New cardiologist: Hello, I met with a... - Hughes Syndrome A...

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New cardiologist

orygun66 profile image
18 Replies

Hello,

I met with a new cardiologist today. I was talking about Dr. Schofield and having seen her before and he told me she had a new concierge practice. It shocked me. I knew she was going to be cash only but when the name concierge was put on it, it hit me a lot harder what the implications were and how it excludes those who cannot pay $600/hour. Anyway, I finally found a rheumatologist to go see next month. I am hoping he will be helpful though I imagine he won't have the knowledge Dr Schofield has. But that chapter is over in my life. Time for a new doctor. I might even move back to Oregon at some point. There could be an APS doctor there or in Seattle.

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orygun66 profile image
orygun66
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18 Replies
Tofino5 profile image
Tofino5

Hi Orygun66, don’t forget that while you have to pay up front, you can then submit a claim to whatever insurance you have and get reimbursed whatever they will pay. You need to get a “super bill”, which is a detailed bill that you submit to the insurance company, and which any doctor office will give you.

My insurance is medicare and my private part D insurance. That’s what I’ll be doing. I don’t have any idea how much they’ll reimburse, I just hope it will be fair.

KellyInTexas profile image
KellyInTexasAdministrator

Seeing her is just the first step...

( my husband is dragging me there on oct 9th. I’m feeling discouraged about it... not because of her,but because my other treating doctors here in Texas have told me they will not support her plans if they involve IVIG or masc cell .)

* they tell me IVIG is a concern because it can trigger clotting- especially smaller , systemic clotting. ( IVIG and dysautonomia is a specialization of hers. She is a custom tailored doctor for me in particular.)

* when I explained Mast cell stabilizers for this- and indeed the whole concept of MCAS - they were very leery. (?had never heard of it- and suspected it if being the new trendy buzz treatment du jour that would prove to be snake oil in the end ). Perhaps. Perhaps IVIG will not prove useful for me in particular, but I do think

I was accused of “ Doctor shopping” and told I needed to “ settle down.” Yes . My hematologist under whose watch I’ve now clotted with 3 arm clots ( thankfully very unlikely to embolise in arms) has told me “ I need to just settle down.”

I was told by dr Hugh’s to see dr Schofield long before I ever met this Hematologist.

So not only is the cost difficult, many of us afind our other doctors will not implement her expertise. ( and she can’t prescribe across state lines- so she has a rule: your docs must call her. She advises them on what to order / gives detailed protocols.)

So I’m very leery of going. And it has nothing to do with her at all. It’s how my other doctors respond to me about it.

orygun66 profile image
orygun66 in reply to KellyInTexas

Oh wow KellyinTexas. I didn't think about that being an obstacle. Sounds like a huge obstacle for you. I'm so sorry to hear that. I do think highly of her and am so sad to not be able to see her now. Though very glad the claim can be submitted to insurance. But still cost prohibitive for me. I wish health care was in a different state of affairs in this country. Such that a doctor didn't feel the need to pursue concierge medicine. I suppose there would always be differences in treatment preferences and I do expect her to have the best latest ideas. Maybe with your persistence your doctors will come around. And after hearing her viewpoint on things. I hope it works out for you.

KellyInTexas profile image
KellyInTexasAdministrator in reply to orygun66

It’s extremely cost prohibitive...I’m hoping to get reimbursed to some extent. But if I can work better hours/ better quality hours I’m hoping to make it up on the flip side. Here’s hoping...

have you gone to her web site? New one? Embedded in that is “ APS “ clip on area. Embedded once again is link to a Vimeo video from dysautonomia international. She is a speaker .

There are other videos you will see ... POTS, etc. maybe you can take to your doctors if they are more open minded? That are contracted with your insurance?

orygun66 profile image
orygun66 in reply to KellyInTexas

I only briefly looked at her new website. I'll check out that information. That is a great idea. Thanks!

Wittycjt profile image
Wittycjt in reply to orygun66

Does she have her own website now? Is it Dr Schofield’s patients page? Is there a different one?

orygun66 profile image
orygun66 in reply to Wittycjt

centerformultisystemdisease...

Worse than I realized. $2000 for new consultation and $1500 for follow-up. I am in deep grief. She was all I had and now.. personally I find this unethical. I realized even if I had the money I wouldn't see her anymore because it breaks my personal ethics. Not just her but any concierge physician. I'll find someone else who serves the average person.

