Okay, so 'the other side' as in the other side of death. . . life. I have blogged a lot about life post transplant, so I will try to take a different approach. Let me compare what my daily routine and health mantainence pre and post transplant. That was also a question I thought about years before I had to make the decision.
Life with CF LUNGS:
Medications: Pancrease MT 16 (4 with meals), Boost Plus (3 per day), ADEKS vitamins, Ibprofin for joint pain and head aches. I was actually on a minimal medication regimen.
Nebulizers : Albuteral 4 times a day, Pulmozyme 1 time a day, TOBI (off and on), hypertonic saline 7% 2 times a day.
Chest PT/Physical Exercise: Vest- 2 times a day for 20 minutes, when I became too sick to tolerate it, I preferred manual CPT. I enjoyed several forms of physical therapy. Riding horses, swimming, and going to the gym to name my favs!
Other Meds: Flonase 2x day, Advair 1x day, albuteral inhaler as needed.
Hospitalizations: I was always on a regular schedule of being hospitalized for 10-14 days for infection control every 6-9 months. Of course hospitalizations became more frequent as CF progressed and I became more ill. In 2007 I was hospitalized every 3 months. . . Although I never really had much improvement, I didn't want to go in more frequent than that because I didn't want to live in the hospital and miss out on my life!
Oxygen/Etc.: I was put on night time oxygen many years before I became really sick. I was on night O2 probably 2 years before I was put on full time oxygen. I was on full time oxygen in April 2007 (the week of my 28th birthday). I went from needing 2-3 liters up to 6-8 liters. Even then I was not getting enough O2- my sats got to where they were never really over 87%. I also had to be put on a bi-pap machine when I slept. It was to help release the Carbon Dioxide trapped in my body. I hated it at first, but soon loved that I had it & even got to where I used it several times a day and all night.
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LIFE NOW:
Medications: Creon 20 - 4 with meals, Prograf (anti-rejection/Immune suppression) 3.5mg 2x day, prednisone 5mg day, Bactrim (oral anitbiotic) 1x day, Protonix, Blood Pressure meds, Vit. E, Iron, Magnesium, Calcium, blood thinner 1x day. Prandon (helps with blood sugars) 1mg with meals.
Exercise: I workout several times a week and keep active.
Nebulizer: I am only on inhaled antibiotics alternating much like TOBI, however, right now I am in the process of changing antibiotics. So right now I am not on any.
Monitoring: I have to monitor my blood sugars, lung function, and temperature regularly.
That is pretty much it! It's seems like a lot of meds. . .but is actually very few and they are super easy to take (since CF taught me how to take pills).
Reflecting back the daily routine and the hospitalizations, it didn't interfere with my life too much. Maybe because CF was just something that was so integrated into my life that I worked around the care and management of my disease. But when compared to my routine now, It makes me very grateful for so much freedom from all the things I had to do to care for my CF lungs. Anyway, that is a comparison of THEN and NOW.
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1 comment:
Very informative thanks. I have actually wondered what the trade-off was.
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