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| | From:  joyce5cats (Original Message) | Sent: 11/4/2008 9:08 PM |
I'd like to get in touch with somebody else in Missouri w/pkd experience. My husb & dtr both have it. Husb has had a transplant & dtr (13) was just diagnosed. No insurance for dtr so we're dealing with an added yuck for her. I need some help here. Not asking for money - yikes - just some direction. The dr we've seen at Childrens was initially very nice & seemed to have all the "right credentials" but since we left his office, it's like he's disappeared. I can't get him to answer any of the questions we've come up with post-visit. It feels like we're being left to fend for ourselves because of the no insurance thing. Anybody got any encouraging words? |
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hi Joyce and welcome to a great support group. I am not anywhere near Missouri so can't offer any help in finding a doctor but you might try contacting the PKD Foundation or your nearest hospital. I hope your daughter is doing well and not having any symptoms and that your husband's transplant is doing well. I know you have another post which may say where in Missouri you live because, compared to NJ at least, it is a fairly large state. I hope you will find a home and family with us. |
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| | | From: emju2 | Sent: 11/6/2008 4:41 AM |
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My nephrologists is originally from St. Louis. I believe is it Barnes? Any way he is now in Fayetteville Arkansas at the Fayetteville Diagnostic Clinic on Millsap Road. His name is Michael Moulton. If you Google him on the internet, maybe he can be of some assistance to you. I hope this helps. I have PKD and I'm on the waiting list at the Mayo Clinic in MN. He wanted me to go to St. Louis and during the start of the process my insurance covered them 100% now they only cover St. Louis at 80% and the Mayo Clinics at 100%. UAMS in Little Rock is only covered at 50%, which is definitely closer and easier for me to get there. Please keep in touch. I really don't communicate with a lot of people who have PKD. My dad had it, his sister, we think his father, 2 out of 3 of his children and 2 out of 3 of my aunts children have it. And it goes on and on. I've known since I was 5 I might have it, but I was definitely diagnosed when I was 20. That was 24 years ago and I'm only functioning at about 13%, but I'm not on dialysis, yet. I'm very close though. I have one daughter who is 12 1/2, but currently she shows no signs of having PKD, which I'm very thankful about.
Kelly Tucker
Administrative Secretary
Fulbright Institute of International Relations
Main 428
479/575-2006
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Thank you very much for all replies! I'm anxious to get in touch with Katee - thanks Kim. We tried signing dtr up for a trial in Denver, but she has a large cyst & if it ruptured during trial ... well, that wouldn't have worked. And Kelly - You're on "the list" ... I'm assuming that's the transplant list? What's your blood type? My husb was on list with Barnes but they were projecting a 9 yr wait. He got signed up with U of Wisc/Madison & about a year later had a transplant. (That was Mother's Day weekend 2007.) ESRD is an automatic qualifier w/Medicare so insurance hasn't been too big a problem for us. He'd been on dialysis for about six years before getting his transplant. My PKD dtr turned 13 in Sept. We're working on getting her ~6 inch cyst drained but the doctors are ... taking their time about it. I'm hoping their hesitation has nothing to do with our not having insurance on her, but I have to be realistic. Is there a way to send private messages on this board? I'd like to send my email address to you. I'm very new to this board/group/community stuff. (Gosh I feel old!) I've been involved with a migraine forum because of my own situation but that's about it. |
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