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Blogging Prompt…

Hi All,

How is everyone doing?  We are doing well here.

So one of my assignments here was to create a BlogRoll that lists the blogs that I like to follow – that’s quite a list by the way because there are some great blogs and websites out there.  I will try to do that later today.  This one is more techie, and I seem to be having a blocked moment with techie stuff.  Maybe because it’s just too nice out lately :).

Another assignment was to make a blogging prompt that I had read in someone else’s blog personal.  In other words how reading someone else’s blog post hit me personally.

So I decided to use a post I read the other day on one of my favorite food bloggers – We Are Not Martha.  They are a Web site that I try to check in on at least once a week because they always have great recipes, great drink ideas, 🙂 great craft ideas and a lot of cute stories.  Recently, they did a blog post featuring a recipe from Thomas Keller’s Bouchon cookbook.  The recipe was for Croque Madame and of course it looked delicious (all “WeAreNotMartha” recipes look delicious) but the way that the author talked about this cookbook hit me, and I immediately had to Google it.  I found it on Amazon along with another one of his cookbooks – Bouchon Bakery, and I of course immediately purchased them.

At first I thought I had never heard of this guy before but then when I saw that he was the owner of the French Laundry restaurant, I realized that not only had I heard of him.  I think I already have his French Laundry cookbook…  That’s scary when you can’t recall all of your cookbooks…

I have the same problem with quilting books too by the way :).

Anyways, both of these cookbooks are beautiful!!  Beautifully written and have beautiful pictures.  They look more like coffee table books, and I can’t wait to try some of these recipes.  One of the reviewers for Bouchon Bakery said the cookie on the front cover was the best cookie she’s ever had in her life.  You can’t ignore comments like that – at least I can’t anyways.  He also has a recipe for his version of Ho Ho’s.

Here are some photos of the books and some of the pictures inside.  I apologize for my bad photography.  While the pictures inside his book are beyond beautifully done, my iPhone photos of his photos might be less than perfect.

Bouchon Cookbook

Bouchon Cookbook3

Bouchon Cookbook2

Bouchon Cookbook1

Bakery Cookbook1

Bakery Cookbook4

Bakery Cookbook3

Bakery Cookbook2

Bakery Cookbook5

Bakery Cookbook6

Like I said – really beautiful cookbooks.  I am looking forward to trying a few of his recipes (especially those “Oh Ohs” which are his version of Ho Ho’s), and will let you know how they come out.

Have a great day and Lots of Love!!

Cheryl

Hi All,

My next assignment is to friend a few neighbors here in the Blogsphere, and I am so thankful for this assignment.

As most of you know, I love to cook and bake, and I am addicted to food blogs.  Through this assignment I was able to get connected with a couple of beautiful food blogs.  One blog in particular caught my attention because they featured an Indian chicken recipe that called for harissa paste.  Harissa is an ingredient that I have been researching after seeing it for the first time in a recipe for Harissa and Dijon Mustard Chicken on Superman Cooks.  This food blog is entitled Cupcakes and Curries and their recipe is the Middle Eastern Roast Chicken with Pearl Couscous Salad.

Now I have two harissa recipes to try.  Is your mouth watering yet?  Always looking for new ways to make chicken, and I really love to play with new spices.

Unfortunately, my acid reflux doesn’t like it…  Anyone know how spicy harissa is?

I also visited a few of the new friends that I’ve made over the last couple of weeks, and I have to say the most creative response to this assignment goes to Around Zuzu’s Barn.  Very creative post – loved it!

Lastly, I thought this entry from Katzenworld was very sweet!

There were many other blogs that I am now following, and I am looking forward to catching up on my reading!!

I hope everyone is enjoying the posts.

Lots of Love!!

Cheryl

Hi there, My next assignment is to help with targeting a new audience.  Since I am hoping to speak to quilters out there, I thought I would write about my recent trip to the Vermont Quilt Festival.  Here is my post.  Let me know what you think!

How are things going w/you? Things are going well here. I was on vacation for the last week and a half. First, some friends and I went to the Vermont Quilt Festival in Burlington, VT. As most of you know, this was my first time attending this yearly event,  and I was very excited to check out the 80 or so vendors. Spent way more money than I wanted.  But it was a nice and low key trip – no rushing around… Next year, I might take a class, but I’ve heard rumors that if you want to take a class you need to sign on around midnight the day the class schedule is released or else the classes sell out.

