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Hi All,

Since Jim had his heart transplant, I have been thinking about a new direction for the blog.  One idea I had was to devote it to my quilting obsession (I mean hobby) along with posting various recipes that I’ve tried.

Maybe also some gardening posts?  I hear you laughing Mom!!  My Mom has a green thumb.  I do not…

I thought I would give Kendall some more exposure as well.

Quilting, Cooking and Kendall!  Maybe that can be the new name – we’ll see.  Still playing around…

Should be a lot more pleasant than posting about health issues, that’s for sure!! Although I do still plan on giving updates on the healthcare front.  When I first started thinking about blogging it was at first going to be a quilting site but then my husband’s health took a bad turn and I started blogging about the heart failure journey.  We really wanted to connect with others who were having similar health issues. We have met a lot of great people along the way plus it was a great way to keep friends and family updated.

I am looking forward to unveiling the new blog and I hope you enjoy reading it!!

Lots of Love!!

 

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Hi All,

How is everyone doing?

We have been enjoying life without a pacemaker, defibrillator or LVAD.  No more lightheadedness or dizziness and no more passing out on a semi-quasi regular basis.  An eight-year battle is over and hopefully no more battles are in our future for a very long time.  We can only hope…

Jim’s one-year post heart transplant journey has consisted of mostly monthly biopsies — they were more frequent in the first two months post-transplant.  He also has been gearing up back at work.

All his biopsy results have come back as ZERO REJECTION.

Now, no more biopsies unless something happens.

I still can’t believe a year has gone by.  It actually was a great year and went by pretty quickly.

The two years with the LVAD, not so much…

We have so much to be thankful for and still think of the donor family who even in their time of grief were able to be so thoughtful and giving.  They have no idea what a difference they have made in our lives.

We also owe an immense amount of gratitude to family, friends and co-workers.  Without your love and support, neither one of us would have been able to survive this…  I still get overwhelmed when I think about it.

Eight years…

We are now on the other side of the heart transplant and Jim is back to his life’s passion – his business.

Me – I’m actually having a bit of a tough time adjusting to life post-transplant.  I had a “what do I do now” crisis.  It was very strange.  I think I need to find something to be passionate about.  Any suggestions?  Going back to school was one idea…  I’m just not sure for what and wonder out loud if I am too old.

For now I’m enjoying a sense of normal – reading books and finishing some quilting UFOs (or unfinished projects).  I am planning on organizing the house and rethinking the blog’s direction.  The blog was originally supposed to be a quilting blog and the inaugural post was going to be about my trip to the Vermont Quilt Festival.  Instead, decided to cancel last minute because I just felt that Jim was not doing well.  Cancelled on Thursday and his defib hit him Saturday night and he passed out.  Glad I was home otherwise he would have been alone when that happened.  If you’re interested, you can read about that here https://welcometomyworlddotme1.wordpress.com/2012/07/04/happy-4th-of-july/

We have come full circle – I have a hotel reservation for the Vermont Quilt Festival next month…

Any other ideas that could fuel my passion or be a good direction for the blog?

While you’re mulling that over, did I ever tell you how Jim was diagnosed with his heart condition in the first place?  It was because of our cat – Spooky.

Spooky and Jim were buds.  They would greet each other every single morning in the hallway with high fives and a meow and every night he would wait at the front door for Jim to get home from work…  So sweet.

We both love all animals but have a soft spot for black cats.

Two days after Jim’s mother passed, Jim was home complaining of chest pain and “pressure” going down his left arm.  He was very sweaty too.  Classic heart attack symptoms yet he didn’t want to go to the hospital because his PCP said he was just experiencing anxiety from his mother passing and prescribed blood pressure meds.  Spooky apparently didn’t agree with that thinking, and he wouldn’t leave Jim’s side.  He kept circling and pacing around Jim while frantically and loudly meowing.

He knew something was wrong….

He followed Jim into the bathroom – butting the door open with a combination shoulder / head maneuver and when Jim went to lie down for a while, Spooky started his pacing / frantic meowing routine alongside the bed.

I asked Jim if he thought we should call an ambulance, and he indicated he was sure it was just anxiety.  Meanwhile, I am still watching Spooky who continues his pacing / meowing and suggested that we just go to the ER and get his blood pressure checked.  Since, his PCP had just prescribed the blood pressure meds, I said let’s just go see how your blood pressure is doing – it can’t hurt, I said.

