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update with Respiratory doctor!

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#1 summer


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Posted 18 March 2008 - 12:02 AM

Well, I finally got to see my Respiratory Physician for the first time today after a 6 month wait!. I had posted earlier on, I have limited/Crest Scleroderma , no skin issues at the moment but lots of things going on internally.
I am taking Atenolol for Tachycardia and am currently seeing as well as a rheumatologist, a Cardiologist as well. I have had SOB now for at least 12 months now, sometimes for weeks at a time, other times it can be intermittently. My rheumatologist referred me to a Respiratory doctor as 12 months ago they found a lesion on one of my lungs and also for breathing problems, pain in lungs and so forth.
Prednisolone had helped for awhile for breathing/pain in lungs but now have been off Prednisolone for 3 months. My sob has now returned and is nearly constant.

I am a little angry at the moment with the response of my Respiratory Doctor.
I saw a Consultant at the hospital and was in and out of his office in 5 minutes.
I told him all of the symptoms that I have had in the last 12 months with breathing and SOB and the pain in my lungs. I also gave him my PFT results that I had a couple of weeks ago , my DLCO has been declining at a steadily rate for the last 12 months. His response was "oh, we will have to wait and see what happens in the next 12 months or so. I was also told that even if I had Interstitial Lung disease he wouldn't treat me, it is up your rheumatologist.
I made it quite clear that I wasn't going to let him palm me off to my rheumatologist, he reluctantly filled out a form for me to get a Ct Chest. He seems to think that it isn't SOB but reflux that I am feeling, ( I think I would know if I was breathless) he also reluctantly filled out a referral for me to have a gastroscopy. He spent more time explaining to a third year medical student what Scleroderma was and how I would get kidney disease, liver disease and so forth.
I have no objection for a medical student sitting in , they have to learn somehow, but am annoyed at his response. (he only filled out those referrals after me asking 3 times, he was going to get my rheumatologist to do it!!!)

My Cardiologist was expecting the Resp doctor to do quite a bit of tests with my lungs. I feel as though the whole thing was a waste of time, I am sitting here tonight once again SOB and still getting no answers!

I am sorry that I am going on and on but frustration is quickly setting in.

Thanks for listening
Celia :angry:

#2 epasen


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Posted 18 March 2008 - 03:23 AM

I'm sorry for u Celia, frustration.. it's just so overwhelming with this disease. I'm really not too familiar with this topic, but hang in there! I really do feel your frustration, I think we've all been there too.

Take care,

#3 Guest_SADIE_*

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Posted 18 March 2008 - 06:22 AM

I''m so sorry to hear about this. I wish I could help you out somway. You will be in my thoughts.

#4 Sweet


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Posted 18 March 2008 - 08:17 AM

Hi Celia,
Wow how very frustrating. I'm so sorry. Sometimes I just don't get it. I don't understand why it's all so hard and why sometimes it feels like we are swimming up river.

You keep advocating for yourself and make sure you get the treatment you need.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Sam


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Posted 18 March 2008 - 12:28 PM

Celia, I'm sorry to hear that things didn't go the way you and your one doctor hoped. Take care,

#6 summer


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Posted 18 March 2008 - 08:37 PM

Thanks for the support everyone. The Scleroderma nurse at the hospital that I go to, to see my rheumatolgoist and other specialists called me today, I told her about the disappointing visit to the Respiratory doctor. She was quite surprised about what he said and has brought my appointment to see my rheumatolgoist to next week, she also said that she has scheduled a one hour appointment for me to talk things through with my rheumatologist.

I will no longer be seeing my regular rheumatolgoist as he was filling in for the Consultant who was on maternity leave, I was assured that she (the consultant)
by the scleroderma nurse, is very nice and is open to lots of questions.

I shall update you all on how I go next week.

Many thanks again