Say, what is “the purge”? Glad to see that after that, folks are getting benefits. My CF team suggested -back in April – I might want to try it, but I’ve just been ruminating on it. My pulmonary sarcoidosis is still what’s giving me a gruesome bad time. I just changed to a different (large) care center, so first I want to see what that…

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William and Scrappy – for me it’s you look great, *I’m glad you got well.*. Also “there are lots of people worse off than you “.

I am trying! twice 5x/wk seems good to start – i made it last wk (but not 6 or 7). – I have to balance my pulmonary sarcoidosis “activities”, too. Maybe I’ll reset a higher goal in “H2” (July). -jeanne-

Use my nebulizer TWICE a day at least 5 of the days of the week. I tried going to just 1x day for the summer, as I kept having a lot of morning med appointments. My lung impact is considered fairly light. But my FEV1 % predicted dropped 4 points. And I can feel that difference. In the fall I got it up to 2x a day only about 3 days of the week.

Wow, Robert-Lane. Fascinating and strange how your allergy and asthma symptoms came and went in different times of your life. My allergies never take a hiatus! I really big congratulations on your 80th birthday! That is really something.

Thank you, Tim! I really appreciate the time you take to explain things.

William, thanks for your words of positive and encouragement. And everyone, HEY, I got a bit of good news on Friday about the pulmonary sarcoidosis: with my newest CT, it is stable compared to the last 3 scans that each showed “continued worsening“. I’m feeling better, too. I don’t have to go on the methotrexate at this time. I’m getting used to…

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So glad you’re doing well on Trikafta – and your sister, too!

Tim, what does compound heterozygous mean?

I was diagnosed at 67, 2 years ago. 7 months later I was also diagnosed with pulmonary sarcoidosis. A rare but not unheard of combination. I would say that my CF seems “light”, as I had a relative with CF so already knew what more intense cases were like. The sarcoidosis is not being any fun at all.

As to CF, as a kid I had repeating…

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I try to fend it off and have gotten into afternoon caffeine. Even 5 years ago I couldn’t do that, as then I couldn’t sleep. But now it works – and I can sleep. I was napping a lot in 2022. But I’m often thwarted by the “timing” of need for the nap, as I have had so many medical appointments the past several years. But, also, it’s unclear if…

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Jumping back to Feb 13 – hi william, tim, all. An update and bit of history. History: “MAC” was the first thought by the specialist who read my first CT scan in March 2022. But then the F508 showed up in bloodwork… let’s skip a lot and jump to my CF diagnosis, trial of Trikafta (resulting in badly elevated liver enzymes), and then…

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Hi. I’ve been off the forum for some time – but popped in today. Great read, this thread. Clear to me that you, Tim, and many others, understand CF far more than I do. As my lungs are not greatly impacted by CF (or so it seems), I have focused my light medical studies on the sarcoidosis that I have (pulmonary). Currently dealing with a…

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Hi, Tim. WRT “joint stiffness”, what I discussed with both my hand specialist and also CF lead doctor was about it being the synovial fluid. The CF doctor said he hadn’t heard of positive impact to synovial fluid before, but that he would not doubt it could be so.

Some backstory: when I was 50, 17 years ago, I had a knee surgery on my… Read more

Hi, Tim & William. Yeah, when I first heard that prednisone is the usual first line of treatment for sarcoidosis, I thought I hope I don’t need it I hope I don’t need to have it. But my lung CT scan between last March and October worsened considerably, as did my shortness of breath and fatigue. I think the weight loss was caused by a… Read more

Tim, so sorry that i did not reply! I have been so busy lately – and in some ways enjoying the boost of being on a high dose of prednisone for the sarcoidosis.

Liver enzyme issues are a known/sometimes side effect of Trikafta. And they usually resolve, and mine finally did! Last week I had a CF Clinic check up and a hepatic panel showed my… Read more

Jenny, I’ve barely e-met you, but have been impressed and grateful for your contributions! I am also very glad you’ll stay around as a participant. Thank you for serving so ably in a role that I am sure required a significant amount of your time.

I love how your personality comes through in your writing. Kind, and professional without… Read more

I wonder if I can wake up this thread with a few comments and questions? DEANNA, I am wondering how the Trikafta is going? I was on it for 3 months + 1 wk, but my liver enzymes skyrocketed. I also had gotten a UTI. I was taken off Trikafta, and after re-evaluation after about a month, permanently off it. It only took a few weeks for the… Read more

I wish there had been more seasons: GLOW (Neflix). It’s been a few years. It could be my age (67) that made this show sit so well with me.