I said to the woman at the ER’s Registration that my husband was having chest pains and she took one look at him and said we’ll bring him right in and worry about the paperwork later…  We were there for most of the night.  All the tests came back normal except one…

Idiopathic Dilated Cardiomyopathy

So that’s how we first learned of Jim’s heart failure.

Thank you, Spooky!  When Jim got home, Spooky was his normal self again.

First, you start out on medications and watching your sodium intake.

We would order Italian subs and Jim would just pop an extra diuretic (if it was even needed) and bounce back no problem.

Heart disease is progressive though…  Suddenly, he wasn’t bouncing back.

After a period of time, he started landing in the hospital to have fluid removed because the diuretics would get overwhelmed.

This went on for a few years.  One day while Jim was in the hospital having some fluid removed, he was talking with his Dad on his cellphone when the entire team of the Cardiomyopathy Unit at Tufts Medical Center barged in his room.  He had a vtach storm.

The doctors informed Jim it was time for a defibrillator.  They actually implanted a pacemaker / defib but not without some, oh let’s just say…  Issues..

The “leads” that are inserted into the heart somehow kept coiling up and out of the heart and they would have to do surgery to reinsert them.  The last straw was one day when Jim woke me up around 2:30 a.m. saying “I think we have a problem”.

Picture me trying to focus at 2:30 a.m. after being woken up from a sound sleep with the lights on…

Once I focused, I could see, his pec muscle is pacing like his heart should have been…

We head back at Tufts where Dr. Pham had to go in through his rib cage and basically “sew” the leads to his heart.

Now we are cooking with gas!!

Then the defib started to hit him on a bit more of a regular basis.  The team then informed us that Jim’s heart had approximately 6 months left if he didn’t get the LVAD.

A rather humbling moment.

That surgery went fine but because Jim had gone into the surgery sick, his recovery was rough.  He came out of it with a condition known as post-op delirium.  For me – it was horrible.  Jim doesn’t have too many awful memories from it (quite the contrary if you speak to him about it), but from my perspective it was just very scary to see someone you love in that condition.

So that pretty much wraps up 8 years of heart failure to a heart transplant.  It’s been quite a journey.

An eight-year battle in our ten year marriage.

I’ve been more of a caregiver than a wife…

You want to get married; you better take those vows seriously.

In sickness and in health…

See how fast the tables turned… We got married and had stupid dreams of starting a family.  Hey, I actually wanted four kids…  We were going to have to start fast because I was getting old.  Yet 8 months into the marriage, I had a diagnosis and then about a year later Jim got his diagnosis…

I tried to be a good caregiver.  It wasn’t always pretty.  There were times when I was grumpy.

Many times :)…

You also develop a sort of sixth sense.  I think even before Jim saw them I would know when something wasn’t right.  You go on alert.

Calling 911 was never pretty for me.  Those kids who get called out on the evening news for calmly calling 911– not me…

One of the strangest incidents for me during this entire 8-year ordeal was actually the last time Jim passed out – January 2014.  I did my frantic call to 911 then ran to put some clothes on and then ran to open the front door and put the porch light on then ran upstairs again to tend to Jim who was now regaining consciousness.  I followed the ambulance to Tufts as best I could – they can blow through lights.

So there we are in the ER again.  It’s our second home.  Jim is sleeping on the gurney and I’m sitting next to him watching the hustle bustle of life in the ER and the snow starting to fall faster.  Boston was bracing for a large snowstorm that day.  I was thankful that I had taken that week off from work so didn’t have to worry about that.  I remember watching him sleep and feeling the familiar pain start to creep in to my back.

ER Chair

These chairs are not comfortable.

Anyways, I was watching the snow come down and started to feel anxious because I don’t like driving in snow, let alone on the upper deck of 93North, and I started to really wonder when is this (the transplant) going to happen?  Is it going to ever happen?

Then I hear this little voice way in the back of my head say – “Anniversary”.

Ahhh OK – I go back to being anxious about driving home…

Our anniversary is May 15th.  My parent’s anniversary is May 19th and we celebrated w/them on May 19th.

