Well, I was correct in thinking I was improving because yesterday and today have just been fantastic for me. My energy levels are up, my blood oxygen levels remain stable, even when I walk outside to sit on the deck. Boy, it is nice! I go into these periods cautiously because I know my diseases will snag back my good health any ol' time they please and I won't see it coming. But at the same time, I have gotten really good about being appreciative and grateful for my good days! I got outside for a little bit and watched mom work in the garden. I really miss working in the garden. But someday I will be right there with her in the dirt with smiles on our faces. Can't wait!
Now that the smoke has cleared and I am starting to feel better (yay!), I am looking forward to getting back to my outdoor visiting time with friends and family. We still don't allow anyone into our home just to be safe. So people come to see me and we sit very far apart on the deck, armed with masks, gloves and hand sanitizer.
Today I got a visit from Rory, which was nice. He still checks in on us pretty regularly and has been helping us out here and there in getting our yard ready for fall and winter. Todays visit was really nice and I just appreciate that we have such a respectful and caring relationship even as we work through the complications of being separated.
He also walked me to the mailbox since I'm not technically allowed to walk out there by myself anymore. Better safe than sorry! But the rain took a break long enough for a nice stroll. It was a good day.
I am so thankful that the board, doctors and surgeons all agreed to list me earlier this month! Technically I had one final appointment to get through but they didn't wait for me to complete it because it was just something I had to check off and I think I have already proven to everyone on my care team that I am capable of following direction and living my life as healthy as possible, not just now but after transplant. Anyhow, I did have my final appointment that had been sitting on my checklist that I got to officially check off. This appointment was with a psychiatrist and fortunately they were able to set up a Telemed visit so we didn't have to make another trip to Seattle because those trips truly wear me out! The appointment went as I expected it would, no red flags, my mind appears to be ready to take on the huge undertaking of a triple organ transplant. Officially. The psychiatrist even said so.
I also had a home health visit today and although I feel like I may be getting better, there was a little bit of concern over how long it is taking me to recover when I move from my bedroom to the living room for my nurse visit. But I have all sorts of tricks up my sleeve to bring my levels and up and after some time everyone was satisfied with where I was hanging out, between 85% - 88% on 15lpm. I can go all the way up to 25 lpm if I can't bring things up on my own at 15 but it isn't very comfortable for my nasal passage and airway so I avoid that if I can.
All in all, nothing huge to report. Oh, except when I find out who referred me to Marriott hotels we are going to have words. I am getting SO MANY junk calls from them and some are from a 206 are code so it makes my heart jump all the way to the back of my throat, thinking it is UW calling me in for surgery. Soooo.... thanks a lot, whoever you are! Haha!
I just love and appreciate my daughter, Eli more than words could ever say. She is such a strength and guiding light in my life. She spends as much time as she can in my room with me so I don't get lonely. She always has the most uplifting things to say to keep me in a positive mindset. She is always looking for ways that I can spend my time productively even though I can't really leave my room until we get that call from UW. She makes sure I get outside at least once a day. I don't know how I did it, but she turned into a very, very special human being and I couldn't be more proud.
Ever since the smoke travelled to our home from the wildfires, I have really been struggling. I tend to feel like I am on a roller coaster but with a blindfold so I never know when I am going to be in an upswing or a downswing - or sometimes doing loop-de-loops! Last night I started to feel like perhaps I was coming out the other side of the tunnel and my levels began to stabilize. I think I may be seeing the end of this flare up and I couldn't be happier! The only thing that gets me through flare ups is being able to look forward to feeling sort of like myself again once it is over. So, fingers crossed and prayers whispered, lets hope I will be feeling better over the next few days!
I just love Mondays! On Mondays I feel super special, grateful and humbled. Friends and family from all over the place and even some folks I haven't met personally, wear purple to show they are thinking of me, praying for me, sending me all the good juju vibes and some of them even share them to my FB page. Every single post makes me smile. Every single photo makes my heart fill with joy. Thank you to everyone that continues to lift me up and keep rockin' that purple!
I treated myself to a really cute and meaningful necklace to remind myself to stay focused and continue to stay strong in my faith that someday soon I will get the call that will save my life.
We have been blessed with some rain over the last several days. Rain that our earth and atmosphere needed desparately! Now with the air quality being drastically improved, I was able to sit outside for quite awhile today and it made me truly appreciate the ability to get outside for fresh air and some sun. I will never take that for granted.
