Category: The Heart

Splenomegaly (aka Enlarged Spleen)

The doctors said the first year after transplant is always the hardest; I’d say that’s an understatement. Don’t get me wrong, I feel better, better than I have in several years. I can walk, climb stairs, do yoga, take dance class, clean my house, drive, and most importantly I can breath. It’s amazing the little things we don’t really think about that we take for granted when we are able bodied and don’t have so many limitations. Just lifting yourself off the toilet can be a struggle when your sick and dying, but just as quickly as life can go to hell in a hand basket it can also turn on a dime.

This first year it can swing up and down. I was thinking everything was going OK until I started having some pain in my abdomen. Today I just couldn’t take it anymore and I called my hematologist, transplant team, and local general doctor. I’m still waiting on blood test results but the ultrasound confirmed an enlarged spleen. I guess you could say this is the down swing.

To Dance

7 Months Post Transplant!

I can’t even express how amazing it was to be in a dance class this weekend. It’s hard to believe that it’s been just about seven months since my heart transplant and I’m able to do things I haven’t been able to do in more years than I care to count. I can’t thank Wyoming Dance Arts enough for offering an adult class and Aaron Wood for being a wonderful and thoughtful instructor. I’m counting the days until Saturday so I can do it again! Meanwhile I have yoga on Monday and Wednesday; I just need to keep moving and working on my flexibility. More than ever I know what I need to do…DANCE, and dancing is going to help me heal.

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.