We got the call on May 22nd.

CRAZY!!??

Thank you to whatever / whoever out there who helped to calm me down – appreciate it.

Now can I have the numbers for the lottery?  Just (slightly) kidding…

Like I said it was a great year (except for the month of February).  I’m glad that we broke records but that was the first time in my entire life I actually thought about leaving New England for a warmer climate.

Here are some photos / highlights:

So this is the front of our house after a day of snow blowing / shoveling.  See the avalanches – those happened after the snow blower broke…  The snow blower actually broke down twice this year.

Front of house

Speaking of breaking…  This was the second shovel to break.  NO EXCUSES!!

Broken Shovel

Here’s the view from the back of the house…

Backyard View

These are the famous ice dams that everyone was talking about…  This was the first year we had this bad a problem.

Ice Dam

Lastly, here’s Kendall having a “Holy MeWow!!” moment looking out the slider off our kitchen.  I had tried to keep the back porch clear but as you can see I gave up…

Kendall MeWow

So that’s pretty much a quick overview of the last year.  Jim is doing extremely well, and I am trying to determine what I want to do the rest of my life.

Travel!!??  Hmmmm….  That’s an idea…

Anyways, look for a new, improved (and possibly newly named) blog coming soon.

Lots of Love!!

Cheryl

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It seems spring finally has sprung. Although I heard it’s supposed to cool down later on this week – BUMMER.

I went for a walk the other night to clear my head a bit and was happy to see evidence of springtime wherever I went.

Flower1

Flower2

Flower3

Flower4

Flower5

Pretty…

It was nice to see the flowers. I saw my first Robin too but it was too fast for me to take a photo.

Then I come home and find a certain someone konked out…

Kendall Sleeping

Good Lord, Kendall!!

She has no shame whatsoever…

I hope you liked the Stuffed Peppers recipe. I am still in a bit of a cooking rut. I did make the Pioneer Woman’s Salisbury Steak Meatballs yesterday. They came out great but needed a couple of eggs as a few of them fell apart. Really good recipe though and all the ingredients are ingredients that you have on hand.

I make beef broth from powder bouillon packets that have zero sodium.

Just thought you’d like to know.

I finished the top of my wall-hanging. I love it. Not sure I centered the tree properly though – it looks a little “Bonsai-ish” in this picture… I bought some red crystals to decorate it and a big snowflake to use as the star. I will quilt it first though – I don’t want to chance a crystal falling off and getting stuck in the sewing machine mechanism…

X-mas Wallhanging

Not sure how I’m going to quilt it yet. Was thinking of doing what the Author did and that was echo the shape of the tree outwards and then “stitch-in-the-ditch” the stars. This is a pattern from the book Christmas Sparkle by Mary Jane Carey of Holly Hill Quilt Designs. Great book!

I see some metallic sparkly threads in my future!!

Jim is still doing very well although I did jinx him with the last post. He fell down the stairs at his parent’s house while trying to carry two bags… He really did a good job on his leg and of course the bruising from the Coumadin is pretty… Nice shades of purples. Matches the comforter and blanket…

Jim Leg

Hey, see the green / white thing with a hint of a pink poking out? It’s in the bottom left-hand corner of the pic. That’s a Dresden Plate quilt I made years ago from reproduction depression era fabrics.

One of my favorite quilts.

A couple of weekends ago, Jim’s cousin Charlie and his lovely wife Donna came to visit us from western New York. We had a great time catching up with them. As a surprise we hired a guide from Antique Limo to come to the house to pick us up and give us a tour of Boston.

We wanted to do something in Boston while they were here.

Our guide, Mark, was great. He dresses up like a mobster and he drives a GORGEOUS 1939 white Cadillac and gives a very informative tour of Boston.

The car is spectacular… If we had a penny for each time someone took a picture of us while we drove around Boston. Mark would roll down his window and tell them he needed to confiscate their cameras because we were all in the Witness Protection Program.

He would also periodically roll down his window and ask – how you doin’?

When we got back home I put some chicken that was marinating into the oven.  It was a Chicken Marbella recipe that was on the Simply Recipes website along with Chocolate Pot de Cremes by the Pioneer Woman.

Delicious!!

