Monday morning I got a call from TGH that my appointment to be listed will be June 9th. That day I will sign my papers with the surgeon, get my pager, and be listed officially. I was happy to get that time. A week from today. Very good.
Well this morning, I got some bad news. Threw me for a loop, to say the least. The same lady called me, and said she had some conflicting results in my blood work, that will not allow me to be listed for 8 weeks. My heart sank. She told me that they found out that I was never exposed to chicken pox. Actually I was exposed many times in my life, but I just never got it. At first the surgeons thought it was nothing to worry about, since the stage of my illness was severe enough to list me quickly. Then they learned that I am about to have a baby, and a young child in the house, and me being immunosuppressed (this is in the future when I am at home with a 4 year old with my new lungs) will be bad news. So, what this means, is I have to get the chicken pox vaccine. There are 2 to get, 4 weeks apart. 4 weeks after the second vaccine, I have to get blood work and then I will get listed.
It was not a good conversation. She felt badly, especially since she just told me that the surgeons want to get me on that list quickly due to my health. Now I have to wait 2 months. It's a bit of a heart breaker really. I can't really believe it.
It looks like I will be listed at the same time that our little girl is born. I am quite upset about it, but there is nothing that we can do about it. I always think about the various ways that my CF clinic can make this process better for us. It just seems like there are a few small things that can be taken care of much earlier in life, when I was better and when 2 months did not mean this much. I could have done this vaccine 2 years ago, 10 years ago.....if I just knew. That, along with my rare blood type, I think I should have been listed sooner. I should have received a medical degree, and been my own doctor, since that's what it ends up being anyhow.
Anyhow, I can't dwell, going out to get my chicken pox vaccine.
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9 years ago
10 comments:
Ugh! Who would have ever thought? I know this seems like a setback, but I truly feel that the Universe aligns and the right lungs come when they are supposed to come. If it's two months later than thought, then so be it. I questioned the timing SO many times while we waited over 2 yrs... But you will see, they will come when it is right and they'll be perfect.
Hang on, Cyster.. I can only imagine all the planning/timing going on in your head, esp. with a little one on the way (yay!), but it will be great, I just know it.
You're right that it is not the best news in the world, but it's certainly better than a sharp stuick in the eye, or no lungs at all. Hang in there. And like Sara said, the perfect pair of lungs are on there way!
Ronnie
Big hugs Nat. You will be listed - that's what matters. Keep your chin to the sun Bella. Just remember - you are meeting your daughter next month. That's miracle #1 and #2 will follow shortly after.
I'm sorry about the unexpected change in plans. That's rough but like the others have said, the right lungs will come at the right time. And now you'll know you'll be safe from the chicken pox when your daughter comes home with it from nursery school.
Hugs to you.
GOSH - will it ever end??!!! I SOOO feel for you!
But i do agree with everyone above - at least you get listed AND you wont have to worry about chick pox when the baby gets it!!
Oh sweetie...I'm sorry. Hang in there! It will happen at the right time; I promise!!! I know this was not news you wanted to hear...Try to keep your chin up. Praying for you!!!
URGH, that's so frustrating! I'm sorry for this set back, but I'm glad you voiced your true feelings, when it's something that could've been prevented if you'd only known it's just mind blowing. I'm hoping that, like the others said, this just means that the right lungs will be aligned soon after this next 8 weeks. Keep that baby girl in your thoughts, but don't be shy about sharing all your feelings good, bad or indifferent!
Oh cripes I just commmented about how excited I was for you as I read the earlier post first. I'm sorry you have YET ANOTHER delay, your right this oversight should never have happened.
Gosh, I'm just so sorry. This totally sucks for you but I'm glad your able to keep up the positive spirit. I guess it's not possible to get the vaccine after you get new lungs eh?
Shit, I feel so low for you right now, I'm just so sorry. Hang in there...next month your baby will be in your arms, you'll have so much distraction that the time will fly by and then you'll be listed and well...have a whole new life soon after!
Oh no!! I will def be praying for you:)
I couldn't find your email address, so check out my blog today...http://acure4lilchris.blogspot.com/2009/06/please-read-seeking-cf-research-panal.html
You may want to join:)
M
I am very sorry to hear you news! I am pretty sure there is another test to determine if you simply have the antibodies to chicken pox already (immunity) rather then had them, which they probably did. There is also a small percentage who will not show up on blood work (slightly different antibodies then the standard test--which sounds like it may be you). You may want to double check with them what happens if after the vaccination you still do not register immunity on their standard blood test.
Also, they do not recommend the varicella vaccine for people with aliments such as cancer, leukemia, who have received blood products in past 6 months or have or are taking high doses of steroids (including asthma) as you may get severe chickenpox with complications from the actual vaccine. Not sure if this applies to you but thought I'd give you an FYI.
I really hope that this all goes well and that you get put on the list very soon. Continue focusing on that baby of yours as I'm sure that will make everything so much easier to handle. You are in my thoughts and prayers!
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