Wanna hear something weird? Ok, hear me out. I’ve been telling my husband this is what I want to happen, yes it’s my magical thinking but you never know. I want 3D printed lungs. I want to be able to take a pill (you know those little spongy dinosaurs you buy for kids that when you put them in water they expand?) and the pill would be spongy tiny lungs. I would swallow it and it would expand and regenerate/replace my asshole lungs! Then I would just poop ’em out. I know I am a bit odd. But I am going to UC San Diego next month and I will propose this idea to them. They may order a psych consult…OR it may get them thinking. Either way, I feel I have put this idea out there into the universe and set it in motion. I’d like to hear your thoughts or ideas!
Well I overdid it again this weekend. Went bowling Friday to celebrate Lisa’s bday! It was a lot of fun, harder than I thought though. I would run out if breath pretty quick just rolling a dumb ball!!! Scott told me I could have a spa day if I picked up a split. I am NOT a bowler, in fact, I’m horrible. But I picked it up and now I get a spa day! Yeah!
On Saturday, Rebecca and I got all dressed up and went to the Strut Fashion Show. That was a great time! I got home late both nights. I’m guessing not sleeping well and too much activity is why I am feeling like shit today. More SOB and very tired. Without my O2 my sats drop into the 80’s quickly. No appetite, I just want to drink liquids cause of the darn diuretic I have to take. I’m just so thirsty! Ugh. I wanted to help with yard work today and was only able to spread my wildflower seeds cause even that was too much work today. Hopefully, I’ll be able to get my starters planted this week. I hate feeling like this because it makes me emotional and think about what I want/should be able to do but can’t.
My visit to the UW doc went really well. My echo looked great so he doesn’t want to start a new med. He also said that my heart failure is a little bit improved! However, I am also very deficient in Vitamins B and D, and nutritionally deficient. With heart failure people tend to not have appetites. He wants me to see a nutritionist to help correct some of these issues. I also have a date finally to go to UC San Diego hospital to meet with the transplant team! I’ll be going over mid June! I have a lot of mixed feelings about this but I want to hear what they have to say will keep you all updated. For now, I am going to rest and get my mind in a better place because I know that tomorrow is going to be a better day!
I also want to thank everyone who donated to my gofundme, those of you who send good vibes and prayers! I was able to purchase my inogen portable oxygen machine and I love it! I will post pics of it once I get some taken! It’s a life saver and gives me so much more freedom! The funds are also going to be so helpful with all this traveling to medical appointments especially out of state! I can’t imagine what I would do if I didn’t have the support of family, friends and even strangers who have donated! I am extremely humbled and thankful, words can never do it justice.
This pic is of me and Rebecca posing at The Davenport Hotel before going to the fashion show. Rebecca is one of my best friends and also has Pulmonary Hypertension caused treatments to cure childhood cancer. We share a special bond because of all we have in common. Especially, when both of us need to stop to catch our breath.
It’s time for an update, too much has happened in the last couple weeks I need to catch you up! So we will play bullet point catch up! So, if you want more details, comment below or send me a message.
- San Diego transplant team called me back after reviewing my records and want to see me in person! This means that they do not feel they can turn me down for transplant without seeing “the whole patient”! Which is weird cause three other places said no without seeing my smiling face but whatever. I still feel that 99% I am not going to be a candidate but hey, it’s San Diego so I will go and have a short beach vacation! I will probably be going there in June.
- Heading back to UW tomorrow to see Dr. Leary and get the results of my sleep study and see how to proceed. My medication seems to be working wonders even though I still have some pretty rough days.
- It’s May and it feels like summer! The warmer weather has been a godsend for my health. I am outside more! I walked around the block with Buster yesterday and barely had to stop! I also walked a great deal Sunday when I met my husband downtown after he ran Bloomsday! This is HUGE because six months ago I was barely able to walk 1/4 of a block!
- Something interesting is happening to my palate. I suddenly love spicy foods, the hotter the better. I also found that I was craving sour patch kids yesterday which I never cared for. Holy crap, I nearly ate the whole bag and then hid it from my son before he came home from school!
- Concerts I will see this month in order: Aesop Rock in Seattle on Friday (if I don’t have a heart cath), Violent Femmes on the 17th, The Cure in Portland with my bestie on the 28th and then I see The Cure in Boise again on June 2nd!! I am so excited!
- After a lot of debating, my best friend set up a Gofundme page on my behalf. I couldn’t be more appreciative of all who have already donated and been so generous! We truly have so many wonderful people in our lives! The donations will help with my medical bills and traveling to all these appointments! With funds already donated, I was able to order a small portable 02 unit. It’s so light wt and will help me get around so much easier! Thank you to all who donated, every dollar helps! Check out the link to learn more about the unit that is going to make me so happy! https://youtu.be/volW7IqOyP0