While they were visiting, Donna mentioned she wanted to see my sewing studio. While showing her around, I found a box tucked away in the closet and realized it was for a quilt that I had committed to making years ago with some friends of mine.

Like back in 2008.

The quilt is known as the Dear Jane quilt and it is made up of 225 blocks. Some friends and I had decided to meet on a monthly basis to make a few blocks. A bit like a Block of the Month quilt.

I was so excited to find those little blocks. Emphasis on LITTLE. The blocks are 5-inch squares.

DJ Lesson 1 Blocks

I was making a PURPLE Dear Jane. Cool!

I emailed the girls and asked if they would be willing to meet at my house once a month again… We met this past Saturday and it was great to see everyone. We sat around the dining room table and discussed the logistics of getting the band back together. We are going to meet on either the 2nd or 3rd Saturday of each month.

Most of us managed to do three blocks since 2008. Some have more and some have less. We’ve decided to start with Lesson #1 again. I might send Lesson #2 for the girls who are ahead. The next two blocks are an applique technique.

Explains why I stopped…

Here is a picture of the entire Dear Jane quilt.

DJ Quilt

We guestimate that it will take approximately 5 to 6 years to complete. Most quilts I have no idea how long it took me to make them. People ask but you really can’t answer because sometimes you work on a quilt or project constantly but then sometimes life gets in the way and you have to put it away for awhile. I have the Dear Jane software that has information sheets for each block along with a place to make a notation of “time started” and “time finished”. It would definitely be cool to know how long this quilt took to make.

Or depressing…

There is some history with this quilt which I will be glad to provide (if you want) at another time. It’s late and I’m getting a little tired.

Hope everyone is doing well. Lots of Love!!

Cheryl

 

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Hi All – Happy New Year’s everyone!!  OK let’s just say I started this post a long time ago… 

Last we spoke Jim had just gotten out of the hospital after having been sent home on the wrong medication regimen and getting seriously ill and dehydrated.  That mystery was solved by the Tufts Infectious Disease team (they are part of the Cardiac Transplantation team). 

I would say not even five days after Jim’s discharge, I get a call at work from his visiting nurse.  She said (and these are her exact words) – “Jim went BUMPITY BUMP BUMP BUMP down the stairs.” 

O. M. G!!! 

He managed to get up off the floor and open the door to let her in, and then collapsed in the living room – up against the entertainment center.  She told me that she wanted to call an ambulance, but that Jim felt he didn’t need medical assistance.  She said that he was denying the fact that he had hit his head, but she could clearly see a bruise / scrape developing over his left eye. 

I asked her to please call an ambulance and have them take him right into Tufts, and that I would meet him there…

When I got there Jim was in the Emergency Room, and he was being examined by one of the doctors.  I asked him what happened with the LVAD Controller, and he said that it had gone “BUMPITY BUMP BUMP BUMP” down the stairs so they had the LVAD Coordinator come in and give the LVAD Controller a once over.  Thank goodness all was fine but I laughed to myself because I wondered if he knew that the visiting nurse said the same exact thing about him. 

I think Jim was more embarrassed about this incident than anything else.  He said he was just in a rush to get down the stairs to let the visiting nurse in, and he missed one of the steps.  The team at Tufts thought it might have been something else. 

Whenever you or I stand up quickly from a seated position gravity will take over and all our blood will drain but then recirculate.  It happens pretty quickly – sometimes you might get a little lightheaded.  Now imagine a man-made motor in your heart going at a constant rate.  When gravity takes over and blood leaves the heart and that motor is still going there is a suction event that happens.  There is a word for it, but because I’m an airhead I don’t remember it at this point in time.  I’ll ask the team next time I see them…  Anyways, they think that might be why he had fallen down the stairs. 

Thankfully, everything was fine.  Tufts did a cat scan to ensure that there were no bleeds from the fall, and they kept Jim for a few days for observation.  He had some serious bruises though – pretty amazing ones…

This is where he didn’t hit his head… 

 JA - Forehead

 

Here is his arm – probably trying to save himself…

JA - Arm 

Here is a picture of his back…  YEEIKES!! – You can see the line from where he landed on the edge of the step…  OUCH!!

