One Hundred Twenty Nine Thousand Six LVAD Beats

One Hundred Twenty Nine Thousand Six LVAD Beats
Is how I measure a DAY!
Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp,wisp….. My LVAD just keeps pumping away; somewhere in the neighborhood of One Hundred Twenty Nine Thousand Six Hundred Minutes – EVERYDAY! It is definitely audible in a quiet room and something I can always feel working, almost regardless of the activity. Its beat is pretty strong, think of how you feel your heart - when you have been scared shitless, or run to catch a plane. I am not complaining, just a frustration. I saw the theatrical product of Dolly Pardon’s “9 to 5”. The thought crossed my mind of what if my LVAD only needed to run “9 to 5”. Of course that would only be 43,200 beats. Unfortunately it must work relentlessly 24 hours per day. Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… on it goes.
Today was a beautiful day. But because of my LVAD, I am not only still here; but I had a fairly typical Sunday as compared to before all this heart failure business. We rose early so we could watch Meet The Press. Actually this is something I never used to do as I never really had or made the time to keep up with politics. So I can say LVAD has definitely allowed me to do things had wished I could do.
Then we went to our little Farmers Market in Studio City. It is just around the corner so to speak. Afterwards, it is off the Trader Joe’s and other errands. Got home and put a big o’ kettle of red beans and rice on the stove. (Oh I miss going to New Orleans) I don’t really know how to make a little bit of anything as it never is quite right until the kettle is full. I guess it is a carryover from my childhood where dinner was “supper” and having neighbors over to eat was not un common (or vica versa) just an opportunity to share our table and our lives. (Of course we had a big ole freezer for leftovers also.)
Anyway, from the kitchen I proceeded to work in my patio garden. We live in a condo, so the patio is the only garden I have – BUT IT HAS BECOME A JUNGLE OUT THERE. I start cuttings for friends, dividing other plants, deadheading flowers to promote more flowers. I even have 8 hummingbird feeders. A friend got me started by giving me a very nice blown glass feeder for my birthday a couple of years ago. Now I just keep adding to the collection. The funny thing is the hummingbirds seem to like the cheep tacky plastic feeders the best! Go figure.
It is sort of my little sanctuary. It has moon flowers, cardinal vine, cypress vines, begonias, impatiens, cannas, dahlias, a couple of roses, and yellow and red angels trumpet. And to think this patio is only the width of our condo (about23 feet) and about 6 or 7 feet deep. I barely have room for a chair and small table. It is nice to go out and relax under the shade of a makeshift arbor. It is very quiet where we live and you can almost forget that we live in the “big city”. Quiet enough I can still hear Thump, thump, wisp, wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp…… It never quite goes away.
All in all, it really was a great day. I even went and soaked my legs in the hot tub. I cannot get total emerged, but even going mid thigh was real treat. I know it is risky. If I slide and got the batteries or my controller wet, it would sort of be “all she wrote”. But life is all about defining the risk one is willing to take in almost every aspect of our lives. Flying, driving, living, getting out of bed in morning; they all have some element of risk.
I, my partner, and my family went for the risk of having this LVAD implant. And I will be forever grateful for that decision and their support of my living and my continued recovery. But I have made it, I survived and am alive. Thump, thump, wisp,wisp; Thump, thump, wisp, wisp; Thump, thump, wisp, wisp……it will always serve as a reminder that I am alive. The rest is up to me to define or determine what risks I live with. When I think that with the flip of a switch or my device fails for some mechanical reason, my LVAD could stop. AND SO MY LIFE WOULD PROBABLY END ALSO.
So I do the things I want to do as long as my stamina holds up and I feel like I can control the risk. There now are some things I will not do when I am alone. It is not that I feel I couldn’t do them on my own, but if………I actually had one of the situations not long ago after coming home. I learned I can’t just ABSENTMINDEDLY do whatever action/thought that comes to mind or presents itself in my life.
I remember about 6 weeks after I came home from the hospital I did have one of those gotcha moments. I was in the living room and saw that one of the vertical blind slats had come down. I thought to myself, no big deal, I can re-hang it. Of course the traverse rod was not in reach from the floor so I grab the nearest chair to stand on – a spongy one at that. I know I have done this several times before. So I stood on the chair – and GOTCHA! I lost my balance and fell head first on the floor. I was bleeding, LVAD controller alarm was sounding, can I get up, what do I do? As much as had preiosly walked through scenarios of an emergency, it never totally prepares you. Every situation is different and I know I must assess the situation immediately, Do I need help, how much help. Do I need an ambulance? Lord I really didn’t want to have to call 911.
