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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…

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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!

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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!!

Jim's Transplant 031

Jim's Transplant 030

Jim's Transplant 029

 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

Jim's Transplant 028

 

 

NEW POST-TRANSPLANT DISPLAY!!

Jim's Transplant 036

 

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

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

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

Flower1

Flower2

Flower3

Flower4

Flower5

Pretty…

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

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

Kendall Sleeping

Good Lord, Kendall!!

She has no shame whatsoever…

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

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

Just thought you’d like to know.

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

X-mas Wallhanging

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

I see some metallic sparkly threads in my future!!

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

Jim Leg

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

One of my favorite quilts.

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

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

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

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

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

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

Delicious!!

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

Like back in 2008.

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

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

DJ Lesson 1 Blocks

I was making a PURPLE Dear Jane. Cool!

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

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

Explains why I stopped…

Here is a picture of the entire Dear Jane quilt.

DJ Quilt

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

Or depressing…

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

Hope everyone is doing well. Lots of Love!!

Cheryl

 

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Hi All,

 How are you doing?  We are doing pretty well here despite a couple of recent incidents.  Jim was having a rather bad case of cabin fever so he scheduled a sedan service to take him into work.  His store is located about 40 miles from the house – a good hour’s drive.  I thought it was a great idea because it told me that he’s feeling well.  He asked me to pick him up after work though.  Unfortunately, after work for me is about 5:00 / 5:30 p.m. and with traffic it took me about two hours to get to his place of business.  To say he was tired and grumpy when I got there is an understatement…  Apparently, while he was at work, he came out of his bathroom and caught the power cord for his LVAD on the door knob and nearly ripped the power cord out.  Thankfully, there is an “anchor” that is attached to his stomach that hooks the power cord and helps prevent this type of issue causing serious damage.  I mean this thing is attached to his heart…  He did a good job.  Even with the anchor, his dressing changes have been bloody since then.  Then we get to our home town and we stop somewhere to get takeout (just what a growing boy who’s on the heart transplant list needs – TAKEOUT!), and he was so tired and distracted that when he was switching his LVAD from car power to battery, he accidently unplugged the power source for his LVAD.  It starts shrieking and Jim is just staring at it trying to figure out what he did.  I said don’t panic, and he plugged two power sources back in and all the red lights went out and it went completely dark.  Apparently, it kind of resets…  I held my breath for what seemed like eternity and then at last the LVAD lights and numbers came up like normal.  I asked him if he felt anything and if he was OK, and he said he was fine – just tired, but I did notice he did a little two-step / grab-the-counter maneuver that alarmed me.  (No pun intended)  He wanted to eat at the restaurant, but I decided at that moment (and he agreed) to take it home. 

 Jim would like to do this every Tuesday until the end of the year.  Super…  If that’s the case, I’m going to have to do a crock-pot or something that morning.  I also think a shorter day for Jim is in order but not sure how that’s going to happen if I’m the one picking him up… 

Jim mentioned the “pulling” incident at Clinic and they checked the driveline site and did a cat scan to check the position of the driveline and thankfully everything looked great.  Apparently, the anchor did it’s job…  I shudder to think about what happened that made them realize they need to provide patients with these anchors…  Ugh!!  The rest of his visit was uneventful (uneventful is very good in my mind).  His blood work came back normal, and they thought overall everything looked fine.  His status on the heart tranplant list is 1A.  You typically go to 1A  when you get an LVAD, and you stay at 1A for 30 days.  However, due to Jim’s infection they are keeping him at 1A and their 1A’s are running about a year for transplant.  Please keep him in your prayers – they do work.  Thank you!

Want to hear a secret?  Promise you won’t tell anyone…  I had a dentist appointment this morning.  That’s not the secret…  The thing about the dentist is it’s right across the street from my parent’s house.  Here’s the secret…  After every dentist appointment I’ve had since moving away from my parents, I go to my parent’s house and share a cup of coffee with my Mom (and Dad if he’s not at work!).  It’s a guilty pleasure that I’ve enjoyed for many years now and hope it continues for years to come. 

