Rose M.
Forum Replies Created
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Hi Charlene,
I didn’t have an echocardiogram done till a year after the IPF was found on my chest x-ray (May 2013). And I’m not sure how long I had the IPF before that chest x-ray. My echo done in the spring of 2014 showed I had a mean arterial pressure of 28-30. But my pulmonary doctor was not concerned, he felt we could keep an eye on it. I was also on Bipap at this time for sleep apnea.
I was taken off Bipap in March 2018. (Long story) I had another echo May 2018. And my mean arterial pressure was down to normal, 16. My cardiologist was surprised. We’re not sure why it went down. Was it because of being on Bipap for 8 years??
My cardiologist will repeat my echo next spring, unless I have any new symptoms. Since diagnosed with the IPF, I have PAH in the back of my mind as my dad had pulmonary hypertension due to long term heart disease.
By the way, the ILD Clinic at UCLA pushed my appointment back until the end of June. I was disappointed, but there’s been no changes for me, so that’s okay!
Rose -
Hi All,
I’ve only had one 6 minute walk test. That was given to me in January 2015 at UCLA. (I am returning to their ILD clinic in May) My test was done for 6 minutes, and I just kept walking till the end. I was able to maintain a sat in the low to mid 90’s during the test. I recovered quickly from any shortness of breath. I did 440 yards.
The test was done in a long wide hallway. And I had to turn around where it was marked in the hallway.
When I visit the ILD Clinic in May, I’m hoping to have a repeat test. My local pulmonary doc who follows me does not do them.
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My previous primary doc never tested my Vit D level. Neither did my pulmonologist. I have a new primary as my previous one retired. He tested my Vit D level last August, and it was low. He waited a couple of months and retested it, and it was still low. Put me on Vit D 5000 units each week. I see him in a couple of weeks for repeat blood work and a visit. Will bring him a copy of the article.
I do not have any follow up with my pulmonary doc, long story. Saw him last summer and everything was okay, so he said to follow up if needed. Sometimes I think he forgets I have IPF. However, my fibrosis has been stable for almost 6 years. I’m not on meds or oxygen. I will be checking in with the docs at UCLA’s ILD clinic in a month or so.
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I am retired. I stopped working in Oct. 2014, at the age of 63. I was a full time critical care nurse in a Cath Lab. My last year of work was part time, as I could no longer keep up working full time, nor could I keep up with the ‘on call’ schedule. I was always exhausted. I had an hour commute each way to work. It was a difficult decision as I loved my job. Retiring also made for a financial hardship for my husband and I.
I was diagnosed with IPF in 2013. It was found on a routine chest x-ray for a physical. My primary never notified me. I found out 5 months later in an appointment with my pulmonary doctor who followed me for my sleep apnea. I do not know how long before May 2013 the disease started.
One of the factors in deciding whether to work was I was afraid the disease could start to progress and I wanted some retirement time to enjoy my family and grandkids. I have been lucky and my disease has not progressed in over 5 years. I am not on any medication, not on oxygen, and I use a pulse oximeter to keep tract of my oxygen level. My baseline pulse ox is 92-94%. I live at an altitude of 4100 feet and many activities cause me shortness of breath, but I recover quickly.
