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I am past the testing stage and resp. rehab. and now on rehab.

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I am past the testing stage and resp. rehab. and now on rehab. maintenance until I get picked to be on list. I have a very unusual question - everything to do with this experience has been unbelievable. Dr Nurses, Techs, everyone is so nice and seem to love what they do. But 1 problem has lifted its ugly head. I was instructed that everything (meaning all coorspondance) is to be handled through my transplant coordinator. One problem, she is always in a hurry and has said some awful things to me and my husband. We told my husband's dr. about these happenings with her and he nearly blew a gasket. He said she needs to be brought to her supervisor and before the ethics committee. Yes, it's that bad.The last time we were at the dr and she lied in front of him and I called her bluff. I will probably never get a transplant now but this has gone too far. Even her co-workers hgave told us of similar happenings. I think sometimes people are so sick and so scared to cross her becausre they think she will keep them from getting thier lungs. All I want to do is request another coordinator. Some tell me that I should ask and some Dr.s have told me to go to her supervisor - I have some of here remarks on tape when she left me messages. I am terrified. My Dr says I have a little time to go, I'm only at 28% lung capacity. Please give me your opinion, it would be greatly valved. I'm told that a transplant is the only hope I have and have known this for some time now. Does a transplant coordinator really have that much power that she could keep me from getting a transplant?
Submitted: 2 years ago.
Category: Organ Transplantation
Expert:  DocPhilMD replied 2 years ago.

No, they do not have that much power. You could easily go to another hospital but this person's supervisors need to be made aware of the problem.

 

I think you definitely need to go to the supervisor and tell them.

 

Or confront the person who is doing it with the threat of going to the supervisor.

DocPhilMD, Organ Transplant-expert
Satisfied Customers: 43408
Experience: Internal Medicine Doctor
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Customer: replied 2 years ago.

Dear Dr.Phil,

Thank you so much for taking the time and consideration in this matter. I am very uneasy finding out who her supervisor is and how to approach them. I don't want to come across as someone that is trying to get someone fired. I will go ahead and tell you what has taken place so far - then maybe you could give us an idea how we should continue. 1) I had been in resp. rehab. about 3 weeks and I received a letter from her

stating I was not eligible for transplant at this time because I am considered too functional. It was not signed by her, just had her named listed at the bottom as the person who wrote it and not dated. I took this letter to rehab. with me and showed the rehab. superviser and her manager. I silently cried I was so disappointed and scared. Rehab.supervisors said it couldn't be correct. They said I had to be completely finished w/rehab. and be on 2 day a week maintenance and all information input in their computers - which it was not! I had just started. They went into an officec and called said coordinator. I knew something was wrong by the look on Julie's face. Julie said my coordinator said it was just a mistaken and laughed and told me to take the "said" letter in rehab. and have a bon-fire with it in the middle of the room and just cracked up. She would not talk to me. Everyone that knows me knows that I have a VERY good sense of humor. When you work with the public plus own your own business - a sense of humor is a MUST!! This I'm sure you realize in a greater scale than I; being a Physician and all. Julie and Debbie (Rehab.Managers) said they didn't think it was very funny either, but that this is mild compared to what can come out of her mouth in committee. So I just laughed and said to them I hope I don't have anymore run-ins with her. Guess what , Number 2--I had to call her a couple of months later w/a question about a test. I asked her if Dr Duncan said I was down to 27% lung capacity now. My husband and I take notes each time we meet with him but I thought I might not have understood him correctly. She got very impatient w/me and said in a very loud voice "YES IT IS 27% BUT DON'T WORRY ABOUT, IT CAN GO UP AND DOWN EVERYDAY AND ANYWAY IT'S NOT LIKE YOU'RE GOING TO DIE TOMORROW KAY SO DON'T WORRY ABOUT IT". I was so shocked I didn't know what to say, so I just said thank you and hung up. The last time I saw Dr Duncan was in Mar 2012 and I wanted to tell him so bad but I didn't want to seem like I was a tattle-tail. He gave me the perfect opening--He said I have a little time left before it's time to panic as long as I stay in the mid 20's lung capacity. And I said-OH YOU MEAN LIKE BRENDA TOLD ME - I HAVE SOME TIME BECAUSE IT'S NOT LIKE I'M GOING TO DIE TOMORROW!!. I wish you could have seen her face. She turned away from the computer and SCREAMED in front of Dr Duncan that she DID NOT say that to me and my husband and myself looked at her and said "oh yes you did". She actually screamed!!. Well long story short, she is out to get us. No 3 happened last week. She called and left me a message on the phone that I had not shown up for a test and if I was not going to continue to do what I was told to do, it would be the end of my envolvement in her transplant program at Methodist IU Health. I DID NOT have any tests scheduled that I know of. They always call ahead of time and mail an order to me. I have no call and no order. Now I have to call her back and tell her this and listen to her yell again. Because of Dr. Duncan knowing about the comment ( NOT DYING TOMORROW) and the screaming, should I go see him or her supervisor? How should we approach this matter or should I just try to forget about it. You know by being a physician, when a patient knows that the only thing that will save them is a certain procedure hopefully in the next few years , that never leaves your mind - day or night. Somehow I've just learned to live with it, but it's not very far away. I have been to Mayo Clinic and several years also made a trip to National Jewish Lung Research Hospital in Denver. I keep thinking we should go back to Denver. My Dr. is still there, Dr Cecille Rose. Dr Duncan, my Transplant Pulmonologist says I am not his patient (he checks me every 6 months) and should always see my primary pulmonologist, Dr Richard Rhodes. I see him every 6 months unless I'm in trouble w/my lungs. He saved my life 2 yrs ago - was in ICU for 11 days on a vent. He is very, very hard to get in to if you have a serious problem. My regular primary physician Dr Leeanne Nazer has helped me alot when I can't get in to Dr Rhodes. But in the last 2 yrs she has not been as receptive in treating me because of the seriousness of disease. So, please tell me your opinion on 2 things please. One-what do I do about my Transplant Dr that only sees me every 6 months and says he is not my Dr until transplant, Dr Rhodes is impossible to get an appointment with, and the other is not comfortable with my disease. We are paying $ 14,000 a yr just for my coverage, it's not like we don't have good insurance. What would you do? Punt and start all over again? ha! Number 2-what do I do about Brenda and her supervisor or seeing Dr Duncan again about switching to another coordinator. I am in Indianapolis, IN. Dr Duncan said Cleveland Clinic will do transplants and 2 Hospitals in Chicago and One in St. Louis. None of this will do us any good - they are all considered out-of-network by our Anthem BXBS Insurance. Please do not take me as a rambling idiot. It is comforting to know that it's ok to be fearfull of losing a chance to live a few years longer than I thought. We just need a direction. All transplants are done at IU Health Methodist Hospital. We thought about going to a completely different set of pulmonary docs, but all transplants go to Methodist and they all know one another.

