Father needs a good doctor in Arlington, TX

[annekat]

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]

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.

[windchime]

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

Specialists - Vasculitis - Dallas, TX | DocSpot

Baylor Research Institute-Rheumatology

[jmmilliorn]

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]

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]

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]

I'm so sorry for your loss. I didn't realize your dad was this far advanced and so fast and severe.

[LisaT]

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]

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]

Which means it would be difficult to prove that timely treatment for the disease could have saved him...