Tyvaso

Today is my 15th day on Tyvaso, the inhaled medication I’m taking to treat my pulmonary hypertension (see previous post).

The first thing I’ll say is: if you’re starting Tyvaso and it seems daunting and miserable and horrible and impossible, be brave and stick with it. It gets better! I’ll try to write down as much detail as possible in case it might help someone who’s going through the same thing. Let me know if you have any questions.

On Friday July 8th a big box arrived from my specialty pharmacy containing the actual medication plus two nebulizers (one to use and one spare) and all their parts and accessories, and three or four instruction books that all say the same thing, and a little carrying case, and some other random stuff… Don’t worry, you will be able to pack most of it away in the closet in case of emergency. The stuff you need every day will only take up a little room in a kitchen cupboard or somewhere like that.

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You get three power sources for the nebulizer — regular wall-wart, rechargeable battery pack, and a car adapter, plus every kind of international plug adaptor. I leave the wall-wart plugged in in the kitchen (which is where I use the nebulizer) and keep the car adaptor in the carrying case.

Stephanie, a nurse from the specialty pharmacy, showed up that afternoon to teach me how to use the thing. Actually, TWO nurses showed up… the second was there because Stephanie travels all over the west coast, and they wanted someone local to be familiar with my case. Anyway nurse #2 wasn’t important.

Stephanie showed me how to assemble, use, and clean the nebulizer. It’s quite small. Looks like this when it’s ready to use:

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The base contains a little bit of distilled water. A little conical cup sits on top of the water, and the medication goes in the cup. The machine vibrates the water a few million times a second, which vaporizes the medication. The circular parts contain filters and you breathe through the nozzle thing.

In the morning, you put water in the base, put in the Tyvaso, put fresh filters in, and put the whole thing together. After each treatment (four per day), you take off most of the bits and put some plugs in the holes:

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This keeps the water and Tyvaso contained, and you can even knock the thing over and it’s ok. At the end of the day you take it all apart, dump out the base, wash all the plastic bits (just a swish with soapy water, nothing fancy), and let it air-dry till morning.

The machine has a timer and tracker so you know how many breaths you’ve taken. It seems really confusing and time-consuming and intricate at first, but dealing with the little machine becomes habit really fast and it’s nothing to worry about. I can do each treatment in under 2 minutes, probably.

The HORRIBLE HORRIBLE HORRIBLE part is actually breathing the stuff. I don’t know if it makes everyone cough they way it did me, but wow. After my very first breath I was coughing so badly I could hardly breathe and I had to pause a long time between breaths. After the three-breath treatment (they start you at three breaths, four times a day and work you up to a higher dose slowly), I coughed violently non-stop for the full four hours until the next treatment. My mouth and throat were miserably dry, and my throat was raw from coughing. It was AWFUL. There are several things that can help the coughing and dry mouth for some people — lozenges, hot tea with honey, yogurt, etc., but none of them helped me even the slightest bit. This was extremely depressing. I couldn’t do any recording at all and it felt as if I never would be able to again, and all the coughing left me so exhausted I couldn’t do anything.

It was almost unbearable for about, oh, three days. I just lay on the couch, coughing, and waiting for four hours to pass so I could start it all over again. Ugh. After that, it got slightly better each day. Still bad, but slightly better. Then, after seven days, I had to increase to four breaths at a time and the misery started all over again, almost as bad as the very first day.

However — on the 9th day I noticed that, despite the coughing, I actually felt a little better for a few hours. I felt like I didn’t need my oxygen, I had a little bit of energy, and I felt, you know, like maybe the Tyvaso was actually helping a bit!

Ever since then, the coughing has been decreasing day by day and I would say that, on the whole, I definitely feel better. I’ve been running errands without taking my oxygen along, and not missing it. I don’t always feel like I need to spend several hours lying down in the afternoon. Some afternoons I do, but not every day. One evening I even had enough ambition to go to the store for ingredients and baked a pie! A very simple recipe, but still something that would have seemed pretty near impossible, or at least a very bad idea, just a few weeks ago. My poor family has been living on frozen pizza, bagels, and take-out for far too long because cooking proper meals has been just too exhausting for me. I have the energy to cook more often now. In fact, today I’m planning to make a big thing of scalloped potatoes, with grilled chicken and asparagus.