Plus if you’re a quilter and you’re anything like me – taking a class means another UFO** hanging around that will probably NEVER get finished….

**Quilters’ slang for unfinished projects

On our way to the Quilt Festival, we stopped at a place called Simon Pearce.  Simon Pearce is a place that does beautiful glass blowing but is also a great restaurant.  We had a nice meal, observed some glass blowing techniques and perused their beautiful shop.

SP Fire

SP Tools

SP Display

Finally – we made it.

The Vermont Quilt Festival had about 80 or so vendors!  OMG…

VQF Vendors

And I said hello to every single one of them 🙂 !!

They also have the most unbelievable quilt show.  I could have taken photos of every single quilt that was hanging there.  Speaking of hanging, there were quilts even hanging from the ceiling!

Hanging Quilts!!

After visiting with the vendors, we walked around the quilt show.

One spectacular quilt after another.  My photos don’t do them justice.  They were beautiful…

Here are just a few of them.

CS -Quilt CS - Ribbons CS - Credit

COL  COL - Credit

I just love bright jeweled tones on a black background!

Hey, does this quilt look familiar?

Tonga Nature Quilt   Tonga Nature - Credit

How about now?

My Tonga Nature

This quilt was NOT in the VQF, but I just finished it and had it hanging in my Guild’s (Rising Star Quilters) yearly quilt show.  It was nice to see the Paula Higgins’ version at the quilt festival, and I loved her choice of colors -very beautiful!

This is the last quilt I’ll show you, but I think it really represents the creativity within quilters.  I just loved it!!

WW Quilt    WW Credit

I could have posted so many more pictures – they were really quite exquisite but unfortunately I know that my photography wouldn’t do them justice!!

The last thing we did was attend a lecture by Bonnie Hunter.  If you ever have the chance to take one of her classes or see one of her lectures, don’t hesitate.  She was such an energetic, hilarious speaker.  I wish I had an ounce of her energy!  The auditorium was packed to see her!

Bonnie Hunter  Bonnie Hunter Audience

After the Vermont Quilt Festival which was Friday through Sunday, I spent the following week organizing my kitchen and basement. I bought four shelving systems that my Dad installed in the basement.

That last part probably sounded like the worst vacation EVER, huh…

I feel pretty good about it though. When we moved here, Jim’s health was in a bad place, so we literally dropped boxes and unpacked the bare essentials so even after almost three years here, I still had boxes to unpack.  But boy do things accumulate!! I cannot believe all the stuff I have accumulated over the years.

My Dad did an awesome job putting together and leveling the shelving.

Now, everything that was cluttering the kitchen counters and cabinets that I didn’t use on a regular basis was brought downstairs and put on the shelves so now I can see what I have and I know where it is. The kitchen looks beautiful – nothing on the counters and even all the drawers have new utensil holders…

Nice and clean…

We won’t discuss the number of boxes of fabric that I have in the attic though – EEEEEEK!!

That’s my next organization project.

Well, it’s getting late, and I think I’m an assignment behind now because I decided to go to bed early last night.  I’ll leave you with a picture of Kendall.  She always likes to lay down with one arm stretched out so I was trying to make it look like she was taking a selfie…  Like I’ve said before, bad photography…

But she just wouldn’t look at the camera!!

Kendall Selfie

Have a great night!  Lots of Love!!

Cheryl

Small Changes

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!!

 

A Year in Review

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

Hi All,

Hope everyone is doing well today. Wasn’t today a gorgeous day!!

I just got in a few minutes ago from visiting with Jim.

Don’t mind if I do…

Glass of Winev2

Jim had his first biopsy today to check for rejection in the heart and they said he did really well. We should have the results sometime tomorrow afternoon. They also took some “pressure” readings of the new heart while they were in there… Might as well, they said. Those came back fine.

So they did a CT scan yesterday. I asked what the results were and they indicated that there is a “tiny” pocket of fluid just at the base of his left lung. His left lung is also a bit diminished from the LVAD sitting on it – that’s typical. They decided that this pocket of fluid is so minimal that they are not going to treat it.

Great!!

