Doctors-What They Say And How They Say ItHow to Respond
Posted 12 January 2012 - 10:45 PM
In November my cardiologist's office called and told me I was due to come in. I told them I was scheduled for a Echo and CT Scan in Dec. and a lipid profile in Jan. and we scheduled it after the tests. My husband has the same cardiologist so we made a joint appointment. I spent over 2 hours the night before going through my records and pulling out my lipid profiles over the past year, noting when I went on and off the statin and the changes, and getting all my tests pertaining to the heart together. When the doctor came into the room I had my husband go first "because I would take longer." He was examined and scheduled for an Echo, sonogram of the abdomen and a follow-up. My turn. Dr. says "I don't know why you are coming to me". (I didn't think to say your office called me to come in). He continued to tell me that my scleroderma specialist called him and told him he did not get the right numbers for my heart catherization. This was done in 2010 and it is now 2012 so apparently this is really bothering him. I told him two doctors at my center said they didn't get the right numbers. He proceeded to defend himself. He said I am a high risk for a cardiac event and had to take medication and that he would send a letter to my nephrologist about putting me back on a statin (in previous posts I wrote about the pain and not being able to walk while on it and the total absence of those symptoms after going off). I brought up the Star Clasp he closed me up with after the heart catherization and him telling me I would have to remember I had metal in my body when I have an MRI and that I saw it on my bone density scan and it is very big. He told me it is called a Star Closure and that he NEVER told me that, it is MRI safe and is made from Nitronol (so where did I get that from? I didn't make it up). Although I had already decided this, the doctor said from now on I should have a cardiologist at my scleroderma center. He told me I have too many doctors (in Fun and Friendship for all I won "the most ologists"). I am really glad my husband was with me because he was upset about the way the doctor talked to me so it was not just me.
The next day I saw my therapist and discussed this. Her response was the same as ours but said I should have said "what doctors do you suggest I drop"? Good response but I didn't think of that...I also went back to the radiology lab that did the scan and found out that Nitronol is MRI safe and that things look much bigger on a x-ray, something the tech did not tell me when I looked at the scan.
The next day I saw my nephrologist. Everything with my kidney transplant is going well but I knew there would be discussion about my lipid profile and magnesium level. I saw a nutritionist at my hospital to discuss foods high in magnesium and iron and although some of the things she said I disagreed with she did give me some good food ideas which I am implementing. I stopped taking 2,400 mg of magnesium daily (my doctor's order) because it causes such extreme diarrhea and pain. My magnesium level dropped 1/10th of a point. The nutritionist also gave me a print out on magnesium. According to it the maximum dose is 350 mg of supplement daily, I had 3 of the 4 characteristics for toxicity and 4 out of the five for poor absorption. Since my nephrologist couldn't even tell me what foods were high in magnesium I brought the print out to him, highlighting all my areas of concern. I also found 2 other sources about the maximum dose. He waved it away, literally, had no interest in it. I told him about my visit with the cardiologist. He had not received a letter from him but told me I had to go back on the statin I was on because I was high risk and it is the only one that doesn't interfere with prograf, an anti-rejection drug. So I said "so either I have to end up in a wheelchair or have a cardiac event?" He doesn't think the statin caused the leg pain. (It started after the statin and ended going off it). I told him the cardiologist said I had too many doctors and he said he did too. BINGO! I used the line "so what doctor should I drop?" He couldn't answer and each doctor I brought up he agreed I needed. "We" have decided to compromise and I am to take 800 mg of magnesium daily and the statin 2x's a week. I will have blood work drawn in 6 weeks and will revisit the issues then. He also said he would talk to the cardiologist. Ut oh...
So, what does one do? I have decided to drop the issue with the cardiologist since I will not be going back to him. My therapist spoke with me about using my energy for positive things and this would just use energy for something negative. My nephrologist offered a compromise and I can't switch nephrologists, he has been with me since transplant and in general I think he is a good doctor. I guess I answered my own question.
Why is it that our doctors do not validate our observations about our bodies? Why is it that most resent the informed patient? I am not my mother's generation and think that doctors are the be all and end all of knowledge. Have you encountered this and how do you deal with it?
Posted 13 January 2012 - 02:31 AM
I agree with you about inappropriate comments. I think partly it is to do with them being human too, having good days and bad days, but even so, it would be nice to think they could be a bit more humble when you point out to them what they have said.
They have to be very careful to be seen to do the 'right' thing because of the fear of court cases, particularly in your part of the world. Here we have a diffferent system which means one can't actually sue or take legal action in most cases. I think I am right in saying that the only case which could go to court would be sexual. That doesn't mean there is room to be thoughtless but the fear is not the same.
The worst case I have experienced is the Gastro who said there was no point in pursuing any remedial surgery because of my PH and I might as well go home and make the best of the rest of my life (or words to that effect). In that case I simply won't go back to him, or indeed to his hospital. I have the luxury of being able to change the address of my primary residence to our city pad so now I 'belong' to the city hospital.
Another one was the guy who sent me home with a prescription for anti-depressants when I came to him with a sickly baby. I never went back to him again either.
Perhaps it is an ego thing. Who knows.
I sympathise with you about the meds which cause you pain, I have been through that lately and finally got my own way .
