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Posts Tagged ‘Heartware’

One day I realized that a certain special someone in my life was turning 50.  I realize that this is a large enough milestone to warrant a party (pronounced “Pahtay!!”) but that also this certain special someone almost didn’t make it to 50 and has had a bit of a tough time these past couple of years.

I had this thought a few months ago and decided to call Jim’s good friend, Patrick who lives in Colorado.  I mentioned my idea of having a surprise party for Jim to him, and he too agreed that we should most definitely throw a “Pahtay”, and that he and his beautiful fiancée, Tanya would “be there, be square!”  I then called Jim’s father and mentioned my idea, and he thought it was a great idea as well…

Jim hasn’t seen Pat in a few years so I thought it would be a great surprise / pick me up for Jim.

Pat and I talked about the wording for the invitations, and I put together a little invite.  I had also decided that Jim would find out about the party when Pat came through the door the day before his party.  Due to current circumstances, having people hide behind furniture and jump out screaming SURPRISE probably not a good idea.  We don’t need any LVAD alarms going off!!

Then I get the call from Jim telling me about the “unconventional experiment” that Tufts wanted to do and that if any sign of an infection shows up they are probably going to have to do surgery.

CRAP!!!

I asked Jim when they wanted to admit him and he indicated in a couple of days…

I called my Mom and said I think I’ll hold off sending out these invitations and just wait and see what direction this “experiment” goes…  Thankfully, that had ended well (see previous post) and I sent out the invites.

So I don’t have enough going on in my life with working full time, caregiver for my big, handsome Hubby, keeping a house and planning his surprise 50th B-day party; one week before the party, I decide it is now time to fix up the first floor bathroom.

My family and friends all thought I was Certifiable…  Jim (so funny!) just couldn’t understand the sense of urgency all of a sudden.  I think it subconsciously was a way to distract me.

I am famous for slipping and letting things out beforehand.  It’s also hard to be excited about something and not be able to tell someone!!

The other issue was that I usually make a big deal about his birthday.  I invite immediate family over and make a special Beef Wellington dinner and bake a chocolate cake and just really talk about it non-stop beforehand.  This time I wasn’t saying a word and wondered if Jim was picking up on that.  So I decide to ask him every so often what he wanted to do for his birthday and he just kept saying “let’s see how I’m feeling.”

I’m thinking you better be feeling pretty good, Hon because we’ve got like 30 people or so coming to the house!!!

Meanwhile, back to the bathroom…

Paper-backed, vinyl wallpaper, thank you very much.

This wallpaper (while pretty in its own right) had no business being in a bathroom.  Just took away and overpowered the tile.  It had been put up by a previous renter, and I had always thought it belonged in a dining room – definitely not a bathroom but let me know what you think…

Bathroom1

It took almost the entire week to remove it and get the walls prepped for painting.  Jim still doesn’t understand where this urgent mission came from, but came with me to Lowe’s to get some type of a wallpaper remover.  Unfortunately, they are all extremely toxic, and I didn’t want anything like that in the house so one of the women there said to fill a spray bottle with white vinegar and extremely hot water.  Score the wallpaper, spray the wall and then wait 10-15 minutes and then you will be able to scrape it off.

Bathroom3

You really do need to let that solution sit on the wallpaper for a good 10-15 minutes before you try to remove it – works better that way.  Also, don’t do what I did which was spray the wall and then start watching the Olympics and forget to go back to scrape…  Then it would be too dry, and I would need to spray all over again…

Finally, with the help of my Dad and Jim, the bathroom is finished.  I had been working late a few nights that week and would go home to scrape wallpaper and wash the walls but the night that I was supposed to spackle,

I LOVES to spackle!!

I was just beyond tired, and decided to take the night off and just watch the Olympics.  Jim ended up spackling for me that night which was great because that meant that we were still on schedule for his Party!!

My Dad was a huge help – he installed a new faucet, a new light fixture and he shaved down the bathroom door because it would scrape on the floor and just annoy the crap out of us!!

Thank you, DAD!!!!

All done!!  Here is the finished product!! (and yes, we have already been informed that we are running low on toilet paper – thank you very much!!)

