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.

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…

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.

Finding a New Normal and Redefining Boundaries

I’ve been home in Wyoming for almost a month now and it’s been a challenge to find a new normal. I’m still tired, my sleep schedule is off, and I’m generally feeling sad, I guess. I have a lot of things I’d like to do, and I can do them, but I’m so overwhelmed by all of it I don’t know where to start. My house isn’t my house right now, my garage is full of not only things we brought back from Salt Lake City, but also most of the contents of my oldest son and daughter in-law’s apartment; they are living with us temporarily. The old fat cat is back to living in my office, and generally being a pain in my back side with her crankiness. That means my office is a hot mess instead of being a place I can go to decompress.

Nothing is where is should be, or at least that’s how it feels right now. Things don’t stay where they belong, or things are just left where they are set down and left for someone else to pick up. Then my husband likes to tell me about, and sometimes even shows me pictures of, the infractions of the other inhabitants of the house, which makes me feel responsible. I could tell him to handle it himself, but there is a part of me that doesn’t trust that he’ll do it in a way that won’t make things worse. As my oldest son would say “that sounds like a you problem” and it is my problem.

Are there things my husband could do different, of course, but at this point I simply don’t possess the patience for him to figure it out; it’s easier to do it myself. Spoken like a true control freak some who know me would say, but no less true right now. Emotionally I really can’t handle much more. My plate is full dealing with my own inner dialog and trying to help maintain the emotional stability of others around me. It can be emotionally draining a lot of the time. So much there are days I’d rather just stay in bed and sleep the day away and let everyone just fend for themselves and stay out of the drama.

Of course, burying my head in the sand and not dealing with my surroundings isn’t helping me move forward. After speaking with my therapist this week, I realize I need to set some clearly defined boundaries and expectations, then follow up with consequences if those around me chose to over step. The boundaries and expectations aren’t the hard part, it’s how do I impose consequences for the adults around me who really should know better.

Right now, I’m feeling like I need to just take a step back and take care of me for a little bit and do the things that make me feel better. If anyone wants my opinion, I’ll be happy to give it, but there will be no more unsolicited advice from me, not that any of them have ever listened to me anyway, so, why waste my breath. If you’re not living in my home, I don’t have anything to say about how you live your life. In my home is a little different story since I have to live here after you move on.

I tried to address the boundary conversation with my husband today and unfortunately it didn’t go very well. It kind of makes me dread having to broach the subject with the other folks in the house. I know it needs to be done, I just don’t know where to start.

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.