Thank you so much for taking the time to answer these questions for us. We are lost and don't know what to do or where to turn. Other alternative is to forget everything about a transplant and just try to stay as well as possible these next few years. Your time is greatly appreciated....Thank you, XXXXX XXXXX

Customer: replied 2 years ago.

Dear Dr.Phil,

Thank you so much for taking the time and consideration in this matter. I am very uneasy finding out who her supervisor is and how to approach them. I don't want to come across as someone that is trying to get someone fired. I will go ahead and tell you what has taken place so far - then maybe you could give us an idea how we should continue. 1) I had been in resp. rehab. about 3 weeks and I received a letter from her

stating I was not eligible for transplant at this time because I am considered too functional. It was not signed by her, just had her named listed at the bottom as the person who wrote it and not dated. I took this letter to rehab. with me and showed the rehab. superviser and her manager. I silently cried I was so disappointed and scared. Rehab.supervisors said it couldn't be correct. They said I had to be completely finished w/rehab. and be on 2 day a week maintenance and all information input in their computers - which it was not! I had just started. They went into an officec and called said coordinator. I knew something was wrong by the look on Julie's face. Julie said my coordinator said it was just a mistaken and laughed and told me to take the "said" letter in rehab. and have a bon-fire with it in the middle of the room and just cracked up. She would not talk to me. Everyone that knows me knows that I have a VERY good sense of humor. When you work with the public plus own your own business - a sense of humor is a MUST!! This I'm sure you realize in a greater scale than I; being a Physician and all. Julie and Debbie (Rehab.Managers) said they didn't think it was very funny either, but that this is mild compared to what can come out of her mouth in committee. So I just laughed and said to them I hope I don't have anymore run-ins with her. Guess what , Number 2--I had to call her a couple of months later w/a question about a test. I asked her if Dr Duncan said I was down to 27% lung capacity now. My husband and I take notes each time we meet with him but I thought I might not have understood him correctly. She got very impatient w/me and said in a very loud voice "YES IT IS 27% BUT DON'T WORRY ABOUT, IT CAN GO UP AND DOWN EVERYDAY AND ANYWAY IT'S NOT LIKE YOU'RE GOING TO DIE TOMORROW KAY SO DON'T WORRY ABOUT IT". I was so shocked I didn't know what to say, so I just said thank you and hung up. The last time I saw Dr Duncan was in Mar 2012 and I wanted to tell him so bad but I didn't want to seem like I was a tattle-tail. He gave me the perfect opening--He said I have a little time left before it's time to panic as long as I stay in the mid 20's lung capacity. And I said-OH YOU MEAN LIKE BRENDA TOLD ME - I HAVE SOME TIME BECAUSE IT'S NOT LIKE I'M GOING TO DIE TOMORROW!!. I wish you could have seen her face. She turned away from the computer and SCREAMED in front of Dr Duncan that she DID NOT say that to me and my husband and myself looked at her and said "oh yes you did". She actually screamed!!. Well long story short, she is out to get us. No 3 happened last week. She called and left me a message on the phone that I had not shown up for a test and if I was not going to continue to do what I was told to do, it would be the end of my envolvement in her transplant program at Methodist IU Health. I DID NOT have any tests scheduled that I know of. They always call ahead of time and mail an order to me. I have no call and no order. Now I have to call her back and tell her this and listen to her yell again. Because of Dr. Duncan knowing about the comment ( NOT DYING TOMORROW) and the screaming, should I go see him or her supervisor? How should we approach this matter or should I just try to forget about it. You know by being a physician, when a patient knows that the only thing that will save