Newbathroom1

Newbathroom2Much better!!

So everyone has RSVP’d, food has been ordered, the decorations are all set and the cake (OMG – wait til you see the cake!!!) has been ordered.  We are pretty much good to go.  At the time my only concern was knowing the amount of people coming versus the amount of chairs that I own.  I have six dining room chairs in a consignment shop (Dorothy’s Lane) in Melrose, and wondered if it would be a bad idea to call and ask if I could borrow them back for a weekend…

Then we start getting the weather reports.

Storm

 Storm2

First, we are told that Boston is getting a dusting…  Then they are talking 3-6 inches.  Then I get a text from my brother – they have now upgraded the storm to a full-blown blizzard.  We are right on that cusp where we could get anything from 3 inches to 16 inches depending on which way the bands went…

Super…

I called my Mom and told her, and we both just started laughing.  Of course, we would be having a blizzard.  Jim’s friends Pat and Tanya flew in on the Thursday prior (during a snowstorm) so I mistakenly thought it would be clear sailing after that…  They are now up in Maine visiting family and would be driving down during this storm on Saturday.

We just decided that Mother Nature is going to do whatever it is she wants to do, and we cannot control that and people can decide at the time what to do.  It was just too close to call.  We could get three inches or 12 inches.  It was basically a wait and see…

Saturday morning I am usually out the door to do errands first thing.  This Saturday I am up but not out the door.  As the day goes on, I do start to get concerned about the storm and talk with Jim about cancelling dinner arrangements – he still doesn’t know that Pat and Tanya are coming over.

He decides to see about making hotel reservations so we can still have a nice night.

Whoa, hold that Tiger.

I finally end up asking him to just roll with it for a while so he started to figure out that something was going on…  Saturday afternoon I get a text from Pat.  He and Tanya are on their way down.  I cancelled the dinner reservations and decided as a back-up plan to make a meatloaf dinner.  I just didn’t want anyone on the road during the height of the storm.  They had been predicting the worst of it around dinnertime.

Pat knocks on the door, and I asked Jim to answer it for me.  If I was thinking, I would have opened the door so at least I could have seen Jim’s face when he saw Pat standing there…

Jim opens the door and sees Pat standing on the porch…

Processing…

Processing…

Still processing…

Tanya and I were laughing so hard.

To say Jim was happy to see them is an understatement.  It was awesome that they were able to make it out from Colorado for Jim’s 50th.

Jim and Pat

See that smile – that’s all I wanted to see…  (Jim’s on the left)

Sunday, February 16th was Jim’s birthday and surprise party.  The snowstorm Saturday night fizzled and Boston got maybe 3-4 inches tops!!  Jim’s family from New York was able to make it in and family and friends from all over came – I think we had about 25 people.  The food was great!!  I think I possibly ordered a little too much, but I’m Italian, and we believe in providing a variety of food to make sure everyone is happy!!

Happy Happy!!

It was catered by the Chateau in Burlington, MA.  Good tip from my brother…  They did an awesome job.  Delivered on time and everything tasted delicious!

Here is Jim’s cake that I was telling you about earlier:

JimCake

Just awesome!!

This was done by Terri at Cakes by Terri and she did a FANTASTIC job!!!  She was a joy to work with and her prices are beyond reasonable too.  I called her and found out that she’s actually right around the corner from where I work.  I explained what Jim has been going through, and how I have started calling him my fighter / warrior but that he also loves Samurai Warriors.  She told me that she wanted to do something fun for him and this is what she came up with.  Jim (actually everyone) loved his cake.  Not only was it whimsical (it was really nice to see him smile / laugh), but it also tasted great – extremely moist.  All our guests raved about how good it tasted.

And I just love the sandals!!  Cracked me up!!

Here is a photo of the slider in the kitchen all decorated for the party (and also our neighbor’s house)…

Window decorations

I had put Kendall in our bedroom for the day so I wouldn’t have to worry about her getting stepped on or accidentally let outside.  So I didn’t realize until the next day that those decorations around the window scared the heck out of her.  Sunday night after the party she came upstairs with us when we went to bed and Jim said she was in bed / out of bed / in bed / out of bed all night long which is strange…  The next morning I went to feed her and realized she hadn’t eaten any of her dinner.

