one day at a time . . .

Part III

Here’s the continuation of MY STORY.  So if you’ve read Part 1 and 2, you know my first scare was explained in Part 1. Here’s scare #2. Back in 1999 I seemed to be getting sick more and more. I was working hard, managing the Year 2000 conversion project – aka Y2K. Remember hearing all the stories on the news on how everything was going to stop when the date switched over to 2000? Well it was my daily life at the time. We need to identify ALL programs that would be effected and plan out the conversion process. Sounds simple… Not really! Anyway, being a software development project manager was a stressful job, and having CF on top of that is really not a good combination.

Throughout 1999 I was getting sick often. My doctor suggested that I take a 6 week leave of absence to focus on my health. This was a very hard decision, as I was a workaholic. But I did it. I abandoned the project and focused on me. By November, my 02 sats dropped to 88 and my fev1 dropped to 31%. This was from 39% the week before, 42% the week before that, 43% 2 weeks before that and my baseline was 48%.

I could not breath. I would huff and puff just walking a few feet! Once my o2s dropped, my dr insisted I be admitted into the hospital. Now I ALWAYS do IVs at home. But, not this tine. UGH! She said she would keep me in the hospital until she sees that I’m turning the corner.

I was admitted. Now, the only ward that had beds was in the area that was for the richie rich! Clinton’s room was there when he had his heart surgery. So, it was a fancy area. It had a beautiful atrium. There was a piano player that would come everyday at 3:00 for “tea time”. A buffet of tea and biscuits and other stuff would be displayed daily. But the problem was… the richie rich people that were admitted here all had private nurses. So the nurses that were assigned to this section were SHMUCKS!

I hate being in the hospital. Mainly because the meds are NEVER on schedule. Now, here I am, admitted into this room, and I was waiting and waiting and waiting for my meds. I was fuming! I had to get up and walk to the nursing station. Sounds like no big deal – but I really couldn’t breathe. It was very difficult. I asked the nurses where my meds were and all I would get was, they are waiting. I argued with them, while huffing and puffing, and saying I need my meds, can’t you check on them, I can’t get out of this place until I start getting better. I was so pissed. Called my dr, crying, and once she heard – amazing, my meds appeared! From that point on, that nurse treated me like a queen! Ugh – I hate hospitals!

I was put on triple antibiotics, plus, IV steroids. Oh boy… The swelling I had was terrible! I got worse and worse. The congestion was more than ever. My dr began talking to me about getting on the transplant list just as a precaution. What I didn’t know about until months later was – she pulled my husband to the side and expressed that she wasn’t sure I would get through this one. OH MAN! I’m glad I didn’t hear that. I think it would have depressed me. But, I AM A FIGHTER and I was DETERMINED to get through this.

The transplant team did come to talk to me. The WORST thing that happened there was the SHMUCK that said to me… “Well, Everyone with CF runs out of gas”… I was speechless. It was so depressing and not something I think he should say. All I could think of was… WELL YOU DON’T KNOW ME! That’s it for the transplant talk for me…

Here’s a funny story. One day, these maintenance people came into my room asking if I was smoking. I was like – are you kidding me, I have a lung condition, I could hardly breath. SMOKING? And he insisted. Whatever… This happened a few times. Apparently something was setting off the fire alarm detectors. Everytime the alarms go off, the fire trucks have to be deployed and false alarms cost 5K a pop! One night, it happened again. After some time, we figured out that the mist from my nebulized colistin was setting off the alarms! So I had to have the nurses contact maintenance before every time I had to nebulize and they would disable the alarm for my room. Well, one day they did not disable the alarm and guess what… Alarms went off.. Fire trucks deployed.. My husband happened to be coming up to see me. He was locked out, because the alarms put the floor on lockdown. He overheard the nurse talking to the maintenance guy. He was telling her that I had to stop nebulizing the meds. She said “then why don’t you tell that to her husband right over there”. HA! My husband was like – are you kidding me. She’s in the hospital to get better and you want her to stop her treatments! OH NO! This was hysterical. Can you believe this! I can’t imagine how much the hospital had to pay in fines! I’m sure it was hidden in my hospital costs somewhere…

What I thought would be a 3 day stay, turned into a 10 day stay. I did finally turn the corner. My doctor was hesitant to send me home on triple antibiotics, but I insisted I could do it. I finished my treatment at home and I recovered! I did have to extend my leave of absence another 6 weeks. I ended up making a very hard decision. I decided to STOP working for good. I learned that my health was more important. At the time my son was 4 ½ and he needed me more. Work used to run my life. But, sometimes it takes a really bad situation to understand what REALLY is important. My health and my family became my priority. I have never regretted that decision.

I ended up back on IVs by 12/29. But over time, I retuned to baseline and continued to fight my fight. Turns out, the transplant team screwed up. They never listed me. Sounds weird, but we didn’t figure this out for about 2 years! Don’t ask. Apparently a new transplant team was assembled and I was eventually listed as non active. This was when the list was first come first serve. About 1-2 years ago, that changed from first come first serve – to most needed on top. So, I then de-listed.

I feel like I’m on a 10 year cycle. 1990 – was my Part 1 story. 1999 is this story. And 2009-2010 was a bad 18 months that I’ve discussed through my blogs. So, hopefully I have another 10 years before my next Life Lesson!

ps. turns out Y2K came and passed and the world didn’t end, software didn’t crash, and we all survived it 🙂

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