We didn't get to church today because the smoke really did a number on my lungs and ability to breathe so we played it safe and stayed home. I did read some from my bible, a couple of passages that had been recommended to me recently.
While outside I had the pleasure of not one companion but two. Our goofy, beautiful and sassy Molly from next door came by and chilled for a bit in the sun with us. She never stays long but I think she missed us because she typically comes for a visit once or twice a day, which we really enjoy. But with the air being toxic, all of the neighborhood dogs were grounded to the indoors, just like the humans. So it was good to see her smiling, happy face again!
Rory came by a couple of weekends ago and cut back some of our severely overgrown bushes in the garden. Now I have a much better view of the entire yard! I sure do appreciate that he still checks in on us regularly.
I am missing my weekly visits with Rache and Tara but they do a great job of keeping me happy with lots of updates in their chicken and turkey world... plus tons of hilarious short videos and memes. Can't wait to see their lovely, smiling faces soon!
Man oh man, have I been struggling! The wildfires on the west coast have truly brought about some toxic air. My heart breaks for anyone or anything that can't find respite from the smoke indoors. On the first day of 'the smoke', my extremely thoughtful cousin, Rachel, went to Home Depot super duper early in the morning to bring me some box fans with filters to run in my room. Yesterday my brand new air purifier was dropped off but it is really just for my bedroom space. So my good friends, Dustin and Jessica (coworkers that I miss dearly!), had the thought to give me one on loan to use in other areas of the house so my momma and kids can be breathing decent air as well. Times like these, when my warriors rally around to make sure I am taken care of really bring such a sense of humility and gratefulness that I just can't describe.
I managed to throw the breaker in my bedroom a few times before figuring out a good set up. Running two oxygen concentrators in my room is truly like blasting two heavy duty heaters 24/7. I usually keep things comfortable by opening my bedroom door to the deck but of course we want the smoke to stay outside so no open door for me! And boy, did it get sweltering in my bedroom! So mom had the great idea to bring the portable AC unit we use for our AirBnB Rental since it is officially closed for now. Aaaaand.... boom. Lost all power to my room. Ooopsie daisy! So now I have a couple of extension cords running into my bedroom to power all of these beasts and I will be waiting on pins and needles for my next utility bill! Oh well. Things could be much worse, I really can't complain.
Still just biding my time, waiting for the call to come. I've managed to partially pack the bag to take to UW and I'm at a loss for starting the packing of the large suitcase that will go to the Transplant House because it is all still stuff that I currently use day to day. I think we finally decided mom really knows me and what I will need, plus she will need something to keep her busy while I am recovering in the ICU. So she will be packing everything for the Transplant House. EEeeee.... just talking about it gives me goosebumps! I'm so close! Below I am leaving a tip that my thoughtful sister, Rochelle left up on FB for dealing with some of the smoke indoors. Give it a try if you are struggling, seems to do the trick!
Omigosh, omigosh, omigosh you guys! I got the best call today! They reviewed my case with the board this morning and I got a call shortly after to let me know I have been officially APPROVED AND LISTED FOR ORGAN TRANSPLANT! I had to focus really hard on all of the things she was saying to me over the phone because I have never been more excited about anything like this in my life! My nurse, Amy, called and was so happy to tell me the great news! She has been cheering me on from the sidelines and we enjoyed the moment together. I only cried a little. But when we hung up the phone I sort of cried like a baby for a bit. Don't worry, they were happy tears!
So now comes probably the most difficult part in pre-transplant life. Waiting for the call. I have to be at UW within three hours of receiving the phone call about surgery. We made arrangements ahead of time with the local ambulance company to get a 'non-emergent' transfer from my home in Sequim to UW in Seattle. Hopefully the organs will all be in good condition and a good fit for me. It seems like everyone I've talked to about having a transplant has gone through what is called a 'Dry Run'. That is what happens when they call you in for surgery, you speed to the hospital, sometimes even go so far as be prepped for surgery - Only to find out the organs won't work after-all so they send you back home to await another phone call.