Seinfeld: I am going through it all again… me and my oldest, now blind cat. He loves couch and “TV” time.

Not a fan of murder mysteries. Knew someone who was murdered, never solved. One day I was reading… Read more

Thank you, William! Besides you, only my closest friends help me celebrate with no jokes such as “I’d be glad give you some of my extra weight.”.

Found out today at my CF Clinic appointment, that I will not be put on Trikafta again. I guess it’s good news in a way – So if my lungs didn’t need the Trikafta – as the bronchoscopy revealed -… Read more

I’d been on Trikafta 3 months, was just starting month 4 at the end of Nov. I got bloodwork done and my liver values were off, with enzymes pretty high. Results got in at the end of a Friday, & I got sent to the ER (a waiting room full of people with flu, covid and respiratory virus!). My liver was painful and swollen – “inlflamed” per… Read more

I have been thinking about this all week, but can’t pin it down. And I guess that is it: my diagnosis continues to evolve… nothing is stable. I thought that The Diagnosis, in July, was the start line to a new path that I would follow. But now I have a likely ILD (interstitial lung disease) Pulmonary Sarcoidosis. This after a bronchoscopy… Read more

Wow, Tim – you obviously know a lot about bio-chemistry (I don’t). Impressive. The first part of what you said is what I suspected. When it comes to “Anions” and “Cations”, I’m lost – but will share this with my new private nutritionist (out-of-pocket money) – he is a voracious learner, and he has worked with about 1800 CF patients over the… Read more

@Tim Blowfield, you mentioned “osteopenia” above. Do you have more info you can share? I am having a very tough time with my back (and finding it quite hard to chase doctors, PT and just self-care for it whilst I navigate all the CF ‘stuff’ I have going on!). IS there a CorreLAtion? Because for me, a recent cervical CT scan and thoracic xray… Read more

Tim, I will encourage my team. I have not yet reported directly to Vertex – do you recommend this? Also, there is a pharmacist at the Pharmacy from which I get my Trikafta who does active tracking, even phoning me periodically to ask how it is going, what side effects, and what “changes” I am feeling/seeing. I think that is quite good!

Hi back to folks on this thread, and hello to Barbara Harison. Barbara, nice to read your story. Your exercise description at 77 is inspiring to me. (I introduced myself above on Oct. 6th.)

I’m at just 3.5 months since diagnosis, so nothing seems to be stable. A few updates.

In terms of things pulmonary, a new CT scan of my lungs showed… Read more

Hello folks on this thread! First of all say that you guys might want to take a look at the thread called “late CF diagnosis”. There are a few people there reporting on track after, but I see that Sandra Moore is also there and seems like now her Trikafta experiment is done!

I just started week 8 of Trikafta. So many things have been… Read more

Laura Lee, try this link from vrtx (who makes Trikafta). Vertex Pharmaceuticals | Medicines | Guidance & Patient Support (vrtx.com)

1) They can & will help estimate co-pays specifically for you. 2) They will have info about co-pay financial support.

You’re on private insurance – the foundation that helped me will not cover you. But… Read more

Hi, @Tim. thx for your aside comment “but not ‘got’ CF at that age”. I have found that some in my friends circle just cannot accept this, and somehow twist around what I told them and call it “adult onset CF”. It’s curious.

Laura Lee, are you the US? I got financial aid for my Trikafta co-payments through a non-profit foundation. If you are in the US, and if you at first get denied through your health insurance, I recommend to then partner with your doctor and file an appeal. Don’t freak out about co-payment costs at the outset… get RX-ready, and then deal… Read more

I’d still been masking when going shopping and such, but after my july 13th diagnosis, I started again doing stuff like wearing a mask in a restaurant while ordering or paying, only taking it off while eating. Similarly still masking in crowds, even outdoors. // In the area where I live, it has been going around a lot, still. I know so many in… Read more

Hi again. @Travis – I watched just part of your family video so far. Very cool that you did that. I’ll watch more during my next home RT session 😉 .

To join into the convo about the CFTR genes, I have DF508 and c.-581G>A. The latter, very little is known about it. I guess some call it a “novel variant”. But my sweat chloride test… Read more

Hi, All. I will comment more soon – but so interested to read this thread! I am 67, and just diagnosed July 13th. Like others in this thread, health issues throughout my life that were persistent & problematic, but not “put together” until now. I live in California, in the area called the “Bay Area” near “Silicon Valley”.  -jeanne- (when… Read more