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Archive for November, 2012

Hi All, 

I just wanted to give you the news that the HeartWare LVAD has been approved by the FDA.  You can read all about it here…  Love, Cheryl

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Hi All,

 How are you doing?  We are doing pretty well here despite a couple of recent incidents.  Jim was having a rather bad case of cabin fever so he scheduled a sedan service to take him into work.  His store is located about 40 miles from the house – a good hour’s drive.  I thought it was a great idea because it told me that he’s feeling well.  He asked me to pick him up after work though.  Unfortunately, after work for me is about 5:00 / 5:30 p.m. and with traffic it took me about two hours to get to his place of business.  To say he was tired and grumpy when I got there is an understatement…  Apparently, while he was at work, he came out of his bathroom and caught the power cord for his LVAD on the door knob and nearly ripped the power cord out.  Thankfully, there is an “anchor” that is attached to his stomach that hooks the power cord and helps prevent this type of issue causing serious damage.  I mean this thing is attached to his heart…  He did a good job.  Even with the anchor, his dressing changes have been bloody since then.  Then we get to our home town and we stop somewhere to get takeout (just what a growing boy who’s on the heart transplant list needs – TAKEOUT!), and he was so tired and distracted that when he was switching his LVAD from car power to battery, he accidently unplugged the power source for his LVAD.  It starts shrieking and Jim is just staring at it trying to figure out what he did.  I said don’t panic, and he plugged two power sources back in and all the red lights went out and it went completely dark.  Apparently, it kind of resets…  I held my breath for what seemed like eternity and then at last the LVAD lights and numbers came up like normal.  I asked him if he felt anything and if he was OK, and he said he was fine – just tired, but I did notice he did a little two-step / grab-the-counter maneuver that alarmed me.  (No pun intended)  He wanted to eat at the restaurant, but I decided at that moment (and he agreed) to take it home. 

 Jim would like to do this every Tuesday until the end of the year.  Super…  If that’s the case, I’m going to have to do a crock-pot or something that morning.  I also think a shorter day for Jim is in order but not sure how that’s going to happen if I’m the one picking him up… 

Jim mentioned the “pulling” incident at Clinic and they checked the driveline site and did a cat scan to check the position of the driveline and thankfully everything looked great.  Apparently, the anchor did it’s job…  I shudder to think about what happened that made them realize they need to provide patients with these anchors…  Ugh!!  The rest of his visit was uneventful (uneventful is very good in my mind).  His blood work came back normal, and they thought overall everything looked fine.  His status on the heart tranplant list is 1A.  You typically go to 1A  when you get an LVAD, and you stay at 1A for 30 days.  However, due to Jim’s infection they are keeping him at 1A and their 1A’s are running about a year for transplant.  Please keep him in your prayers – they do work.  Thank you!

Want to hear a secret?  Promise you won’t tell anyone…  I had a dentist appointment this morning.  That’s not the secret…  The thing about the dentist is it’s right across the street from my parent’s house.  Here’s the secret…  After every dentist appointment I’ve had since moving away from my parents, I go to my parent’s house and share a cup of coffee with my Mom (and Dad if he’s not at work!).  It’s a guilty pleasure that I’ve enjoyed for many years now and hope it continues for years to come. 

Signing off now but look for a post soon (hopefully this weekend) about the Gathering quilt show that I went to – it was an awesome show and if you’re a quilter, I really hope you got to enjoy it too.  Take care – lots of love!! 

 Cheryl

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Hi All,

 How did you do during the hurricane?  We fared very well – didn’t lose power and more importantly didn’t lose CABLE!!  It was also fun watching Kendall run from window to window to window to kitchen sliding doors watching all the drama unfold outside.  We had a lot of leaves blowing around (you should have seen my car!) and some branches come down but thankfully nothing was damaged.  Occasionally, I would hear Kendall attack a window trying to catch the leaves as they fly by…  I don’t think she slept all day…  Now that’s saying A LOT for a cat!!!   I am very thankful we didn’t lose power – Jim’s LVAD if he had to go to all batteries has about 10 hours and it’s not really a true 10 hours so I had visions of having to drive to the local ER and sit there with a book for about five hours getting them charged.  My parents do have a generator but for some reason we couldn’t get it to work…  Figures… 

Jim had his weekly LVAD Clinic appointment at 8:30 a.m. Monday morning, and we were debating if we should go or not but when we heard that the storm actually wasn’t going to gear up in our area until about 12:00 noon we decided to go for it!!  It wasn’t too bad driving in and he was the only patient to not cancel so he got a gold star for that…  They did go through everything rather quickly so we could get back home…  We were home at 9:38 a.m.!!  Driving on the upper deck of 93N was a little scary.  The wind gusts were very strong but also people drive like freaking idiots!! 

Needless to say, it was good to get home…  I am lucky in that I was able to work from home that day but it was very slow because a lot of other people had lost power so there weren’t a lot of emails coming in, but I did get some things taken care of – sometimes it’s good to work from home (no interruptions). 

I came in a little late this a.m.  I stayed in bed an extra ½ hour or so to cuddle with Jim for a bit…  He was absolutely freezing, and I was roasting.  It’s very strange.  We were hoping when he got the LVAD that he wouldn’t feel so cold anymore but he’s still always cold.  We fight constantly over what to keep the heat on…  He wants (needs) the heat on 70-72, and I would love it on 65 but know that would never happen…  He cranks the heat while I’m at work and turns it down when I’m on my way home.  I would love to leave the heat cranking for him but 1) it gets expensive and 2) when I feel hot, I just cannot move…  I don’t know why but I’ve always disliked the heat for that reason…  Anyways, I hope everyone fared well during the storm. 

 Lots of Love!!

 Cheryl

 

 

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