Tomorrow morning, I check in for a cardiac ablation. I'm amazed at how differently I handle stress these days. In years past, I would not be able to concentrate and I'd be a nervous wreck leading up to something. Now, I put off the worry until that day, and I guess I have too much to do to sit around obsessing. I am hoping that the process is not too bad. One doc said they'd put me out, the one doing it tomorrow said I'd be awake for most/all of it. I think I like the PUT ME OUT version better but, he's the boss. I'm looking forward to having this in my rearview mirror. I am really hoping that it works and takes care of this problem, once and for all. This black out and fainting stuff ruined my life for MANY years, and though you can't "cry over spilt milk" or change anything, the more I hear how common this is, the more aggravated I get that it was not diagnosed so long ago, when I first sought answers. I just spoke to my neighbor, who is giving Liv a lift to school in the morning and her son has had similar problems and is starting to have some of the same tests I had years ago. I told her, "I'd get him to an electrophysiologist." Wish someone had told me that all those years ago. So, wish me luck!
Yesterday, my pastor, knowing I've always wanted to hear his daughter sing "Amazing Grace" (she has a beautiful voice) had her sing it to me yesterday, during church service. He sang with her and they both played guitars. This was unexpected and I cried through the rest of the service. Such a nice thing to do for me. He said a prayer with me, as I received communion, and I was so touched by all this, I bawled all the way home. I am blessed.
On a not happy note at all, I have not posted about Paula. Words fail me when I try to explain Paula, but most of you already know her and understand that. I cried like a baby when I read that she'd died. Another bright light extinguished by this damn myeloma. 42. I mean really! 42 years old. I will never be able to wrap my brain around things like this. She was so brave, so darn funny, right up to her last post. She had e-mailed me privately a few weeks ago, asking what I might know about the condition she'd gotten from the MM (she'd seen me comment about it on another blog some time ago) and she apologized for "laying this on me" and was more worried about her beloved Bernard than herself. Really, I just can't seem to find the words to describe how awesome she was and I saw that through a computer screen. I'm sure she was absolutely mind-boggling in person. I so wish this woman was able to stay here. What a huge loss this is, to so many people. We all got ripped off, but of course, she did most of all. My heart goes out to Bernard (and Buddy too.) I wish them God's peace and grace as they move forward from this hard, hard time.
I miss you Paula, and I will NEVER forget you! xx
Monday, June 18, 2012
Saturday, June 2, 2012
Tough week
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.
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.
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