Posted 13 January 2012 - 06:13 AM
Don't forget the tendency to tell patients they are depressed etc when some doctor can't make a diagnosis or explain the origin of a symptom. To me that's a red flag that some doctor doesn't know what's going on and that's actually okay, if they admitted it.
I recently went to a dentist after a 10 year absence, fear being the reason for the 10 year stretch, and let me tell you I will not be going back to that surgery unless my teeth start to fall out. All I did was have my teeth whitened and one crown put it. Even thought I told them what was wrong with me and that I was debilitated they expected me to be able to attend as able bodied people do and hounded me about appointments. I had to miss some because I was to ill to get out the front door and the response was that if I missed another appointment they wouldn't see me anymore. Also they would telephone you and if you didn't answer they would ring you straight back. Now if you're lying in bed debilitated and disabled and you don't answer the phone because you need to rest and it rings and rings you eventually answer it thinking it's an emergency right? No it's just the dentist. They would do the same with appointment reminders, the message would ring your phone about every 20 minutes if you didn't answer it first time round.
I tried to explain to a receptionist that I couldn't answer the phone everytime it rang, I was disabled and debilitated etc, she was totally uninterested and just talked over me saying they weren't allowed to leave messages. By the way we always paid for our treatment in advance so whilst they were hounding me to attend appointments I had already pain for the treatment. I thought about writing to them with suggestions as to what they could do to help future disabled patients but I came to the conclusion that they just weren't interested so will never go back there.
If you do want to raise an issue with a doctor in writing is best because you can say everything you need to say uninterrupted. I have done that in the past and although it go no immeniate response, in passing the doctor commented to me that people who helped correct him were friends, something like that anyway. You can do it just for the cathartic effect for yourself, you say your bit and maybe it will help someone else and then you let it go.
Most importantly people have to own their own stuff so don't let anyone deflect their stuff onto you, you're not the problem and as far as having too many doctors...are you serious? You could have come back with the reply "well if any of them could actually cure me..." or "well I won the 'Ologists award for 2011 so it's worth it!"
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Posted 13 January 2012 - 09:21 AM
I have to admit that as far as my experience with Scleroderma goes, I have been incredibly fortunate. Almost from day one when I first saw a general practitioner (not even my usual one, this was a young, keen, very pretty doctor, obviously right on the ball! ) I've received first class treatment from the National Health Service (NHS). I've had the odd altercation with one or two nurses at my doctor's practice, particularly when I wanted the 'flu jab and mainly because they really don't know anything about Scleroderma. Another doctor rather pooh-poohed the fact that I'd had Carpal Tunnel Syndrome and swollen fingers and swore blind that it wasn't related to Scleroderma, to which I simply replied "Umm" and ignored her!! My own general practitioner is rather a star and always refers back to The Brompton with any queries, as does the local consultant who referred me to The Brompton in the first place (she doesn't have a large ego which I think does help, as she isn't afraid to admit that she is a little out of her depth with Scleroderma; having said that she was the only one able to answer a query I had regarding my auto antibodies, which even The Brompton couldn't answer. I told her I was very impressed!! )
It must very frustrating to be prescribed medications that you know aren't helping you; I do sympathise and can understand how infuriating it is to be treated in a patronising way by someone whom you feel isn't really listening to you and resents the fact that you are well informed about your illness. Thankfully my general practitioner never minds my trying to tell her how to do her job (I always try to tell her in the nicest possible way with lots of humour and I say "You can tell me to mind my own business if you like...haha!" ) As far as having too many doctors, Scleroderma is such a complex disease that affects so many different organs it's only right that you should have a specialist to treat each one and you shouldn't expect to be spoken to rudely or dismissively by any of them. I've often wished I was quickwitted enough to be able to think of a cutting retort at the time rather than ten minutes afterwards!! Amanda's suggestion that you complain in writing should you need to is good advice as then you can list your complaints logically and almost dispassionately and it will help you to sort things out in your own mind as well.
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Posted 13 January 2012 - 04:21 PM
Then again, she and I seem to get on very well and she is always happy to give me the whole story and explain why. She knows and accepts that I need to know why and how. When we finally move I will have to find somebody else which I am dreading. She has already said to me that she could suggest somebody but doesn't think I would get on with her!!! Which to me suggests that she doesn't either!!!!
It is all part of "the rich tapestry of life" - it is just that sometimes we fear that everything is going to go down the gurgler if somebody doesn't listen.
Posted 13 January 2012 - 08:15 PM
I'm sorry some of your doctors are giving you such a runaround.
I was going to try to give you such excellent advice on this subject, and then I thought, why don't I get the number for your therapist, instead? It sounds to me like your therapist is the one you should definitely keep, out of all your 'ologists!
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Posted 14 January 2012 - 09:41 PM
Sadly there are those doctors out there, but as noted, we also find the great ones, the wonderful ones, and the caring ones.
I had a hand specialist who beamed when I told him my scleroderma diagnosis, but it explained my problem.
And a rheumatologist who, when I questioned how to deal with skin problems said, that's what make up is for.
But the amazing ones are out there and, perhaps, through this site, we know how to find them.
And, reading the posts, we do.