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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,

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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July 11, 2013 – Today is Jim’s one-year Vadiversary.  Can you believe he received his LVAD a year ago today?  I can’t believe it’s been a year already.

In my last post I was complaining because Jim hadn’t asked any questions at his Clinic appointment so at his last LVAD clinic visit I asked him to at least see what his status is on the List.

He was told that he is one of two people to be transplanted.

EEEEK!

While they were quick to remind us that the List is like an accordion and is constantly growing / shrinking, it was scary to hear that.

When he was originally placed on the heart transplant list (a little over a year ago), they said it would be at least a year, and he was one of 20 people.  So they were right on.

Here we are a year later and he’s one of two.

Hearing this stressed us out a tad.  When it comes to dwelling on the surgery itself, we generally don’t allow negativity of any kind in our house.  But sometimes it has a way of just showing up.  I ate my face off for about two weeks after hearing that but have since regrouped.

How was your 4th of July Holiday?

We both took a week off and really tried to relax.  Spent most days in my bathing suit and even though I sometimes took two showers a day, never once did I pick up a hairdryer or curling iron!!  Poor Jim cannot use the pool and it was too hot outside for him.  We had a couple of issues when we tried to go out a couple of times.  Once we decided to go for a walk around one of the local malls, but it was too hot inside the mall, and we had to leave abruptly.  Another time we tried to go to Trader Joes, but Jim almost passed out in the parking lot.  I had to help him back to the car quickly cuz I really didn’t want him passing out in the parking lot.  Passing out is bad enough, but when you’re in the middle of a steaming hot parking lot – ugh!  His potassium was probably too low or he may have been a bit dehydrated.  We got him into some A/C, got him some water and food and he felt much better.  Stubborn.  I told him I should have dropped him off at the door rather than have him walk through the parking lot but I understand – he says he wants the exercise.  I think we both may have underestimated the role heat plays in this game though.  It was extremely hot last week.

For summer reading, I read Mrs. Lincoln’s Dressmaker by Jennifer Chiaverini and thoroughly enjoyed it.  Next will be reading Dan Brown’s Inferno.

Short list this year…

Did some sewing but nothing crazy.  Most of the wedding quilt is put together.

And spread out on the dining room table…

Thanks for your advice, Monique!!  Appreciate it, and you were right…  My idea would have been “a huge pain in the butt”.  LOL!!

There may be some extra seams here and there where I had to fill in between blocks, but I think it still looks nice…  It won’t win any awards, that’s for sure…  I didn’t plan it very well.  When I copied the pictures to fabric I copied pictures of all sizes and orientations.  I should have squared them all up to the same size.

I think I’m one of those people that should always ALWAYS follow a pattern.

Surprisingly, I didn’t do a lot of cooking…  I usually like to use time off to try different recipes I’ve found.  I made a Poblano Pepper and Corn lasagna, and we pretty much lived off of that for the week.  It was delicious, but felt it was missing something.

Besides the salt of course…  I think I would have liked more sauce.

We also lived on fruit…

Fruit.

Fruit and yogurt.

Fruit, yogurt and honey…

Oh – and Tomatoes on Toast…  Simple but this is the best!!

Now I’m bitter because I’m not a billionaire and am back at work and want to be home by the pool with another good book and an iced coffee.

Jim really has been feeling pretty good.  Just the typical fatigue / can’t sleep at night.  He has been having issues with something like a restless leg syndrome, and he mentioned this at his recent LVAD clinic appointment.  Just as he’s about to fall asleep (and sometimes when he’s sleeping), his lower body twitches.

Sometimes rather violently. 

He describes it in Martial Arts terms…  “It feels like an energy building up in my lower body that suddenly releases out through my feet.”

Did you know that he was inducted into the Martial Arts Hall of Fame??

His team believes it has to do with his infection medication, which he does happen to take early evening.  So Jim being the brilliant person he is, decided to take it in the morning instead of after dinner and we have seen an improvement.  It does still happen, but to a much lesser degree.  Sometimes I notice it happens while he’s sleeping but it doesn’t seem to wake him.

In my earlier post I mentioned that they were watching his kidney functions.  We are still taking a wait and see attitude on this one.  They indicated that while they are watching his numbers we are nowhere near the point where we need to make changes…

I think that’s it for now.  Anyone have a crystal ball?

Lots of Love!!

Cheryl

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Hi All,

How are you doing?  We are doing well here.

After my last post that talked about how Jim wasn’t feeling well, he started taking additional diuretics and other than the occasional lightheadedness that goes along with taking extra diuretics, he had started to feel better.  I noticed that he wasn’t wheezing as much and was sleeping better.

Then he got slammed with an awful head cold and has had it for about a week now.  We’ve had very little sleep because of the coughing fits and he has been complaining of bad headaches.  I have no idea where he got it – the hospital, maybe?

Ugh – always something…

I’m waiting for my turn.  I did hose the house down with bleach though so hopefully that will keep me from catching it.

Jim’s LVAD clinic appointment today went pretty well.  They mentioned that they have been watching his renal function and were “getting concerned” but decided to take a wait-and-see attitude for now.  I assumed it was the result of the extra diuretics, but actually it’s because of the antibiotic that he takes for his infection.  If his renal function continues to worsen they are talking about adding a medication that will protect his kidney / renal function, and one that they mentioned was a “dialysis” medication.  That alarmed me, and I asked what that meant, but Jim said he didn’t ask.

