End of June already?

Wow. Time flies.

Things are pretty good. I increased my Uptravi to 1200mcg about three weeks ago and didn’t have the avalanche of side effects that I was expecting. I had two or three very bad days of full-body aches and exhaustion, and lots of small headaches and episodes of facial flushing, and my knees and feet hurt most days. But no killer make-you-cry headaches, thank goodness, and not the “4-times-a-day painfully burning hot face for a full hour” flushing that I experienced with the last increase. It was just generally easier this time than the hop from 800 to 1000.

I have my arsenal of weapons against the side effects, which I will list for the benefit of other Uptravi patients who might find their way here: ice packs for my hot face, imodium and simethicone for the tummy troubles (two imodium a day, in the evening because they make me sleepy, and simethicone whenever my stomach starts to feel “wrong”), ondansetron for nausea (I bought some “Chimes” ginger/mango chews from Trader Joe’s that are quiet effective against light nausea, too), aspercreme for the muscle and joint pain (works well for muscle pain, less so for joint but better than nothing), flonase for nasal congestion.

I think I have finally noticed a slight, very slight, improvement in my pulmonary function. For most of 2016, since stopping the Tyvaso, I’ve needed to use oxygen almost the entire day. Even at rest in the afternoon I’ve needed 3 liters of o2 just to stay at 93%. Not good. But for the past, oh, three weeks or so I’ve noticed myself forgetting to turn on my oxygen machine until the evening, and sometimes I check in the afternoon and find that I’m at 93% even without breathing extra oxygen.

Walking from room to room still makes me lose my breath, or even bending down to pick something up off of the floor, but being able to breathe a little better while sitting still is very nice anyway! Next Monday I’ll go up to 1400mcg, and then a month after that to 1600mcg, and that’s the top dose.

My mood has been good, I’m sleeping and eating well, and my life is comfortable living here with my lovely family. I’ve been working on Dracula when I can and am halfway through the book! I started a new knitting project recently, am reading a good book, and have discovered a new podcast. I’ll write about all that in my next post.

Category: Blog 9 comments »

9 Responses to “End of June already?”

  1. Mike Wilson

    This is all good news — congratulations! This is the best post in two years; I couldn’t stop smiling. Good luck with the increased dosages!

  2. kara

    Aww, gosh, thanks Mike! :) :) :)

  3. Jane Kelly

    I discovered your voice through Librivox several years ago and really enjoy listening to you. I have listened to many books that weren’t really my usual “cup of tea” just because your voice is so uplifting and lovely. Thank you for sharing this gift.

    I am so glad you are seeing improvement in symptoms. I had a sort of short term bout of PH a few years ago when a rheumatoid arthritis drug induced pneumonitis. In the hospital they told me I had PH based on the results of an echocardiogram. Reading about it was very sobering. I did go on to recover greatly and was only on oxygen for a few months, and a later echocardiogram showed much improvement. I am struggling with finding an RA med that I can tolerate and that will work for me to slow the destruction so I know that can be discouraging. I keep you in my thoughts. Thanks for sharing the good news of lessening symptom troubles!

  4. Genia

    Hey Kara, I am a big fan of your reading skills at Librivox and I have been listings to you since 2005 or something like that. Every time one of “your” chapters of “Pride and Prejudice” comes up it’s a wonderful experience.
    Now, that I’ve learned that you speak German, I wish you eine gute Besserung und viel Erfolg weiterhin mit deiner Therapie!

    Liebe Grüße aus Frankfurt am Main,
    Genia

  5. kara

    Thank you, Jane, and danke schön, Genia :)

  6. Scott Norrie

    I have been listening to you reading for some time now and have already sent comments from librivox. I think your readings a fantastic as your voice is great. I would like to suggest you do A Sudy in Scarlet – Sherlock Holmes, as its a great story everyone would enjoy but also to be honest its my favorite story as I am a Sherlock Holmes fan for 30 years also as you are my favorite person to read such stories, it would be great to listen to it. I think it’s great the way it shows how Holmes and Watson meets. Anyway, I would appreciate f you would consider this. Thanks for the readings on librivox and the readings on your website as I travel all over the world due to my job and I take my IPad so I can listen to your readings as they are better than anyone else. Thanks very much.

  7. Katie

    Hi Kara,

    I’ve been listening to your recording of Heidi on Librivox and have been enjoying it so much! I have health problems of my own that have me often up in the middle of the night and it is delightful to have something to listen to that helps pass the time in a pleasant way. I am looking forward to starting Betsy-Tacy soon too. Take care and many thanks!

  8. Mike Wilson

    Kara —

    It’s the beginning of August. Time for an update. An EXTENSIVE update!

    - Mike ;)

  9. kara

    You’re right, Mike. Update written, with a special post scheduled for tomorrow morning (August 10th). :)


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