Wow!!! ... Is all I can say to start this blog. I am completely overwhelmed with the amount of love, encouragement, well wishes and support I received after posting my last blog. I (for lack of better words) "went public" with my health situation, something that has been something I've sheltered for so long. I heard from people near and far. I received emails and messages from people whom I've never met, from people I haven't talked to in years, best of friends and friends of friends, other people in similar situations ... and I can honestly say, receiving those messages, calls, texts ... literally propelled me into my appointment last week, so thank you to every single one of you that took time out to read my blog and send me some positive vibes. You have no idea how much it means to not only myself, but my husband, my family.
So now an update and how the appointment went. Every time I see the transplant team, I start off by registering and course paying "my dues", b/c of course money comes first (Eh hem, smirk). Then comes the part that I get so anxious about - my pulmonary stress test and spiro test. These are the two tests that the docs look at and compare to my previous performance to determine my "stability" (along with other factors, but these are really important). For the pulmonary stress test, I have to walk "laps" (up and down a bare, sterile and quite frankly boring, hallway from cone to cone). They want to know how far I can walk, how quickly, do I need oxygen and if so how many much. They measure my blood pressure before, right after and 5 minutes after finishing. They also constantly monitor my oxygen levels and my heart rate. For my walk this time my husband was my cheerleader along with the respiratory therapist performing the test. I was able to walk about the same distance (even a little further) than my last walk test, I required less oxygen and at a lower level than my last test!!! Every time I turned the corner and saw my husband at the end of the hall, I pushed a little more and remembered why I fight for every single breath. The spiro is basically a measurement of my lung function. I hook up to a machine, plug my nose and in the end, have to take the biggest possible breath in and then I am told to "blast" air out initially and then slow and steady. This big blast of air at the beginning is called the FEV1, which is the volume of air exhaled during the first second of a forced expiratory breath. It's converted to a percentage that tells you what your lung function percent is at compared to someone your height, weight and age. My lung function is at 25%. Normal healthy people will have lung functions between 90-100% generally, especially at 32 years old. Sooooo...it's obvious why it's a little hard to breathe these days.
Good news is, my numbers were stable!! I literally take these appointments 3 months at a time (if not sooner). I have had days where I thought I felt great and my numbers decreased slightly (like last time, when they hinted that I might need to be listed at this appointment), and other times when I feel not so great and my numbers will not change, so I really have no idea how I'll be going into these tests.
The docs are still saying I am too early to be listed as an "active" on the transplant list. For those of you who don't know what this means, as soon as you go "active", you can receive a call any minute, of any day saying that they need me to be at the hospital to be prepped for the surgery. Imagine...always being "on call", but this call will potentially save your life. That thought alone is both frightening and exciting. Being an active potential transplant recipient comes with a lot of stress and anxiety as you can imagine, for everyone involved. ANY time your phone rings, it could be "the call". Then, just b/c you get "the call" doesn't mean the surgery is "a go". The transplant team has to perform MANY, MANY checks to ensure that those donor lungs are a perfect match for the recipient. Surgery can be called off at any point if they feel they aren't a perfect match, that is called a "dry run" and they aren't uncommon.
There is a whole new blog that I can write detailing the pre-post transplant life and I will save that for another time but for now I wanted to share the good news that I am still stable which is everything we hoped for!! This however I take very cautiously b/c things can change in a matter of hours/days for me. One's normal cold can land me in the hospital on a ventilator needing a transplant ASAP. I don't have the normal immune system everyone else has b/c of my PCD. This is why I am a bit OCD on washing hands and cleanliness. I am thinking positive though and I hope I continue to be able to keep my lungs as long as possible, as they are the best for me, despite being so damaged. For now we continue to try and keep me as healthy as possible and hope for the best between now and my next appointment.
I want to thank each and everyone of you for reading my blog and sending me well wishes. I can honestly say that amount of goodness y'all sent to me game me a little extra jolt in my step for this past appointment, so THANK YOU!!!! Please continue to keep me, my husband and family in your thoughts as every day is a struggle and we are dealing with a very serious and stressful situation. I won't lie and say this is easy, but it makes it a little easier knowing we have the support of so many awesome people out there!!!
"Team Rebs"
