9 posts in this topic

Due to a decline in my pulmonary function and a horrible 6 Minute Walk test my scleroderma specialist referred me to a new pulmonologist. She was hoping I could be put on a new drug for Idiopathic Pulmonary Hypertension, Perfinidone, but that is currently in trial for scleroderma and won't be prescribed. I am hopeful that this new doctor will be the right fit; I liked her and she is knowledgeable in ILD, pulmonary fibrosis, scleroderma and transplants. She is going to review all of my CT scans and my tests. Although I made arrangements for her to have everything by my appointment of course she didn't get them (they went into archives instead of my file but I had everything with me). I have an appointment with my PH specialist in a couple of weeks, followed by a right heart cath, and her thoughts are that another medication will need to be added to the Adcirca I currently take for PH. I now have to use O2 while sleeping as well as exertion. At the end of my appointment the doctor said she was excited about working with me, that she hates it when they send her someone who only has asthma. She said the fact that I am on anti-rejection medications that are also known to help fibrosis along with my complicated medical conditions makes me a challenge. She would like to get her other patients on the anti-rejection meds but they won't be approved. My final judgement is still out because I have felt that way about doctors before only to be let down.

 

My CT scan was about the same as the last time when my lungs started to honeycomb. That is when I started the process for lung transplantation but discovered I am not a candidate. The major difference is that for the first time there is no ground glass on the scan. I questioned that and was told ground glass is how inflammation turns up on film so my lungs are no longer inflamed. This might be due to the anti-rejection meds. I still have end stage lung disease.

 

My 6 Minute Walk Test was horrible. I desaturated quickly and never felt like I was getting any oxygen. I can always tell when the O2 is turned on and just didn't feel it. I walked 200 feet less than  last time. I started out at 97% on room air. After 43 seconds I went down to 88%. According to the results they gave me 2 liters of O2 and I went down to 87%. They increased to 4L and I went up to 89% and then they increased to 6L and I went down to 87%. When I finally saw the numbers I truly believed that the O2 was not connected correctly so I am having a retest in June. This just doesn't seem right to me as I always come up with O2. 

 

Sleeping with oxygen seems to be helping and isn't too bad. I have started exercising again. I will keep you posted as to what happens with the PH Specialist and further testing.

 

miocean


ISN Artist

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I really hope your new doctor is the right fit for you; I know how frustrating it can be to get the right doctor.

 

:flowers: I am send the kitten to purr and bring comfort and the flowers to brighten your day. Bless you.

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Hi Miocean,

 

Oh dear, I'm sorry to hear that your pulmonary function has declined, although it does sound as if you've made a little gain by having a pulmonologist who is so interested in you! Preferably I think I would rather be "boring" (which is how my rheumatologist described my last ECHO), but nevertheless it hopefully means that she will be on the ball and will go that extra mile to treat you.

 

I do hope that your re testing in June will show an improvement and also that your appointment with the PH specialist will be productive; I know how disappointing it is when the test results are worse than you were expecting.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

I don't know how I missed this thread earlier. I'm sorry your lung testing went poorly. It really may have been an equipment issue, especially since you know what oxygen is supposed to feel like, and your sats ran so low even when it was pumped up. I'm hoping your next round of tests goes better!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

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.

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Hi Miocean.....you're such an inspiration to me.  Sorry to hear about the bad pulmonary testing.  Will keep you in my thoughts.

 

Take care, Everyone.

Margaret

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I saw my pulmonary hypertension specialist this week and had an Echo. She called me and told me it was...

 

:emoticons-line-dance:  Fabulous!! :emoticons-line-dance: 

 

It was better than the last one, which was better than the base line. I have a trace amount of fluid but nothing to be concerned about. My heart shape looks good.  I am having a right heart catherization via the neck next week. I have always had them through the groin so this will be a new experience. If the RHC shows normal pressures she is thinking about taking me off the medication for PH instead of adding another medication! 

 

That leaves a mystery to solve as to why the increased shortness of breath. I am hoping I now have the right doctors to figure it out. I do have some improvement now that I am sleeping with oxygen and back to exercising. 

 

In the meantime I am off to some different beaches and sunshine. Today is the first day of spring and it is snowing here!

 

miocean


ISN Artist

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Hi Miocean,

 

What fantastic news!!  :emoticons-yes:  I'm so pleased for you!! :emoticons-line-dance:

 

Any decrease in medication has got to be good; it sounds as if your doctors are pulling out all the stops for you and I do hope your right heart catherization will go well next week.

 

Enjoy your time on the beach, snow or not!! ;) :great:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Miocean

 

That's great news for you and I really hope that you right side heart pressure is normal. Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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