Then tonight, one of the ID (Infectious Disease) doctors comes in and starts asking questions like is he out of breath at all and proceeds to tell him that she might have him do another chest x-ray because they want to make sure that “tiny” pocket of fluid isn’t the start of pneumonia.  Apparently, all of the immune-suppressing drugs he’s on will completely hide all of the symptoms of pneumonia.  Now I know it’s weighing on Jim’s mind (and mine).  I am looking for that feeling of relief. It’s been a week since transplant, and I haven’t felt that big sigh of relief yet.  Will it ever happen? I’m told it will. Probably when Jim is home and we are used to our new normal.

I met with the Pharmacist today while Jim was having his biopsy.

Holy crap!!

A lot of medications.  Not only a lot of meds, but the same meds with different doses throughout the day and meds at various times throughout the day. A big learning curve but we’ll figure it out.  We always do… She is coming back to sit down with Jim and review them with him and then before we go home she wants to make sure that we can organize a week’s worth of meds in front of her.

Great – a final exam!! I suppose it can’t be any worse than learning how to swap out the LVAD controller!!

Well, that’s it for now.

Thanks again for all the prayers, well-wishes and offers of support. We really appreciate it.

Lots of Love!!

Cheryl

PS:  Again, please excuse any typos – not proofreading…

Transplant Update

Hi All,

They moved Jim into a regular room this morning and the teachings have started. I’m taking tomorrow and Friday off for vacation because they are going to go over the medications and his new diet – a low-bacteria diet.

Ever hear of that one?

I’ve heard of a lot of diets in my time but never a low-bacteria diet.

Anyways, he’s doing very well. Getting visibly stronger every single day. They want him to eat more but he said he’s not hungry. I think he’ll eat better at home…

I’ve been posting as many updates as I can to Facebook to keep everyone in the loop. By the time I get home I would be just wiped and didn’t feel like making phone calls or sending emails.

I like to call Jim’s nurse before I go to bed just to check in on him. One time she was in with him and the receptionist asked if I could call back in two minutes or so. I said sure and then passed out and woke up around 4:00 a.m.

They are actually talking about Jim coming home this weekend – EEEK!! They are still doing a lot of testing though. There are a lot of people checking on him. A kidney doctor came in to see him today. His kidney function was slightly elevated. They did a CT scan on him tonight after I had left because he has a pocket of fluid just over his lung. We’ll get those results tomorrow. Then there is the first biopsy. That’s supposed to happen on Friday.

Ugh – my chest is getting tight again…

He went for his first walk yesterday in ICU and he did another walk today with Occupational Therapy. I told the OT person, once he gets his legs underneath him, you won’t be able to stop him.

When I walked out of his room tonight there was a handsome gentleman standing near the nurses’ station. He saw me come out of Jim’s room and you can tell by all the signage that it’s the room of a transplant patient, and he immediately put his hand out and introduced himself as Steve and informed me that exactly one year ago today he had his transplant. He came in to Tufts for his yearly check-up and biopsy and to say hi to the nurses – they were elated to see him. I thanked him for introducing himself and told him he looked great (the truth) and left the floor with a big smile on my face.

There is a heart transplant recipient in the room next to Jim. Again, you can tell by all the signage. Jim and I belong to a bunch of support groups for LVADs and heart transplant recipients and we learned today that there were five heart transplants in the past seven days – that’s a lot of hearts!! Not sure of all the locations but we know two were at Tufts…

I do have a bunch of pictures that I’m hoping to show you guys (have to ask Jim if he’s OK w/it first) but they are not on this computer anyways. Later…

I think that’s all I have to report for now plus I’m getting tired. Will write more soon.

Lots of Love!!

Cheryl

PS: Please excuse any typos – not proofreading this tonight!

We Got the Call!!

Hi All,

 This post will be a little rough around the edges but not a lot of time to proofread. Bear with me. Thanks.

We got the Call… Jim had his heart transplant on Thursday, May 22st. Everything went really well. The doctors were really happy with how the new heart looked and how Jim did during the surgery but said the next 24 hours would be critical. Today is Saturday, May 24, 2014 and Jim continues to improve. The vent has been removed and he has been talking. I haven’t seen him yet today (I’m getting some laundry done) but I saw him yesterday when he was still sedated and while he was a little puffy from the fluids they give him while in the OR, I thought he looked great.

