Doctor RANT!!

[Rose]

Earlier this year I consulted with a urologist because of frequent UTI"s. Following a cystoscopy he prescribed macrodantin as prophylactic treatment. I was concerned about this as my nephrologist who treated me when first diagnosed refused to put me on this drug. When I returned home that day I googled macrodantin and discovered that it should not be given to people with a GFR below 60...mine was around 50 at that time. I have been battling UTI"s since and trying to prevent them with cranberry tabs with some success. (Note: Macrodantin is not available anymore)

I decided recently to consult with a nephrologist, the main reason being the UTI's but also because of my CKD caused by WG. I have been fortunate (touch wood) that my CKD is stable but should a problem arise it would be a good idea to have an expert on my team who is aware of me.

Last week I had my first consultation with the nephrologist. As the UTI's is my immediate concern I started the interview with them. Soon though WG was mentioned and the UTI' was forgotton. At the doctors instigation I went through all my WG history. He found fault in a lot of the treatment protocols and disagreed with a lot of what had been done. eg. He said that oral cyclophosphamide is the only treatment of choice for WG to get it into remission and that IV should never have even been considered.
He then decided to evaluate my kidney function by ordering a 24 hour urine test and blood work plus an ANCA as I had mentioned that I thought I might be having a mild flare because of the sinus/vertigo/muscle problems I have been having. I actually did not have any complaint about my kidney function as test done a week before showed all was well.

Today I had my follow up appointment. He is very happy with my blood work (apart from cholesterol) and although the blood test showed stage 3 CKD the 24 hour urine test which apparently is more accurate showed stage 2 CKD. He told me my ANCA was negative (no surprise) and that upper respiratory tract symptoms did not mean a WG flare at any time. Wonder what my ENT would say to that?! He then goes on to tell me that my WG is well controlled and to get on with my life...in a manner that made me feel like a hypochondriac! Odd comment since we never did discuss my quality of life.

The main reason for visiting him was because I wanted his expert opinion on my frequent UTI;s What can I do to prevent them/prophylactic antibiotic/diet/.sugar/ HRT/cranberry/Dmannose/anything, any tips which would help prevent an infection damaging my already compromised kidneys as then I would be in big trouble. I never got any tips, only told to send a specimen away for culture the next time it happens.

Have I got this wrong? Is advising patients about this not part of his job. I never even got to chat to him about how this was having a very distressing impact on my life.

Arrogant and dogmatic are words that come to mind. I think to someone not familiar with WG he comes across as well informed but he is not. I know many of you travel many, many miles to consult with doctors at vasculitis cenrters and I am sure it is so worth it.

Now I have had my rant I fell much better. I still need a nephrologist, someone who will at least listen....my search continues. I will think about it next year!

[Sangye]

Rose, I'm so sorry he treated you like that. I've been to my share of arrogant doctors and boy is it awful.

I think you probably need a new urologist and a new nephrologist. Unless you're getting kidney infections, a urologist is the doctor to deal with UTI's. But as you said, you do need a good nephrologist to deal with the Wegs aspect.

I would recommend seeing a holistic doctor to help you with treating the UTIs'. There is a lot you can do without boosting your immune system, but it needs to be tailored to you. One thing you can start with is probiotics. Maintaining a healthy gut flora will help fight UTIs.

[Al]

Rose, you are up against two problems, one with the the fact that some doctors are good with patients and others not so good, and the other having to do with the evolution of medical care. Nowadays, it is all about the specialization. The urologist has his concerns; the nephrologist his, and they don't interact. It's treatment by committee, only the committee never meets. You need someone to view the larger picture, like, as Sangye says, a holistic doctor, or a really good internist who is, by definition, a generalist.

You have also hit on a pet peeve of mine: Doctors are trained to discuss "quality of life", by which I mean they take a class, or at least hear a lecture on the subject. But that does not mean they have any true sensitivity for what quality of life means for the patient. Indeed, how sensitive can they possibly be, considering the short time they are allowed to spend with you. Your typical clinician knows nothing about you except the numbers on the test results. What else, then, can they rely on but dogma? The arrogance comes with the territory: The doc knows more than you do (though perhaps not that much more!). Once in a while, you will find a specialist who is sensitive, and who takes your complete history and situation into account. But the dynamics of running a clinical business suggest that this would be highly unusual. So quality of life issues are up to you to bring to the table.

Good luck with this, and let us know how you fare!

Al

[Rose]

Thanks Sangye and Al for your valuable input.

I did enquire with his recptionist before I made the appointment if he treated recurring UTI's and was assured he did and infact had many patients with chronic UTI's. I thought he would be able to advise and guide me in all my kidney/urinary tract issues. But what you both say makes absolute sense though I think there would have been a better outcome had I only mentioned either the UTI or the CKD....not both at the same appointment. I did tell him that the CKD was stable and that it was not a problem at the moment. Even produced all my recent blood results. Apart from the ANCA and the 24 hr urine all the tests were done a week before. Still he did the blood tests again and ignored my problem with the UTI's!

