Today has been a hard day. I went to clinic yesterday and had a lung function of 21%, so I'm back on IV's again. This time I will be doing home IV's, since I choose not to be in the hospital. So that's better, since home is home, IV or no IV.
As I went on facebook this morning I found out that a CF patient that I had bumped into here and there at clinic had passed away, after 10 months with his new lungs. It's such a sad story, and made me upset this morning. There are all these wonderful stories that I read about through my Blog about transplant, (Heidi!! Christi!! ) and as much as those lift me up, there is always the story of that one that didn't work. J was very young, much younger than me (I think about 8 years younger) and it breaks my heart that no matter how hard he worked and tried, he still lost his battle. It is the reality of CF, and the reality of tx, that sometimes things just don't go to plan. What a terrible realization.
I always see the world in the different way when someone I knew of from the clinic passes away. Though rarely is it someone that 's close to me, the thought that someone that had CF ended their battle in such a way is terribly sad and terribly depleting. The day seems darker, and the world seems sadder. Everyone has a mom, a dad, or a sibling, or a wife or a husband, perhaps even a child that will miss them. Everyone of these people had dreams, and wishes, and lives to lead. The thought that life is this fragile feels like vertigo to me. Completely impossible to understand and experience without shaking your head at life's tragedies.
Today, was just one of those days. I wish for tomorrow to carry more light than dark in my heart. I rebound quickly, I have to, since I am fragile, I have no time for down time. I pick myself up and say it's enough of those thoughts. The sun is out today, and my daughter is growing in Beth's belly.
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6 comments:
Hugs to you on such a hard day.
I'm sorry to hear about your friend. There are definitely a lot more success stories than the others, but it's still so hard when we hear about the ones who fight so hard and don't make it. Something I'll never understand.
Hang in there girl. Sending you tons of hugs and prayers.
Im so sorry to hear about your loss.
Im sending lots of smiles and hugs to you right now!!!
Boo for low functions!
Im praying they shoot up with the quickness.
I am sorry to hear about your friend. It never gets easier. Hang in there and just try to think positive! Christy is right, there are a lot more successes than failures. But, I also know how scary it is when you are about to undergo something like transplant. Chin up! Thinking of you today!
This really touches me, esp. since I am a little over 10 mo. post tx also. I know it is scary not 'knowing' how you'll do after tx, I felt the same way, but you sort of just have to go for it and know that there are SO many things it adds to your life and concentrate on those..
And you have one of the BIGGEST things to look forward to!!... but you know that already! I wish I knew why some tx's work while others don't do as well. I know the tx docs wish that as well and even at my hospital they are doing a study (that I'm in) on trying to predict who detecting rejection w/ a blood test vs. an invasive bronch.
ps. I was also at 21% when I was transplanted... hang in there Cyster.
Just wanted to let you know I'm thinking of you and your friend today, I can't imagine how unbelievably hard this must be for you. Hugs and love and good thoughts all for you.
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