Father needs a good doctor in Arlington, TX

[nunciate]

Made some headway today. Talked to a real nice nurse for a Dr in Dallas and they have treated WG. They don't take my dad's insurance but they did give me several reference phone numbers. I called and left messages with them.

Talked to my mom today. Dad had another Dr's appointment yesterday. That doctor told them they should stop self diagnosing on the internet because the symptoms he has could be just what they seem to be. Bad sinuses, unable to eat, pain in the joints, a lot of lost weight over the last 2 months and very weak. He suggested they get an appointment with a gastroenterologist for his stomach issues. This is the doctor who knows he has WG and those are all symptoms. I told them to stop seeing that doctor and I will find them someone.

I know I am no doctor and you shouldn't necessarily go off of the internet stuff but really? He has all the symptoms, has a test showing he has WG so I am not sure how you could come to any other conclusion. Even a complete idiot could figure that out.

I can tell you this, if my dad passes because this doctor wouldn't act responsibly I am going to definitely lawyer up...

[annekat]

Get him to the closest possible competent doctor who can treat him properly for WG. Going to one of the major centers mentioned above would be preferable, but he can always do that later. Right now, he needs a good shot of WG meds. Maybe he should even be in the hospital, where they can make sure he gets what he needs. Get whatever info you can from the people you talked to in Dallas and follow through on their suggestions. This is a terrible situation and that doc should lose his license to practice medicine. Sometimes the internet is the only place we can find out whether we are getting the right treatment. Without it, and without this forum, many of us would be totally in the dark. Good luck and bless you and your dad.

[annekat]

I might add that I have a terrible doctor whom I don't like, but even he was able to find out how to properly treat WG and has been doing it. Even a regular family doc could do it. Ultimately, you need a good rheumatologist and an ancillary team of specialists to oversee your dad, but in the meantime, he needs to start treatment ASAP. I cannot stress this enough.

[Debbie C]

I think with it being the weekend and you are unable to make anymore phone calls until Monday,I would get him to the hosp. get him admitted. I think I can speak for all of us that I can not stress the importance and urgancy your father get proper care right away. This disease can turn on a dime and it sounds like he is just getting worse. And do not even let that dr. see your father again. I would get an attorney now. My dr. was a little mad at me the other day because I asked him something and he said what did you do go to web md. They think they know it all and are mad when you go behind their backs to find out something for yourself.I figure I am paying them,there are alot more in the phone book and I can always go elsewhere.You might check with the dr. that gives his dialysis if he knows a specialist.

[annekat]

I can't speak for everyone, but my doc gives me so little time in his office and responds so poorly to my questions that I have no choice but to go the internet for information. Even the docs I like better, like my ENT and the eye doc I went to the other day, have such limited time to really discuss anything that I'm always going to walk out of there with questions unanswered. And it's hard to absorb what all they say in the short time they have to say it in. So where else am I going to go but the internet to try to get a handle on things? At least at the big vasculitis specialist centers, I've heard that the docs will actually spend some time with you; I should think so, after you have spent hours getting there and perhaps are putting your finances on the line to see them.

[drz]

I can't speak for everyone, but my doc gives me so little time in his office and responds so poorly to my questions that I have no choice but to go the internet for information. Even the docs I like better, like my ENT and the eye doc I went to the other day, have such limited time to really discuss anything that I'm always going to walk out of there with questions unanswered. And it's hard to absorb what all they say in the short time they have to say it in. So where else am I going to go but the internet to try to get a handle on things? At least at the big vasculitis specialist centers, I've heard that the docs will actually spend some time with you; I should think so, after you have spent hours getting there and perhaps are putting your finances on the line to see them.

That is sad. I hope you can find a new doctor soon. It helps to have a friend to take notes during your visits and to get a copy of their write up when you leave and to ask them to mail a copy of your record later. I feel lucky that all my doctors answer or at least discuss all my questions with me and my health care director when needed. I have had to replace a couple that didn't seem to have right attitude or enough competence for me to trust.

[annekat]

Some of my docs do take time to explain things and answer my questions. But they still only have so much time and at some point the appointment needs to be over so they can see the next patient. Plus they are not always the world's greatest explainers. I think taking notes would be very difficult, I have tried it and can barely read what I wrote or make sense of it. Maybe a recording device? I'm thinking the docs may use those themselves to help in writing their reports. Maybe it's in the pocket of their white lab coats. In any case, I don't they should make snide remarks about us using the internet to help us understand our condition and how it is treated. What would they do if they were the one sick with a rare disease they were unfamiliar with?

Anyway, I hope the dad this thread is about will end up with the best kind of docs, not only competent, but personable and able to explain things clearly. That is, after he at least finds someone to prescribe him the correct course of WG meds for his condition.

[rebekah]

I am so sorry to hear you're going through this with your dad. I hope one of the doctor's the nurse gave you are covered by insurance and have experience. I'm not familiar with any doctors in Texas, but I did a quick search before finishing reading this thread and seeing that post. I found a doctor at UT Southwestern Medical Center in Dallas, Dr. David Minna, and he lists Wegener's along with many other vasculitis and autoimmune diseases under clinical interests so he may be one to look into. I'm not sure how much experience he has, or the number of patients he sees with WG, but it might be worth contacting him to find out. Here is his info on the university website: David Minna, M.D. - Faculty Profile - UT Southwestern

Like others have already said, making a trip to Mayo or Cleveland Clinic would be good. The doctors there can consult with your regular doctor... or maybe you can try contacting Mayo or CC to see if they know of any doctors they can recommend in your area. There is a Vasculitis Foundation facebook group you could join and see if members there are in your area and can recommend a doctor.

I hope you can find a doctor that has experience treating wegs, so your dad can get the treatment he needs and start feeling better.

[marylz]

I am so sorry that so many of you have doctors that give you limited time. I feel very fortunate that all of my doctors give me all the time that I need and make sure that I understand what is going on and treat me as if I am an intelligent person who can help in making decisions about my care. I would hope that all doctors would be that way. Afterell it is our health that we're talking about.

[nunciate]

Well dad is in the hospital now. He had severe pain in his right hip and couldn't walk. We had to get an ambulance to pick him up because we couldn't move him without causing severe pain. He has osteoarthritis and has already had 1 hip replacement. They did some work and found he needs to have the other hip replaced. The last bit of cartridge finally gave way. He is still admitted and they are trying to get him some help. They found a heart murmur when he was admitted. Anyone know if that could be WG related? He has never had one before and has been to the doctor a lot over the last few years.

Anyway it looks like everyone is around here including the current hospital and my wife's best friend (a doctor) is recommending UT Southwestern Medical Center over in Dallas. So I am going to make some calls on Monday and see if I can get him moved over there or something.

I would love to get him to Mayo or the Cleveland clinic but that may be beyond our resources. My parents are retired but living off of pension and social security. So they don't' have a ton of cash. I can only imagine what the cost would be to get to either of those clinics and stay for the duration of the treatment. Maybe if the whole family pulls together. Anyone have any experience with that? Cost estimates?