That’s weird!!

I realized that she was afraid of the window decorations.  They must look like one giant freaking spider or octopus or something to her.  Plus, when the heat came on, the decorations would start moving…   She just wouldn’t go into the kitchen until I had taken them down, thrown them away and then I had to pick her up and show her that it was gone…

My poor baby!!!

Unfortunately, her litter box is in that little bathroom off the kitchen that we had spoken about earlier…  Ugh!!

I had Monday off for President’s Day, and we spent some time with Patrick and Tanya before they had to head back to Colorado.

I had taken Tuesday off to have some down time so was able to get into my sewing room for a little bit.  It was nice to finally relax for a while.  I would like to do that again actually :)…

That’s all we have to report for now.  Thanks so much for reading – appreciate it!!

Please be sure to “like” and “follow” the blog!!

Love you guys!!

Cheryl

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Hi All,

Well that was a rather long lapse in updates, wasn’t it?

I don’t know why – I love updating you guys, but I guess things have been uneventful, and despite the realities, I was doing my best to enjoy the summer.

Are you enjoying the fall?  This is my absolute favorite time of year!  The colors, the weather and the food – love them all!!  I love cooking and going to Farmer’s Markets this time of year too!

There have been some awesome quilt shows every single weekend (no wonder there haven’t been updates), and they will continue right up to November and then the craft fairs start – whoo hoo!!  Just in time for the Holidays.

I think I told you this already, but I finished the wedding quilt.  I decided to send it out to a friend (Laurena’s Longarm Quilting) to get quilted because I’d like it done in this century…

Plus, she will do a much better job.

I also finished a Block-of-the-Month that I had been working on at Cambridge Quilts.  Laurena is quilting that one as well.

So as you can see, I was on a roll with getting some quilting done.

Then some Yellow Jackets decided to invade my sewing room!!

I told Jim I feel like a hypocrite because when they’re outside, they are God’s Little Creatures.  However, when they are in the house – it’s all-out WAR!

We knew we had a hive in the roof over the back porch (which happens to be underneath my sewing room), but I figured the next cold day

(like in February)

I would go out there and spray…  We also assumed it was small because we didn’t see any evidence of it until the end of August.  Kendall was staring INTENTLY out the glass doors off the kitchen one day, and I had one of those  “what they heck are you looking at” moments and following her gaze saw the Yellow Jackets buzzing around an opening in the roof over the back porch – UGH!!

I had been getting an ad hoc Yellow Jacket, usually dead, on the rug in my sewing room.  I just assumed they had followed one of us into the house.

I would pick it up and flush it down the toilet.

Then wonder if it was really dead the next time I was doing tinkle…

One night when I was going to bed, I saw Kendall laying on the kitty condo that’s in my sewing room.

She needed her own space for us to co-exist in there.  As you can see, she likes using the thread on my sewing machine to floss her toofies.

photo-Kendall sewing

So I walked in to say goodnight to her, and I noticed that there were Yellow Jackets flying around, one on the rug, one on the baseboard and there was a rather large one on the window right above her head and she’s just lying there looking at me like “They’re my friends, Mom!!”

Super…

I grabbed Kendall, bolted out of the room, shut the door and filled the gap between the door and the floor with a towel.  Time to call an exterminator…  Jim called A-1 Exterminators, and they came out the next day.

The hive ended up being much larger than we thought.  Jim Face Time’d me so I could see the mass exodus when the exterminator, Michael, started doing his thing.  I am happy to report that so far there is no more activity inside or outside the house.

So there has pretty much been a quilt show every weekend this fall and it has been great getting out and seeing people I haven’t seen in ages.  It’s very inspiring to see what other people are working on.  I want to blog about them, but I’m still not sure what the etiquette is yet for blogging about other people and posting pictures of their quilts…  Need to look into that a bit more.  Stay tuned…

I also rejoined my Quilting Guild – Rising Star Quilters and it was great to get to a meeting and reconnect with everyone.