Before I give you guys a blow by blow description of what happened, I want to say the following… The amount of love we feel for a family we have never met is overwhelming… We pray that the donor family can get some comfort from their generosity during this time. Their Thursday, May 22nd was very different than ours. We don’t know you but we love you and are so thankful to you.

 Thursday was a little busy for me at work but I still managed to find time a little after 12:00 noon to get a salad for myself in the cafeteria at work. I got back to my desk to see that I had a message on my work phone and also a text from Jim saying to call him as soon as I got this message. I called him at the store cuz he was in Fitchburg. His Dad had had a major congestive heart failure event a couple of weeks ago and Jim has been dealing with that and helping at the store.

I called him at the store and his seamstress Marilyn told me he was walking out the door and that he would call me from the road. He called me a short time later and told me that Dr. “D” called him himself (Dr. “D” is in charge of the heart transplant division at Tufts and said they have a heart and that there was an 80% chance of the surgery happening this evening. Jim said his instructions were to go to the house and wait for a phone call from Gail, one of the transplant coordinators. Jim told me to wait at work until he got the call from Gail. My heart is pounding so hard at this point. I remember thinking – yeah, right…

But he was pretty adamant about that. I said OK – I’ll wait until you call me. I told him to drive safe and to call me and let me know what’s going on…

I go to focus on my salad but had absolutely no desire to eat. I also try to focus on my inbox but no way can I focus. My heart is still pounding. I also didn’t like the idea of Jim being by himself at home. He was very shaky, scared shit in plain English. I text my boss and inform her that we just got to the call and asked if it was OK to work from home while we await word and she was like “SHUT UP!!  OF COURSE, YES!!!!!!!!!!!!!!!” Or something like that..

Now it takes Jim approximately an hour to get to Medford from Fitchburg. I’m about 15 minutes from the house in Cambridge.

I was scheduled to drop off two quilts to Laurena’s Long Arm quilting but needed the batting first. I decide that I still have time (since I’m leaving before he called me and since he’s an hour away – but not knowing that he’s doing a buck-something down Rte 2) that I have time to go to the Cambridge Quilt shop to pick up batting. It’s in Cambridge and I’m in Cambridge but I set the GPS to get me there the fastest way possible and head out…

This made perfect sense to me at the time- what can I tell you. One of the quilts is for Jim so I felt it was important enough.

I get about halfway to the Quilt shop when Jim calls me and says that Gail had been trying to get in touch with him but to get his butt directly to the hospital and to not stop in Medford. Jim called me and said I hope you’re on your way home. I said of course I was and quickly banged a “yewy” and got right to Washington Street and headed home. I was home shortly thereafter – maybe 15 minutes. Jim was already in the driveway. Wha??!!

 Then I find out how fast he was driving…

We run aroune the house – I had to do TINKLE!  Big hugs in the hallway.  He grabbed PJs, long and short sleeve T-shirts and some undies and we run out the door. 

Poor Kendall was like What The!!??

We get to the hospital and go to admitting as instructed. Then we go to the CTU unit (the cardiothoracic ICU) which is where he will be recovering after surgery. They had always told us to hurry up and wait and to be prepared to wait for hours at the hospital but it was non-stop action from the second we got there. There were consent forms to be filled out, the doctors were coming in. We found out at 3:00 p.m. that surgery was scheduled for 5:00 p.m.

HOLY CRAP.

The Chaplin came in and said a couple of prayers with us. She’s awesome. She was there when Jim had gone into Vtach and stayed with me that time. She’s retiring so hope she has a wonderful wonderful retirement!! I’m so glad that her retirement was after Jim’s transplant though!!! Timing is so funny… During the last prayer, I was getting very weepy but God wasn’t having any of that. All of a sudden the Chapin’s cellphone starts ringing and it’s this very let’s just say “upbeat”, remember the Benny Hill song…  Something like that – not very Chaplin-like, and we all started laughing… It was actually the hospital Priest calling to ask if Jim as a Catholic wanted the Anointment of the Sick sacrament done. Jim said “sure”. At this point, bring it all on, bring it all on!!

The Priest comes into the room and sits on the arm of the recliner chair and said he thought he had the wrong room cuz Jim looked so good for someone going in for a transplant.

While he’s sitting there the nurse and I notice that his fly is down… Sigh…. Is there ever an appropriate time to say “Hey, Father – Barn Door!!” or “Hey, Father – XYZ PDQ!!”??

