A New Journey… but a Medical One This Time…

For ease of getting the basics out there, I'm copying and pasting the posts I did on the Book of Faces. So if they don't make 100% sense, that's why. So first post will be the introduction to the issue. Then I'll make a post to give you basic updates. Then I'll do a post to get us to today.

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[FB Intro Post]

So it’s time for a new health update. Brace yourselves… it’s gonna be a long one. I mainly just wanted to let my family know what’s going on, and any friends who are interested.

So as I’ve posted before, over the past couple of years, my lungs have taken quite a hit. I’ve had multiple pulmonary embolisms. Covid reeked havoc on my lungs. I’ve had pneumonia several times, and that has done permanent damage. And all of this is on top of my pre-existing asthma. So over the past few months I have been having more and more issues with my breathing. My lung capacity has diminished. I’m getting winded easier than I should be. And things are just generally harder for me to do. I went and saw a doctor about this and after some tests, they diagnosed me with pulmonary hypertension.

We tried meds to help control that, and, despite our best efforts, they were not alleviating the symptoms of that properly. After looking at all my scans, my cardiologist here (because the damage to my lung is beginning to damage my heart) determined that three of the four lobes of my lungs are damaged. My doctor thought that the most appropriate thing to do was to refer me over to Duke because they have a doctor that works specifically with these kind of things.

So I had that appointment at the beginning of November and the doctor there diagnosed me with chronic thromboembolic pulmonary hypertension (CTEPH). There are kind of three different treatment options for it. One is to give me medication to control the symptoms, but the condition will get progressively worse, and will most likely end in me needing a lung transplant at sometime in the future. The second is to go in and do multiple balloon angiograms to try to dislodge the scar tissue in my lungs. However, since the damage is extensive, there is no guarantee that would work. And it’s very likely that it could cause more problems than it solves. The third option is surgery. The operation is called a pulmonary thromboendarterectomy (PTE). But essentially, they would put me on a lung and heart bypass, cease blood circulation in my body and “freeze” my body to preserve my brain function, and go in and cut out and remove the scar tissue in my lungs. This is the only way to “cure” the condition.

So after discussions with the people closest to me, I’ve come to the decision to go ahead with having the PTE. So this surgery is only done at five or six hospitals in the United States. And luckily, one of those hospitals is Duke. So we started moving forward on getting things scheduled. I go into the hospital on the 18th so I can have a CT done on the 19th (I’m allergic to the contrast, so I have to have prep before hand to try to mitigate the reaction). And then I will have the surgery at some point that week. It will be at least two or three days after the CT before they go ahead and schedule me for the actual procedure.

So that’s where I am. My parents are coming up the weekend before my CT so that they can be at the hospital with me for that and be here for the surgery. After they finish, I’ll be in the ICU for 3 to 4 days, and then I will get moved to a cardiac monitoring unit for 3 to 4 days. so I’ll be in the hospital at least a week probably closer to a week and a half. Unfortunately, that means that I’m going to be spending Christmas in the hospital, and also possibly New Year’s in the hospital. After that, physical recovery will be 4 to 6 months and I will have to do cardiac and respiratory physical therapy for at least a year.

Luckily, I have some pretty amazing people in my life who are going to help me out. The boyfriend is going to take care of Mackenzie for me while I’m down because I can’t risk her jumping on me and I won’t be able to care for her properly. The best friend is going to help me out and let me stay with them for a while while I recover, because I’m not gonna be able to do much for myself at the very beginning. The terrific Katie (Rocco’s mom, for those who are familiar with Kenzie’s boyfriend) will be handling the monster while I’m in the hospital. She’ll have pupsters for Christmas and New Years and is a total life saver! My parents will be here for the first part of my recovery, and will help me out. But things are going to be a little tricky at first.

I’m not gonna lie… I’m pretty scared. The surgery is rare, but I am quite literally in the hands of one of the best surgeons in the world to have this done. I’m going to be at a fantastic facility with amazing doctors. But there’s still a chance that a number of things could go wrong. So I could use some moral support and when I have a surgery date, I will definitely post it. I’ll try to keep you all up-to-date as best I can, and when I have my surgery, I will work with my parents and my framily to push out updates as best we can.

So there we are. Yay for having another medical anomaly!! 🙄😬🙄😬

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So that's the beginning of the story. I don't necessarily have item related pictures, so you get pictures of my darling puppy Mackenzie.

Meet Mackenzie Mae!