them is a certain procedure hopefully in the next few years , that never leaves your mind - day or night. Somehow I've just learned to live with it, but it's not very far away. I have been to Mayo Clinic and several years also made a trip to National Jewish Lung Research Hospital in Denver. I keep thinking we should go back to Denver. My Dr. is still there, Dr Cecille Rose. Dr Duncan, my Transplant Pulmonologist says I am not his patient (he checks me every 6 months) and should always see my primary pulmonologist, Dr Richard Rhodes. I see him every 6 months unless I'm in trouble w/my lungs. He saved my life 2 yrs ago - was in ICU for 11 days on a vent. He is very, very hard to get in to if you have a serious problem. My regular primary physician Dr Leeanne Nazer has helped me alot when I can't get in to Dr Rhodes. But in the last 2 yrs she has not been as receptive in treating me because of the seriousness of disease. So, please tell me your opinion on 2 things please. One-what do I do about my Transplant Dr that only sees me every 6 months and says he is not my Dr until transplant, Dr Rhodes is impossible to get an appointment with, and the other is not comfortable with my disease. We are paying $ 14,000 a yr just for my coverage, it's not like we don't have good insurance. What would you do? Punt and start all over again? ha! Number 2-what do I do about Brenda and her supervisor or seeing Dr Duncan again about switching to another coordinator. I am in Indianapolis, IN. Dr Duncan said Cleveland Clinic will do transplants and 2 Hospitals in Chicago and One in St. Louis. None of this will do us any good - they are all considered out-of-network by our Anthem BXBS Insurance. Please do not take me as a rambling idiot. It is comforting to know that it's ok to be fearfull of losing a chance to live a few years longer than I thought. We just need a direction. All transplants are done at IU Health Methodist Hospital. We thought about going to a completely different set of pulmonary docs, but all transplants go to Methodist and they all know one another.

Thank you so much for taking the time to answer these questions for us. We are lost and don't know what to do or where to turn. Other alternative is to forget everything about a transplant and just try to stay as well as possible these next few years. Your time is greatly appreciated....Thank you, XXXXX XXXXX

I will stay on-line so I can get your answer. Thanks, Kay

Expert:  DocPhilMD replied 2 years ago.

My next move would be to report to the supervisor.

 

If this is done and nothing happens, report again.

 

If this is done and nothing happens, then you need to "punt and start all over" as you say.

 

 

Customer: replied 2 years ago.

We thought you would have more than 3 sentences in your reply.

Expert:  DocPhilMD replied 2 years ago.

Sorry about that.

 

What else would you like to know?

Customer: replied 2 years ago.

What do you think about going back to Denver to Natl. Jewish Lung Research Hospital to get a new base-line to see where I really am in regards XXXXX XXXXX transplant?

Expert:  DocPhilMD replied 2 years ago.

It's going to be hard to start over but that may be what you need if you ever realistically want a decent chance at getting a transplant.

 

Plus, it never hurts to get a second opinion it's just that this is going to be a very taxing second opinion.

 

If I were in your shoes, I probably would. It's hard working against someone in the inside.

DocPhilMD, Organ Transplant-expert
Satisfied Customers: 43408
Experience: Internal Medicine Doctor
DocPhilMD and other Organ Transplantation Specialists are ready to help you
Customer: replied 2 years ago.
I have a friend that is a Dr and his newborn baby was in the hospital for the first yr & a half of her life because of a diseased liver. He said it can be quite the game. I always hoped he was just kidding - guess not.
Expert:  DocPhilMD replied 2 years ago.
He would know best of anyone. being a doctor and a father of someone who needed an organ. I'm sure he has seen the worst of it.

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