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View Full Version : Father needs a good doctor in Arlington, TX



nunciate
06-20-2014, 12:27 AM
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
06-20-2014, 01:56 AM
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
06-20-2014, 02:01 AM
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
06-20-2014, 02:11 AM
oh. no treatment is a bad neglect of the docs :sad: untill someone with more info will come, check at the Vasculitis Foundation Vasculitis Foundation (http://www.vasculitisfoundation.org/)

renidrag
06-20-2014, 04:01 AM
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
06-20-2014, 05:51 AM
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
06-20-2014, 08:32 AM
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
06-20-2014, 10:10 AM
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
06-21-2014, 01:18 AM
Thanks all for the replies. It has been hard going. I am using the info I find on th Vasculitis Foundation (http://www.vasculitisfoundation.org/) 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
06-21-2014, 06:38 AM
So glad, nunciate, that you are being an advocate for your dad. :thumbsup: 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:thumbdn:. 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,:confused1: 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 :hug1:Bev

nunciate
06-21-2014, 07:03 AM
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
06-21-2014, 07:37 AM
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
06-21-2014, 07:40 AM
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
06-21-2014, 12:01 PM
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
06-21-2014, 01:58 PM
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
06-21-2014, 03:58 PM
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
06-21-2014, 04:10 PM
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
06-22-2014, 02:26 AM
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 (http://profiles.utsouthwestern.edu/profile/105493/david-minna.html)

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
06-22-2014, 01:44 PM
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
06-23-2014, 10:46 AM
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?

annekat
06-23-2014, 11:07 AM
Are the people at the hospital he is at aware that he has WG? They need to get him started on WG meds even if he is going to be moved. Thinking about the CC or Mayo is a good plan in the long run, but he is not going to get in there immediately and he needs immediate treatment for WG along with all the other stuff he is dealing with. So I hope you can get at least get him moved over to the recommended hospital; there isn't time to look into CC and Mayo right now, it seems to me. Someone else can give you an idea of the costs at those places, I imagine.

Debbie C
06-23-2014, 12:36 PM
The best thing to do like Anne mentioned is to get him the care he needs right now down there. The drs. at the other hosp may be able to call for a consult with the drs. at the other clinics. But it doesn't sound like your dad is in any shape to fly. They need to check out his heart before anything. Is he one dialysis everyday? Can u have an ambulance take him from that hosp. to the other in Dallas ? I think the Mayo clinic is alot closer than the Cleveland clinic making the cost less. It's hard to say how much it would cost,depends on how much the flight would be,how long he would be there. I go to the Cleveland clinic and just about all the motels give you a special rate if someone is at the clinic. But again hopefully you can get him to the other hosp. and they can get a handle on things. I'll pray all goes well.:hug2:

windchime
06-23-2014, 01:44 PM
I agree with everyone else. Your father needs to be stabilized before any travel can be undertaken. You are at the midpoint between Mayo in Minnesota and Phoenix. It's about the same distance to either. You are also at the mid point with the two Cleveland Clinic campuses in Ohio and Florida. They are all about 17-18 hours driving and of course less if flying.

As Debra said the hotels in the area around the campuses usually offer good rates. I'm going to Vanderbilt In Tn and got an excellent rate for a room. Typically and ideally he would only need to stay to see the docs, get set up on a treatment plan then go home to have the treatment with the center doc consulting with your local doc. Of course that is an ideal world.

Cost would be plane tickets, hotel, and food. You can sometimes find a hotel or extended stay that has a small kitchen. Saves on the food bill. If you find a hotel near the campus they may offer a shuttle to and from the campus. How old is your dad? With the need for a hip replacement it doesn't sound as if he will be traveling any time soon so as the others have said it's imperative to get the best local care available.Here are a couple of links I found for the DFW area that have vasculitis centers or docs:

Vasculitis - Dallas Regional Medical Center (http://www.dallasregionalmedicalcenter.com/health-education/90,P01735)

Specialists - Vasculitis - Dallas, TX | DocSpot (http://www.docspot.com/d/TX/dallas/specialty-interest/vasculitis.html)

Baylor Research Institute-Rheumatology (http://www.baylorhealth.edu/Research/InstitutesCenters/Rheumatology/Pages/default.aspx)

jmmilliorn
06-24-2014, 06:33 AM
I couldn't find a decent WG doc in the DFW metroplex. Had to go to Cleveland Clinic to get diagnosed and treated properly. They are great there. Except for the transportation, the cost is the same since my insurance pays the bills.

nunciate
06-27-2014, 11:16 PM
I am sorry to report that my dad passed away yesterday morning at 3:00am. After taking him into the hospital for hip problems they discovered he in fact needed another hip replacement. The doctor discovered a heart murmur which had him concerned so they performed an echo cardiogram. They found that dad's heart was only pumping at about 50% capacity and that he had some blockages. They then performed a heart catheter on Wednesday to get a look inside and found 95% blockage in 5 different places. They were planning to schedule a quadruple bypass yesterday sometime but he didn't even make it through the night. He had cardiac arrest around 3:00am. They were able to revive him briefly but his heart failed again and they were unable to get him back.