Hopefully, the nurse told him later…

I decide that God is still trying to keep the humor going for us… Humor has always been what helped us get through this…

The Priest does a beautiful job doing the Anointment of the Sick Sacrament for Jim and then he does a prayer over him and blesses some holy water for Jim – I was going to ask if we could keep it but he quickly put it away so figured we couldn’t…

The anesthesiologist comes in, they put an IV line in him, do some bloodwork, a urine test, tried to do an A-line (I had to leave for that) but were unsuccessful. The anesthesiologist said no worries. They would put it in later while Jim was sleeping. He said we always get our way. That statement would come in handy for me later… They did an x-ray. Then the doctors and nurses that have been our team came down. Hugs and kisses all around. There was such a positive vibe in that room. It was so obvious how much they cared for Jim (for us) that they came down when the email blast went out that Jim was finally getting his gift. At one time, Jim was starting to get a little wigged out but I said to him – Hey Jim, he went “yeah”. I said “you’re going to be able to shower like a normal person!!” You should have seen the look on his face. He looked like I told him we won a million bucks. After that it was like – let’s do this!!

At 5:34 p.m. they rolled him down to the OR. 

I know that Jim is strong but I have to tell you that he went into the OR not even needing any “comfort measures”.  I was so proud of him. I gave him some kisses before he went into the OR and reminded him to say his prayer (a private prayer that we said at each dressing change or critical moment) and then patted his head and then I patted the anesthesiologist’s head for good measure. The nurse gave Jim a kiss for good luck.

To all of Jim’s friends and family – Jim for some reason was reminiscing about his 50th B-day party to the doctors (maybe they did give him comfort measures…) so he went into that OR feeling surrounded by the memories and love of having his family around.  Thank you so much for making that possible!

It was a very long 14-hour surgery. Not for Jim (he was sleeping) but for the doctors, nurses and for me and my brother.  Thank you to Frankie for bringing me Chinese food and spending the night with me. We stayed in the living room watching goofy movies until way too late. We watched Mr. Poppers Penguins and the Tooth Fairy with the Rock. Then tried to get some sleep. We got some but not too much.  At this time my irational fear kept haunting me.  I was scared to death that the new heart wasn’t going to restart, but I kept reminding myself of what the anesthesiologist said – they always get their way…  That statement would get me off the ceiling every single time…  

Every time  I thought of Jim that night, my chest would get so tight. 

I called the hospital around 4:00 a.m. cuz I couldn’t stand it anymore, but was instructed to call back in an hour or so. I called back at 5:30 a.m. and the nurse who answered called into the OR – she went back and forth with a nurse who was on the other end talking with the doctor. I was told they were closing him up. He was off the heart and lung machine and the heart was pumping on its own – they didn’t need to pace it and that they were really happy about that. Weepy time for Cheryl again…  The doctors were happy with everything, and that he would call me when they were done in approximately another hour or so…

I got a call from the doctor I think around 6:30 a.m. He told me the same thing as before except he mentioned there were some bleeding issues that took awhile to get under control. For some reason this didn’t alarm me cuz we belong to a few support groups on Facebook and you see that with every transplant. Plus Jim was taking Coumadin right up to the day of the surgery… I felt that was expected and the doctor said it was under control.

 Jim was brought back to the cardiothorasic ICU around 7:30 a.m. – 14 hours later.

The doctor said the next 24 hours would be critical. That statement bothered me so I didn’t get a feeling of relief at that point. He said that after a 14-hour surgery, they usually keep patients sedated for 24 hours. It helps them to get that rest and they were going to keep him on the vent/breathing machine during this time so his lungs will really get a rest. I thanked the doctor and think I said something goofy like he must need a good nap and he laughed and said all in a day’s work.  I hung up from him and proceeded to call everyone and their uncle and posted updates on Facebook and on the billboard on 93 South. Then both Frankie and I fell asleep. We slept until approximately 10:00 a.m. 

