Doctor RANT!!

[vdub]

I had an appointment with him today and we talked for almost 2 hours straight. It was like I was never deaf at all. I understood over 99% of what he was saying and only had to ask him to repeat a couple of times.

That is super! You can't believe how totally happy I am for you! :-)

[Al]

Rose, not all MDs have a holistic ("big picture") perspective, though some do. Homeopaths are no more or less holistic, and tend to eschew the approaches that acknowledge the complexity if this disease. My advice is to find a great holistic specialist. (I know this sounds like an oxymoron, but this kind of doctor does exist!)

For what it's worth, I visit a naturopath regularly, not as my main provider for dealing with my ailment, but to get a additional, and more general perspective. Besides, while my main guy has to kick me out before I can go into full discussion mode, the ND will talk for a full hour. This is, in itself, therapeutic!

Al

[Rose]

I am feeling a bit better today and analyzing everything that was said I realize it was not me at fault but him. I was dealing with a doctor with a big ego and insecurities. He questioned everything even the kidney biopsy result. He said that pauci focal segmented glomerlonephritis with crescents was extremely aggressive and usually found in other kidney disease and is rare in WG. He asked who gave me the diagnosis of WG. I was left with my mouth gaping! Once I had found my voice I told him and also pointed out the multi system involvement which is typical of WG.

I started having UTI's about 3 years before diagnosis. I am pretty sure they are hormone related as they started in my mid fifties and I never had this problem before. HRT would help I am sure bit this is not an option with WG. I did receive Mensa with my IV cyclophosphamide and I have no problems with my initial treatment. From this forum and my research elsewhere I am confident I received first class treatment to get WG into drug induced remission and this did happen within 6 months.

Marta......I don't know how to do the "quotes" but your comment hit the nail on the head. That is exactly how I felt. I will probably never go back to him but should I need a nephrologist urgently before I find another I will go back as I am now registered there. I guess better him than no-one!

Only now do I realize what a great Rheumy I had for almost 2 years. She returned to her native Greece early this year. Only now do I realize what a great relationship I had with her and she had the holistic 'big picture" perspective you talk about, Al

[Rose]

Phil... I was haering impaired for a while, even totally deaf for a week or so and only then did I appreciate how improtant this sense is to us on many levels. It seemed at times the way people treated me is that not only did I lose my hearing but also my IQ. It was extremely isolating and depressing. I am so happy for you!!!

[Rose]

Phil... I was haering impaired for a while, even totally deaf for a week or so and only then did I appreciate how improtant this sense is to us on many levels. It seemed at times the way people treated me is that not only did I lose my hearing but also my IQ. It was extremely isolating and depressing. I am so happy for you!!!

[Sangye]

I believe that some doctors kind of try to shut themselves off from the pshycological part of their patients, which I COMPLETLY understand, becuase if you can't leave your work on your desk at the end of the day, how will you survive?

Patch Adams has devoted his life to disproving this. People who close off their hearts to others experience far worse suffering than those who don't. In my own practice I never closed my heart to my patients. I was there for them and with them through all the joys and tragedies of life.

[pberggren1]

My doc and I have become very good friends. I have had over 80 appointments with him in his office since I met him last year and many other meetings outside the office, mostly at the hospital. He said of all the Wegener's patients he has had over the years, and he has had over 1,000, I am the most engaging and knowledgable. I found this to be a very nice compliment. But I told him I felt I had no choice but to become my own best doctor and do lot of research. He asks about the Forum often and encourages me to help others on here. He is like you Sangye and says: GET TO A WEGS SPECIALIST NOW!!!!! I find he is the most understanding and compassionate doctor I have ever met. It makes me want to go see him often.

[Lightwarrior]

Patch Adams has devoted his life to disproving this. People who close off their hearts to others experience far worse suffering than those who don't. In my own practice I never closed my heart to my patients. I was there for them and with them through all the joys and tragedies of life.

As an ICU nurse I believe that closing yourself off is what causes burnout. You must allow yourself to be there with the patient and family. It is a gift.

[Al]

Marta......I don't know how to do the "quotes" but your comment hit the nail on the head. That is exactly how I felt. I will probably never go back to him but should I need a nephrologist urgently before I find another I will go back as I am now registered there. I guess better him than no-one!....Only now do I realize what a great Rheumy I had for almost 2 years. She returned to her native Greece early this year. Only now do I realize what a great relationship I had with her and she had the holistic 'big picture" perspective you talk about, Al

(Rose--you can hit the "Reply with Quotes" button. Optionally, you can erase what you don't need to quote, like I just did, by deleting any selected text, except the bracketed stuff at the beginning and the end.)

I forgot to say this about having a relationship with the naturopath: Most MDs are reluctant to talk about nutrition except in the most general way possible. They prefer to outsource that discussion to yet another specialist, the nutritionist. My experience with "nutritionists" is not very positive. They, too, seem reluctant to get into the real nitty-gritty of how to read labels, how to prepare food, and so on. NDs, however, are by proclivity and training, generally pretty good with this information. Mine, for instance, also loves cooking,. We'll share recipes and information on how to spice up the stew without relying on salt, but avoiding the herbs that might stress the kidneys. My nephrologist won't do that unless I beat him up. But I don't think he ever cooks his own meals either.

Al

[Rose]

We'll share recipes and information on how to spice up the stew without relying on salt, but avoiding the herbs that might stress the kidneys. My nephrologist won't do that unless I beat him up. But I don't think he ever cooks his own meals either.
Al

(I haven't got this right. Will try and try again!)

This made me laugh! Yes...maybe had I instigated that conversation I would have ended up in some mental health facility. He was already looking at me oddly as all the blood results were comimg back OK.

I dont know what happened there. This was an appointment made some 6 weeks earlier just with the intention to get a nephrologist onto my team. A few doctors had prescribed drugs which should not be given to patients with compromised kidneys. I am aware that maybe there is no other choice, rather a bad side effect than a kidney infection for example. Maybe another drug could be used. Maybe there was a good brand of cranbery supplements out there that he had found very effective in his experience as a nephrologist in preventing Uti Decided I needed to consult an expert!

Also at one point my creatinine was increasing and the rhumy was getting very concerned. More frequent blood test were ordered which was a lot of expense to me and my quality of life was badly affected as I was experiencing severe muscle pain which was interfering with my mobility. It took 3 months for the rheumy to realize that it was simvastatin causing all the problems. I am sure a nephrologist would have picked that up sooner.

Never got to chat about any of that, really. He got so caught up with my WG and ordered all these unnecessary blood test...unnecessary because most were done the week before and I had no current complaints concerning CKD. Ever come away from a doctor's appointment thinking that was a complete waste of time and money!!!!...and your self esteem in your boots!!!!