Every once in awhile people get a green light on the first go and this is what we are really praying for! If that happens, I will go via ambulance to UW and be prepped for surgery. Once the organs have the green light, I am taken to the OR for transplant! Mine is of course far more complicated because I need three organs. The first thing to be replaced will be my liver and they have two entirely separate teams for the surgeries. The liver team does their job and they wait to make sure everything is working as it should. Next the lung team will step in for their part of surgery, to replace both of my lungs. Either of those surgeries is incredibly long but having a two-for-one will make for between 15 and 20 hours of me being in the OR. Once they make sure my lungs are inflating properly, they will close me back up and wheel me to a special ICU recovery room where I am monitored closely. They will keep me intubated for several days after surgery and in fact won't even wake me up from surgery for a couple of days. When they wake me up, I will still be intubated which I am told can be quite uncomfortable and even a little scary. My hands will be tethered to the bed just to keep me from trying to reach up in a panic to remove the tubes. They will ask me a few questions and see if I can follow simple commands. If I am with it enough to follow their commands, they will keep me awake and try to extubate me. If I am not able to follow those commands, they will sedate me again and try again in a day or two. This process can go on for multiple tries but you know me - I want to get it right on the very first try so that is how it is going to go. :) From there I will be taken to another room that is similar to ICU for closely monitored care. If I do well there and can find the strength to do everything they ask of me, I will be moved to a regular hospital room for about another 2 weeks. If all goes as planned, I will move from there into the Transplant House, which is located very close to the hospital. I am required to stay there for three months with at least one caregiver at all times so they can follow me closely and I can be close to UW for any issues we might have. I will have several appointments every week and they provide transportation for those, which is nice! If all goes well I will spend about three months in the Transplant House, recovering and getting strong and learning to live with my new organs and new drug regiments.
I've never been away from home (specifically my kiddos) for extended periods of time so needless to say, this is going to be hard for everyone. But I know with our HUGE support system back at home, things will run smoothly and my kiddos will be well looked after and given all the extra love and support they will need. It seems to be touch and go as far as visitors go at the Transplant House. My mom and Eli will be my main caregivers. Mom will be with me for the majority of the time. If she needs some respite or she gets sick or hurt for any reason, she will head back home and Eli will take over as my caregiver. Ginnie and Rochelle have also gone through all the necessary training to be my caregiver if absolutely needed and I think we will be counting on them for occasional weekends and such, so mom can get some form of her own rest at home. Right now they only allow for one person to be with me at a time while at the Transplant House. That could potentially change, depending on what Covid looks like but I think either way, no matter what, we will be extra cautious and have as very little visitors as possible. I'll be counting on folks to text, email, Facebook and Zoom with me when they can to ease some of the homesickness I am sure to feel. WE GOT THIS, GUYS!
Wow, what a day! This morning I had that second round of allergy testing with Dr. Lang. And testing showed I no longer carry any sensitivities to these medications! So that means one more sign off and box checked for transplant! Yay!
We also met with Angela, my social worker for lung transplant. She coordinates a lot of stuff and really is one of the bigger obstacles to get over because any red flags from her could put my entire transplant in jeopardy. All of my caregivers were required to attend this meeting so mom, Eli and I drove over to meet with her in person and Ginnie and Rochelle signed in via Zoom. I set them up to call in together from my house because they are doing me two favors at once and also waiting for our new stove to be delivered (we have been without a stove for months now and the stove cooktop finally went out as well so this was a must have at this point). We went over my history (again - I am pretty sure this is a requirement for every single person I meet), she talked about things that might be obstacles for me for transplant. Fortunately for me, she did not find a single red flag and is ready to advocate for me to be listed for a double lung and liver transplant! She also said that she would like to see me listed sooner rather than later and that my appointment with the psychiatrist at the end of the month won't hold me up from getting on the list. AND - they are reviewing my case tomorrow! She said she sees no reason for me to not be approved and I should know something before the end of the day tomorrow. Talk about waiting for the call of a lifetime! I have worked so hard and waited so long to get listed, this will really be life changing. So I am looking for all of the good juju vibes, prayers, well-wishes, whatever you've got, send them my way and out into the universe! I truly believe this is my time. My faith has really carried me through and by God's Grace I will be listed in the very near future!
Boy, this week has been jam packed! So, allergy testing went great and I will see her again on the 8th. The appointment with the transplant team was informative and I really liked the doctor we met with, he was very patient and kind and answered all of our questions. Today we will be meeting with Dr. Mulligan. He is the lead surgeon for the lung transplant side of things. It is really important to me (and I would assume for him as well) that I am everything he looks for in a perfect transplant candidate. Any doubt on his part and this entire thing could go down the wrong road. So, fingers crossed he really likes me (haha!) and feels confident my surgery would be a success.