OK I am going to start taking a good quality probiotic daily and consult a holistic practitoner. Should I consult a homeopath?

[marta]

Yuk, hate that feeling Rose. It's usually amplified by the fact that you're so flabbergasted by the conversation that you (I) end up sitting there with my mouth agape shocked into silence. Then I end up beating myself up after the appointment for not saying what I wanted to / should have said.

Well that's over now and I'm sure you're not going there again for a while. Chalk that one up to lessons learned (which clinics to never walk into again - I have a few of those that I've collected since my journey started). I find it's these moments though that poke us into action and finding the docs we're supposed to be with. So you never know, the perfect doc might be just around the corner for you.

I'm curious what the gang has to say about a homeopath. I just heard a great interview with a scientist and his opinion on homeopathic medicine. I wont jade the conversation though.

Yeah, today is over, tomorrow is on it's way. Only better.

[me2]

Rose, thank you for the nice doctor rant. Like many here and you, I have been there too. I'm sorry you have been subject to that kind of treatment and wish you the best in finding proper treatment.

I don't know enough to tell you whether you should have received oral or IV cyclophosphamide (Cytoxan) but I question him saying it shouldn't even have been considered. What pops into my mind is my own experience 30 some years ago of recieving oral Cytoxan and after more than a year of use developing hemoragic cystitis and having to stop taking it. In recent years I tried oral Cytoxan again and within three days I had the worst bladder pain of my life. It was agony.

After a few years of fiddeling with other treatments I discovered that people who got IV Cytoxan often were given Mesna to protect their bladder. I researched extensively and asked a lot of nurses if worked. I was told it worked very well. So , in great fear I recieved IV Cytoxan with Mesna. NO bladder pain. I did this protocol for several months and my bladder never hurt.

SO, my questions would be did you take Cytoxan without Mesna and is it perhaps contributing to your UTI problems?
Also, if it were me, I would be extremely cautious about using Cytoxan again without Mesna.

I did some quick research on Mesna and found a study in the Journal of Clinical Oncology where they were comparing irrigating the bladder to the use of Mesna along with high dose Cytoxan treament. One sentence at the end caught my eye

"However, the use of mesna was associated with significantly less discomfort and a lower incidence of UTIs."

I can see you are doing good homework. Keep it up.

[Sangye]

OK I am going to start taking a good quality probiotic daily and consult a holistic practitoner. Should I consult a homeopath?

I don't think a homeopath is the best choice. Homeopathy is incredible but I've been told by excellent homeopaths that it shouldn't be used with Weggies. I ignored that advice once and had a horrible experience!

A naturopathic doctor would be great. I assume they have them in South Africa. They have an ND degree. If not, certainly a chiropractor can help you.

[Ginger]

Errr.... ouch... that was rude! Atleast you can "fire"your nephrologist and check out someone else. I had a nephro that was kind of annoying and rude ( i don't exactly remember what she did tho) and unfortunately, i can't "fire"her, since i go to the alberta childrens. 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? But their is still that common desency thing. Oh well! Good job on your info though! I learned alot!

I am soooo not looking forward to switching to the sdult world of WG....

[vdub]

I think weggies are particularly atune with how they feel and take any ache or pain as a possible bad omen. I was worried I might be too hypochondriact-like and asked my PCP. He said not to worry, that it was a natural tendency to question any all potential issues when you have a disease like GPA. After two years, tho, I have settled down a bit and usually, try to self-analyze, do some research, and wait for a period of time before getting worried or contacting the doctor. In fact, I have an issue right now that kind of acts like peripheral nerve damage, but I have been sitting on it and doing nothing for about 2 months. Looks like it's not going away (actually, getting worse), so I have a nerve conductivity test set up.

I'm curious what the gang has to say about a homeopath.

As for homeopath, natureopath, or most any other alternative medicine, I am very skeptical. I had a 28 year old cousin, with a new wife, 1-year old child, and terrific future as software engineer with Microsoft, die from colon cancer because he was convinced that a natureopath could cure him. He had 4 really tough years before finally seeing a traditional doctor, but was too far gone by that time. He lived only another 3 months. Colon cancer is one of the easiest to cure, but you have to attack it with surgery, chemo, and radiation the old traditional way. I will always believe that he would still be with us if he had just gone to a traditional doctor.

As for wegs, I believe I'll put my trust into traditional medicine and traditionanl drugs. Now if traditional medicine were to fail, then that's another story altogeather and I would reach out to what ever promised some hope.

[pberggren1]

I sure know what it is like to have bad docs. My first 2 Wegs docs ignored me near the end when I was in bad shape and needed help and was left scrambling to find another one.

Fortunately now I have an absolute angel as a doc. 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.