Patti

Wittycjt profile image
Wittycjt in reply to orygun66

Just saw this, i have it already, thanks for your response

TaraRae profile image
TaraRae

NOOO!! I really thought she'd help me! Well, Medicaid forced me to get a new pcp, I found one in Longmont, CO and she's an internal PA. At least she read ALL of my history, found out no one will manage my pain. As I'm classified as terminally ill she said she was gonna use that, with the help of another UCH Dr, to keep my pain management the same. I too found a new rheumatologist but in Ft. Collins. Honestly, I'd like ONE DR to help me find out the root cause of the devastation going on in my body. I'm tired of just treating symptoms. I KNOW that something is causing this, I can't figure it out myself. Sheesh, I can't eat ANYTHING but rice! (Sometimes I can't even handle that). I need to find a new Endo Dr. If you know of a good one in the Denver/Ft. Collins/Longmont area I'd appreciate any feed back. Super grateful for finding my new PCP, super grateful Kaiser Permanente gave me a 3 month extension as Medicaid NEVERY TOLD ME THEY WERE DROPPING KAISER!! I had literally 10 days of advance notice to find a new PCP,pain management, ect... I will miss my Dr at Kaiser. She's been with me for so long, I can just call her and tell her what's wrong and most of the time she doesn't have to see me. I love my old PCP,I have the best relationship with her as I think ALL people should have with the "coach of your Healthcare team"! TY for the sad news on Schofeild.

orygun66 profile image
orygun66 in reply to TaraRae

Yes I know TaraRae. It's devastating. She is a great help to so many people. I don't want to have hard feelings on the matter but part of me does. I have this life philosophy that when a person has a gift they should share that gift with as many people as possible. That being said, I don't know her financial situation so I don't want to judge her decision. I am just still grieving the loss of her guidance because she helped me so much. She was as integral to my healthcare team as my amazing PCP. Sorry to hear about the loss of yours TaraRae. That has got to be so hard. And such little notice to find a new one! I wish you well on finding health. As good as rice is it does not belong as the main course all the time. I understand where you are in seeking answers and expect you will get one eventually. It took nearly 10 years to get my answer but I got one. Hang in there!

TaraRae profile image
TaraRae

Are you in Colorado? I'm in Loveland and now use almost all UCH Dr's. I'm glad you got a diagnosis. I know you can relate when I say to people "if I was told what I have that is causing the damage to my body, even if the answer came back with a zero cure rate, no life expectancy of a year. If I just got the answer to what is killing me, I'd be 100% ok with the prognosis." The not knowing, the "you don't look that sick", the FACT that some Dr's think I'm a hypochondriac and drug seeker, those are so hard to deal with. I will miss my PCP she knows I'm not a drug seeker and said she thought it would be easier to fix me if I were a hypochondriac!! Trying hard to stay positive, trying VERY HARD! TY for understanding. Life is hard living in the unknown, feeling like you have to validate yourself to everyone. TY. You give me hope!

orygun66 profile image
orygun66 in reply to TaraRae

Was there not another reply from me to TaraRae? Saying I live in Lakewood? I don't see the whole long message on here

orygun66 profile image
orygun66 in reply to TaraRae

Hi TaraRae. I dont know what happened to the other long message I posted but I am glad you are hopeful. We should stay in touch especially being so close. Take care

TaraRae profile image
TaraRae in reply to orygun66

I'd love to stay in touch. Lakewood is very close to my Daughter's townhouse. She's off of Tennyson and 41st., right across the street from Cease Chavez park. I'd love to have a cup of coffee, tea, whatever and just talk with you. If you like that idea let me know. We all need someone that "gets it". Just let me know. Have a great day!

orygun66 profile image
orygun66 in reply to TaraRae

Great, I'll send you a message.

MaryF profile image
MaryFAdministrator

HI, of course there is word of mouth on here but I also enclose our charity website which contains some doctors in the USA: ghic.world/ MaryF

Hughes-Comrade profile image
Hughes-Comrade

Dr Tom DeLoughery @OHSU 503-494-6594 APS Specialist Portland, Oregon.

orygun66 profile image
orygun66 in reply to Hughes-Comrade

I just found him online thank you!! I wrote to him. We were already considering moving to Portland.

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