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.
I've got a lot of appointments and tests scheduled at UW this week! These trips are truly a ton of work on the part of my caretakers and if I'm being honest, they tend to just really wipe me out completely. Once again we got back to back days, with an early morning appointment tomorrow. So we decided to go ahead and stay over again, like last time. So we loaded up the car for what looks like the apocalypse and headed to Seattle. A handy tip for folks that have a ton of appointments over on the other side of the water: GET A MEDICAL PASS FOR THE FERRY! I can't count the number of times this has saved our hineys and we were able to squeeze onto a ferry. It is something your doctor has to provide for you but they can make them good for up to 90 days at a time. We pay for our tickets and print them from home, when we get to the ferry we are able to drive straight to the front of the line and they make sure we get parked by the elevators and restroom. I never knew about this handy piece of paper until I had already made many trips to Seattle but boy am I happy to have it now so wanted to share that tip!
Today I had allergy testing because one of the drugs they typically use after transplant happens to be a medication that I had a bad reaction to about twenty years ago. So they pricked a small dose under my skin, waited a half hour, pricked a slightly larger dose under my skin and waited another half hour. Since I barely had any reaction, they gave me an entire dose, orally and I waited an hour to see if I had any reaction. Which, I didn't! So, yay! I will have to come back next week to go through this same thing again for one more medication but hopefully I will be cleared as being allergic to this one and get the green light for them to use it after transplant.
Tomorrow we will be meeting with someone from the lung transplant team to go over my history again, talk about transplant and life post transplant. This will be a good appointment to have all of our questions answered. Fortunately, UW has been really great about providing information via mail, email, classes, their website, etc. So we feel pretty confident going into this meeting. The photo below is just something to make you laugh, this is how we have to pack for me to go somewhere for ONE night. I swear it is like traveling with an infant!
Naps. What can I say about naps. Naps are so good and delicious! Eli usually comes home during her lunch break and after cleaning herself well enough to be allowed on my bed, she lays out a towel for the pupper and we all just kinda chill/nap for about an hour. I think naps should be mandatory! Who is with me?
Home Health visit was great today. My oxygen level even went up to 92 while she was here! Wowza! Getting some of this beautiful sun in while I can. No complaints here... Hope everyone is enjoying the day as much as I am!
I can't lie. I really miss being able to work in the yard. It eventually became too difficult for me to manage the yard as my health declined, which made me really sad because that was one of the reasons for me to be so excited about buying this particular home and property. It is five acres and there seems to always be something that needs to be done around here. I miss it. But Team Smith jumped right in and now I get to sit outside and visit with them while they do the work. It isn't quite the same as getting my own hands dirty but I am thankful for my home team, they know how important my yard is to me!
So, this amazing thing happened today. I got to see ALL of my siblings! Scotty brought over his pizza maker from space and cooked outside. It is so hard not to hug my family but seeing their smiling faces in person is just what we all needed!
Today Eli, mom and I had a four hour Zoom class about lung transplant with people from my care team at UW. They sent info over beforehand so we had materials to go over. Had to sign a few things. And we listened to four hours of what transplant life is like. It was incredibly informative and just renewed my excitement at the thought of life post transplant!
During the class they mentioned 'clubbing' of fingers and toes. Which is something that happens when people live with low oxygen levels for long lengths of time. I find it fascinating that my oxygen has anything to do with the size of my fingers and toes but I am constantly finding new things to amaze me about the human body. Anyway, some people in the class found it interesting so I am sharing a few images but feel free to scroll on by - my little piggies aren't the funnest things to look at. Especially now that they have huge clubs on the end of them. Haha!
We had a successful day at UW today! I had to do a pulmonary function test, which has never bothered me before. But my lungs and my ability to breathe properly made this test incredibly uncomfortable and scary. My oxygen saturation at this point hangs out in the mid 80s. They tell most people anything below 88 and you should head straight to the emergency room. Obviously my normal's are not on par with healthy people at this point. But when I did the test they dipped to the low 70s which would be uncomfortable for anybody! I felt like I was going to lost consciousness and at one point was so frightened that I was going to lose it that I began to cry - which isn't like me. Needless to say I was happy to get it over and done with and see Dr. Raghu. I tried to complete a 6 minute walk test but was unable to do the entire amount because they had me on 25lpm and I was still dipping into the low 70s so we quit a little early to allow me to recover. Dr. Raghu reviewed everything and decided things are not moving fast enough for me, as I still had several appointments to get through and some of them were 6 or 7 weeks out. So he left the room for a bit to speak to the director about my case and try to move some of those things up for me. We also had a serious talk about my current oxygen needs. Dr. Raghu told me that I should begin the process to be admitted into a skilled nursing facility because he is worried that should I crash suddenly, I don't have access to the oxygen I would need to keep me alive. Having your doctor discuss the possibility of a nursing facility is mind-boggling. I can't even picture it. So I've got some work to do when I get home to have the best possible set up at home to put everyone's minds at ease so I can stay home as long as possible. Dr. Raghu's conversation with the director really got things going and I got a call before we even got to the ferry with the scheduler, she had all new and sooner appointments for me! Soooo.... here we go!
I feel like the wheels have really started rolling with getting listed! They scheduled me with several appointments at UW this week. I'm meeting with with the Liver Transplant Surgeon this morning to go over what the liver transplant surgery looks like and have any of our questions answered. The surgeon is very kind and soft spoken and was happy to answer our questions. This afternoon I will be meeting with the UW Nutritionist to talk about diet dos and don'ts both before and after transplant. This is the second time I have met with a nutritionist because insurance dictates that I must have that visit for liver transplant and a separate one for lung transplant. Gotta love the system! But it was good info and she was very nice. We have decided to stay over in Seattle because we would be getting home so late and then have to be back in Seattle for a 7:45am appointment. We picked a hotel with very strict guidelines about Covid and reviewed their cleaning procedures. We also took our own sanitizing wipes and a UV light to disinfect all of the surfaces, just for good measure. It was a clean room and we felt safe. Early day tomorrow with Dr. Raghu!
I don't know what I would do without my momma. I won't give away her age but lets just say I never thought in a million years my elder momma would be having to give me 24/7 care and basically run my household for me until I am well enough to do some of it on my own at this point in our lives. I want to be the one taking care of HER, not the other way around!
My mom never, ever complains. Ever. She is always so strong. She always knows what I need before I do. She wakes up early to cook my favorite breakfast every day. She does all of the cleaning, laundry and running around. She should be enjoying retirement but her life is anything but relaxing. She says she loves doing it and honestly I believe her. But I can't wait for the day when we can BOTH relax and do things we enjoy together. I will never be able to repay her for all she does not just for me, but my kiddos as well. She is my rock and my hero and my very best friend. I love you momma.