So, What's Up With That Face Leash?

Us, being silly out on a movie date
Us, being silly out on a movie date

Today marks my one year anniversary of being on 24/7 supplemental oxygen. It’s been a frustrating, humbling, and boring year. At home, I have an oxygen concentrator (about the size of a large suitcase) with a 50+ foot tube that connects to the cannula on my face. When I’m out, I have a 2.5 ft oxygen cannister on a hand cart that I take everywhere. It is amazing what a short, fat woman on an oxygen cannister can get away with. No one turns you down. Everyone (except snippy medical personnel) helps you out, whether you want it or not. And that’s the humbling part. I’ve always been the one to help others but this past year and more I’ve been the one needing help, from my husband, from family, from friends, and from total strangers (like all the awesome medical personnel I have met this past year+).

The most exciting things to happen to me this past year have all been medical. Oh, and we finally got fiber optic internet which is so fucking amazing! It’s great to watch Netflix or Amazon movies without the internet stalling out. I can stream music, download an audiobook, and watch trashy TV all while checking email. I feel like I have truly entered the 21st century.

Anyway, as I’ve mentioned before Bill and I travelled twice to Denver to the National Jewish Health Center (known for their expertise in respiratory ailments) earlier this year so that I could get properly diagnosed. My New Mexico doctors had thrown their hands up in the air back in March, essentially saying they didn’t know what the fuck I had. Turns out I have CTEPH which can be caused by a few different things. But for me, it means that my body had been throwing small blood clots towards my lungs for some time, piling up in (and partially blocking) the pulmonary arteries (the veins from heart to lungs). They then hardened, like blood will do to form a clot. A year ago, I thought I was simply fighting a bout of pneumonia and asthma. Turns out I don’t have asthma at all, tho the two illnesses share many of the same symptoms.

For me, the CTEPH has caused a moderately high degree of pulmonary hypertension, which will be fatal in 6-10 years if I don’t have this big surgery to remove the blood clots. Pulmonary hypertension is basically pressure within the heart. My heart is enlarged and the right side is pumping inefficiently (quaintly referred to as right-side heart failure). Essentially, my heart is a pump under back pressure, and like all pumps in that situation, my heart will eventually fail…. unless I remove the cause of the back pressure (those pesky clots).  There’s only a few places in the country that will perform the surgery. So later this month we travel to the nearest and supposedly the best medical center to have this PTE surgery – San Diego, California.

It’s a huge pain the ass but it must be done. Through family we have house sitters, having cats and dogs (we rehomed the goats, donkeys, and chickens back in September). I have to get all my medical equipment ready for the trip. There’s bits and bobs of paperwork to do as well. I have 4 days of pre-surgery testing, after which the medical staff will give me my own tailored mortality rate concerning this surgery. Yep. Never a phrase you want to hear.

If all is as we expect after the testing, I’ll have an 8-10 hour surgery on Ground Hog’s Day, February 2, 2017. My sternum (breast bone) will be cut in half, my heart and lungs will be put on bypass, and then my body temperature will be dropped to a chilly degree I wouldn’t want to experience naked even in the best of circumstances. Then, when they are ready to remove the blood clots, they will actually stop circulating my blood for 20 minutes at a time. I will need at least 2 such sessions to remove all the clots (they circulate my blood in between to keep my brain functioning).

If you watch the video above, then you get to see these whitened, hardened blood clots they remove. They look like weird sea creatures, don’t they? I hope they take pictures of mine and that I get copies of those photos.

Anyway, once they put me back together, I’ll have 10-20 days of in-hospital recovery before they will release me to some responsible-looking adult. I won’t be allowed to drive, lift more than 10 lbs, lift laundry, etc. for 6-8 weeks afterwards as my breast bone heals.

All my doctors have told me how fortunate I am to be alive. In fact, some are rather gleeful at having a CTEPH patient. I’m told we’re rare, especially in the lightly populated state of New Mexico. They say things like: CTEPH is very difficult to diagnose… in a living body; I was lucky the pulmonary emboli (blood clots) were small and didn’t kill me outright; we have this incredible surgery to remove the clots, curing me of CTEPH and pulmonary hypertension. It took me a while to realize how lucky I was because it took so long to decline to this state, and then even longer to be correctly diagnosed.

Bill making me laugh
Bill making me laugh

I’ve had to give up quite a bit due to this illness. All my volunteer activities. My home business. My social life. My physical well being. Yet more than all that, this illness and my inability to carry my load has affected those closest to me. Bill’s work schedule has suffered. Our house has been a perpetual mess. We’ve given up the farm animals to make life easier (and they deserved better from us). This surgery could give me the ability to get back to my life. With that, I look forward to it.

10 thoughts on “So, What's Up With That Face Leash?”

  1. I have never heard of this illness before. Sounds like it’s a difficult one. You seem to have a good outlook on it. I’m glad they were able to diagnose you while you’re still alive and that there is, in fact, a surgery to make you better. I wish you the best with your surgery and recovery…it won’t be an easy one, but you got this. I’ll keep you in my thoughts and prayers and I’ll be sending some good, strong healing vibes your way. Peace out. XX:)

  2. You’re one hell of a strong (and cynically witty) gal and I’m positive you’re going to pull through. You have to because who else can I banter with?

  3. I will be thinking of you, as I have been since your mom told me about the surgery. It sure looks like the best scenario. I just know you’ll be back in the swing of life soon.
    Much love, Connie

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