Visit with Lung Specialist
Posted 04 June 2011 - 08:33 AM
I spent hours prior to my appointment organizing my medical records. I kept many of the reports and tests done over the past 7 years but not everything, I discovered, and I didn't have them in any order, just piles of papers. I always assumed I could get them from my doctor but discovered it isn't that easy, especially when you have such a complicated disease. In addition, being on a transplant list for a kidney at 3 centers required yearly extensive testing, always kept on record at my dialysis center and are now in thick files at my nephrologist who has yet to be computerized. I now have a binder organized by areas like PFTs, six-minute walk tests, colonoscopies, CT Scans (which I also have on disk from 2007) etc. I also have the films from the calcinosis on my neck but no reports from the doctor. I remember he told me I made the medical journals for that one but don't really know why. I have discovered I have no endoscopy reports and I don't have my ANA test. I think it was 1:180 and I know it was speckled pattern. Does anybody know how long a doctor keeps records? This was taken in 2004 and I haven't seen that doctor since then. So my task now will be to try and get my records as complete as possible. In the binder I also placed a copy of my living will and Power of Attorney just in case...
Back to the lung specialist: HE called me twice before the appointment to discuss things and make sure everything he needed would be available. He also gave me his email so I could send my medications and list of doctors. He has access to all my records through the computer system at the center and duplicated it for me, giving me papers an inch thick upon my arrival (which I now have to go through and organize in my binder, there may be reports and tests I am missing in them). He took my lung studies and plotted them on a graph giving me an overall picture of my lungs over the years. Except for 2007 where things spike really high and really low and he said to discount as invalid my lungs have been at a plateau. He took me to a computer and I looked at my lungs past and present. He very clearly pointed out the fibrosis at the beginning and where it is now. It was really amazing to see these 3-d images on a screen and travel through my lungs. Again, this showed some changes but not "significant worsening." So all of that is really good news. The bad news is that my lungs have only 55% capacity. But I don't need oxygen!
He also said he doesn't believe I ever had pulmonary hypertension. My sclero specialist believed I did from a right heart cath in 2010 and wanted to put me on Letaris which never happened because of the kidney transplant. He said she was looking at the numbers wrong and he would tell her. I mentioned that she wanted to "revisit" that at my next appointment and there was a possibility of another right heart cath and he said that "he didn't always agree with that particular specialist about her ideas with testing." So that is more good news.
I am already on myfortic for anti-rejection of the kidney which would be the course of treatment of the progression of the fibrosis. As we know, there is really no means to permanently stop the progression.
I am almost ready for my appointment next Friday. I was VERY impressed with the lung specialist and complimented him on his communication with me and all the work he put into preparing for my visit. When you've seen as many doctors as I (we) have you know they come in all styles.
Here's some spoons for all of us.
I'll keep you posted about my appointment next week,
Posted 04 June 2011 - 09:42 AM
What a great thread! Interesting, his findings, to say the leaast
You have done a great deal of work preparing for your doctor visits, yet it seems obvious (to me) that the lung specialist was quite appreciative and demonstrated so in turn! From my experience (and likely others', here on the board), he is a rare find and I'm very glad you are under his care!
At this juncture, I'm wondering if he could be a conduit (and/or advocate) for possibly getting you in sooner to your scleroderma specialist. OR...is there another scleroderma specialist (in your area) with whom he could refer you, by chance?
I ask this because it seems he may have some ideas, with regard to another specialist he may feel would be better suited you, with all of your health issues. I've had doctors who have suggested when asked and it's always in my better interest, as well as theirs!
Thank you for posting about your appointment and I look forward to your posting about you appointment for next week!
Posted 04 June 2011 - 09:50 AM
That does sound as if overall you've had a very good outcome.
That's good news about your lung function and also (I know this myself ) it's an absolute joy to have a lung specialist in whom you can have great confidence. At least if they can stablise the progression of the fibrosis on your lungs, that will be a good result. (A lot of the "ground glass" on my lungs subsequently turned out to be inflammation, which is why I had a good improvement from my treatment.)
As far as I know in the UK, doctors keep medical records from birth to death (unless someone carelessly leaves them on the train, which I believe has happened before!! )
I'm so pleased that you have made good progress and I do hope that your appointment on Friday goes really well.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 04 June 2011 - 11:08 AM
Great news about the fibrosis and pulmonary hypertension! I recently met a lady who has had scleroderma for 30 years and she only has 50% lung capacity due to fibrosis and wasn't on oxygen either. Amazing what the body can make do with eh?
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 06 June 2011 - 08:38 PM
Ah, I just wrote a nice long response and then hit the wrong key and voila, all gone <sigh>. Well, to put it more briefly, I'm glad that you had another opinion on your lungs that you feel more confident about. It must feel like an enormous relief to have the burden of a P.H. diagnosis off your shoulders. That calls for a MAJOR Sclero Happy Dance!!!
I've found greatly varying times on how long doctors keep records. I was able to get some records going back more than 50 years. Sometimes doctors retire or pass away, or clinics merge and records get lost in the shuffle. I noticed a misspelling of my name on one doctor's note and realized the clinic might have another file on me under that wrong spelling, which they did, having given me two different clinic numbers. Just dig, and keep on digging. You probably won't get it all but you'll have more than enough to fill in the major blanks. And at that point, the doctors will only be interested in the summary sheet anyway, feeling very confident that everything is carefully documented.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 07 June 2011 - 12:44 PM
That was interesting to read through your post and your ups and downs with things. 2-3 years ago when I was taking my son to the same pediatrician I went to, as I was leaving I was handed an envelope with my old medical records and was told they were purging. I didn't have to take them, but of course I did. I wanted to look through them! So that's an interesting question of how long places hold on to your files. I didn't think it was possible to personally retain the results of every test, and I have 'assumed' the doctor would keep everything. Now, however, in the last few months I've gone from having one doctor to changing from a family doctor to an internist and adding 4 more specialists, I really wonder lately about how the whole picture will be formed! How active do I need to be in my medical records? That sounds like a good topic for discussion!
So glad you're don't need oxygen! Look forward to the next post.