Breathing Deeply: My Life With Cystic Fibrosis

I've been home from the hospital for more than 24 hours now. I was admitted a week ago Thursday after going to the ER for shortness of breath and low oxygen saturation. Thank fully I have a pulse oximeter here at home that I use, so my husband was able to check my sats in order to figure out how bad of shape I was in. My sats were in the 80's and I was having a hard time doing anything normal. Even walking across a room or brushing my teeth made me severely out of breath.

The visit to the ER was actually a productive one. They gave me a nasal canula for oxygen right away, and I felt some relief. Then they whisked me away for a chest x-ray which showed that I had developed bronchiectasis and pneumonia. They accessed my port-a-cath and started me on IV antibiotics and fluids to help. I was so impressed that I was given Merrem and Tobramycin in the ER. Eventually I was admitted to the hospital and taken up to my usual room on the 3rd floor.

For the first couple of days I needed the oxygen round the clock. I was so exhausted that all I could really do was just lie back and let the IVs do their work. My team of doctors included an intern, a resident an attending, and my CF specialist. The intern, resident and attending actually did a good job of meeting my needs as a CF patient. So often I feel like I have to reinvent the wheel with the new doctors. It was nice to have some medical professionals who seemed to at least have a working knowledge of CF. What they didn't know, they asked, and they were up front about asking me to describe what was normal for me and how I like my treatment to go.

By the third day I was only using oxygen intermittently. The respiratory therapists came to administer my treatments of nebulized medications and percussion therapy. They were on-time about 80% of the time, which was really great for keeping me on a set schedule. I've been able to continue with my own therapy here at home with a similar schedule.

I had pulmonary function tests on Friday, Tuesday, and then again Friday (yesterday). My FEV1 was horribly low on the first Friday--only 1.38L. By Tuesday it had improved to 1.78L. The doctor said that once I got up to 2.1L I would be allowed to go home on IV antibiotics. Yesterday was the big test. My first few PFTs were only 2.08L. Then, on my last try I finally got a 2.12L. I was THRILLED! Of course, being told I could go home was still only part of the equation. The rest was actually getting all the paperwork signed and the home health care people scheduled for a delivery.

Miracle of miracles, the whole discharge process only took a few hours. I was given one more dose of Merrem and Tobramycin before I left, which took an hour and a half. We were home by 5:30, and the home health care people made their delivery of medications and supplies before 8:00. I couldn't believe it. Usually it's like herding cats to try to get that home health care stuff arranged.

I'm supposed to continue on IVs until Thursday. I have an appointment at the CF clinic on Wednesday to check on my progress. I'm so thankful that everything went so smoothly. It brought me a tremendous amount of peace of mind to know that things were being taken care of in a timely manner. My only complaint was that the nurses had no clue about dispensing my Pancreacarb enzymes (why is it so hard to understand that I take them WITH MEALS?) but really that's not a new problem.

Being back at home is wonderful. I'll stay home next week and return to work the week after. My doc has recommended that I do what I can to take it easy, so I am.