PH

I don’t usually talk about my health here, other than complaining about normal stuff like sore throats and colds, but Dan thought it might be helpful to me (and possibly others with the same condition) if I blog about my pulmonary hypertension, with which I was diagnosed in 2004 or so.

From wikipedia:

Pulmonary Hypertension (PH) is an increase in blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion.

PH makes it harder for the heart to pump blood through the lungs, much as it is harder to make water flow through a narrow pipe as opposed to a wide one. Over time, the affected blood vessels become both stiffer and thicker, in a process known as fibrosis. This further increases the blood pressure within the lungs and impairs their blood flow. In addition, the increased workload of the heart causes hypertrophy of the right ventricle (a condition known as cor pulmonale), making the heart less able to pump blood through the lungs, ultimately causing right heart failure. As the blood flowing through the lungs decreases, the left side of the heart receives less blood. This blood may also carry less oxygen than normal. Therefore it becomes harder and harder for the left side of the heart to pump to supply sufficient oxygen to the rest of the body, especially during physical activity.

I’ve also got a chronic dry cough, a rare symptom caused by my swollen heart tickling some nerves in my chest (they think).

My PH was caused by a birth defect in my heart.

I’ve been really lucky. PH is a rare disease and there is no cure and not many treatments, but mine has been kept under control all these years with simple pills — lots and lots of them (2 Tracleer and 12 Revatio per day), and they’re costing my insurance company untold thousands, but relatively easy for me to deal with.

I’ve had to take it a bit easy and cut back on activities, but up until a couple months ago I had enough energy for all my daily tasks, slow walks, the zoo, etc. Just no hiking, dancing, or running about :) We hire a cleaning crew to take care of the mopping and vacuuming.

But I started feeling much worse recently, which was frightening and frustrating. I don’t like to think about my PH, obviously, but I had to when I was suddenly getting out of breath on the shortest, slowest walks and around-the-house activities. My doctor saw me and ran a bunch of tests and it looks as if my heart is working much too hard, so it’s time for more aggressive therapy. Ugh.

The easiest and least invasive of the three possibilities is Tyvaso, a medication which I will breathe out of a small machine four times a day, so my doctor says he’ll start me on that and see how it goes. http://www.tyvaso.com/.

It’s the kind of thing, like my other fancy medications, that will be shipped to me by a specialty pharmacy every month. I’m pretty freaked out about this. I feel like I should be extremely grateful that such a medication exists at all, and that I have access to it. And I am. Of course. But it still seems scary and difficult. And I’m angry that I have this condition at ALL, and that it’s getting worse.

I also have an oxygen concentrator, a wonderful magical machine which sucks oxygen out of the air and sends it down a tube for me to breathe all night (without it I sometimes wake up in the night feeling breathless). It was hard for me to accept the fact that I need it; I don’t feel like an invalid, but breathing out of a tube seems so invalid-esque. However, I got used to it, and now I love it. Sometimes I use it in the daytime if I’m feeling worn out. It’s very soothing.

Now my doctor says I should use oxygen whenever I do anything active, so yesterday an oxygen company delivered some small oxygen cylinders. They’re about the size of a wine bottle, and I have a shoulder bag to carry one in when I go out. This is another hard thing to accept. How will I feel at the store, or the zoo, with an oxygen tube under my nose? But maybe I’ll be able to do the shopping without getting so worn out if I have enough oxygen.

Anyway. That’s what’s going on with me. I should get my Tyvaso next week, maybe. A nurse will show up and teach me how to use it. I asked if it would help me feel better, or keep me from deteriorating so rapidly, or what, and they said it might actually help me feel better, so that would be nice!

Category: Blog 16 comments »

16 Responses to “PH”

  1. Kathy

    Kara dear. {{{{{{{{{{{{{{{{{{{{{{{{{{hug}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

    I am so sorry, that IS hard to accept. I know you will do it with grace and style as you always do, but I’m sad and it sucks.

  2. Hugh

    hi kara, sorry for this new bit of unwelcome news, but the good thing i guess is having some immediate solutions that should make things better. good luck with everything…

  3. Chris

    Sunday 3 July 2011

    Hi Kara. Love your readings. I am presently listening to Alice – Through the Looking Glass. I love audio books, especially in bed before sleep.

    LibriVox are awesome and you are one of my favorite readers.

    You bring the characters to life, accent the text – thus giving the characters life. You read really well, and your timing is grand.

    All round you are a pretty awesome reader and person for doing this!

    I will probably check out your other readings just as you make stories so interesting. It really comes through how much you enjoy reading and your feelings and care for the characters.

