PDA

View Full Version : Doctor RANT!!



Rose
11-02-2011, 03:23 AM
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!http://www.wegeners-granulomatosis.com/forum/images/icons/icon9.gif

Sangye
11-02-2011, 03:34 AM
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
11-02-2011, 05:22 AM
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
11-02-2011, 07:39 AM
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
11-02-2011, 10:23 AM
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
11-02-2011, 01:26 PM
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
11-02-2011, 01:46 PM
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
11-02-2011, 01:51 PM
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
11-02-2011, 03:21 PM
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
11-02-2011, 03:28 PM
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.

vdub
11-02-2011, 04:18 PM
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
11-02-2011, 05:30 PM
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
11-02-2011, 09:28 PM
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
11-02-2011, 10:01 PM
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!!!http://www.wegeners-granulomatosis.com/forum/images/icons/icon7.gif

Rose
11-02-2011, 10:09 PM
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!!!http://www.wegeners-granulomatosis.com/forum/images/icons/icon7.gif

Sangye
11-03-2011, 01:52 AM
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
11-03-2011, 04:46 AM
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
11-04-2011, 11:11 AM
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
11-04-2011, 11:35 AM
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
11-04-2011, 07:29 PM
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!!!!

Al
11-05-2011, 04:21 AM
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!!!!

Yes, Rose--I think we all have. After being Johnny Meek about it for a while, I decided that, since I am the doctor's employer, I should do as any good boss: Say calmly but directly, "I am disappointed. I don't think we have dealt with the problem. I would like you to try harder." True, most doctors are not used to hearing that line and don't know how to react, but, really, there is only one way to react properly: "I will do my best." Only thing is, then you have to be able to define the problem. That could be as simple as, "if the tests don't tell why I hurt, then they are the wrong tests." In fact, it took Drac (my blood-taking nephro) three sets of tests to nail my ailment. To his credit, he did keep going after it until it was found, at which time I felt vindicated; if still sick as a dog, I at least had my self-esteem, and my boots were ready for some kickin'!

Al

pberggren1
11-06-2011, 05:59 PM
I have the best Wegs doc now and many other good docs so I have not had to rant or put on in place for a while. The last 2 just dumped me, so that was fairly easy.

pberggren1
11-06-2011, 06:00 PM
And being Batman helps as well because most people are intimidated so they don't tend to piss me off.......lol

Trudy
11-09-2011, 08:48 AM
Yes, Rose--I think we all have. After being Johnny Meek about it for a while, I decided that, since I am the doctor's employer, I should do as any good boss: Say calmly but directly, "I am disappointed. I don't think we have dealt with the problem. I would like you to try harder."
Al

The first rheumologist (well known in my area) I went to said he wanted to retest my blood work by sending it to Mayo Clinic and prescribed me medication. After leaving I realized the medication was not safe for my kidneys and didn't fill it. When I went for a follow up he yelled at me for not taking the med (very high dose Motrin) and said my results were normal. When I asked for a copy he replied I didn't need it, as he just told me. I demanded a copy and he said get it on the way out and come back in six mths if you want. When I got them to give me a copy, it was from a rinky-dink local lab that had no values on the report..just positive or negative. Of course I never went back. Lesson learned - always investigate everything and fire when needed.

Al
11-09-2011, 09:12 AM
The first rheumologist (well known in my area) I went to said he wanted to retest my blood work by sending it to Mayo Clinic and prescribed me medication. After leaving I realized the medication was not safe for my kidneys and didn't fill it. When I went for a follow up he yelled at me for not taking the med (very high dose Motrin) and said my results were normal. When I asked for a copy he replied I didn't need it, as he just told me. I demanded a copy and he said get it on the way out and come back in six mths if you want. When I got them to give me a copy, it was from a rinky-dink local lab that had no values on the report..just positive or negative. Of course I never went back. Lesson learned - always investigate everything and fire when needed.

Good for you, Trudy. It's worth noting that in most areas, doctors must, by law, provide copies of lab reports to patients. As for reputation, John Wilkes Booth had one too, though I personally wouldn't trust him as a theater critic.