JA Back2 

The Coumadin makes for some impressive bruising, huh?  While it literally would hurt me to look at the bruises, Jim assured me that they didn’t hurt at all.  He indicated if anything, the bruise on his arm hurt the most but said it was more tightness than actual pain…  When he was discharged, the nurses said next time he wants to visit, he just needs to stop by – no need to stage accidents or throw himself down the stairs… 

After that things were pretty uneventful for a couple of weeks.  We made it through Thanksgiving and were coming up to the Holidays, and I just started wishing for an uneventful Holiday.  We got the tree up and decorated. 

2013 Tree 

Beautiful!!

We usually do this the weekend after Thanksgiving.  It takes a couple of days to get it up and running.  One day the tree and the lights go up.  The second day is spent decorating and cleaning up.  This tree is rather old (Translation:  it does not come pre-lit!!) but that’s fine because I haven’t found a pre-lit tree that has purple and white lights on it. 

If you do find one, could you let me know?  Thanks – appreciate it.

Until then, we use this tree.  We do get lots of compliments on it.  I was nervous about putting the tree up this year because Kendall was so awful with it last year.  She would gnaw on the wires, chew on the branches and send ornaments sailing through the air.  This year she didn’t seem “as” interested in it.  She still chewed on some branches (only to throw up fake needles) but not nearly as much as she had done last year.  She does like the skirt.  Must be comfortable.  I couldn’t locate it last year because I had used it as padding when packing up boxes but was so excited to find it for this year.  She would curl up under the tree and nap.  Just like Spooky used to do.  The funny thing is as a quilter, I made just about everyone and their Uncle a quilted Christmas Tree skirt but us – we have one from Sears Roebuck… 

Yes, they were still Sears Roebuck at the time!!

One of these days I’ll make us a proper, quilted Christmas tree skirt, but I really like this one – it’s a purple Santa Coat. 

See the flat screen TV in the photo to the left there?  See how it’s on an entertainment center?  Kendall is such a nut case…  Out of the blue she decides to leap over it in a single bound.  Probably didn’t realize that it’s straight down the other side – there was no shelf-i-poo of any kind to land on… 

In order to get her out from behind it, I had to move the entertainment center (heavy, thank you very much), and she walks out a complete puff-ball. 

I don’t think she will do that again…

Nov. 19th – I find out that for some reason at work I was switched to a “clocker”.  Someone who has to hit a time clock when they enter or leave the building…  I cannot input time into a timesheet anymore.  I called to let someone know of the issue and they inform me that yes, as of 11/19 – I am a clocker and so will everyone else in the building.  I assured them that if that were really the case, some type of an announcement would have gone out.  I escalate my problem and someone assures me that they are looking into this – apparently, I am not the only person who got switched.  More to come on this… 

November 30th – one of Jim’s antibiotics is stopped.  Jim questioned this with the infusion services company because we are at LVAD clinic every week and no one from the Infectious Disease team indicated that they were stopping the antibiotic.  The infusion company indicates that they will follow-up with Tufts and get back to us as soon as possible. 

December 4th – Jim was complaining that he was freezing.  He takes Coumadin and that’s one of the side effects – he’s always freezing.  We could have the heat set to 72, and he would still be freezing.  He said he was going to go to bed for a little bit and see if he can get warmed up.  I hear him get to the top of the stairs and then get what’s known as a case of the rigors.  Rigor is when you are shaking uncontrollably.  We get him into bed.  He’s on top of a heated mattress pad and under a sheet, a blanket, a quilt, and an electric blanket that is on high. 

We are careful to move his LVAD controller off to the side – high temps are not good for that thing. 

I took him temp at this point but it was normal.  He is shaking so hard that when I sat on the bed next to him for a little bit, I actually got physically nauseous!  He finally warms up and falls asleep for a couple of hours. 

When he woke up we took his temp again – 102.6. 

Yeeikes!!

We question if it’s due to the fact that he was bundled up with so many heated elements… 

However…  There are two things that you are always on the look-out for when you have an LVAD.  One, signs of an infection and two, signs of clotting… 

We really should call the team.  I gave Jim some Tylenol, and he gave them a call, and as we figured they wanted to see him right away.  I was a little surprised at the level of urgency though when we got there but figured it was just serious enough. 

