Category: The Doctors

Apprehensive

After having so many health issues over the last 6+ years I’ve become a bit apprehensive when it comes to seeking out medical treatment when maybe I should. Right now I’m sitting here, no doubt, in denial, that the pain I’ve had in my upper left abdomen will go away if I ignore it long enough. The fact is, it’s getting worse and starting to radiate toward the right side of my abdomen and around to my back. I’d like to tell myself it’s just a pulled muscle or something, but I know it’s not. Who knows what it is, all I know is the thought of having to go to my local hospital scares me to death.

Out here in Wyoming our medical options are limited, not to mention my issues are way above the pay grade of the doctors around here, and I really don’t want to make a trip to Utah to see my transplant team right now.

What I’d like is to have a single day where I’m pain free. Fighting Amyloidosis and then getting a heart transplant doesn’t come without a little discomfort, but my pain threshold is starting to wane. With that my mood isn’t the greatest and is probably bordering on depression. I feel like I need a break…

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

VOICES of Amyloidosis Part 5 of 5

A First Look

Here’s a first look at the Post Its that I put on the wall in my ICU room while I was waiting for a heart…there are over 200. Included are also the number of days I waited for a heart in the ICU and the names of the doctors, nurses and aids that took care of me.

This is Hard

A heart transplant is no joke. Today is 9 weeks since my surgery and I’m still too weak to be on my own. I’ve been out of the hospital for only 3 of those 9 weeks and before the surgery I spent 14 days waiting. So in 9 weeks I’ve been hospitalized 3 times for various things and now, in week 8 and a half I got a cold, so I’m stuck in my apartment with a runny nose and a cough, so much fun. Thankfully blood tests have shown I don’t have anything serious.

I’m tired, shaky (tremors), medicated to the max, weak, and trying to fight my way back the best I can. More than anything I’m BORED and not always in the best mood. We can blame the steroids on the weepy mood swings and sharp attitude. 

Cardiac Rehab is 3 times a week, Monday, Wednesday, and Friday. I’m able to get thru it most days but some are much harder than others. Once I lost all the water weight I gained over 2 years I realized I had no muscle mass left, so building up the muscle in my legs has been a challenge. We’ve started working on my arms and just 3lb weights are kicking my butt!

The hardest part of all of this are the heart caths and waiting for blood test results and heart biopsies. I’ve had two biopsies come back with minor cellular rejection; nothing out of the ordinary. Especially since they are still tweaking my meds. I have also had biopsies with no rejection so that’s good! In the grand scheme of things that can go wrong, rejection isn’t at the top of the list. All of my other organs working properly can be much more dangerous. Like my pancreas, kidneys, liver, lungs etc. My pancreas finally kicked in and is managing my blood sugar properly, my kidneys were in trouble for awhile and they are finally rebounding, and thankfully my liver and lungs haven’t given me any issues. 

And my heart, it beats perfect, looks perfect, and the only reason I have some minor rejection is because they aren’t fully immunosuppressing me yet, but that is all part of tweaking my meds to get them just right. 

So, it’s hard, but I’ve come this far, I have confidence I can make my way back to being healthy again.