Today was my first clinic visit since I have been back from the hospital. 10 days later, my lung function today was 26%, 0.94L. So the good news is that things are basically the same, and it looks like I am able to be home without getting worse. This is good news.
While I was waiting for the appointment, I got the call that I have been waiting for from TGH regarding my assessment date. I was so happy to hear from them. My appointment for assessment is going to be during the week of May 19th, which is really soon! I am so happy that I am not going to wait for months for that appointment. This means that during that week of the 19th I am going to finish up those tests that we started at SMH. Once those are done, I wait for a month to get listed. Which means....most likely I will be listed on, or within a few days of my 30th birthday!! Oh what a gift that will be.....well may be not what I expected, but I will be very glad to be on that list waiting. Very glad.
Home had been okay. Emotionally up and down. But physically I feel okay. I am getting more and more used to living with oxygen and more and more used to going out with it. I guess with time everything gets better. Easier and better. Overall I think that if my health does not get worse before tx, I will be very lucky. If I stay like this I will be very lucky. But time will tell how long I will be on the list, and how tolerant I will be of that wait. I think to myself every day that this is not forever, this is a finite time, and it will come, and things will finally change for the better. I embrace that thought every day, and try to ignore all the other thoughts looming in my head.
Our little baby is growing inside Beth every day. and on Thursday we have our 3D ultrasound that I am very excited about!! I can't wait to see more of her. I think Thursday will be a great day. I will post pictures and show her off when we get them!!
I don't have much more to add. I am quite tired from today's clinic, that always ends up being quite a long day. My next post will be much more interesting on the baby front. Can't wait for the world to see her as we get to on Thursday.
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5 comments:
Hi Nat:
So good to hear an update from you. I have been thinking about you. Awesome news about the ax date! That is soon. Try not to think too far ahead lady - one day at a time! So cool about your 3D u/s. I cannot wait to see your beautiful little girl!
Good news about the appointment and moving forward! I'm excited for you!!! Keep up the great attitude and as always, my thoughts and prayers for you and your family.
Ronnie
Hi Nat...awesome news...that is SO amazing that you will have new lungs soon! 2009 will be REALLY a NEW year for you..or is it year of NEW~!!!
xox
Mark
Hi Nat:
I tagged you in my blog so if you are feeling up to it - check it out!
Oh your going to have so much fun at the 3D ultrasound! Can't wait for those pictures....
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