Then they start talking about his 105 fever!!  Jim and I were like, huh??  Whenever Jim comes into the hospital, an email blast goes out to the entire team.  They also put a bulletin notice on the billboard on Rte. 93S. 

Just kidding.

Someone wrote that he was coming in with a 105 fever…  Oops…

The Tylenol took care of his fever and it never came back but it was at this point that the Infectious Disease team became aware that one his antibiotics were stopped on November 30th and to say that they were upset would be an understatement…  Suffice to say it wasn’t supposed to be stopped and they were worried that that was the reason he spiked a fever.  They didn’t think it was from being under 15 heat sources. 

His antibiotics were restarted immediately. 

It’s now coming up to the Holiday’s, and I’m happy to report that my payroll issue had been fixed…  They didn’t offer an explanation of what had happened and I didn’t ask – I was just thankful that my poor boss (who was also trying to plan her wedding!!) didn’t have to manually email my hours to the Payroll people each week.  What a nightmare. 

I didn’t get a paycheck when we had first found this out so in a panic, I had put my cleaning people on hold.

It’s now the Holiday’s…  I get my wish, and we have a beautiful and uneventful Holiday.  I had some time off from work and enjoyed the Christmas and New Year’s break with family.  Christmas Eve Jim and I took his Dad into Boston for dinner.  We found a restaurant that had a New Year’s Eve special dinner menu.  I decided that since I had a whole new batch of vacation days for 2014, I would take the two days after New Year’s off as well and make it an entire week off. 

I had made a quilt for my brother for Christmas, and he loved it when he opened it Christmas Day.  I forgot to take pictures of him opening it because I’m a dingbat like that, but here’s a picture of the quilt… 

This was a Block of the Month quilt done through Cambridge Quilts.  I jokingly said to Jim with the amount of work that went into this quilt, it should have been King-sized!!  See all those squares and triangles!! 

Frankie's quilt1 

See them!!

January 2nd – Jim is complaining that he’s extremely lightheaded and dizzy. 

These are signs that his potassium is too low and is typically when he can pass out.  I am on guard…  Sure enough he passes out early in the morning and ends up in the Emergency Room at Tufts with a potassium reading of 2.1.  It’s supposed to be between 4-5. 

Nothing like having two EMTs, two firemen and a policeman in your house to make you wish you NEVER put your cleaners on hold!!!

Whoa, where did that come from?

We always try to keep a sense of humor about things.  Poor Jim is lying in the emergency room at Tufts Medical Center.  It’s snowing like crazy outside.  Jim is trying to sleep, but I poked him and said – “Hey!!!  At least the deductible for 2014 has been met!!” 

He turned his head towards me, opened his eyes and just sort of glared at me. 

Well I thought it was funny…  I guess he wasn’t feeling it…

He wasn’t there very long.  They got his potassium back up to where it should be and discharged him a few days later. 

All this time Jim has been on inactive status on the Transplant list.  I thought it was because he really hasn’t been stable in a long time and you need to be healthy enough for the surgery.  It turns out it’s because of the infections he has.  Originally, after the LVAD surgery, it was the infection keeping him at Status 1A so we were very confused.  Also, every single test that they do for an infection comes back negative (thank goodness – not complaining).  If they are coming back negative though, why is he taking four antibiotics a day?

Taking all those meds isn’t a good thing either!!

Jim starts to ask questions and there is a Meeting of the Minds at Tufts.  They decide to do an unconventional experiment. 

Wednesday, January 8th – Jim calls me and tells me about an idea they proposed to him.  They want to bring him into Tufts for seven full days and stop all antibiotics and see if anything rears its ugly head.

They feel he’s in limbo right now and want to move him forward to active status.  If he has no infection, he can go home without antibiotics and go on the transplant list.  If he does have one, they need to find the source of the infection and deal with it. 

Jim and I were almost positive that he would end up popping a high fever and end up probably needing surgery of some kind to get rid of an infection. 

Thankfully, four days later I get a call to say they felt he can go home. His stay (we started calling it a Med Spa stay) couldn’t have gone any better….  After four full days (so much for seven full days) his fever was normal and his white blood cell count actually dropped while he was in there.  He really made the best of it too.  They didn’t have him hooked up to anything so he did as much walking as he could and found a set of stairs to use as a workout as well.

