Adele Friedman
Forum Replies Created
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Unless it’s something like a hair clip, I try not to trust products in which their data is written in such a way as to need a good proof-reader. I also find good proof-reading is valuable in protecting oneself from online scams of all kinds: errors in spelling, grammar, syntax and punctuation do not speak well for the product advertised. I use Symbicort and trust that if there were anything to inhaling Himalyan salt, one of my doctors would have told me so.
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I can do pool exercise without oxygen. More water aerobics type workout than swimming per se, but go for over a half hour at a time. I am not fully dependent on oxygen, but it helps. Currently doing Noah Greenspan’s PR video program and at about the time the walk exceeded 7 minutes, I decided I needed some oxygen while walking. One thing I’ve learned is that because of my relatively poor diffusing capacity, oxygen isn’t able to transfer into my blood, nor carbon dioxide out, as efficiently. To a great extent, that low-ish DLCO score is the reason just throwing more oxygen at the problem doesn’t always help as much as we might wish.
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My mother had some type of PF and she also had allergic bronchopulmonary aspergillosis. I’m told it’s likely she had PF and the aspergillosis was an opportunistic fungal infection. I had a ton of bloodwork done and was found to have ILD/PF as a result of Sjogren’s Syndrome. I believe my mother may have had that too. She had several symptoms that could indicate it. So, my PF is not IPF: it’s caused by Sjogren’s. Other autoimmune diseases can cause it too, and it’s not uncommon for people to have more than one.
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It is your right to talk when you’re ready. I know people mean well, but the notion of “getting well” doesn’t apply to so many diseases. It is hard when you’re first diagnosed.
We had gotten kittens about a month and a half before I was diagnosed. I was glad for them, and yes, we have plans for who will take them when we can’t care for them.
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I also take alendronate and have since before diagnosis, no problems before or since. I take mycophenolate and Symbicort (much happier with this than nebulizers). I have lost weight, but it’s been deliberate, via lower carb eating, trying to keep it to around 100 g. a day. I’ve noticed on the Facebook pages that many seem to have been overweight in the past and are trying to lose to be considered for transplant. I have never heard of someone being required to have a BMI of <18, though. It’s possible my breathing burns extra calories, but I realized years ago, losing weight is mostly about what we eat. I have a good appetite now but eat with more control. Trying to reduce inflammation is part of it. Being ready if I decide to pursue transplant if I get bad enough. Being able to move/bend more easily.
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I live in the Olympia, WA area and see a local pulmonologist here for PFTs, six minute walk tests and follow up appointments. I also go to the ILD Center at OHSU in Portland, OR, a two hour drive. (Since I am unable to drive at night, this time of year, I keep Google on speed dial for sunrise and sunset times in this northern latitude for setting appointments!)
At OHSU, an ILD specialty center, I see a rheumatologist and pulmonologist and it was the rheumatologist who based on my data, including extensive bloodwork, and HRCT, diagnosed me with Sjogren’s Syndrome which is probably the cause of my PF. It’s tricky diagnoses like these that make going to an ILD center a good idea. At least in the beginning. Local pulmonologists may not have the time and expertise to look for autoimmune diseases as primary causes of ILDs, or other less common scenarios. There is a lot more “I” PF diagnosed outside of specialty centers that really is NOT idiopathic if the right eyes look at the situation. Therapy is often different. I am on mycophenolate to tamp down my immune system, rather than Ofev or Esbriet.
My sole support is the online forums on Facebook, which brought me here and brings me good webinars about lung disease.