Category: The Drugs

My Scale is Evil!

I’m having a minor disagreement with my scale, it says I weigh more than I want to. It’s a problem a lot of women have, I just have it for a different reason. With congestive heart failure comes water retention and I fought that battle for several years. Now with a new heart the battle continues. Not to the same degree, but it lingers just a bit, enough to make me hate stepping on the scale every morning.

For all intents and purposes I’m “dry” according to the doctors, however the scale would argue otherwise. I don’t eat enough to maintain this weight; my medication knocks out my appetite. And the food I do eat is healthy, so, I’m not eating a gallon of Rocky Road every night. Unfortunately, a touch of anemia has left me a little tired the last several weeks and I haven’t been getting as much exercise as I’d like. Regardless, I’m tired of the extra pounds and would love for them to disappear.

There really isn’t anything that can be done about it right now. I’m still on that vile drug, Prednisone, and it causes your mind and body to behave in the most strange ways. Among a variety of awful side effects, “changes in the way fat is distributed in the body” is one of them. Now if the fat could be distributed to my rear end maybe I wouldn’t complain so much! I know my weight isn’t permanent, it’s just uncomfortable.

There’s a possibility I may own only one size of jeans in the future, but for now I’ll keep a variety of sizes just in case.

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.

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.

Photo Challenge

Husband and I – January 1, 2019

I’m going to try the 365 day photo challenge again this year. So here is photo #1, my husband and I in one of our favorite places to hang out…in bed. I’m going to have to get use to having my photo taken, OY! This Prednisone face with bullfrog neck is driving me crazy, but it is what it is. At least my hair looks good. Thankfully, I won’t be on this dose of Prednisone forever so the size of my face will go back to normal, eventually.

I got the results of my December 27th right and left heart biopsy and blood tests. My white blood cells are back to normal, which means my bone marrow is finally doing it’s job. All of my other blood work was good, just needed some minor tweaks to my medication. I was finally cleared to drive, so I got to drive myself to cardiac rehab on Monday. My biopsy came back with no rejection…EXCITING! Even more exciting my Kappa and Lambda Free Light Chains which would be a measure of the amyloid in my system were the lowest they’ve ever been, meaning I’m still in complete hematological remission.

I’m so happy I’m starting to feel healthy again…

View the entire Gallery.

Tomorrow’s The Day

I have my annual baseline right and left heart cath with biopsy, plus a bunch of blood work, an ECG, an echo cardiogram, and to top it off a clinic appointment with The Team…all tomorrow. Which means, I won’t be sleeping much tonight. That’s kind of how it always goes the night before a heart cath. I’m not going to lie I’m a little nervous for this one. My a last right heart cath with biopsy was on December 3rd, two weeks ago, and I had some minor rejection. Now, in the grand scheme of things the kind of rejection I have is very fixable, so I’m not worried about that. I guess what I’m worried about is that it’s been so long since the last biopsy, and about a week since my last blood test.

My white blood cell count was still low, but on the upswing, slowly. Because of that I was taken off of one of my anti-rejection medications that has a tendency to mess with your white blood cells, so, I’m not being fully immunosuppressed. That’s why I’m still on a higher dose of the steroid Prednisone. I’m not expecting no rejection with this biopsy so my Prednisone dose will likely stay the same or go up. Gotta love this balloon face of mine. I’m hoping for normal white blood cells and be able to go back on the Myfortic also known as CellCept. I’d like to get this immunosuppression thing figured out so I can have some biopsies with no rejection and get this dose of Prednisone down to a manageable level and maybe my face will go back to it’s normal size. The rest of my body is on it’s way to getting back to normal, it would be nice if my face would follow.

I’m hopeful though, my cardiac rehab has been going really well. I go Mondays, Wednesdays, and Fridays, then on Tuesdays, Thursdays, and Saturdays, I work out at home. I’ve been climbing the six flights of stairs up to our apartment and this week I started going down as well. Plus, I do ballet barre in my kitchen or my balcony (if the weather is warm enough). Pliés, dégagés, relevés, fondus, and lots of stretching are about all I can do right now, but I’ll add  more as I get stronger. Oh, and I can get my leg on the balcony railing and the kitchen counter 🙂 I’m sure the neighbors think I’m crazy when I’m on the balcony doing ballet…LOL!

I’m feeling good though and I’m hoping my tests tomorrow reflect how I feel. I’m feeling a little stronger every day. As a matter of fact on December 28th I should get the go ahead to start driving again…I can’t wait!

When things feel a little tough I just remind myself that this is #tooeasy!