Sunny

[Guest guest]

Sunny,

Bruce said it better than I ever could. I am happy to hear you intend to pursue a new pulmonologist. His complete lack of care and concern for you is indeed frightening. He is the worst case scenario when it comes to bad doctor experiences.

My suggestion would be to start at square one with a new pulmo, preferably someone with extensive experience in interstitial lung disease and you need to do this very very quickly. The rapid weight loss, the low sats... it all points to an urgent problem and he is just not taking it seriously. But at this point it doesn't really matter what he thinks anymore, the only thing that matters is getting you into the care of a competent pulmonologist.

Don't ever ever think that by stating your concerns that you are whining. You are very brave and intelligent. You are correct to be upset and disillusioned. Now comes the more difficult part which is taking action when you feel so lousy. You have our support and friendship, we're right here behind you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, April 26, 2009 9:34:19 AMSubject: Re: Sher

SunnyRead this post yourself and see if you don't want to just scream out"get another pulmonologist at a center specializing in ILD's." He showsno concern for your condition, no understanding of the disease. It's notcancer after all, is his feeling expressed. Do something now....please.To take any action or have any treatment or surgery based on anything hesaid would terrify me. Yet, waiting longer would as well. Find and getto someone now.>> Mama Sher,>> I hate to whine but I have had a major surgery every year for the past4 so this will make 5 in 5 years. My pulmo dude said, and I quote: Idon't even give 24 oximeter to my end stage cancer patients. WHAT? Iwill be seeing

my GI guy next week and him I have had forever and trustcompletely so I know he will give me the straight scoop. Pulmo doc saidthat O2 falling to 83 is not a big deal and happens to a lot of peopleand he couldn't justify putting me on daytime O2. As far as the 24 hourtest, he told me I could go buy one at REI if I was that concerned aboutit. He also won't give me a perm. handicap placard and I can'tunderstand why. He keeps giving me temp ones. I would say 40% lungcapacity qualifies me for this at the very least. I can't walk far atall without being short of breath. I also had a bad scare today. I bentover and when I stood up my vision went dark and if my husband hadn't ofcaught me I would have been down. Pulmo guy is also not concerned that10 weeks ago I weighed 220 lbs at his office and yesterday I weighed inon the same scale 175. That seems like a lot of weight to drop in avery short time. When I

mentioned that it worried me he said "waterweight probably". I was floored. I had a complete hysto last year so Ican't imagine why I would retain 45 lbs of water. Can you? My husbandwas so mad when we left I thought he was going to have a stroke. Pulmojerk's last words were to the effect that I was out of his hands nowsince my lung problems are caused by a GI condition but if I get worsesymptoms I can call him in a couple of months. MB is right, I spelledit wrong and she got it right. I was pretty flustered still when I sentthat e-mail. Plus pulmo jerk says the surgery is "Intense" but itsounds pretty straight forward and safe to me. Oh and I asked him if hehad contacted my cardio doc since he said he was going to because of hisconcern over my pulse rate. He said "No, didn't get to it but your ratewent down pretty quickly so I wouldn't worry about it." First he saysit's a concern then he says it's not.

All I know for sure is that I amhaving my GI recommend a different pulmo doc. I saw the comprehensiveMRI report that said IPF and the biopsy results (done at a local smalllab) so I am fairly confident of that diagnoses. To be honest I amscared - badly. I have a severely compromised immune system and becauseof my Lupus no paid drugs work for me. I don't even bother with themanymore and just deal with it. I wish I knew how much pain there isgoing to be after the surgery and how long I can expect to be down.Sorry for unloading, just very scared and depressed. And feel like Ihave been treated like dirt from the first time I saw pulmo guy. I meanseriously, he won't even make eye contact with me. Thank all you guysfor being there for me. Without your wisdom and support I would be evenmore lost. Blessing to you all.>> Sunny PF 09, CAN 09, Lupus 05, Arthritis 05, Sjogrens 05, Diabetes

06,Hyperthyroidism 07 and on and on, Idaho> From: Sher Bauman> Sent: Friday, April 24, 2009 1:46 PM> To: Breathe-Support@ yahoogroups. com> Subject: Re: Sher>>>>>>> Absolutely MB. I've been reading the posts, Sunny's and yours soI'm caught up on what is happening there w/her.> We sure do need to stick up for ourselves... and each other.> MamaSher; 70, IPF 3-06, OR.> Nasturtiums> Don't fret about tomorrow, God is already there!>> Update after pulmo doc - hate to evencall him a doctor>>>> Hi Everyone,>> Just got home from pulmo dude. Refused to let me do 24 houroximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because theyfound out why my lungs are scarring so badly and why I can't breathe. Ihave Chronic Aspiration Neuritis (spell incorrectly I am sure). I amaspirating so much stomach contents that it is and has been scarring mylungs badly that's why I am down to 40% capacity.

Pulmo doc says thereare only two treatments: Raglan (which I am extremely allergic too) orsurgery. He has referred me to gastro guy for surgery which in hiswords "is very intense". Anyone ever had or know anyone who has hadthis type of surgery. My gastro dude isn't back until Monday and Ireally want to know if they are going through my abdomen. or throat orwhere? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomachoil in lungs is about 55. Mine was 142. Doc says without the surgery mylungs will continue to deteriorate and I will get worse and worse. Saidthe pain in my chest is esophageal spasm and it hurts like a very badword but there is nothing he can do about it. That's gastro guy'sdepartment. Believe it or not pulmo doc said "I just diagnose this Idon't treat it." Go see gastro guy and come back to me in 2 months.

& *^ & **** & ^^% ^ & **!!!!! And that's how I feel about all of it.>> Sunny, PF '09 & whatever else could possibly be wrong with thehuman body, Idaho>