To be honest, it's been stressful and overwhelming for me since I got out of the hospital in beginning of March. Usually my writing helps relieve stress for me, but this time, I've been sidetracked learning about new health issues for me. A lot has happened which I hope to catch up on, here and now. Gosh, where do I begin . . . I have a feeling this will be a long one . . .
I last blogged about being in the hospital. Once again, it all began by me catching a cold from the kids in February. Even Terry got it this time, Jen was the only one to escape it this round. And of course, as I was in the middle of the cold, I had a clinic visit Wed March 3rd. Dr. R was not sure if I truly was just having virus issues or if it was leading to an CF exacerbation. It was hard to tell at this point, since it blurs together into one big sickness. But my FEV1 (lung function) was down to 45% from 48%. He put me on oral Zyvox, a powerful antibiotic that targets both my MRSA and Steno, hopefully to keep it from settling in my chest.
By the weekend, I was toast, very sick, a coughing couch potato and useless. I shot off an email to my CF nurse on Sunday evening. First thing, Monday morning, she called me to come in for a check up, packed and prepared for admit, just in case. In case? LOL, I knew better, I spent all day Sunday packing my bags, just knowing where I would end up. Long before my email ever went out. We cystics just know these things, Terry knew it too, that I had hit the wall. Our bodies tell the whole story of when to cry uncle.
My FEV1 had fallen to 41% in just a few days. The call was made to the hospital and off we went, across the street to check in. One of my nurses commented that, "I must hate when I have to go in." I told her, "no, that actually when I feel this bad, I just want to feel better and I know this is the only way I will." She said I had a refreshing attitude, unlike many of the younger cystics who fight tooth and nail going into the hospital.
I was put on Zyvox IV, and Minocycline oral. I took full advantage of staying in bed and resting while I could. I didn't seem to be bouncing back to feeling good right away this time. After 9 days, I felt good enough to go home and finish my IV course.
Went back to clinic on Mar 22 for a recheck before the IV was to finish on the 23rd. My FEV1 had only gone up one measley % point to 42%, not good news. Dr. R ordered another week of IVs plus added in oral Levaquin. And to step up any exercise I could tolerate, even trying to walk every day and boost my lung function up a few %. I promised I would.
By then though, Dr. R was suspecting that something else was brewing, he ordered some tests for the next week. Lung CT revealed a severe, progression in my left lung, which I knew because of how I felt. It is at end stage disease, where my right lung is still moderate despite pulling the lion share of my breathing.
So then he ordered a Echocardiagram, an ultrasound of the whole heart/lung area. The results were NOT what I wanted to hear. I was diagnosed with Pulmonary Hypertension (PH), abnormally high blood pressure in the arteries of the lungs. The PH is a secondary disease caused by CF. Because my left lung is almost non functioning, my right lung and heart are working overtime trying to keep up. My heart is enlarged, lung arteries constricted and working too hard trying to get oxygen in the blood. My doc referred me to a doc who specializes in PH, just last week. I have yet to see her.
Of course, as soon as I learned about my PH diagnosis, I googled like crazy trying to learn as much as I could. I wanted to be somewhat informed about what I was faced with before I see the doc. There was not a whole lot of info what part PH played with CF, so that I will learn from my docs. But I do know, that standard therapy for PH is oxygen, to take the stress off the heart. Oh boy.In the meantime, this whole last week has been miserable, fighting bugs again and being extremely short of breath (SOB). I got to where I couldn't walk far without coughing, heaving, and trying to catch my breath. The stairs loomed as my worst enemy in my own house. By Tuesday 4-27, I emailed my nurse, I had hit the proverbial wall again. She emailed right back, but unfortunately, the hospital was full with not a bed in sight. Great. She told me to hang tight and wait for a call when a room becomes available. Finally, USC called Wed evening, and here I am, admitted again.
In light of my recent PH diagnosis, my clinic decided to admit me to start another round of IV antibiotics and do more tests for a better understanding of my PH. The PH doc is supposed to see me in house, hopefully soon. They also want me to have an invasive diagnostic Cardiac Catheterization where they put a catheter up the large vein in the groin, thread it into the right heart and shoot meds in to test lung pressure to determine severity of the PH. Ugh, not looking forward to that!
I have also been researching O2 options. There are many options and overwhelming at best, taking on another challenge unfamiliar to me. I'm actually not too bummed at the O2 idea, which surprises me. I fought getting an IV port for so long, as a sign of 'progression.' I soon realized that fighting for what I need is ridiculous, lol. My port has been one of the best decisions in my CF care. Honestly, I just want to feel better and breathe for a better quality of life. If that means I have to have O2, than so be it. :) I'm prepared to be released with O2, but if I don't, then fantastic. Better be mentally prepared than not. I guess I've finally learned to roll with the CF punches. Besides, the last thing I want to do is damage my heart, making me ineligible for transplant, or needing heart/lung transplant.
In a nutshell that's the deal, at least for you, the readers. For me it's been another long chapter in my journey. One that I hope calms down soon, and allows me some normal life for a bit.