Al

Chris G
11-09-2011, 09:18 AM
And being Batman helps as well because most people are intimidated so they don't tend to piss me off.......lol

LOL Phil!:w00t:

Rose
11-29-2011, 11:43 PM
Yes, Rose--I think we all have. After being Johnny Meek about it for a while, I decided that, since I am the doctor's employer, I should do as any good boss: Say calmly but directly, "I am disappointed. I don't think we have dealt with the problem.! Al

Just returned from an appointment with, I thought, my soon to be ex Rheumatologist but I took your advice Al and pointed out to him a few things which I was unhappy about concerning the handling (or lack of) my recent flare.....the main problem that he never returned my calls .(seems there was a communication problem between him and his receptionist) He apologized profusely, proceeded to tell me what I must do the next time I have a problem and he promised to contact me that same day. He was very concerned about the flare, confirmed that it most certainly was a relapse, chatted about what he will do should it happen again and I left there thinking that I really am in good hands. So, Ill stick with him and after this experience I have confidence to no longer be a Mrs Meek and speak up in the future should I feel dissatisfied.

Sangye
11-30-2011, 01:30 AM
Good for you, Rose!! I applaud your courage. :thumbsup:

Dirty Don
11-30-2011, 04:12 AM
Congrats Rose, takes guts and fortitude to do the right thing for your self sometimes! You are on the right track now, and may have well opened a new world for your doc too! Hehe! I've found that IF I initiate the docs will respond, but they seem to be taking the tack that they need to see me react and explain and question...then they respond, so far so good! sheesh!

Rose
11-30-2011, 04:52 AM
Congrats Rose, takes guts and fortitude to do the right thing for your self sometimes! You are on the right track now, and may have well opened a new world for your doc too!!

Just said that more or less to my husband. I feel it is the beginning of s new relationship. He even started calling me by my first name!!

delorisdoe
11-30-2011, 05:31 AM
who your husband??? how does he normaly call you?

Al
11-30-2011, 05:37 AM
Just said that more or less to my husband. I feel it is the beginning of s new relationship. He even started calling me by my first name!!

(Hmmm....If my wife calls me by my first name, I know the ensuing discussion is to be about some subject I want no part of!)

We're all proud of you, Rose! Empowering oneself is the proper way to deal with employees (like the doctor) and husbands....It is very therapeutic.

Al

Al
11-30-2011, 05:38 AM
who your husband??? how does he normaly call you?

(We know what Leigh calls her husband....)

Rose
11-30-2011, 06:07 AM
who your husband??? how does he normaly call you?


That made me laugh. Meant the doctor.

Dryhill
11-30-2011, 10:06 AM
[QUOTE=Rose;50709]Just returned from an appointment with, I thought, my soon to be ex Rheumatologist but I took your advice Al and pointed out to him a few things which I was unhappy about concerning the handling (or lack of) my recent flare.....QUOTE]

I read about the problems some of you have with your doctors and think how fortunate I am. Dr. Makadsi keeps me totally informed of what is going on and is planned for me and expects me to do the same about any problems/pains I have. If our paths happen to cross on my frequent hopsital trips Dr. M always stops and asks how I am and he uses my first name. Not bad for a doctor who is working in at least three hospitals

mishb
03-06-2012, 09:30 AM
I had my rheumatology appointment yesterday and my normal lady doesn't appear to be there. Maybe she is on holidays or maybe she has been rotated .... I hope not

I saw Mr. Non Personality from Jerkville in the land of Jerk. Yep that bad, and he had two poor trainee 2nd years with him.

First sentence of the appointment - Sit down we don't have time.
Second sentence - How old are you and do you still have your periods. If so, it's a fact that you wont for ever and I'm telling you this because of the risk of Osteoporosis and we will then need to do another bone density scan.

Okay, jerk I'm thinking.

However, after this he tells me something that actually floored me.
He said, Have you been referred to a kidney specialist? .......ha,no what for? I didn't think I needed one.
He said, it shows on your chart that you were in hospital last year for 4 days for tests which also involved a 24hr urine sample. Did they tell you wh?y .... yes, they said there was a trace of blood and protein and they wanted to rule out any kidney issues.
Did they give you the results of the sample? ........they just said it was fine and nothing to worry about.

He said that they have been keeping an eye on my blood tests and my UA's because there has been slight kidney involvement from day one and it appears that they didn't want to tell me about it, so as to avoid any unneccessary stress, and that if things got worse they would then become pro-active in treating it.
The reason he asked if I have seen a kidney specialist is because my December and also my February blood and urine tests show NO sign of any kidney issues whatsoever. The results are all within normal range.
We can only put it down to the increase in MTX from November. All other bloods were still outside normal range though. Oh well, take the good with the bad.

Even though this is excellent news to hear, can they actually hold that information from me in the first place?

He was still a jerk right to the very end, so much so, that one of the young trainees walked out with me and apologised and also said, can I ask you a question, I presume by all of that, that you have some type of vasculitis, am I correct, can you tell me what type? poor guy.