    So I thought I’d pop by and say thanks!

    What you do is appreciated! :)

    your avid listener,

    Chris

    In Oz.

    PS Happy Independence Day for tomorrow!

    PPS I see I am adding this to a health related post … well, may God always bless you and hold you in his love!

  4. Elli

    *superhugs*

  5. Beth

    Oh dear, Kara. I hope this helps you feel better very soon. I know I’m very far away, but if I can be helpful at all, just ask!

  6. Catharine

    *hugs*

    My mom was on oxygen 100% of the time the last 3-4 months of her life, so I know a little bit about what you’re dealing with. Do make sure that the little bottle of oxygen will be sufficient for day trips; O2 companies also peddle medium-sized canisters that get put in a little wheeled affair that you drag along behind you. How long these last depends on the pressure level you’re using them at. (My mom needed a lot, so the little bottles were good for ~1 hour and the medium size were ~4 hours.)

    *manymanyhugs*

  7. kara

    It was so nice to wake up this morning to all these loving and supportive comments. Thank you, everyone :)

    Chris – there are links at the top of this page that will send you to all of my solo recordings! Happy listening!

  8. Gillian

    I’ll be thinking of you. We certainly found that blogging about health issues helped us and also seems to have helped others in similar situations to ours. May it be so with you too. I do hope that this new treatment helps you feel stronger.

  9. Chris

    Hi Kay,

    I went and checked your links and just watched “The Little Engine that Could” – I am still smiling so much!!! I left you a comment there! ;)

    :D

    Chris

  10. Margaret

    Kara,
    So sorry to hear of your illness. I wish you well.
    Also, I have wanted to thank you for your work with audio books. I find your voice so very clear and pleasant, giving me tremendous pleasure in my listening to the beautiful Jane Austen novels. Thank you most kindly for your volunteerism.

  11. Chris

    Friday 8 July 2011

    Hi Kara,

    Thanks for adding me as your “youtube friend” … I am very selective so I know you are duly honored! ;) lol

    We have a symbiotic relationship, you love to read stories and I love to listen … I don’t purr though! :P

    Kara, I hope you are feeling better!!!

    Chris

  12. Beth D.

    I’m so sorry to hear you are not well and have to deal with medical treatments.

    I so appreciate your readings. I tried the mechanical voice on my kindle, but as might guess — yuck.

    So thank you very much and know I am wishing you well.

    Beth D.

  13. Carolyn

    Hi Kara,

    I am sorry to hear about your PH, and wanted to let you know how much we appreciate you. I found you on LibriVox last fall when I listened to your reading of “The Secret Garden” and thoroughly enjoyed it. Since then my kids and I have been working our way through the books on your webpage. Our whole family loves to both listen to and read stories aloud. You have a beautiful knack for it and your story selections are great.

    You probably know of the following authors/books, but if they are new to you I think you will like them. We really enjoy Elizabeth Coatsworth; I think “Houseboat Summer” is our favorite. We also like Hilda van Stockum, especially the books about Fancie and Pegeen (Bantry Bay series).

    We’ll be thinking of you and hope you feel better SOON.

    Respectfully,
    Carolyn

  14. Cherilyn

    Hi Kayray, I am a fan of yours from Librivox. My 45-year-old niece just died from neglected PH. Do whatever you have to. It’s unfair and massively inconvenient, but still. God bless you.

  15. kara

    Hi everyone,

    Sorry it took me so long to ok your comments — my blog decided to stop emailing me about them!

    Thanks for all your kinds words and warm thoughts. It means a lot to me that you took the time to post here. I’ve been on the Tyvaso for a week now, and it’s not THAT bad. I’ll write another post soon and tell you all about it.

    Carolyn, thank you so much for the book recommendations! I’m not familiar with either author. I’ve asked my library to send me “Summer Green”, “The Noble Doll”, and “Cottage on Bantry Bay” :)

  16. Laura Baker

    Kara,

    This is my first visit, but won’t be my last, to your blog. I just happen to click on your name on Librivox.org after checking the spelling for a review I am writing on Room with a View that you read. I am constantly surprised when I find a reader on Librivox and see that we have so much in common. I am also a knitter and on Ravelry.com, I used to live in San Diego, and I love Librivox.

    I am sorry to read about your illness and hope that all the new aids you are getting will make life as comfortable as possible.

    I will have to go through and check out all your knitting projects and also download more of the books that you have read. Thanks for taking the time to make these classics available. I truly love the whole concept of Librivox.org. Simply brilliant!


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