Signing off now but look for a post soon (hopefully this weekend) about the Gathering quilt show that I went to – it was an awesome show and if you’re a quilter, I really hope you got to enjoy it too.  Take care – lots of love!! 

 Cheryl

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Hi All!!  Please forgive the lack of updates…  I haven’t been feeling that great these past few weeks.  Recently, I have been dealing with a stomach bug.  Nothing too serious – just a low-grade, constant feeling of nausea along with the other unfortunate side effect of a stomach issue…  I ended up taking a day off from work because I had been pushing and pushing and pushing and everything just caught up to me…  Yesterday was the first day that I actually felt a little better.  I still cannot look at food though without getting a stomachache.  Ugh…

So – this is where we stand right now – Jim is BACK ON THE TRANSPLANT LIST!!  The Infectious Disease doctors feel that while he still has an infection, they are on top of it, which is great news!!  However, the pool of fluid in his abdomen has returned despite the fact that they had drained it and three weeks ago it looked like the last remaining bit was being absorbed into his system.  They are debating on what to do about this so we are basically waiting for the call for Jim to get readmitted – because that’s usually what happens.  Talk about constantly feeling like the hammer is going to fall… 

I left work a little bit early yesterday.  I realized that Jim has been feeling so lousy / so fatigued that he is not able to care of himself…  He apparently doesn’t even have enough energy to pour some egg beaters into a pan for himself!  I started to wonder if I needed to take a Leave of Absence from work in order to get him ramped up (Jim didn’t like that idea – something about needing the $$ to pay bills or something)…  I went to the grocery store and bought some eggs and ground turkey and when I got home I made some hard-boiled eggs and mini turkey meatballs to leave in the fridge so he can have something to snack on throughout the day.  I also bought some fruit too.  I’ll have to be better about making sure there is always something in the fridge that he can just grab until he gets himself to a better place.  Anyone have any suggestions on things to make ahead of time and leave in the fridge??  Has to be something I can prepare with very low sodium and no dark leafy green veggies because he is taking Coumadin.  Thanks in advance for anything suggestions you can offer…  I might make eggplant parmesan to leave in the fridge but we’ll see – that one takes a bit of effort and time…

At this point, we are not really sure what to expect.  How should he be feeling at this point in time after his surgery?  He still has an infection.  Although the Infectious Disease doctors do feel they are “on top of it”, that must still play a role into how he’s feeling.  Is it normal for him to be so out of breath / tired when he exerts himself or walks up a flight of stairs?  We went for a walk the other day.  My idea – kinda pushed him to do it because it was so beautiful outside.  However, we didn’t get very far, and I literally thought I was going to have to get my car to bring him home!!  I felt terrible for putting him through that BUT is that what needs to be done in order to ramp him up?  Right now he has zero cardio stamina.

I have had quilt shows pretty much every weekend so far and they continue on until Thanksgiving – J!!  I thought it would be a good idea if he accompanied me to them – would be a good casual way for him to walk around.  He’s always been a pretty good sport when it comes to my obsession.  In fact, one of the reasons I fell in love with him was because during a trip to Amish Country – we had stopped to go into a quilt shop and he said after checking his watch I had five hours to shop – whoo hoo!!  Anyways, after a quilt show last weekend, he was completely wiped for a couple of days!  However, he did notice that he wasn’t as winded this week walking up flights of stairs…  I’m going to see if I can convince him to accompany me every weekend.  Wish me luck… 

So now we have Sandy to think about – should be interesting to see how she hits us.  The forecasters get SOOOO excited!!  Storm could be historic!!  Sheesh!!  If we lose power, Jim’s batteries will last about 10 hours before they need to be charged again.  I spoke w/my parents and luckily they have a generator that we can tap into – Whew!!  At least we have a solution to the problem.  If we lose power, I am planning on SLEEPING!  Whoo hoo!!

That’s it for now…  I hope all is going well with you.  Take care and I’ll try to be better with more timely posts and of course photos of Kendall.  Here she is here looking at me like she’s saying “WHAT??!!”

Lots of Love!!!  Cheryl

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

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

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

I hear you laughing… 

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

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

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

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

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

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

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