They also said that they did three transplants last week!!!  That’s a bit momentous, don’t you think??!!  I wonder if they meant last month…  Anyways…

I asked what blood type were they!!?

He didn’t know / didn’t ask.

I asked how they are doing now!!?

He didn’t know / didn’t ask.

This is why I wish I could go with him to his LVAD appointments.  Especially ones like today where they ended up addressing some medication issues and had shared some awesome information.  Most times it’s a dressing change and blood work but when there is a blip on the radar screen that they are watching and want to address,  I want to be there.  I notice that Jim will sometimes shut down and not ask any questions – information overload?  Maybe…  So sometimes I feel it’s good for me to be there.  I would have asked questions!!!  Unfortunately, I have to work though so I have to maintain a balance.  Knowing when to go and when I’m not needed.

For the most part it feels like our lives are on hold until the transplant.  It’s difficult to go out at night with friends and enjoy myself knowing that Jim is home by himself plus it makes our nightly routine much later.  We don’t get enough sleep as it is due to heart failure symptoms, LVAD alarms and anxiety (or coughing fits) so I have pretty much backed off all social events.  It’s just too difficult (stressful).  Because of this I always tend to feel like I’m a bad friend, bad sister, bad daughter but my friends and family are awesome – so I know they understand.

This weekend I had one of those moments where I got overwhelmed looking at the pile of mail that needed to be dealt with; the messy kitchen; the pile of laundry, the pile of bills – you get the idea, and I started having those I am a bad friend, a bad housekeeper and a bad bill payer thoughts but then a strong voice in my head said but you’re being a good WIFE – which is all that matters right now… 

I felt better…

So it will be a year for Jim’s LVAD in July.  I’ve heard it called a Vadiversary.  Whatever you want to call it, I’m just thankful for the technology!

Time goes by so fast, doesn’t it?

Last year at this time Jim was in the hospital, and I was running back and forth while working full time and working with my parents to get the house renovations completed.  We had moved into this place it will be two years this fall so imagine my surprise when I walked into our backyard this weekend and found these…

IrisIris2

Irises!!!!

I love Irises and didn’t even realize we had them.  I also noticed earlier this spring that we have daffodils, tulips, azaleas and some other flowers I haven’t identified yet.

I was so excited about the Irises that I posted them on my Facebook page!!  I realized at that point that I don’t think I ever set foot in the backyard at all last spring / summer.

We had other things going on…

While I was taking pictures I saw a really pretty spider (if you like spiders).  It was brown, orangey-red and yellow; rather large and furry…  I tried to get a photo, but whenever I leaned forward to get a good shot, it went back into the foliage.  I would back-up, it would come back out.  I lean forward and it would duck under the leaves again…  This went on for a few minutes until he finally got tired of the game and disappeared completely.

I didn’t get the photo…

We have beautiful cardinals in the neighborhood too.  Jim and I were eating in the kitchen looking out the sliding glass door and all of a sudden a cardinal landed on the porch railing, checked us out and then took off.

Why can’t I EVER have my camera near me when stuff like that happens?

I missed another photo op this past weekend when I walked into the kitchen and saw a black and white cat on the porch peering into the kitchen, but when he saw me he took off.  I yelled to Jim – Hey, I think Kendall has a boyfriend!!

I really wish I could have seen (videotaped!) what kind of interaction happened between that cat and Kendall…

I wonder if they are friends…

I did manage to catch one photo op with Kendall although it was pretty easy because it’s something she does all the time.  She is very funny.  Whenever Jim and I eat in the kitchen, Kendall will walk over to this little rug in the kitchen and walk head first into the cabinet and then put her head on the rug and do a complete somersault and land on her back.  She’ll lay there for a while and then will right herself and inevitably fall asleep with her face planted in the rug.

Kendall-Head down

She can breathe like that, right?  Does anyone else’s cat do this?  I’ll try to get a video of the somersault…

Since things have been relatively stable, I felt well enough to do some quilting.  Sort of…  I haven’t actually sewed but I did take some wedding photos and copied them onto sheets of fabric.  They sell fabric that has been stabilized so that you can run them through your printer or copier.  You can get them at Cambridge Quilts if you’re interested in checking them out.  They’re very fun and it’s a great way to display photos.  I had made my parents a “Christmas Memories” quilt that came out awesome, and I made a friend a little quilt of her dog that had passed away.

So the pictures are copied to fabric.  I rinsed and ironed them and am ready for the next step.  What that next step is I’m not sure at the moment.  I’m sort of making things up as I go 🙂 and hoping for the best.

I think that’s all I have to report.  Thanks for stopping by and thanks for the well-wishes and prayers.  They are very much appreciated.

Love you guys!  Take care

Cheryl

PS:  It was my Mom’s birthday the other day, and I’m happy to report that I didn’t bake anything 🙂

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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…

photo2

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

photo8

Check out this one…

photo7

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…

photo5

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.

photo6

Here is a block completed with the batik strips.

photo4

Beautiful!  Love this one.

One more

photo3

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.

corner_square_borders

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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