His PICC line is gone and for now he is taking oral antibiotics and the team is going to have a discussion tomorrow (January 21st) about getting him back to active status.  The question is whether or not he’ll be Status 1a or Status 1b.  To be determined.

In order to keep my sanity I have been trying to get as much sewing in as possible. 

Well, you knew it wasn’t going to be housecleaning!!

I’m actually working on a beautiful Christmas wall-hanging. 

Why not? 

No pressure at all, and I’ll be way ahead of the game for next year!!

Here are some pictures of the star blocks that I’m working on… 

Christmas wallhanging

I have all but four done and I’m hoping to get them done soon… 

Stars

Thursday, January 23rd – We get the call from Tufts.  Jim has been approved to go back to active status on the heart transplant list and he is listed as Status 1a. 

I think that’s all I have to report to date – that was a lot!! 

I hope that everyone is doing well!! 

Take care and lots of love!!

Cheryl

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Hi All,

Long time between posts, huh? How is everyone doing? We are doing pretty well here. We just got off a bout of too much sodium. Sneaks up on us every once in a while…

I had gone to the hairdressers to get my hair done one Saturday because we were going to a 40th Anniversary celebration, and when I got home Jim was horizontal on the sofa – completely fatigued. He also had a bad headache which was very concerning to me. He had an LVAD clinic appointment on Monday so he didn’t want to make a special trip to the hospital. He did want me to go to the party without him. I don’t think so. I can’t imagine going to a party and having a good time knowing that he’s home by himself and not feeling well. What if he passed out and couldn’t call for help.  No, I’ll stay home. Everyone understood and with the help of my brother we were able to say well-wishes via FaceTime.

We stayed home for the weekend and Jim slept a lot. His headache was really bothering him and would intensify and go away throughout the weekend.

Monday finally arrives and I drop Jim off at LVAD clinic and then take myself to my own doctor’s appointment. By the time Jim was ready to be picked up it was already after 1:00 p.m. so I decided to stay home. Mostly, because I knew that he still wasn’t feeling well. The doctors noticed that he did have some excess fluid on him and his blood pressure was too high – might explain his headache so they gave him an additional really potent diuretic. When I heard this, I swore out loud because I know what we’re in for. Now we get to go the other way. He usually will end up getting over diuresed.

Is that a word?

Sure enough, early Tuesday morning Jim yelled for me because he felt like he was going to pass out but he was able to sit down quickly until his head stopped spinning. He then said he felt better but was still unsteady on his feet and lightheaded. Blood work showed his potassium is low from the extra diuretics so we increased his potassium supplements.

I wish I could say he’s feeling a lot better now but he’s still a bit lightheaded and just overall not feeling well so we’re going to mention it at LVAD clinic tomorrow and see if we can find out what’s going on.

While Jim was sleeping, I did get a fair amount of sewing done.

Do you remember the block you signed for us at the wedding? For those of you who are wondering what I’m talking about, at the reception on our wedding day, we had permanent markers and 3-inch squares of fabric available for our guests to write brief well-wishes for us. The fabrics were stabilized to make it easier for guests to sign. I have seen some beautiful wedding memory quilts created like this and being a quilter knew that I wanted to do the same thing for our wedding day.

So, here we are approximately 8 years later – MY GOODNESS, TIME FLIES…

In my defense a lot has happened in those 8 years. I am now committed to making our wedding quilt. As I have mentioned previously on this blog, I have a habit of making projects WAAAY more difficult than they need to be, and then I SERIOUSLY overwhelm myself and put the project away. I wanted to keep things as simple as possible for this quilt.

They have these precut, already color-coordinated packages of 2 ½ strips that are all the rage. They make life much easier for us quilters. Saves on having to do a lot of cutting. I found these beautiful batiks in various shades of pinks, purples and greens which I thought would look LOVERLY in our bedroom…

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Some of our friends got very creative. Isn’t this beautiful!

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Check out this one…

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Your honey moon “awakes” you? Do they mean AWAITS you? Wondering if one of the kids did this one?  Too cute.

Lots of memories. This one is sweet…

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It was fun going down memory lane and re-reading what everyone wrote to us. I am very happy to report that only one person (out of 43) signed on the stabilizer paper instead of the fabric…  Here’s a few of them pictured here.  You can see some of the batik strips on the left-hand side.

