After church today, Loni and Ginnie came by so we could share in fellowship. Not only did we get to enjoy some praise and worship together but we got a quick lesson from Ginnie about cedar bark harvesting! My spirit is lifted and my heart is full and happy.
It is so nice to be back home where I belong! I am feeling great but also being careful to take it easy so I don't undo all the work they did to make me healthier while at UW. Eli got to try on some of her graduation gifts (we had to make sure the sizes were correct before officially giving them to her on graduation day). I got to visit with mom a little bit while she worked in the garden. And we even managed to get in a short walk to the mailbox since I am still supposed to be keeping up my strength and doing something active every day. I usually feel refreshed after our walks once I am back in my room and completely recovered. Today was a good day.
I should be going home later today! The IV diuretics did their job and my levels seem stable. Now to get back home to continue checking things off my 'to-do' list for getting listed for transplant and to sleep in my own bed! Being at home surrounded by my family is more healing than anything else!
My time at UW is comfortable and uneventful so far. The fluid is working its way out and I am starting to feel better already! They made some medication adjustments (more diuretics at home, yay!) and we talked about the effectiveness of a nasal cannula vs. a face mask. Using a face mask for high flow oxygen like what I require is recommended and I was sent home with a some masks to try out. I have a decent view from my room and am feeling like I will be back home in no time! No visitors, of course, because of Covid. It is always hard for me to be away from my family. But I know I am right where I need to be and thankful for the great care I am receiving.
Well, it turns out that I was absolutely correct in thinking something has just been 'off' lately. I have weekly visits with a Home Health nurse and at today's visit she was not happy with my oxygen levels, heart rate or breathing rate. This nurse, Bronwyn, has been a God send to me throughout all of this. She was the one that caught on to my decline in health that landed me in ICU at UW in February. She is incredibly sweet, kind and compassionate. And she definitely knows her stuff! I always feel safe with her on my care team and am so thankful she is in my life! Ok, but back to my story. Bronwyn made a call to my PCP and put out a call to Dr. Raghu's office to see how they wanted to proceed. Initially I was sent to OMC ER for evaluation but everyone decided I would be better off at UW, where they are super familiar with my case and I have access to any specialty care. So off to UW I went, again. Getting admitted was pretty quick and painless and I was put into an ICU room for care. Apparently I was having fluid build up in my organs again, like I had in February when I was diagnosed with HPS. It also seemed my red blood cell count showed thickening of my blood, which was making it even more difficult for oxygenation and was also making me feel like I was running a constant marathon! Fortunately this should be a pretty quick fix with some heavy duty doses of IV diuretics to remove the excess fluid. And this time I was prepared for being sent to UW so I was able to pack a bag real quick so I could have some of the comforts from home with me and items to pass the time! Time for some healing!
I have to admit, I seem to be struggling a bit lately. I do go through slumps now and then but this last week has been particularly difficult. Something feels off, I feel exhausted and can't seem to get energized no matter what. Days like today I am so thankful that I have people to lift me up. I was pleasantly surprised with a card from Rory's cousin, Coral. She is one of the kindest people with the biggest hearts I have ever met. I had the chance to meet her personally during one of our cross country road trips when Rory was stationed in New Hampshire. So that put a smile on my face. I wasn't able to get to church because it didn't feel manageable or safe. So I tuned in from home and did some of my own reading. And then Loni and Ginnie showed up to really save the day and I got to enjoy some beautiful praise and worship from the comfort of my own yard. Mom and Eli joined us for the worship session which made it even more special! It really lifted my spirits!
What amazing weather we are having today! I got outside to soak up some of that vitamin D and just relax my body and mind. Not a lot to share but today was a good day.
This morning was an early one! My cousin/caretaker/love of my life, Rachel, picked me up bright an early so I could check another thing off the list as I work towards being listed for transplant. We cruised over to UW Cardiology for a heart catheter procedure that went super smoothly and the results were better than what we could have hoped for. I got clearance as far as my heart goes for transplant surgery! It always feels so good to check things off the requirements to be listed for transplant.
Yesterday I attended a Zoom class with my mom and Eli (they will be my caretakers for now and up through transplant and several months afterwards so we all have a lot to learn!). It was really informative and although it was a TON of info, I tend to feel less overwhelmed with things the more I know what to expect. So I have to say I enjoyed the four hour class and was really grateful they offered it via Zoom, so as to be careful not to expose me to any germs unnecessarily.
I am so thankful to have so many people on my care team!
I enjoyed getting outside for nearly the entire day. Just to sit. Feeling more refreshed today after a difficult week. Got to enjoy a drive-up church service with my #1 person, my momma! Spent some time soaking up the word and just being still in His presence. I also filled my well with wishing rocks, the well was a handmade mothers day gift, all recycled parts and made with love. I am so blessed.
We had an absolutely amazing Mothers Day. Started our day off with a beautiful drive in church service, then home for serious social distanced lawn time with Shell and Scotty. Music, laughter and love was had. Then a quick trip to the river to find little wishing rocks for the well that was made for me for mothers day. Alden showed his carpentry skills with a shelf he built for me. The only thing that would have made it perfect would have been to see my brother but we did manage to Zoom with him! Hope everyone had a lovely day.