A few days ago, I found out that my sister was approved to be a living liver donor. I am still a bit overwhelmed with the emotion of all of this and the magnitude of what this means. I think to sum up how I am feeling, I think the only proper word is one coined by my daughter.... I am scarcited (50 percent scared - 50 percent excited). …
Category: health
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focusing on my health… both related to being healthy and my current medical condition.
Yeah, I know it has been a while. School got tough. Medical condition are always compounding. And most days it is a tough to find much to be enthusiastic about. Yes, there is always hope, but sometimes it is hidden behind a wall of other things. I try to find meaning for all of this as best as possible. That is easier somedays and infuriating other days. I think the things that are toughest to manage are: always being tired …
Today is a day of revolutions. Just a couple of days ago, they opened up the vaccine for 12-15 year olds. My daughters have been anxious to get it. Partially to stop thinking about the virus, and partially to ensure that, when I become imunocomprimised, things will be safe in our home. So last night Joanna looked to see where the girls could get the vaccine, fortunately, it was really easy to get an appointment at the Walgreens near us. …
I had a great office in the basement. But last year, we decided to move everyone around in the house and give the kids their own spaces. Notice I didn’t say bedrooms. Our house has three bedrooms in the main section and then a second master bedroom and micro bedroom in the in-law suite (Joanna’s mother lives with us). But with everyone home all 2020, we decided that the kids needed to be separated. Julie moved to the loft, which …
Today, I got the call. I am officially on the transplant list at VCU. Now the next hurdle is waiting for the phone call. So here is the way this works. Based on bloodwork, they calculate my MELD score (a scoring system for assessing the severity of liver disease). The higher the score the more severe the need for a new liver. So when does a new liver come? If someone went to a restaurant and putting their name on …
One of the craziest parts of liver failure is how much it can mess with my sleep schedule. Every day is a constant battle. I am either wired and can’t sleep… or I am exhausted and can never get enough sleep. Somedays, I am so tired I will sleep off and on throughout the day. This typically is coupled with a headache and the inability to focus on things. It is frustrating to be in this state becouse I constantly …
Today I was thinking about my car…. well…. it isn’t my car anymore. I sold it at the end of 2019. I miss it. It was the greatest car I ever owned. And now, it is someone else’s car. If it wasn’t raining or snowing the top was down. Didn’t matter how hot or cold it was, the top was down. I mean what is the point of owning a convertible if you are going to drive it with the …
There is a good change that by the time you read this, April has come and gone. That is ok. My first real exposure of organ transplants came when my niece Karly, who was five had to get a new liver. That was ten years ago. I signed up as an organ donor shortly there after. I never would have guessed that many years later how this would have all played out. If you are looking for a way to …
The new normal. This is a phrase that people keep using over the past year. I suppose it could mean different things to different people. But, one thing is definitely for sure. As a general rule, normal is anything but…. normal. With everything that has gone on in the past 14 months globally, my new normal started a little before that. For Thanksgiving 2019, we took the kids to Disney World. While there, I started feeling… abnormal. Without going into …