Category: The Heart

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.

22 Weeks and Counting

It’s been 22 weeks since my transplant and in some ways it feels like a long time ago and in others, not so long. With any luck I’ll be able to go home to Wyoming next month, but that’s assuming they can tweak my medication properly and my next heart biopsy comes back with no rejection. The one thing I’ve learned about the transplant team here at University of Utah is that they are extremely conservative; I’d be shocked to hear they let anyone go home before the six month mark.

To say I was getting bored or was lonely would be an understatement. There is only so much you can do in 680 square feet. Of course I can go out, I’m not sequestered to my apartment, but going out by myself isn’t a whole lot of fun. I really just want to go home. I wouldn’t be lonely there and it’s never boring at home. My husband is bringing my dog for the last few weeks I’m here. We didn’t bring him earlier because I had to be healthy enough to take him outside every few hours. I’m up for it now, but wouldn’t have been a month ago. Having him here will help a lot when I’m by myself and my husband is back home working.

My next heart cath is the 26th of March and assuming I still have no rejection and my labs look OK we should be talking about when I can go back to Wyoming! I feel great, tired sometimes, but otherwise significantly better than I have in about four or five years. In addition to the transplant going well, my Amyloidosis seems to be staying at bay for now. My light chains…the kappa free light chains and lambda free light chains…are at an all time low. Those are the little proteins my bone marrow can over produce that cause lots of problems. April 13th of this year will be four years of remission; not bad after getting a 6 to 18 month prognosis to start off with.

Beyond remembering when all my kids were born and married, plus my husband’s birthday and our anniversary (which I’ve historically gotten mixed up!) I have my own birthday, plus my stem cell transplant date (April 13, 2015) and the date of my heart transplant (October 8, 2018). It’s all too much to remember, maybe I should get some of these dates tattooed on my body just in case…LOL!

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

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…