Too many desserts though, my friends.  Way too many desserts available at these meetings…

Anyways, one of my good friends Bethany met me at the meeting last month, and she handed me a gift bag and told me to open it when I looked at her perplexed.  She said you will understand when you see what it is.  It was a wall-hanging that I had fallen in love with at a local quilt show and must have bought about $20 worth of raffle tickets for it.  Bethany said she laughed when she found out that she won it and as soon as she picked it up, she put it aside for me.

Thank you, Bethie!!  I do love it and it is hanging up!!

Halloween LadiesV4

Isn’t it adorable!  Halloween is one of my favorite holidays!!

I have the best friends in the world!!  One time one of my friends Kathy had bought Bethany, Mary and myself some raffle tickets.  I ended up having a raffle number called and when I went up to pick a prize I saw a bag of silk fabrics that I knew Mary would love.  So Kathy bought the tickets, I won the prize and Mary gets the prize!!

I started an embroidery project.  It’s very cute…  It’s a snowman for every month of the year and I bought these really cute red and green plaids to use as a border around each block to make a little quilt.

I finished January.  It’s not perfect but it’s keeping my hands busy and hopefully less likely to go grab a snack from the kitchen…

Jan Snowman

I have February ready to go in the hoop.  Believe it or not, I used to teach embroidery (silk ribbon embroidery – SWOON!!) but that was years ago and now I’m lucky if I remember how to thread the needle.

Did the eye of sewing needles get smaller?

Oh it’s me?

My eyes?

Oh – OK.

So what’s going on with Jim?  Let’s see – not much new.  We are still waiting for the call.

He really wasn’t feeling well for a long period of time.  I was very worried…  He was extremely lightheaded whenever he stood up (the heat during the summer months didn’t help), and he was coughing to the point of blacking out a few times.

I really didn’t like having to go to work and leaving him by himself.

We mentioned this to his team at Tufts and they tweaked his meds and took him off one of the meds that is known to cause these symptoms, and now thankfully he’s feeling much better.  I’m not so concerned about leaving the house to go to work, and I have even gone out after dinner to do a few errands, which was unheard of a few weeks ago.  Sometimes I swear the meds are worse than the disease…

Yesterday the visiting nurse came and among other things, he did bloodwork.  Around 3:00 p.m. yesterday afternoon I get a call at work from Jim saying that Tufts called.  His INR was too low and they wanted to admit him for “therapy”.  He said to them you guys usually just tell me to take more Coumadin and they said nope – we want you in here for therapy…  To say he was a tad angry is an understatement, but he’s still in the hospital and will probably be there for the weekend.

Well, it’s very late and I’m tired so I’m going to end this.  I promise to write more frequent!!  Hope everyone is doing well.

Lots of Love!!

Cheryl

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Hi All,

How are you doing?  We are doing pretty well here.  Apologies for the lack of posting on the blog but really haven’t had much to report to you…

On Mother’s Day we had my Mom and Dad over for a nice lunch.  I had made The Pioneer Woman’s Baked Ziti with a salad, and I “attempted” to make Simply Recipe’s Walnut Mocha Torte.  I thought it looked so delicious in the photo and not too difficult to make.

Ah-hem…

Let’s just say I’m better at cooking than I am at baking…

My last baking “incident” was attempting to make We Are Not Martha’s Blood Orange Tart.

No, I’m not addicted to food blogs…  Why do you ask?

Anyways, the Blood Orange tart looked beautiful on their blog (the pictures were gorgeous!) and didn’t look difficult at all to make…  Sues makes everything look easy…  I even “attempted” to make the crust from scratch…

However, when we sat down to eat the tart, we needed a table saw to cut through it.

My Mom very innocently asked me if I had made the crust myself from scratch, and I said “why yes, I did – thank you for noticing!!” – as we were literally sawing away at the crust with our knives!!  We laughed so hard after that…

The custard part of the tart was very delicious.  However, the color of my tart versus what was pictured on their blog was very very different…  Hers was a gorgeous shade of pink.  Mine was more of a muddy gray color…  Next time I might add some food coloring to jazz it up a bit…

I think I know what went wrong with the crust.  I made it

Just kidding (slightly).

