I have been contemplating updating my blog for weeks now. First, I wanted to wait for results on my latest blood work for my antibody treatments. Then, a few weeks later when I got the results, I was sidetracked by a last minute decision by my doctors to quarantine me for symptoms that mimicked the new Covid-19. And lastly, when I came home a week later from the hospital (luckily only 2 days in quarantine room) I was still exhausted and had no idea where to begin.
So here I am. Still having no idea exactly what to say except "Hi!! Life has sure been interesting! How about yours?"
But seriously! I hope you are all taking our new normal in stride and finding ways to stay connected. Quarantine life is no joke and I am blessed to have a husband that can work from home and kids that are not running around out of the house. If that were not the case, I would honestly have to leave and go live somewhere else. Somewhere safer for me and my immune suppressed self. I have been warned to wear a mask everywhere I go since last January when I got my first treatment in Seattle. I haven't followed the advice. I am now!! Scared into submission! Haha!
How do you like a glimpse into my daily life. Between all of the sanitary precautions, fear of getting sick and being unable to get out and see everyone you love whenever you want....this is my life. This has been 'normal' for me for quite some time. I'll admit I did get out more before December of last year, but my friends know I didn't get out much and I had to cancel a lot. Exciting, right?!
499 Days. Four hundred and ninety-nine!
That is how long I have been on the transplant list. That is how many days I have kept my phone ringer on 24 hours a day even though, honestly, all 499 I have not expected a call. A call that would turn my life upside down. A call that would create excitement, fear, anxiety, joy, anticipation, chaos, tears and deep mourning for someone and their family/friends that I have never met. The call that would tell me a donor heart match was found for me.
All in God's timing. That is when I want that call even though there have been dozens of times (times 10) that I have wished it was in my timing because....well...I just miss feeling alive and even remotely healthy. But my timing sure seems to mess things up so I will wait. Both patiently and impatiently.
I don't have a lot of news to share. On Monday I had my 6th and last treatment of infusions that I started back in October. The doctors wanted to test to see how the treatment was working after my 4th dose. So in February I had blood drawn. I got those results back. I was in tears. Not good ones. Tears that had me cursing under my breath and feeling like maybe I am only still alive to encourage others all the while needing to accept my fate. A fate that would leave my boys motherless, and my husband and bonus children experiencing being wifeless & motherless a second time. March 11th started out as a visit to my doctor in Portland to figure out what was causing my extreme fatigue and lack of oxygen and ended up 2 hours later having been given terrible news and then quarantined in the hospital and them kicking out my husband. (That part is actually a really funny story!) I told him when they escorted him out by the security guard that he should run down the halls yelling "2319! We have a 2319!" I wanted to video and post it. I needed to vent through humor but it didn't happen. Oh well. The idea was funny. (I hope you got the quote above, if not, I'm sorry.)
Two days ago I found out there is some confusion and disagreement in the outcome of my blood work results they shared with me on March 11th. I am hoping to get full clarification via email from both Cedars and Providence today. Maybe 'disagreement' is the wrong descriptive word. The results are being read differently by different people. I would really like to hear that as my life gets harder to live, literally, that I am getting closer to having better odds. Here are my odds of a heart match as it has been for 499 days. Less than 0.1% chance of a match. If the results come back the way a different doctor read them it could change those odds to 1 in 5. That's 20%! I would like to choose door number 2! 20% sounds like a lottery win to me!
Oh! If you haven't already heard....I don't have Covid-19. No Corona virus here! Just a progressively failing heart that keeps making life more interesting. I have learned to use positive words like 'interesting' instead of 'miserable' when describing my situation. Sarcasm is good, too. Like saying "fantastic" when I am asked how I am feeling. Sometimes the truth is both too long to list and far too depressing to say and hear.
Well there it is! I did it! You have now been officially updated and I can mark this off of my to-do list.
I want to leave you with this. I have to apply this to my life more often than not. I think it is fitting for the majority of us in this place and time.....
"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish it's work so that you may be mature and complete, not lacking anything." James 1:2-4 NIV Bible
Until next time!
P.S.I was curious if I had taken any pictures in January 2019 that I could post to go along with my 499 day wait. Who knew I was playing around with snapchat filters and my dog the same day I got the call that I was officially listed with UNOS (United Network for Organ Sharing). I don't use snapchat so no need to friend me. I tried it for a few months once. For this picture I was just playing around with the filters.
Find a reason to encourage someone today. Reach out if you need encouragement or anything. Life is difficult! Don't do it alone!