The couple that does lung function tests together stays together .. For a TBD length of time
Today was a rough day. It's been a roller coaster of of ups and downs the last few weeks.
Today I got to experience firsthand pulmonary function testing. And I can now say that I hate them more than I did before. Watching Steve go through them the last 7 years has been a learning experience just from watching. But to actually do them is a whole different thing. I even started c...rying during one of them because I was just so done from trying.
I have let my health go for the last year-and-a-half. Because one I had other priorities, two I was scared of the stupid tests and three I was just being lazy. Okay being lazy probably wasn't the right option but nevertheless I went and got them done today.
I'm grateful to our pulmonary therapist or whatever you call them for helping us laugh thru the tests. She said we are doing a great thing by educating and sharing Steve's story.
A dear sweet friend told me the other day how much she appreciates us sharing and how she has laughed and cried with us along the way .
Our whole goal of sharing everything from the very beginning of this was to be able to educate people and show them that there are things that can be done so they don't ever get to this point. To show them the alpha-1 is a rare genetic disease but can be treated , not cured, but can be treated to help slow down the symptoms. We have wanted people to be able to laugh at this, cry with us, learn and be educated with us along the way. We wanted people to know that transplants do save lives. That being a donor is one of the best check you can ever mark on a piece of paper.
We are so grateful for our donor. Every day we think about her. We think about her family. And we try to live our life best because of her. We're grateful to you for following our story and for reaching out to us all the time and checking in on us and seeing how he is doing and offering us support still. We know that things are changing for him. We are waiting for some more testing to be done then some more results to come back in.
It a tough time. Not gonna lie..
I might cry. But we are strong. We have each other.
We have you .. We love you
Today Steve and I went to an Alpha 1 support meeting. It's been a year or 2 since we have done anything with the Alphas around here. Some times I forget he has this nasty disease that caused him to need a bilateral transplant. I am so grateful we did go because we were surrounded by people who understand this disease. People that might go thru what we have gone thru in the near future. We got to meet people who have been following his transplant journey since day 1. It wa...s an emotional morning to say the least. We got to listen to the amazing Dr , who is head of the transplant team , talk about lung transplant . The pros and cons. I got to hear my husband talk about his transplant and recovery so far. I totally cried when he talked about the caregivers. We got to hear from our dear friend who is 8 months post transplant since his 2nd bilateral transplant and I cried yet again. He and his wife simply amaze me. They are so strong.
This afternoon we were blessed to be able to attend one of the most beautiful wedding receptions ever. Ariel, you are the most beautiful bride , inside and out. You and your family mean the world to us. You have shown us uncondional love, acceptance and kindness. Ariel and Javi we love you and are so happy for you . You are perfect for each other. You will know which gift is from Savvy as soon as you see the card.
I can't even articulate the right words to share my feelings when you opened up the dance for all daddy's and their daughters.
This moment was priceless for us as I dont know if Savannah will get the chance to dance with her daddy at her own wedding. For you to share your special dance with all of us.....I can't even say how it made me feel. I bawled like a baby.
Tonight I got a much needed visit with a dear friend who brought her amazing salsa over and gave me a hug. She can see the changes in Steve before I even pointed them out. She knew. She knows. She gets it . She listened.
Steve is having some issues. Yeah let's call them "issues" for now
Waiting on test results from lab work yesterday.
Praying it isn't what we think it is. And praying that if it is we can fix it.
Lots of praying .
Lots of tears.
Its been a beautiful, memorable day ..
One year ago today we were here at the U of U hospital for his 1st dose of Solumedrol. Super steroids to stop rejection
Kinda creepy that popped up in my news feed today .
Here we are again. Checking his pfts and see where he is at . Praying for good results from today's visit.
1 year post transplant update !!
Happy 1 year lung-versary Teve !!! WE did it !!!
Last update for awhile on the Team Teve page and its a long one.. so run now if you want ..
#11 months post transplant ..
What can I say .
Pictures and memories created by this family aren't forgotten .
We are very blessed . Each and every day we are reminded of it with everything around us. Our family, friends, and jobs. ...
Take each day and make the most of it ..
Family is everything...
It's pretty sad when Steve says to me that he feels good today ( We all remember what happened last week, right? )
and we both say oh that means something is about to happen
It's weird because you become accustomed to things not going right. Or him not feeling well. Or him not having good days. So I'm going to take this day of him feeling good and run with it....
What shall we do ?????
Thank you everyone for all the amazing love sent our way with this lastest episode of "What Can Steve Possibly Go Thru Next ...and Survive" I'm pretty sure he is a cat with 9 lives
He is home and back at work. Its gonna take 2 collapsed lungs to keep him down. 😛
His favorite place to be. Not. Number 13 bronchcoscopy
His has CMV again and we are back to figuring out how to afford the dang medicine.
I don't get how the insurance will pay over $3800 for 2 weeks and then charge us $750.00 . Why not just do us a solid and pick up the rest of it ? Why such a random dollar amount ?
The Dr. said he had sexy ankles a few week ago. more like cankles today.
The swelling got bad enough we had to come in. He can barely walk..... and here we are....
CMV ain't got us , him, down yet
Checking for DVT today
Jealous yet ?
10 months post transplant and he is rocking 85% lung function. Best it's been in months. All the blood work came back good. Still healing well from the surgery.
Bronch #11 coming up next week.
One day at time all in the right direction.
I love leaving the hospital together with him not being admitted 😁