I think after all of that, maybe they were right to keep it from me ........ if it was only slight involvement...... because I did find myself stressing slightly about it last night, all of the what ifs and why fors and I guess if I had of known right from the beginning, it would of been on my mind daily.

I never did get to ask about my proposed holidays :sad:

pberggren1
03-06-2012, 10:16 AM
Michelle, are you serious? Did this actually happen?

I am floored to say the least.

My doc calls me if anything is slightly out of wack on the blood and urine. I think it is time you start getting copies of everything.

I can't believe the resident did not know what type of vasculitis you have. That is just insane. This must be a very poor institution or hospital you go to.

mishb
03-06-2012, 11:02 AM
Yep seriously,

Its not easy to get copies of paperwork from our hospitals (it takes letters and money) but very easy to get it from our GP's, however the hospitals don't always copy the GP's in.
I will speak to my GP this week and see what she says about it. In a way (and a big way) I am now glad I didn't know but will probably worry with every other test they do as to whether it has come back or not and/or whether they are going to tell me. At least now, I know to ask them about it each time.

To be fair to the poor little residents, they had no idea. I think they were just as stunned as I was by mr non sensitive.

Normally, because it's a teaching hospital, I get introduced to the trainees and then they are told what I am there for and they are told to take notes and ask some questions if need be. And they have quite a few times I have had them in with me in either ENT or Rheumatology.
This time, nothing, they weren't introduced, weren't told my condition and weren't given me file to look at.........they just looked like two young men sitting there with glazed looks on their faces.
I think it was just mr non sensitive's way.

Al
03-06-2012, 01:27 PM
Maybe, Michelle, he was teaching the residents how not to do "bedside manner"--you think?

It stuns and riles me that any doc would decide, without your input, what you can and cannot deal with. This is truly fishy. Can you make it a point to never leave an appointment without copies of lab work? I've got my people trained to do this automatically. (Hey, I own that information!) It seems to me a worthy crusade to teach doctors how to doctor.

Al

mishb
03-06-2012, 01:59 PM
Apparently he is one of the best in Melbourne and has clinics outside of the hospital.

Whenever I see my GP I get copies of anything that has been done but it is different for the hospital. They operate from a 'dumb' terminal which is connected to their mainframe somewhere within the building or possibly outside of the building. They don't have access to printers or anything and everything is handwritten (notes, scripts etc) and any referrals are done by a handwritten request to Admin and then it is typed up and mailed out. So even if they wanted too, they wouldn't be able to give me copies.

You have to send a written request to medical library (or something like that) to actually get them.
I might do that in the next few months though, so I have something with me for whenever I travel over to see your vast Country.

Al
03-06-2012, 02:09 PM
This seems really goofy to me, Michelle. In the first place, you should, as I said earlier, own the information about your body. Moreover, just on a practical basis, every floor on the hospital needs to have a local printer--all the workers on the floor, including doctors, need instant access to lab results and such, without waiting for the server to cooperate. I don't understand how this works....

Al

pberggren1
03-06-2012, 03:49 PM
If Batman had been there Mr. non sensitive would have quickly become Mr. sensitive.:wink1:

mishb
03-06-2012, 05:10 PM
If Batman had been there Mr. non sensitive would have quickly become Mr. sensitive.:wink1:

Thanks Phil, I wish Batman was there



This seems really goofy to me, Michelle. In the first place, you should, as I said earlier, own the information about your body. Moreover, just on a practical basis, every floor on the hospital needs to have a local printer--all the workers on the floor, including doctors, need instant access to lab results and such, without waiting for the server to cooperate. I don't understand how this works....

Al

Some of our older teaching hospitals are still a bit out dated Al, but never fear, I will send my letter off and get the printouts. It will be interesting to see whats actually in there.

Our hospitals are always trying to save costs wherever they can and at this very moment we have nurses on strike and operating theatres closed due to the nurses strike.

Sangye
03-07-2012, 02:43 AM
Michelle, that is just horrid treatment. I gather he's not your usual rheumy?

Doctors can withhold info about test results but they shouldn't. Not only is it unethical, but it can also be dangerous to you. It isn't their job to decide if you're able to "handle" bad news. It's their job to make sure you know what is going on with your body. If you can't easily get copies of your test results each time, then at each appointment tell them you want to review the results with them. ALL the results.

