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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

 

 

 

Happy Birthday Jim!!

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

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

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

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

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

CRAP!!!

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

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

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

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

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

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

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

Meanwhile, back to the bathroom…

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

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

Bathroom1

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

Bathroom3

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

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

I LOVES to spackle!!

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

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

Thank you, DAD!!!!

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

Newbathroom1

Newbathroom2Much better!!

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

Then we start getting the weather reports.

Storm

 Storm2

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

Super…

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

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

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

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

Whoa, hold that Tiger.

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

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

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

Processing…

Processing…

Still processing…

Tanya and I were laughing so hard.

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

Jim and Pat

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

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

Happy Happy!!

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

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

JimCake

Just awesome!!

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

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

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

Window decorations

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

That’s weird!!

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

My poor baby!!!

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

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

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

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

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

Love you guys!!

Cheryl

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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