This week, I learned that Sean Tiernan, from the UK, died of MM. It is sobering, scary, and depressing to know how fast things can turn. His brother, Nigel, who was his donor for his allo, told us on his blog that it was pneumonia that was the culprit. From what I understand, pneumonia and kidney failure are the top 2 things that take an MM’ers life. I would think that sepsis is probably up there too. Sean was an MM’er whose disease refused to back down, to whatever they threw at it. I am always just ever so slightly comforted though, when I know someone has had an allo transplant, when chemo was failing them. At least, you know they left no stone unturned in fighting this damn disease. I know a lot of people are against allos, but after meeting people, in person and on the internet, who were saved by them, had long remissions, and in a few cases, were cured, I think they are a useful tool, especially when chemos are failing and options are few. I feel awful for Sean and his family. I know this is a huge loss for those who loved this special, dynamic man. In his last post, he talked about driving his bright yellow car, and how it cheered him up. I intend to wear bright yellow on the day of his service to pay homage to him. I admire his attitude and fighting spirit.
Things did not go well for our family this week, either. I had another episode of SVT and Tim rushed me to the ER at 6 in the morning. This one was slower than the last and I used some of the techniques they told me about to try to stop it, and after coughing repeatedly in the truck on the way to the hospital, I broke the arrhythmia. I decided to go to the ER and get hooked up to an EKG monitor just to be sure I was out of the woods and that wound up being a bad decision. My EKG was abnormal and they thought I’d had a heart attack. They gave me aspirin, more BP meds, and asked me questions about pain or vomiting, and I knew where they were going. They were about to rush me, by ambulance, to their main hospital(this hospital is being taken over by the one Tim uses for his MM, but is not fully open yet, just the ER and a few testing labs). Luckily, the doc checked my EKG from their records, from when I wound up in their main ER 6 weeks prior, and saw that my EKG was abnormal then. I think my EKG’s have always been abnormal, least that’s what I was told, but am unsure if this is a new snafu, or what.
I think I’m gonna have to walk around with EKG strips in my purse ’cause this sets off alarms every time and the docs scare the heck out of me. They then saw something new in my heart on the chest x-ray and decided to do a CT scan, with contrast, to make sure I did not pass a pulmonary embolism into my heart. ARE WE HAVING FUN YET?! I’m thinking, “it was SVT again, just send me home!” When all was said and done, I went home with orders to get back to the electrophysiologist the next day, and a HUGE, ugly bruise at the IV site.
I saw the head of the electrophysiology practice the next morning, nice guy, who said it’s time to get going with this ablation procedure. Told me my risk of walking around like this is much higher than the risks of this technique and he does not want me going on vacation before it’s done. OKEY DOKE. So we are setting it up for this month. Possibly the 19th. I am a bit more nervous about this SVT business, because this one was sparked off after one of my little skippy heart beats and that happens to me ALL the time. I’m also on a BP med that is supposed to stop arrhythmias, so it’s a bit disconcerting that this still happened, despite that. The good thing is, I realize this procedure really is not a choice for me, and I HATE making scary decisions. Also, this doc explained things even further, and told me that if this thing is what he thinks I have (something called a bypass tract),
they will be in a safer area of my heart to fix it and the risk of damaging the good electrical nodes, and needing a pacemaker then, is pretty much non-existant. That’s GOOD to know. The hardest part is upsetting my kid. That poor girl has seen way too much, in the way of medical scares, and I had to wake her up, tell her I was going to the ER, and she had to get ready for school in an empty house, and call her friend to see if her mom could give her a lift. I drive this friend home from school everyday,(her mom works) so that’s not an issue, but I so wish Liv’s life did not have to be so hard.
Last week, she called me into the living room. She was watching “Say yes to the dress,” a show about picking out wedding gowns, and the bride-to-be’s father has MM, and amyloidosis. He walked her down the aisle, then married them(he is a minister) and then spoke about how glad he was that he was still alive for her wedding. CR**. I told her that having Amyloidosis is pretty bad(though in truth, I know people doing very well with it, it depends which kind you have) and so kinda hinted like THAT was the deadly part. OIY! The older they get, the harder it is to hide things from them.
Anyway, the upside to all this heart stuff, is that I have had fainting spells and heartrate issues since I was about 12. It only took 35 LONG, screwed up years, but I think they finally have it all figured out, and I am hoping it will all be a thing of the past, once this procedure is done. I just have to believe that these scary episodes were God’s way of getting me all fixed up.
For now, we are still soldiering on, just sporting a few “war wounds” it seems.