Re: My visit with the doctor

[Guest guest]

Hi Beverley,I'm sorry you had a tough day yesterday. The waiting for this and waiting for that drives us crazy. Knowing you have a fatal disease is all consuming for us, but not for others. All we want is to be able to survive as long as possible. Being the independent people we are, if we could take care of it on our own, we would! I've spent most of my life, doing things for myself because I just want it done and done right. But here we are at the mercy of doctors who don't really know how to help us either. My Pulmo doc said he would put in a referral for me to be seen at the UWMC (that was over a week ago) and I haven't heard from the UW. Then, I found out yesterday my doc is on vacation until the 24th! So, I called UWMC today and they said nothing had been sent over. I

told them my doc was on vacation and they said his nurse could send over the referral and my med records. So, I called her today and asked her to do that, today if possible, and she said she would, she seemed understanding. I guess we can't fault the doctors, nurses, and all the others that treat us, they are probably doing the best they can with what they know. The feeling I struggle with most is that of being helpless and dependent on others or a system. I do have faith in God to see me through this and be my ultimate Helper in times of trouble. Beverley, don't give up hope, I believe you will get the help you need! If you want to talk over the weekend, call me, C_53_IPF_5/09Washington-the-Evergreen-stateTo: Breathe-Support Sent: Thursday, August 6, 2009 10:24:46 PMSubject: My visit with the doctor

Hi , I'm still not feeling well today. I saw my doctor. She is starting a refferal to the UWMC but she said that it would be better if I got it from the pulmonary clinic I have been going to. She told me the dr. who is taking over most of the other docs patients. I had to wait for over an hour past my appointment time to see her. She doubles my diabetes medicine. I had to go to the pharmacy to pick it up I had to wait an hour for that. By that time it was 4:30 and I needed to call the pulmonart clinic. I have a cell phone but it doesn't work very well anywhere around here. I found a place to park in the lot where my

phone worked and I called them. I was told that they are making appointments pretty far out. I told her that my disease was progressing and I needed medicine and I couldn't wait until far out. She told me she

would let me talk to a nurse. I talked to my other doctor's nurse and he apologized for the doctor not getting back to me. He told me that he had put the papers on his desk. He said that he would talk to the other doctor tomorrow. If he doesn't do anything I will find someone who will. My disease is progressing and my PC doctor told me that Dr. P had let her know that I should be on Imuran along with the prednisone so I guess I won't be able to get off the prednisone. I am very tired again tonight. It has been another depressing day. I think my mind is roaming and this may not make sense.Thank you for the hug and right back at you.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Convenient doctorsTo: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 10:57 AM

Sometimes when you're seeking a convenient doctor with expertise,depending on where you live, thats just not possible. Joyce Rudycouldn't find one in her area of Arizona and in fact was being done muchharm by her pulmonologist' s ignorance. Going to National Jewish was ofgreat trouble and expense but she'd tell you today its value. Many ofthese means of finding expert pulmonologists will not give those expertin Pulmonary Fibrosis. However, a good compromise might be finding oneof those for routine help while going to a major ILD center fordiagnosis and treatment. Ideally then they would coordinate with thelocal doctor.I don't have or know of any lists of doctors with PF expertise. I wouldask any doctor how many PF patients does he currently treat and wheredid he gather his knowledge of the disease. Those are very fairquestions. The Pulmonary Hypertension Association actually does have alist

of those expert in PH and since they often work closely with PFdoctors, one might look there and ask them for a cohort. I live in theDallas area and there are only two doctors here who make their list.None of them are in the city I live in, Plano.I use PH as an example because its the information readily available anda disease many of us may face. Here is their find a doctor tool:http://www.phassociation.org/Find_A_Doctor/Unfortunately, there is not an expert PH doctor in West Virginia orSouth Dakota or North Dakota or Wyoming or New Mexico or Idaho and manyother states only have one. Regular Cardiologists are not qualified forPH. Regular Pulmonologists aren't.The same situation exists with PF. I'm not pointing this out to be analarmist, but there are areas of the country you can't find

theexpertise you need. If you live in Mississippi, you may have to drive toAlabama or Louisiana. I drove 900 miles initially for a thorough secondopinion and work up because although there were those with experience inTexas, they weren't yet a Center of Excellence. I suspect those samestates i listed above that don't have PH doctors may not havepulmonologists I would trust to diagnose or recommend treatment plans onPF. Which brings one to a personal decision of choosing a good doctornot properly trained in PF or traveling. Traveling adds time andcertainly expense. I'd recommend the compromise of local maintenanceunder remote expert supervision, but each must make their own choices.We have a member who lives in GA but chose Duke because at the timeEmory wasn't at current levels. Jack Marshall is in Maine and travels toDuke. We have those from Mississippi going to Alabama and Joyce Rudywent from

remote Arizona to Denver. MangoMan who keeps us entertainedwould love to return to Mexico, but we've lost a member who made a tripback to Mexico and he recognizes the facts of medical exposure and risksenough to realize its not the best place to live with PF.Mostly, we don't choose where we live based on medical needs but otherfactors led to it long ago. However, two years ago I was contemplatingwhere to live and my medical needs were an overriding part of thatdecision and that was before the PF diagnosis. I feel for those whocan't move and can't get what they need locally. However, I don't wantus to overlook the fact that some locations just don't have doctorsexpert in PF. As important as research may be and as national attentionmay be, one thing that is sorely lacking is training within thePulmonology profession in Pulmonary Fibrosis. I'm sorry the answersaren't as we wish when some look for

medical expertise in their area. Iwould personally do anything I could to get to the best I could find,but that may not be possible for some nor the choice others feel isright for them. I do suggest one thing though to those saying they can'ttravel the distance. Reread Joyce Rudy's story. She sacrificed the birdsshe loved, made the trips by herself at great expense, and had to begfriends to take care of her dogs. She went against the recommendation ofher local pulmonologist and made the trip. I remember her lost andfrustrated. Now I see her upbeat and off to her exercise program. Likelyher life has been lengthened. No doubt the quality improved and not justfrom a physical standpoint. Even more from a comfort and

controlstandpoint.