UCLA Visit
I don't really even want to write this. I do want to keep you updated on my health though, so here we go. I NEED TO START USING SUPPLEMENTAL OXYGEN. I went to UCLA yesterday and did a 6 minute walk. The nurse had to ask me to sit down 3 minutes into it because my oxygen saturation went down to 83%. I have not had a problem saturating oxygen so this is new. This is just another little step down in my health. The good thing is that I don't need oxygen all of the time, just during activity or bad days. I will continue to have good days and bad days. That's just how it goes. Dr. Lynch (the surgeon who will perform the transplant) says I definitely need a double lung transplant (as we all have known) that is not the question. The question is when. We (and the Dr.) are waiting for the girls. We are giving them as much mommy time as possible. Dr. Lynch does not like to do transplants on mommies. I am able to wait because I still do have good days and am even happy on my bad days (mostly). Until I can no longer be happy or tolerant of the bad days and don't have good days I will not have a transplant. There is no time frame that the Dr. or we have, it could be a day, week, month, or years. I need the oxygen to preserve my heart. Thus far my heart is in good condition. I will soon have another EKG to make sure. I was once again told that I am a "unique" case and not even the health insurance has a code # for what I have. So tired of hearing that! So the way it goes is, they will continue to monitor me closely and frequently. Again I have to make sure I don't get sick, stay home on my hard days, and thank God for ALL of this. Right now is an awesome time in my life. I get to focus on LIFE. I get to know that right now really counts and enjoy it. I just really hope and pray that on my bad days I can be patient with my loved one's and understand that they are going through this too. So yes, you may see me with a little clear tube around my face but it is still the same me so don't worry. I have more to write about this but I think I still need some time to process. I love you!
6 comments:
I'm sorry to hear that. You're right, though. This has changed your priorities and focus toward the Lord.
He will remain faithful and strong in your life. You are an inspiration to me on how I should refocus. Thanks for that.
Psalm 103
1Bless the LORD, O my soul,
and all that is within me,
bless his holy name!
2Bless the LORD, O my soul,
and forget not all his benefits,
3who forgives all your iniquity,
who heals all your diseases,
4who redeems your life from the pit,
who crowns you with steadfast love and mercy,
5who satisfies you with good
so that your youth is renewed like the eagle's.
When they tell you again that they don't have a code # for you Julie, tell them you don't want to be a number anyway ;)
Big hugs as you process this new information. Always thinking about you and praying!
Well, can you at least tie a pink bow on the clear tube or something? I might have some stickers...
It is encouraging to me that even the doctors are on God's Time (they just don't call it that)
i already said we are going to paint it pink and put feathers on it and bedazzle it.
tara
Hmmmm. Clear tube huh? I guess it will go with all of your outfits then. Remain focused and your eye on the prize my friend. You are an awesome cheerleader for the rest of us. God has given you some amazing gifts, physically, emotionally and spiritually. It's so great to know that you are not taking them for granted. I Praise God for you Julie, even on the bad days (although I do wish that you didn't have to go through them.) Love you! Amanda
Dig the tunes sister!
You know that we pray daily for you all....and so many times I stop myself and think how unfair it is that you are having to live this....
I was led to Ecclesiastes 8 and 9 this morning....how life is unfair (in my opinion) so many times.....however, through it all we must remember the Creator.
Still trying to wrap my head around all of it.
I love you!!
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