I want to try it again but next time I will take my time working the butter into the flour.  Or is it the flour into the butter?  Does it matter?  Someone help me…

So back to the Walnut Mocha Torte…

I got up early on Mother’s Day, and I completed each step to make this tart as meticulously as I possibly could.

This was for Mom after all!!

I wanted it to be special.  However, the first issue was I realized I had inadvertently added one cup of sugar instead of the specified three-quarter cup because instead of grabbing the quarter-sized measuring cup, I had grabbed the third of a cup sized measuring cup.

Super

OK – so it will be a little bit sweeter.  No problem, I thought.  Moving on…

I finished the batter, filled two cake pans and popped them into the oven.  It said to cook for 20-30 minutes, and typically I will cook for the least amount required because you can always add more time, right?

Right?

Twenty minutes later this sucker was DONE.  When I opened the oven door, I gasped because it had pulled away from the sides of the pans and looked very very dry…  Actually, when I touched one of them, it made a “crunchy sound…”

Eeeek…

Checked the oven temperature and it was the right temperature, but think I will pick up an oven thermometer to make sure the temperature is accurate inside the oven…

At this point, I start thinking that I really should have picked up that back-up dessert from the grocery store…

Moving on again…  I start on the frosting…

Take heavy whipping cream and beat until if you beat anymore it will turn into butter.  ?????

Okey dokey…

I took heavy cream (it didn’t say heavy “whipping” cream – does that make a difference?) and beat it until guess what – it became butter…  I then added the other ingredients which consisted of some sugar, melted chocolate chips and some strong coffee that was prepared in advance and long story short it just literally fell apart in the bowl…  Didn’t thicken at all.  I even tried to add more corn starch but it was a soupy mess.  I had over whipped the cream but seriously how do you know when to stop before it becomes butter??  I will also buy heavy whipping cream next time just to see if there is a difference.

I was so angry and was ready to throw the entire cake and frosting away and run to the grocery store when Jim asked what I was planning on doing with the cake.  I said why don’t we just try it and at least see how it tastes.  If it’s OK, maybe I’ll just pick up some frosting from the grocery store.  He was happy I said that (and surprised because he knew how mad I was) but he cut a sliver from the cake and tried it.  Then he cut a piece exactly opposite from his first cut (basically cutting one layer in half) to let me try it.  Then he pushed the two halves together…

A little frosting and no one will know the difference!!

IT WAS ABSOLUTELY DELICIOUS!!

So off I run to the grocery store thinking I would buy one of those new Cool Whip frostings (my Hubby’s idea) that they have been advertising, but unfortunately

(or should I say of course!!)

they weren’t out yet at the time…  I instead found the new Dunkin Hines Frosting Creations where you buy a canister of frosting and an individual flavoring packet.  I was thrilled to find a Mocha flavored one…  PERFECT!

It tasted good (very sweet!) but it worked…

At this point the cakes were out of their pans, on cooling racks

and

had

fallen…

I mean I’ve heard of cakes falling before, but had never seen a cake fall to this extent…  I flipped a cake layer over and placed it on top of the other cake layer thinking it would look better but didn’t make any freaking difference whatsoever!

No exaggeration – the center of the two cakes when it was together was about a half-inch thick.

I wish I had some fruit at the time that I could have mounded in the center of the cake!  I made the best of it.  Frosted it and dubbed it

Crater Cake…

When it was time for dessert, I brought it out to Mom, and we all had a good laugh at the expense of my (lack of) baking skills, but it did really taste delicious.  So delicious that I will try it again.

I now know that too much sugar can cause a cake to fall, and I definitely had added too much sugar and the house may have been too muggy – does that cause a cake to fall?  I’ll have to Google that one…

Jim Update:

Jim and I walked 1.4 miles a few weeks ago.  He did great, and I was really proud that he pushed himself.  We did stop a few times so he could rest and catch his breath so it took approximately an hour.

Now Jim has not been feeling that well over the past couple of weeks, and his weight has increased which is a sign of too much fluid (volume).  Also, when he’s sleeping at night his breathing is very raspy.  You could even tell from how he was talking that he was very short of breath.  For some reason his breathing capacity has diminished in the past few weeks.  That was a change that really disturbed me.