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Here is a block completed with the batik strips.

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Beautiful!  Love this one.

One more

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Very sweet.

I was able to get all the 43 blocks framed with the batik fabric. It’s nice because each block has a different but coordinating batik print.

Kendall wanted to help…

photo-Kendall sewing

But then started to bite the thread because it was whizzing past her…

I picked her up and put her down.

Name that commercial!!

Sorry…

I picked her up and put her on the ironing board where she stayed for a while albeit a bit grumpy.

Kendall - ironing board

The next phase of this quilt is to take a few photos from the wedding (NOT MANY – maybe about 5) and using the same stabilizer I used for the 3-inch blocks copy the photos to fabric. I’m thinking of one 8×10 photo of the entire wedding party in the center of the quilt with 4×6 or 5×8 pictures in each of the corners. Something like that. Keeping it simple… Once these photos are on fabric, I can put the quilt top together. I also have a little piece left of each batik strip and I’m envisioning cornerstones with those.

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Then I can have it quilted. I might quilt this one myself – not sure yet… We’ll see how much time has transpired from now to when it’s ready to be quilted… 

I probably should talk about the Boston Marathon Bombing but to be honest I’m too exhausted right now to write anything at length.

I can tell you that around 12:30 Friday a.m., Jim had gotten up to go to the bathroom, and I heard a weird noise off in the distance that sounded something like thunder or a loud firecracker.  I just thought to myself that was a strange noise.  Then I got wired for some reason and went downstairs and turned on the TV to see breaking news on every single local channel and for the rest of the night watched the entire unbelievable manhunt unfold. It was like watching a movie that wouldn’t end. Towards the morning they started to announce things like the entire subway / bus system was suspended; no taxi service available and in certain towns people were ordered to stay inside and that businesses in those towns should stay closed. Then they flashed those towns and Cambridge (which is where I work) was one of them… I said to Jim – I don’t think I’m going to work today. Sure enough my company announced that they would remain closed today per the Governor’s orders.  I told Jim that I think I heard one of the bombs from when the police were chasing them but we both thought we were too far away to hear anything.  However, on Friday when they found the guy was hunkered down in some poor guys boat in his backyard, and we were watching all the police cars taking off in that direction, Jim muted the TV, and we could hear sirens off in the distance…

I get sick when I think about the people who were killed and injured and how young they were.  Needless.  I’m really glad it’s over, and I’m glad they got one of them alive.  I think he’s a coward though.  He could kill others, but couldn’t take his own life and was afraid of dying…  I am hoping that they get some answers out of him but judging by his injuries it might not be for awhile.  Stay strong Boston!!

Lots of Love!!  Take Care,

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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It’s been awhile since I mentioned Kendall so I thought I would share a story that Jim and I were laughing about earlier today. It’s really nice to see Jim laughing. In my opinion, it doesn’t happen enough nowadays. This story is from when Kendall was only a few months old. Funny, the Holy Terror part of her kittendom is starting to fade away… Gradually…

The story goes…

I went to my monthly quilting guild meeting with my good friend Bethany. The week prior I had gone with some friends to NH to meet Jennifer Chiaverini, a well known author that writes a series of novels known as the Elm Creek Quilt series. I had purchased one of Jennifer’s latest novels for myself and Bethany and gave Bethany her copy at the guild meeting. As we were leaving the meeting, she handed me a $20 bill for the cost of the book, and I just shoved the bill into my raincoat pocket. When I got home, I threw the coat on our dining room table and sat on the sofa to tell Jim about my meeting. I then called Mom and while we were talking, all of a sudden Kendall comes out of nowhere, jumps on Jim’s lap and spits out a $20 bill. You should have seen the look on Jim’s face – it was priceless!! He opens up the bill and exclaims “it’s a 20!! Where the hell did she get this?”. It dawned on me she got it from my coat pocket. He then started to tell her she was a good girl and to do it again!!

Kendall loves to play fetch and she will bring us everything and anything to throw such as (but not limited to) the twig from a broomstick, one of her toys, the twisty plastic thingy from a milk bottle, a Q-tip (her favorite) and apparently now $20 bills!!

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