This is an awesome project! I didn’t participate because at the time I was dealing with the whole heart transplant thing and was pretty sick. But if you want to see what the face of Amyloidosis looks like watch these videos. They aren’t long but their full of amazing information and stories.
VOICES of Amyloidosis Part 1 of 5
Believe it or not I managed to take a photo or photos every day for 31 days! Here is photo #31, the entire month of January. Now on to February, new adventures, new subjects, and hopefully a little more skill! I’m a bit rusty so it’s taking some time to get my camera fingers back, not to mention this is a newer camera than I was using before. I finally got my tripod here in Salt Lake, but it was missing it’s quick release plate. Thankfully, Manfrotto makes a unique plate for all it’s tripods and mine was easy to find at a local camera shop. A shop that I should not be able to visit unaccompanied by a responsible person guarding my wallet. I didn’t even go back to the shelf where the tripod plates were, I let the sales person from the customer service counter go get it. They were too close to the counter where all the Canon camera bodies were on display, with a big sign saying you could RENT THEM <GASP!>
Here are the stats on this photo….
Camera: Canon EOS 70D
Lens: Tamron 18-200 mm f/3.5-6.3 XR Di-II
Filter: GOBE CPL & Graduated Blue Filters
F-Stop: f/20
Exposure: 1/3 sec.
ISO: 100
Focal Length: 18 mm
I don’t know if it’s the weather and the lack of sunlight, the medication, or just being alone, but I’ve been in a funk for the last three days. I don’t feel hopeless, or depressed, etc. I just feel BLAH, like I just don’t feel like getting out of bed. I’ve gotten up to shower, I have gone out when I have to, eaten when I’ve been hungry, and all that normal stuff, but my emotions just feel flat. Maybe I’m just anxious to get home to Casper. My six months post transplant is coming so fast and I can’t wait to be back home. January is coming to an end, February is a short month, all I have to do is get thru March and I’m home free.
Physically I feel amazing! I can’t remember the last time I felt this good. After being sick for so long you forget what you’re old normal use to feel like. If I didn’t get any better from today forward I would be OK with that. The idea that my body could feel better than it does in this moment seems nothing short of miraculous. Which begs the question, why am I feeling so BLAH? I should be happy, joyous, ecstatic, that in just 15 and a half weeks I’m feeling this amazing after a heart transplant. Humble, grateful, thankful, are also some things I should be feeling, but right now I just feel sad for my donor and her family; she was so young! And maybe right now I’m feeling a little unworthy of this gift. What did I do to deserve this second chance?
Healing from a heart transplant is more than just your body healing from a massive surgery, but also your mind wrapping itself around the idea that another human being has to lose their life in order for yours to be saved. Conceptually, I wrapped my brain around it before the transplant, but when it actually happened, everything I thought I got right in my head doesn’t seem so right anymore. I want to live, but at the cost of another life? I know she was gone already, how I’m not sure, and I know she wanted to donate her organs. I pray God has an amazing plan for her in eternal life and I pray I will make her proud of the life I will live given the second chance she gave me. Right now I just weep for her, put my hand on my chest, and thank her for this heart!
Tomorrow will be better…
At some point in the future I’ll be able to dispense my pills by the week, but right now while we’re still tweaking dosages I don’t. I had a blood test today that I should get the results from tomorrow so I don’t want to sort my pills past Wednesday because they will likely change when the team calls with the results. Adding pills isn’t an issue but taking them out can be time consuming and a huge pain in the rear end. My bag is a little stuffed so I can’t fit everything because right now I take 23 different meds, I had to number them.
Yes, I use a binder to keep all my transplant information organized. They gave me a binder, but I like mine better, plus I added tabs! It has my schedule, med list, daily vital signs, an updated medical history, a POLST and advanced directive, current clinic notes, nutrition information, and notes. The transplant team seems to appreciate my organizational skills.
Some of these I will only take temporarily, some I may not need at all over time, but for now there are a lot to keep track of.
If you don’t know what the Seven Deadly Sins are here’s a list for you:
Pride has also been referred to as Vanity, and vanity is my sin. I think we can embody all the sins in one way or another, but I think that there is one that we all identify with the most and for me that would be vanity. If it weren’t, I wouldn’t care about my weight, doing my hair before I leave the house, and my favorite store wouldn’t be Ulta. The funny thing is, I never considered myself to be vain, but the older I get the more I think I am. And with all the changes to my body since the transplant it’s become even more obvious that vanity is most certainly my thing.
The prednisone face with the bullfrog neck is driving me insane; my computer facial recognition doesn’t even know who I am! But I know it’s not permanent. I won’t be on this dose of steroids for much longer and my face will go back to normal. Really in the grand scheme of prednisone side effects having a swollen face is the least of them. Thankfully the others I’ve been able to manage as my body’s gotten use to the medication. I have to admit though; some days I feel like a walking bobble-head.