I just wanted to say thank you to all of you who tried to help me out here. Unfortunately we just didn't make it in time. The doctor thinks that the majority of my dads symptoms were related to very low blood flow which makes sense in hindsight. It really is a miracle he made it this long given the damage to his heart.

LisaT
06-27-2014, 11:24 PM
I'm so, so sorry for your loss. I am just reading this thread for the first time and don't even know yet how it all began. I just wanted to say that my thoughts and prayers are with you and your family at this difficult time. I hope that you will find some peace and comfort in the days and weeks ahead...

pberggren1
06-27-2014, 11:47 PM
I'm so sorry for your loss. I didn't realize your dad was this far advanced and so fast and severe.

LisaT
06-27-2014, 11:51 PM
Phil, do you think his heart trouble was caused by his WG/GPA? I know that it can cause heart problems but it could be a separate issue too, right? The reason I'm asking is that I know if it were my father, I'd want to know the cause, and whether the docs who refused to treat his underlying disease in time could have effected a different outcome.

pberggren1
06-27-2014, 11:59 PM
I have no idea. But I know that Wegs can affect the heart. I knew a fellow from here that died in 2010 from massive heart failure. The autopsy report said his heart was like a massive jelly like substance. Dr. Specks, his doctor, didn't think his death was caused by Wegs or that the heart thing was related to Wegs. But, who knows, maybe it was. Medicine can only explain maybe 1 or 2% at best of the human body, the rest is just guessing.

LisaT
06-28-2014, 12:05 AM
Which means it would be difficult to prove that timely treatment for the disease could have saved him...:sad:

Debbie C
06-28-2014, 01:05 AM
Nunciate, I am so sorry to hear of the loss of your father ( I also lost mine some time ago ) and I know the pain you are going through. My prayers are going out to you and your family and hope you can find some peace knowing he is no longer suffering and is in a better place than us.
I know this is not the time but I would find out if his heart condition was wg related and still not let that dr off the hook for not helping him all those years.
Take care and may God get you and your family through this time of suffering :sad:

annekat
06-28-2014, 01:49 AM
I am crushed by the news of the loss of your dad. I had really hoped for an outcome that could have saved him. It is so hard to know the answers and whether anyone in particular should be held responsible. I send out thoughts and prayers of peace and whatever comfort your family and friends can find in each other at this very difficult time. May he rest in peace, and may someone learn from this experience so they don't just write it off and will do better next time with another patient.

BookNut
06-28-2014, 02:10 AM
I have been away for a few days, but just had a chance to check my email and the forum. I am SO VERY sorry for your loss. I will pray for you and your family, and hope that you will all gather together to bring each other the emotional support you will all need. I am sure your father was comforted by knowing how very much you loved hime. It is at times like these that we wish we could be with you in more than just cyberspace.

windchime
06-28-2014, 05:38 AM
Nunciate I'm very sorry for the loss of your Dad. I'm sure he will be sorely missed by all the family. May you find peace in your prayers and through the support of others. Know your Dad is in a much better place and he is no longer suffering. It is only those left behind that suffer. Take time to grieve and don't let anyone rush you through it. My prayers are with you. :hug2:

Michael Bell
06-28-2014, 06:47 AM
So very sorry to hear of your loss. You will be in the thoughts and prayers of everyone on this site.
Mike

rebekah
06-28-2014, 12:03 PM
I am so sorry to hear about your loss. You and your family will be in my thoughts and prayers.

nunciate
06-28-2014, 12:21 PM
There were lots of blockages and those don't happen over night. They build over many years. While I would like to blame WG and it is likely the cause of some damage and definitely caused his kidney failure I have to assume this situation was unrelated. We are now looking into something more ominous. Apparently his kidney doctor was aware of the hear murmur for some time and told him that it was not a problem. The cardiac specialist said he should have seen someone for that years ago.

Alysia
06-28-2014, 09:14 PM
I am so sorry for your loss. it is heart breaking. chilling. shoking :crying:
he is now pain free and saves you from above. God bless his soul and give you and your famlily strength.
you can light an candle to his memory if you feel like on the weggies map.

renidrag
06-28-2014, 10:34 PM
So sorry to hear of your Dads passing. Thoughts and prayers with you and the family.
Dale

Beverly
07-04-2014, 08:41 AM
I have just now read about your dad and I am so sorry for your loss. Sometimes it is just so hard to comprehend how or why circumstances come as they do. Your family and your mom have our prayer support as you continue to walk through this time together. As Cindy stated, take plenty of time to grieve and be with each other.

Please receive all of our stretched out arms of love...love that no amount of miles can separate.

We want to continue our relationship with you, as much as you want.

God bless you