So it’s now Friday. Frankie left to go home. He had to go into work and wanted to get some serious sleep. I think I putzed around the house; had something to eat and then took a shower – that sounds about right. I did a couple of errands – I needed my BP meds (seriously) and yes, I went to the Cambridge Quilt shop to pick up my batting. Jim is sleeping and won’t even remember that I was there so didn’t feel a need to rush in there but I did need to see him though…

I also packed up his equipment. That was rather surreal. I had trouble giving up his back-up controller and batteries that we had brought with us to the hospital for his LVAD.   These things are his life and were with us everywhere we went. When they took Jim into surgery, they wanted them returned and I was like wait what if Jim needs them. They chuckled and reminded me he won’t but if he did, they had their own. Even packing up that equipment at the house was surreal. Going around and packing up the charging station, extra batteries and the heart monitor for his pacemaker / defibrillator to give back to the hospital – very surreal. Very weepy. Very wonderful!

 Won’t need these anymore!!

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 It’s Friday. It’s approximately 3:00 p.m. on the Friday before Memorial Day – the inaugural weekend to kick off the summer. I’m heading south on 93 (in other words heading towards the Cape). Ugh! Not one of my most brilliant ideas…

 It took me an hour to get to the hospital cuz of all the traffic. Usually takes about 20 minutes. Actually, I thought it was going to be worse than that but I was thankful I had a full tank of gas! 

It was worth it though – Jim looked awesome. A little puffy from all the fluids they give you while you’re in the OR but he looked great. Check out the display…

 Pre-Transplant Display

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NEW POST-TRANSPLANT DISPLAY!!

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Awesome! When this photo was taken they were pacing him with a temporary pacemaker to keep his heart rate up.  They actually want the cardiac function at this point to be on the high side.   

The nurse let me listen to his heart –OMG!!  Weepy moment again. I told her I want to be there when Jim gets to listen to it for the first time.

 Just so I can get weepy again…

 So that’s where we are so far folks. I’m getting ready to go visit him. It’s Saturday morning – the breathing tube has been removed and he’s talking and taking in ice chips (ice chips made from bottled water). You have to wash your hands before going in the room to see him and if you have a cold you need to wear a mask. His post-transplant precautions will be very strict and involved in the beginning but should lighten as time goes by, but believe it or not it will be mostly on what he can eat / not eat. Because his immune system will be very suppressed he will be very susceptible to catching stuff. Not just colds / flu but also food-borne illnesses. He will have to eat a bacteria-free diet for the rest of his life. No more sushi.  No more deli meats. No more fresh fruits unless it’s one with skin that peels like an orange or a banana. Have a lot to learn – again but we’ll get through it. 

Thanks for all the prayers, the love and support, the offers of assistance , and just being there. We love you all very much!

 Talk w/you soon.

 Lots of love! Cheryl

Spring is Here!

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

 

Plugging Along…

Hi there – how is everyone doing today? We are doing well here although I may have overdone things a bit.

Apparently, working full time, being caregiver to Jim and taking care of a house made planning his surprise birthday party and redoing the bathroom under strict deadline my breaking point.  A couple of days after Jim’s party, I was in the shower and noticed that I had some numbness on my left side. Ugh!! Before fearing the worst, I recalled that because the bathroom was so tiny, I did have to sometimes scrape wallpaper and paint using my left-hand. My left shoulder was very “crunchy” for lack of a better word so I am wondering if I pinched a nerve or something.

Orders for rest and relaxation have been given by my doctor.

Then she said “really rest.”

They know me… If no improvement or it gets worse, we’ll do an MRI. Fun stuff.

I did relax for a little bit, and I’ve had some nice pops from my left shoulder and now all of the numbness is gone.

I’ll be fine.

Jim is doing extremely well. (I’m almost afraid to admit that for fear of jinxing him.)

I’m very superstitious.

January 2nd was the last time Jim passed out. After that incident they considerably reduced the amount of diuretics that he takes. The diuretics were wiping out the potassium in his body and when it gets too low, he passes out…

Before that, (way before that) he was coughing to the point that he would black out. I don’t really think that Jim was even aware that he was blacking out, but it was very scary for the rest of us.

I made a point of going to LVAD clinic one day to mention it, and they had determined that it was caused by one of his medications (of course) and they stopped it altogether.

By the way – now whenever I show up at LVAD clinic, they assume something is wrong :-)…

So, no more coughing and no more lightheadedness or dizzy spells…

After the unconventional experiment, they removed his PICC line – see below (ignore the bruise). The PICC line is a Peripherally Inserted Central Catheter which is used for intravenous access for a prolonged period of time. Jim had two PICC lines actually and had them for almost a year and a half.