Something is wrong…

He finally felt bad enough to call the clinic a few days ago, and they increased his diuretics but this time it was like the diuretics stopped working.  They added another, more potent diuretic, and asked him to come in this morning for an Echocardiogram (echo), and they were going to adjust his LVAD settings to see if that would improve his symptoms.

I was in the room while they did the echo and “played” with the settings of his LVAD.  There were three doctors, two radiologists plus me and one of the LVAD Clinic Coordinators, Darlene.  Darlene came over to me and said I don’t think there were this many people in the room when they did his surgery.

LOL – she is too funny.

I did want to take a photo for the blog – it was comforting watching all five of them really focusing on Jim…  I chickened out though and didn’t take the picture but vowed next time – I will take one…

I think I said that with the last photo op I chickened out on… 🙂

They increased the RPMs of his LVAD pump and watched the echo to see the affect.  When they were done, they asked Jim to stand up and immediately the LVAD monitor went flat line.  That gives doctors a lot of information…

NOTE:  Not flat line like we see on TV…

When you sit for a period of time and then stand up and sometimes get lightheaded, that’s because for a few seconds, blood levels have dropped.  This is normal and can happen with everyone…

With LVADers, there is a “suction” that happens because not enough blood is being sent to the heart but the pump is still working.  They immediately told Jim to sit back down, and they actually ended up lowering his LVAD pump RPMs to less than what it was when he walked in the place.

They admitted that they had expected to see the right side of his heart not working properly but thankfully it actually showed improvement, and had shrunk from his echo of a year ago.

A good thing…

They were able to rule out anything bad at this point but wanted some blood work done and depending on how the blood work comes out, they are thinking of adding that potent diuretic to his pill regimen on a once-a-week basis to see if that helps.

If he doesn’t improve, they are going to have to “go in” (probably do a cardiac catheterization), and see if they can find out what’s going on.  Ugh!!

I will say that since Jim took that potent diuretic, his breathing last night was much improved – quieter.  But he still gets breathless when having a conversation.  I don’t like that…

This is the life of an LVADer.  Always trying to maintain a very delicate balance and trying to stay on top of any changes that could be signals of something going wrong.

That’s it for now.  What are your plans for the long weekend?  Even though the weather isn’t supposed to cooperate, it can still be FUN :)!!

Take care and LOTS OF LOVE to you guys!!

Cheryl

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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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Hi there – Last night I got home from work and thought Jim looked a little down while he was sitting on the sofa.  So I went in and sat next to  him and did something I haven’t done enough of lately…  I moved his LVAD controller out of the way and sat next to him putting my head on his shoulder and snuggled…  He said, “this is nice!”  Then he said, “I miss this…”  Then we just stayed there for a few minutes in complete silence…  My back was barking because it was a bit of an odd twist but I didn’t care.  It was nice to snuggle.  Then I heard it…  The quiet hum of Jim’s LVAD.  Quietly, diligently doing it’s job keeping blood moving throughout his body.  In the hospital they had put a stethoscope to Jim’s chest so I could hear the hum of the LVAD but for some reason I couldn’t hear it at the time…    Now I could hear it perfectly…   

Jim is doing extremely well.  We did so much walking this weekend and I’m so proud of him because he really pushed himself by opting to walk up hills instead of waiting for me to go get the car. 

I actually did some sewing this weekend.  I haven’t sewn in over two years.  It felt good to finally use the sewing room – I mean studio!!  I was told I don’t have a sewing room, I have a studio – that sounds much better.  I made Jim a new strap for the bag that holds his LVAD controller out of a beautiful Japanese fabric with dragons on it.  We both love dragons.  Next, and I’m embarrassed about this so please don’t tell anyone – OK.  There was a point in time where things got a bit oh let’s call it scary, and while I was at the hospital, it just hit me that I never made our wedding quilt.  On our wedding day, we had asked our guests to sign 3-inch squares of fabric and some people got very creative!  I really do not consider myself a procrastinator because typically if I want to get something done, I get it done and I always meet deadlines…   However, we’ve been married 7 years now…  If I had to give you an excuse, I could say that life gets in the way (I am dealing with some chronic issues of my own) or you always think there is plenty of  time, but mostly, I think it’s because I have a tendency to dream up these very complicated ideas and end up overwhelming myself and then put the project off to the side.  The feeling I had when I remembered those blocks was completely overwhelming – instant tears – almost like I failed-type of feeling.  I promised myself that as soon as possible that wedding quilt would be my priority…  and more importantly, that I would keep it simple.  