Marci
04-02-2013, 06:26 PM
Can't sleep so thought this was as good as time as any to do my "Doctor Rant". My local ENT was so on the ball about getting me the correct dx and he thought he was sending me to the best doctor for treatment. At the time, I went to this second doctor my nasal area was the only area I was having problems so that is why my local doctor decided to send me to an ENT at the university. He actually talked directly to him and was able to get me in right away. I think this doctor "talked big" to my doctor and told him he had done research on WG, so I was pleased to be going to see him the day after I was given my dx. I was all ready for a prescription of prednisone and sone of the chemo drugs I had read about but I was surprised and pleased at the time that this doctor was taking a different approach (big mistake). This is what he had me doing. I was to put a double strength antibiotic onitment up my nose once a day for the rest of my life and come back to see him in two months. I thought "Wow" no suppresion drugs. Onitment wasn't really doing much and then the joint pain and stiffness started and from then on I knew I had a problem. When I called about this I know they thought I had the flu. Put me on a pred dose pack (pain went away right away.....for 6 days) and more oral antibioctics. Told them the pred took the pain away but he would not prescribe anymore. Finally requested an appt. but was going to have to wait almost two weeks for that. Finally couldn't stand the pain any longer and made hubby call to see if could get a script for pred and that's when they told me I needed to go back to my PCP to be reevaluated. Couldn't dump this guy fast enough. I wasted one whole month for nothing but a Large office visit bill. My PCP put me on pred and I finally got smart and listened to this forum and contacted the Cleveland Clinic. I can't believe a university doctor who read my path and surgery reports and knew I had WG would still go with the treatment plan he did. I felt sorry for my local ENT because he really thought this doctor was top notch. On paper he looked great and he certainly talked a good line. Well, I feel better now that I have my "rant" done.

mishb
04-02-2013, 07:55 PM
Well done Marci.........with dumping that doctor.........and with the rant :thumbsup:

I am so glad you contacted Cleveland Clinic.

A couple of weeks ago I saw a GP that I hadn't seen since 2009. At the time (in 2009) he looked at my blood test results and said......"I don't think you actually have Rheumatoid Arthritis"
When I saw him the other week he called me into his office straight away and said he had been reading my file.
He said that I should never have to wait in the waiting room with other sick people and should be taken in straight away.
He also just kept staring at me and shaking his head. Eventually he said, I am so sorry, I had no idea that you had Wegeners.
- I only went to see him to get my blood pressure tablets......and my normal GP wasn't in.
He appeared so sorry and so upset that I tried to make a joke of him telling me that he didn't think I had RA - all those years ago.
I said ....."I know you said that you didn't think I had RA but the least you could have done was tell me I had WG"
He did laugh, for a second, and his reply was ...."in a million years, I would never have guessed at a diagnosis of WG"

It just goes to show, there really is not enough awareness out there and they will always take a different route before the "rare one".
Luckily we do have Cleveland Clinics and Mayo Clinics and the others with WG specialists and we have all (or mostly) found someone that now knows what they are doing.

drz
04-02-2013, 10:58 PM
It just goes to show, there really is not enough awareness out there and they will always take a different route before the "rare one".
Luckily we do have Cleveland Clinics and Mayo Clinics and the others with WG specialists and we have all (or mostly) found someone that now knows what they are doing.

How many others on here have been using Dr Ulrich Specks at Mayo? I was disappointed recently when I called in about getting my regular follow up appointment to learn that he has taken on some different duties and apparently has few openings now to see old Weggie patients. I really liked seeing him and now have some anxiety as I wonder who will be seeing those of us enrolled in their follow up research study on long term treatment of Wegs. Change is tough anytime when you finally find a doctor you like and trust, but for us Weggies it can also be rather precarious.

Psyborg
04-02-2013, 11:46 PM
That really stinks. Does he have any suggested protégés.

Dirty Don
04-03-2013, 02:24 AM
I'm in a similar postion drz as my rheumy is retiring...sighs...she is the first person who I've trusted with this disease. I'll miss her guidance. But, as she pointed out, Mayo is already searching for her replacement. In my case, I still retain my pulmy who is very knowledgeable and experienced with AIs, and a PA and NP will take over my monitoring until a replacement is hired, and there is another rheumy on staff who's main interests are vasculitis and WG diseases. It is disconcerting - I've already chatted with my rheumy about it...she says not to worry...Mayo is responsible and thorough and will replace her with someone who knows the disease...hopefully...note the hesitation...sighs again. We'll be fine drz...just breathe a little deeper! LOL!

Pete
04-03-2013, 02:57 AM
They can't have Dr Villa Forte from Cleveland Clinic. Several of us want to keep her!!!:love:

Dirty Don
04-03-2013, 03:11 AM
Hmmmm, interesting idea Pete...hadn't thought of that...anyone into kidnapping?!?!?! Er, DOC napping! LOL!