I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Sunday, May 16, 2010

Daily Medications

I just thought tonight I would follow up a little from my last post. Forgive me if it doesn't make a ton of sense considering I am a bit exhausted from performing 3+ hours of Improvisation tonight. To be quite honest, I blog more as a release for me than anything.

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.
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:

Jack Phillips said...

Very informative thanks. I have actually wondered what the trade-off was.

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen