiologist regarding care and ignorance, so always use your resources even ones in front of you my college instructor once said to find a specific doctor that you feel comfprtable with. A neph is a good thing to have, just like you have a pulmanary doctor who knows the respitory system, a neph knows the kidney.
 
Drop UPMC and go to Cleavland and start fresh I say, don't go to someone you can not trust or feel comfortable with. Or ssee how much the faculty has changed. I found out the doctor I had trouble with no longer works there and even tho there are still some problems at my transplant clinic, it is better.
 
Good Luck

[rsudock]

I'm here! I'm here!! Ask away!!     sorry I just saw this thread!!!  So yes I am followed my University Hospitals in Cleveland...not the Cleveland Clinic. I just didn't click well with the clinic and 90% of folks I come into contact with do not either....I will send you a PM with my doc's info!!!

Cariad thanks for thinking of me as someone who could help!

xo,
R

[cariad]

I'm here! I'm here!! Ask away!!     sorry I just saw this thread!!!  So yes I am followed my University Hospitals in Cleveland...not the Cleveland Clinic. I just didn't click well with the clinic and 90% of folks I come into contact with do not either....I will send you a PM with my doc's info!!!

Cariad thanks for thinking of me as someone who could help!

xo,
R

Oh, clicking with the medical personnel is well over half the battle. I don't care how famous and skilled they are reputed to be if they are just plain awful to interact with, I would pass. You need to trust these people with your life and that doesn't come with dreading the sight of them. It's such a weirdly intimate relationship between doctor and patient, I need to get on with them on a personal and professional level.

Of course I would see you as someone who could help, Rachel, my fellow child renal patient. Those of us who went through this as kids, we know a good doctor at 1000 paces. (We also know when to run....)