Author: REJ

Advocate

Another short stay in the hospital has reinforced the concept that as patients we need to advocate for ourselves better.

It’s not necessary to get frustrated, anxious, angry, etc. Being kind, polite, and calm has been the way I’ve been able to get my point across to my medical team the last several times I’ve seen them either in an outpatient or inpatient setting. That’s not to say I’m not frustrated, anxious or angry; I’ve simply found that succumbing to those emotions doesn’t help me get what I need. What I need is to be heard! If they hear me then ultimately, I receive the care I need, not the care they “think” I need, which by the way, wastes a lot of time.

What’s the point of getting frustrated with the nurse who’s simply waiting on the doctor to put in the orders for your medication? Why get angry at the pharmacy tech because they’re out of Tamiflu and you have to go to another pharmacy to get it, it’s not their fault they’re out. And will getting anxious make a procedure go smoother, or test results come faster?

Most of the people we encounter on a regular basis as we go to and from our medical appointments didn’t go into this line of work to get rich. They started off with a desire to server others and care for them. By treating them with dignity and respect, they hear us, and in turn we get the care we need. I’m not suggesting this as an absolute, we’re always going to encounter the medical professional who doesn’t want to hear what we have to say, but I believe that’s the exception and not the rule. It’s all in our approach and how we advocate for ourselves.

Week 19…The Flu!

I spent the last 24 hours in the hospital because I have the flu. Kind of a bummer for a person who had a heart transplant 19 weeks ago, but my stay could have been longer had I not advocated for myself and made it clear to my medical team what I was expecting regarding my care.

Please follow my medication schedule to the best of your ability. I have it down to a fine science and deviating can sometimes cause problems. After being given a detailed list of my meds and when I took them, they made every effort to follow it; not to perfection, but good enough. I certainly appreciated the effort. I don’t feel “that” bad, and my blood work would suggest I’m stable, so let me go home and be sick in my own bed. It’s people like me in a hospital that makes hospitals huge germ factories. They had me in isolation, but every person in and out of my room was a potential carrier of my flu ridden germs. My doctor found my argument for release to be totally valid and put in orders for me to be released right away.

Now, I’m home in my little apartment, drinking my own bottled water (cold), eating my own food, laying in my own bed, not spreading my flu around, and significantly more comfortable than I was in the hospital.

VOICES of Amyloidosis

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

VOICES of Amyloidosis Part 2 of 5

VOICES of Amyloidosis Part 3 of 5

VOICES of Amyloidosis Part 4 of 5

31 Days and Counting

Ride UTA – January 31, 2019

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

In a Funk

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…

The Pills

Not even all of them…

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.