JA - Arm

No more infusions. He was doing four a day – now none…

I was doing dressing changes at least twice a day – sometimes more due to an incision that just wouldn’t heal. Now it has healed, and we are down to one dressing change every other day.

LVAD clinic visits have gone from every Monday to now once a month.

No lightheadedness, no dizziness, no blacking out or fainting, no more infusions, one dressing change every other day and LVAD clinic once a month.

Savor the moment!! Now hopefully things will stay like this for a while.

Having all this free time is seriously messing me up though… I don’t know what to do with myself. I just sit in a near catatonic state on the sofa until it’s time for bed. It’s a very strange feeling.

I don’t even think I’ve done much sewing.

Also, for some strange reason, I am in a cooking rut.

Ever get like that?

I’m just tired of cooking the same ‘ole things, or I just have no idea what to cook. No clue. I wander around the grocery store or peruse recipes on my favorite recipe blogs and cookbooks looking for some inspiration, but nothing… I cannot get motivated for some reason.

I did make some stuffed peppers recently that came out pretty good. I had a bunch of bell peppers leftover that I was planning on putting on a salad but decided against it at the last minute. I decided instead to use them to make stuffed peppers but was lamenting because we had had enough “saucy” things at that point. Jim then asked if we could stuff them with chili.

Good idea!!

Here is the recipe if you’re interested. Apologies in advance for the bad photography. This is my first attempt at being a food blogger.

 

Chili Stuffed Bell Peppers

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Ingredients:

Bell Peppers – any color – I love color so used an assortment

Two packages (approx. 2-2 1/2 lbs. total) of ground whatever floats your boat – chicken, beef, turkey, etc.

One can of beans – I used Black Beans but again use whatever you prefer

One can diced tomatoes

One can sweet corn

Two cans of diced green chilies

1 to 3* Chipotle peppers (remove the seeds) in Adobo sauce plus a tablespoon of the Adobo sauce (*depending on how hot you like it! :-)) NOTE: There are typically three to four peppers per can so one can is enough and just leave any leftover peppers in the fridge for another recipe (add to mayo for a special sauce).

One packet of Williams Original Chili Seasoning (for all our heart failure / LVAD friends – this has zero sodium)

One large onion

Shredded cheese – whatever kind you like (we used 2% Mexican Four Cheese)

Cumin (not pictured because I forgot…)

Chili Powder (not pictured because I forgot…)

For the garnish:

Sliced olives

Sour cream

Preheat oven to 350°. Put a teaspoon of oil in a sauce pan or Dutch oven and sauté the onion until tender.

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Then add your meat of choice. We used very lean ground turkey.

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Cook until completely browned.

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While the meat is cooking, take a pepper and

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carefully cut around and remove the stem.

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Cut each pepper in half length-wise to make cute little boats. Rinse and clean.

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Set aside for later. I just love all the colors!!

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Now back to the chili.

To the meat and onion mixture, add the Williams Original Chili Seasoning, corn, tomatoes, beans, both cans of green chilies, the amount of Chipotle peppers in Adobo sauce that you’re comfortable with (I added two) plus the tablespoon of the Adobe sauce from the can, two tablespoons of Chili Powder and one tablespoon of Cumin.

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Pretty colors!!

Stir until combined. Let simmer for 30 minutes. This makes a great weeknight meal because it takes practically no time to prepare.

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You can eat this as is or put on top of baked potatoes, hot dogs or hamburgers but since we had so many peppers leftover, I filled each little boat and put in a casserole pan filled with about an inch of low-sodium chicken broth (you can also use water). I use Trader Joe’s chicken broth as it’s the best tasting with the least amount of sodium I can find.

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Then I put them in a 350° oven for about a ½ hour or until the peppers soften to your liking. Cheese can have a large amount of sodium so I only put cheese on a few peppers for myself.

Pop them back in the oven for 10-15 minutes until the cheese melts.

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Also, for anyone interested in purchasing the Williams Original Chili Seasoning or anything else that is no – to low sodium, I find great items on www.healthyheartmarket.com. Check them out sometime.

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They even have zero sodium pickles.

The Chili Stuffed Peppers are done!! Top with any garnish you want – sour cream, sliced olives or green onions and enjoy!!

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So that’s it for now. Take care – lots of Love!!

Cheryl

 

 

 

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