Father needs a good doctor in Arlington, TX

[nunciate]

My father was diagnosed with WG about 4 years ago. At the time he had may symptoms including failing kidneys. After almost a year of misdiagnosing individual symptoms he was finally diagnosed with WG. Unfortunately by the time the got the diagnosis right he had already lost kidney function. He has been on dialysis ever since.

His current doctor seems to be treating the symptoms rather than the disease even though he is the one who diagnosed it. The doctor gives him medicine for his sinus issues and joint pain. My dad has been unable to eat well for months now and has lost a lot of weight. He feels sick after taking a few bites so the doctor gave him anti-nausea pills and ordered CT scans which show nothing. They say his blood work is fine. They want to do upper and lower GI's to see if there is anything wrong.

This all sounds completely wrong to me. He has WG so why aren't they treating that?

If anyone has a reference to a good doctor in the Dallas / Fort Worth area I would greatly appreciate it. My parents live half way between Dallas & Fort Worth in Arlington, TX. Somewhere close would be nice but any doctor would do as long as they know what they are doing with WG.

[Alysia]

welcome to the Forum. I am so sorry about your father, going through such tough times without correct treatment. I guess someone around here will soon come and recomand a doc. I love too far away....
what treatment is your father getting ?

[nunciate]

Currently he is getting no treatment that I am aware of. Just a couple of doctors trying to treat the various symptoms. Giving him hydrocodone for the pain and dialysis for the kidney failure. He rarely takes the pain meds though. They make him feel too tire. I think he is on some other medications but nothing that is specifically to treat WG. He is very weak and has trouble even getting into the shower. The doctor is going to get him some in home care.

[Alysia]

oh. no treatment is a bad neglect of the docs untill someone with more info will come, check at the Vasculitis Foundation Vasculitis Foundation

[renidrag]

Get someone soon. The only place that comes to mind is Cleveland Clinic in Ohio. Many on here go there. Please go to Vasculitis foundation and find someone as Alysia has said.
Dale

[Pete]

If either Cleveland Clinic or Mayo Clinic has a center in the Metroplex, I would take your Dad there. The docs at the local center can consult with specialists at "home base". Your Dad needs competent treatment yesterday. Please don't delay further.

[BookNut]

I ended up not having Wegeners, so I cannot advise. However, I would second everyone's urging to find another doctor. I also want to ask you to keep us updated. Thes folks are experts and full of good ideas!

[Debbie C]

Hi Nunciate,so sorry to hear your father is so ill,but like everyone is telling you he NEEDS a dr. that is familar with wegeners. I am surprised that his kidney dr. is not aware of this disease. He would be able to start him on a treatment plan. Even if he were to get on a high dose of prednison. If I were you, instead of wasting time looking for a dr. Take him to hosp. either in Dallas or Ft. Worth,they would be able to do the proper blood work and urine check and then they may be able to consult with an expert. Second thing I would do is get rid of that dr that has been treating him for nothing the last 4 years. He is definately not doing him any good. I would even go as far as report him to the Board of Medicine, by him not getting the right treatment in 4 years is just uncalled for.O.K. ,I'm done with my rant, but I feel bad for your dad and your whole family because this could have all been avoided. Good luck and keep us posted. How old is your Dad? Is he able to travel if needed ?

[nunciate]

Thanks all for the replies. It has been hard going. I am using the info I find on th Vasculitis Foundation site and cold calling various Rheumatology doctors trying to find some that treats WG. I found 1 that said they did but the lady was super rude when answering my questions and said they absolutely could not get him in until the middle of September. I am still calling around to see if I can find someone. Not very happy right now as my dad's condition is getting worst. I will likely ask my mom to take him to the hospital if he continues to get worse.

[Beverly]

So glad, nunciate, that you are being an advocate for your dad. If my husband had not been advocate for me, as well as my daughters, I don't know what shape I would be in today. Your dad may not be strong enough physically or emotionally, or be knowledgeable enough about WGs to do this on his own.
Please do not let any doc or other medical personnel intimidate you. There may be times when you have to say "no" or "this is what we want done"! You can be in charge as much as possible.
Your dad needs more than "home care", he needs proper care with correct medication. I am in agreement with others who have replied that a different doc is needed, one that knows what to do for wg and will start proper treatment right away. You did not mention prednisone or a chemo treatment which are vital. His symptoms are all too familiar to us. I live in w. Tx, 3 hrs east of El Paso, so cannot help with referring you to a doc in your area, but there are some on this forum who live in that area who can possibly give good referrals.
It will be best for your dad that someone always be with him as he visits with doc because dad may not remember things doc needs to know and then may not remember instructions from doc, due to WGs and Meds.
I am praying for you that you will be able to make decisions with wisdom and clarity, that you will not be overwhelmed and walk in peace knowing that your dad can receive good care. There are many here who will walk with you on this journey - you are not alone!
Hope this has made sense to you...kinda in a fog head right now. Keep us informed as much as you want or is possible.
Hugs from a new friend Bev