I hear you laughing… 

So, I went to my favorite quilt shop, Cambridge Quilts (www.cambridgequilts.com) and purchased a set of 2 1/2 inch strips in beautiful pinks /wine Batiks (to match the bedroom) and will just sew strips around each square.  I’ve got to be me though – I will take a couple and by a couple I mean probably five or six wedding photos and transfer them to fabric to make them part of the quilt.

Jim had an appointment at Tufts yesterday (Monday).  They are weekly now and unfortunately he still has an infection at the driveline entry point (where the power cord comes out of his belly).  We are waiting for the results of a cat scan to see where the infection stands at this point.  It’s disappointing, not because that means we are still doing daily dressing changes and antibiotic infusions two times a day, but also because the longer he has this infection, the longer he’s off the transplant list.  We have got to get rid of this infection!!  They changed the daily dressing change protocol – now they want us to do a saline wrap around the driveline.  Hopefully, this will help…  Seriously, we need to get rid of this infection.  I’m tired of worrying about it…  Other than that the appointment went fine.  They do want to get a base line on his hearing now because apparently being on the vancomycin IV long term can cause hearing issues…  Ugh!!  I’ll have to google the side effects but not right now.  Not in the mood… 

Kendall…  She is such a cutie…    NEWSFLASH – I bought her a bed at the Christmas Tree Shop and I think she likes it!!  Yes, it’s a dog bed – want to make something of it??   I think she looks much more comfortable…

She almost killed Jim this past weekend…  I believe I told you my sewing room (oops studio) was finally set up.  Well, first she got into my pins…  I found them in a heap on the floor in the studio and then also found them downstairs in the dining room… and the living room…?  I can’t believe she is running around the house with pins in her mouth!!  I walked around the house picking up pins wherever I found them and put them away…  In a drawer…  I was lying in bed on Sunday just kinda dozing and I hear Jim coming up the stairs.  He’s coming up slower than he usually does and he’s huffing and puffing so I’m listening concerned that he might be a bit more distressed than usual.  It sounds like he’s at the top of the stairs huffing and puffing for a few minutes now so I yell out “you OK?”  All he says is “do you know what YOUR cat got into?”  Then nothing…  Leaving me to fill in the blank, and I did notice the “YOUR cat” comment…  I start wondering if maybe she got into the crockpot that I had started at 4:00 a.m. – she was kinda peeved that I didn’t feed her at that time or perhaps she turned a roll of paper towels into a mountain of confetti (and we were so close to getting past that stage of kittendom!!).  No, apparently, Kendall got to the spool of thread that was on my sewing machine and she just grabbed it and ran down the stairs, through the dining room, around the table and the dining room chairs.  I’m surprised I didn’t hear the WHIZZZZZZ of  the thread coming off the spool while she was running down the stairs…  Jim is now trying to get into the kitchen from the living room and gets caught up in all this thread in the dining room.  He starts to gather it up from around the dining room chairs, the dining room table, and into the kitchen where Kendall is sitting just looking at him with the thread in her mouth.  He didn’t want to yank it out for fear it might be wrapped around one of her toofies but when he pulled it out she then proceeded to chase him up the stairs trying to reclaim it.  There was quite a birds nest in his hand when he was done.  The thread is now in the same drawer as the pins…   I was telling a friend from work about this, and she said she started to picture the scene in Entrapment when Catherine Zita Jones has to dodge all the laser beams.  Too funny!! 

Well, the doctor called.  The results of the cat scan are in and it seems they want to re-admit Jim sometime tomorrow as a pocket of fluid that they were watching has gotten larger so they want to drain it…  I am hoping it’s an easy tap versus using one of those garden hoses they used before…  Sigh…  Life with an LVAD…  I’ll keep you guys posted.

Thanks for taking time out to read this – I know it was a rather long one.  Lots of Love!!  Cheryl

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