I could get up and discover that I had broken one of the battery holsters and I could connect only one of the batteries! Fortunately there are two batteries that operate in tandem, so it was still working from the one battery. But it does mean I need to go upstairs and get on my power tether of my PBU (power base unit). I think need to attend to the cut on head as it was bleeding profusely.
My first concern was to stop the bleeding. My head really hurt, but I hit a Mexican tile floor pretty hard. So I put ice in a towel and applied pressure to my head…… the LVAD alarm is still sounding. I thought, OK I have to make plan of things I need to do. The bleeding does not seem to be slowing down as I feel the warm trail of blood curling around my neck.
I realize I need more help than I can provide myself. I tried my partner’s cell phone, but it is here in the kitchen. OH GOD….I realize I really do need to call 911! Something I really didn’t relish doing but it had to be done. I certainly was not successful in trying to stabilize my situation. I was still bleeding profusely and I need to get hooked up to the LVAD power supply upstairs. I have to call 911. I don’t want them breaking the front door open…..oh but the patio door is open, only the screen door is closed. OK.
So I go upstairs, hook up to my PBU….the alarm goes silent. Thanks God, I was really getting scared that I may have damaged the LVAD from the fall, but all seems to be fine now. Now, call 911, there is blood everywhere, it is not clotting, oh it hurts. The 911 operator was great, she stayed on the phone until the ambulance arrived. I had to explain my special circumstances. The ambulance must be able to provide 120 volt for my power supply to hook up. It and all my gear must go with me. I am still bleeding. I will admit the emergency folks and fireman were extremely attentive. I explained my LVAD setup. They managed to carry me and my gear (and all my med’s, batteries, etc. l the way down to the ambulance – over two flights – 37 stairs to be exact.
So off to the hospital we go. I couldn’t convince them to take me to Cedars and ended up at Sherman OAKS. So I give another class on my LVAD to their emergency team. Of course they have never seen it before, so I sort of was the patient on parade. That’s OK, I actually do not mind talking about the LVAD. Meanwhile they had to pump 4 pints of blood in me. (We won’t discuss what a mess the house was left in as I had been in almost every area and bleeding apparently heavier than I thought. They ended up stapling my head, getting me stabilized and then transferred to Cedars Sinai Hospital. I was in the hospital for 4 days and release. Although I did get a stern scolding on checkout! I was lucky, lucky indeed!
Fortunately I did not have a concussion. I also never lost consciousness or an overwhelming sense of panic. I think I stayed relatively calm through the whole thing. But…… what if I had lost consciousness at any point before calling 911? I probably would not be alive. Instead, my partner would have come found me bled out on the floor. I don’t need to have someone else around at all times. But I certainly do if I am doing any major physical activity where I could fall. (I won’t even change a light switch Don or a good friend here.
Things very easily could have turned out different. It certainly was another life changing event that remolded my way of approaching things. I think about what could go awry and I try to be prepared. Do I have enough spare batteries with me? Do I have my cell phone? Am I up to the task physically? What impact will the activity have on my heart/LVAD? How can I minimize a negative outcome?
I do still push limits or the line in the sand as they say. I probably am a little more independent and self sufficient than other LVAD Destination Therapy recipients. I workout at the gym, I ride my bike. I do drive by myself. I could be out of the house for a good part of the day, going to the doctor, running errands, or take my dog for a long walk. If I am home, I probably go up and down the stairs 20-30 times a day. It doesn’t matter which floor I am on, I always seem to want or need something and it is on another floor. Oh well the steps are good for my heart right? I think so.
So things are indeed different and probably will be for the foreseeable future. My LVAD will need to be replaced in the next year or so, but the next generation promises to be quieter and probably will last around 7-10 years verses the 2 years or so for this model. It is also a rotary desire, so I will no longer have a pulse, no traditional method to measure my “equivalent heart rate” or blood pressure. It will be starting a new chapter and relearning what my parameters will be as I adapt to another version of life.