Saturday, April 16, 2011
Back Again
As I sit here listening to Badi Assad on my iPod, her music relaxes me. She is a really cool Brazilian jazz singer. http://www.badiassad.com/2009/badiassad.php?language=en I learned about her by chance while living in the San Francisco Bay Area and bought one of her CD's in a music store. There is much passion in her music and even though I may not always understanding her lyrics, her music enlivens me and relaxes me at the same time. Sometimes I just get different songs in my head, and they will bring up old memories. I'll be humming or singing to myself which I'm sure some people might find strange as my voice and breath aren't the best in the world.If one song could sum up the past few months, "Love is a Battlefield" comes to mind. It's symbolic. Sometimes I feel I'm fighting CF, yet CF is a part of me. Why fight myself? It's been a tough winter and now spring. I was in last month in March when it was discovered that I retain CO2. I was in ICU and IMU for almost a month and boy was that both exhausting and scary! I could write many details of what happened, but quite honestly the days have all blended together. The result is that I am now using Bipap at night to let my body rest and get the CO2 out of me. The home model is much smaller and quieter than the hospital model. Things were going well at home for the first few weeks and then I couldn't breathe even with the Bipap. My husband had to call 911, and I was sent to the local hospital a week ago. I was eventually transfered to where my CF specialist is which is my usual hospital. All in all, I stayed out of the hospital for three weeks. And as my family help pursue the possibility of living lobe transplant, I am once again overwhelmed by people's generosity and kindness, such a humbling experience. Your love and prayers have helped me get through last month's and even this newest flare up again and again!
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I've been "lurking" on your blog for awhile now and I just wanted you to know that I am praying for you and wishing you the very best outcome possible. Hugs to you my cyster :)
ReplyDeleteHi Sharri, this is Katrina's husband Philip. With a heavy heart if you don't already know, Katrina passed away on June 9, 2011. We had all the donors who matched ready and only five day more to go till she got the transplant and a second chance.
ReplyDeleteUnfortunately the insurance we had let her down. Genetically Handicapped Persons Program (GHPP) which is through the government. They took three months to test one donor and would not test another till the first one was finished testing.
We had 150 donors willing to be tested to see if they were a match. Three months times 150 equals four hundred and fifty month. Divid that by twelve months, equals 37.5 years to test every body. Katrina didn't have 37 days, and GHPP new it...!!!
This has to change so the next person doesn't die by government insurance. Soon I will be asking people to write letters to the President of the United States of America and I will be submitting them to a local news channel and then to 60 Minutes for an investigation to be done.
I cannot let this happen to one more person. And I can tell you that one of the donors has already been contacted by another family in the same situation Katrina was in. God rest her soul, but Katrina would want us all to make sure she didn't die in vain....
I hope you tell everybody why she really passed.
With all my heart,
Philip Howell