Yesterday I moved up to five breaths per session and I tolerated it really well. Just a little bit of extra coughing, maybe. I think I probably won’t have to wait a full week before increasing to six, and then I’ll be two-thirds of the way to the full dose of nine breaths, four times a day.

One day last week I had to take Henry to the dentist and knew I’d be away from home at treatment time, so I took my little machine along (with its plugs in place you can just toss it in the carrying case and it’s fine), plugged it into the car, and it was all easy and quick. It made me feel less tied down to know that I could easily be gone all day if I just remember to bring my machine.

To sum up: if you’re just starting Tyvaso and feeling really miserable, don’t despair. It will probably get better for you just like it did for me, and maybe you’ll notice some benefits too!

Category: Blog 9 comments »

9 Responses to “Tyvaso”

  1. Kathy

    Good to see this, Kara. I was just sitting here thinking about you and wondering if I should email you for an update, and lo and behold….you had a detailed blog about how it’s going. Gosh-did you realize there would be an initiation process like that? I’m glad you’re feeling better now and even doing some cooking!

    Hugs, kisses and lots of love.

  2. Jennifer in MamaLand

    Just want to say – from an anonymous stranger – that I’m happy you’re getting a handle on the breathing situation. You don’t know us, but we have been enjoying some of your audiobooks (especially the Just So Stories and Five Children and It) and appreciate your reading skill very much.

  3. kara

    Aww, thanks Jennifer — glad you’re enjoying the stories! I’ve been listening to Just-So lately, too. Those always stories remind me of my big sister Kathy, who read them to me when I was little and who commented here today, too :)

    Hi Kathy! They list coughing as one of the many possible side effects. But they don’t actually mention “coughing so hard you get dry heaves and your brain bangs around inside your skull and you feel like you might die”. Heh. They also say it can take eight weeks for the side effects to settle down, so of course I figured I’d probably feel THAT bad for eight weeks. So I’m glad it’s easing up already. xoxox!

  4. willie

    just started it /m/62/

  5. Marsha

    I’ve been on Tyvaso for 5 days. I am feeling much better and very encouraged!
    Thanks for the good information.
    Marsha

  6. William

    It’s been 7 months now on Tyvaso after benig diagnosed with PHT a little over 13 months ago. This was the first PHT contact that I’ve attempted on the internet (slow starter). I started with 3 puffs/4 times and went right on to 9 puffs in a few weeks. Headaches were regular so I took pain relief.

    I can go to the mailbox out on the road without oxygen if I pace myself, but oxygen absortion drops rather low and halfway back I have to stop and regroup. I think that I feel better though. Appetite really diminished for quite a while, but is almost back to normal, although right after dosage many foods still aren’t appealing.
    I lost 10 lbs. and gained it back. I do cough after taking it, but it goes away. Also wease a lot when reclining in bed after last PM dosage.

    I didn’t realize that the pump could tip over without an issue when plugged though. I’m 67 with a very thick head of hair which is suddenly thinning quickly and wonder about Tyvaso. I also take Adcirca though for PHT.

    Went into Boston last week and had a pretty good walk test and Echo. Heart is holding rather steady. The whole experience is somewhat difficult for me to judge myself though as to “feeling better”. Maybe I’m feeling a lot better than I would have without Tyvaso.

    Thanks for the posting!

  7. kara

    Hi William,

    I’m glad you’re doing well. Over time as my condition worsens I’ve had to increase my dose — I’m up to 15 breaths four times a day now. The coughing is still annoying but nowhere near as bad as when I first started.

    Take care!

  8. kiki

    I started 5 days ago and am wondering when I’ll start being able to breathe better. Side effects aren’t bad at all but breathing and oxygen saturation isn’t better at all. The CVS pharmacist said it can take 2 to 3 months and the CVS nurse said I would maybe feel a difference in 2 weeks. I’m so confused!!! Help!

  9. kara

    Hmm, you know, I’ve never noticed it HELPING any of my symptoms. As far as I know it’s just slowing down my decline. I hope it helps you, though! Good luck :)


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