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Posts Tagged ‘Life with an LVAD’

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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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

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

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

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

O. M. G!!! 

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

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

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

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

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

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

This is where he didn’t hit his head… 

 JA - Forehead

 

Here is his arm – probably trying to save himself…

JA - Arm 

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

JA Back2 

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

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

2013 Tree 

Beautiful!!

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

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

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

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

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

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

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

I don’t think she will do that again…

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

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

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

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

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

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

Yeeikes!!

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

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

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

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

Just kidding.

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

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

His antibiotics were restarted immediately. 

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

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

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

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

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

Frankie's quilt1 

See them!!

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

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

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

Whoa, where did that come from?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why not? 

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

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

Christmas wallhanging

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

Stars

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

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

I hope that everyone is doing well!! 

Take care and lots of love!!

Cheryl

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So the last time I updated you guys Jim was yanked into the hospital due to a low INR.  The INR is the number that indicates if his blood is too thick and might clot or if it’s too thin which might cause a bleed-out.  Well, at least that’s how I understand it… 

Sometimes the doctors are comfortable treating it by changing up the amount of Coumadin he takes at home.  Sometimes they want him in the hospital for “therapy”.  This is something we have lived with since the LVAD was implanted over a year ago.  Pretty routine.

Then something usually happens to remind us how quickly things can change.  I went to visit him and was shocked when I walked into his room.  He was sleeping but his face was extremely red and he looked sweaty.  I asked the nurse what was going on, and she indicated that he had a fever of almost 103.  He woke up when he heard me come back into the room and wanted to get into the chair.  He then fell asleep in the chair.  I looked at his monitor and watched his heart rate drop from 83 to 60 in seconds flat.  I thought that was weird but maybe he did fall asleep.  He then suddenly sat up and said he didn’t feel good and wanted to go back to bed.  The nurse was there at this point and the two of us were in the process of helping him back into bed.  He was tangled in all his IV tubings and while the nurse and I were trying to untangle him all the bells and whistles started going off on his monitor.   

Jim went into ventricular tachycardia.  Wikipedia says “Ventricular tachycardia (V-tach or VT) is a type of rapid heart beat, that starts in the bottom chambers of the heart, called the ventricles.[1] The ventricles are the main pumping chambers of the heart. This is a potentially life-threatening arrhythmia because it may lead to ventricular fibrillation, asystole, and sudden death.”   

The nurse started yelling and I mean YELLING.

I NEED THE TEAM IN HERE!  I NEED THE TEAM IN HERE NOW – NOW NOW NOW!!  I MEAN IT – GET THE CRASH CART!!!

Thanks to the LVAD, Jim never lost consciousness.  I just kept talking to him and trying to keep him calm.  Between the nurse yelling, the alarms on his monitor going off and the room suddenly filling with people, it got very intense, very quickly.  Two nurses escorted me into the hallway while everyone tended to Jim.  They got me a chair and next thing I know the Chaplain was with me.  She brought me Kleenex, hard candies and some water.  Very thoughtful but beyond scary…  They did keep coming out and telling me that Jim was fine, but he was still in V tach.  They decided to put him to sleep / intubate him and they ended up using his defib to shock him out of V tach.  When he was asleep, they let me back into the room.  Dr. Estes was there large and in charge, and he told me that Jim was being very stubborn.  He was V taching just below the thresholds that they set for his defib to fire.  They would lower the threshold and Jim would v tach just under the threshold!

They were talking like I knew what the heck they were talking about. 

Dr. Estes gave me an example.  They set the threshold for 120 and Jim starts to v tach at 116. 

That’s my man!! 

They finally got Jim “quiet”.  Heart rate back to normal and they kept him sedated in a medical coma and intubated for the night and moved him into ICU. 

At some point, I called his Dad to tell him what was going on and as it turned out he was in the garage about to walk over to the hospital.  He was expecting to see his son in his regular room – surprise… 

Jim’s father left.  I stayed until Jim was settled in ICU.  I just wanted to see him before I went home.  That night I couldn’t even close my eyes.  I didn’t want to take anything to help me sleep in case I needed to drive back to the hospital. 

I posted to my friends in LVAD friends.  A Facebook support group that Jim and I belong to – they have been a huge help. 

Thankfully, there were no phone calls from the hospital that night.  I was nervous about going in to see Jim the next day. 

I don’t know why – it went so well the last time I visited… 

He was still in ICU but the breathing tube was removed.  He did look better – his fever had broken sometime during the night so he wasn’t so red or sweaty looking.  He was awake but looked wiped.  I asked if he remembered what happened and he shook his head no.  Probably for the best I thought…

Turns out a combination of very high potassium (7.7) along with the high fever was enough to put him into V tach. 

They kept Jim in ICU for a couple of days, and I knew when Jim was feeling better when he was arguing with one of his doctors about going to a regular room… 

He got moved to a regular room (when they felt it was safe) and finally came home on Tuesday and proceeds to go downhill.  He had awful stomach issues – vomiting and diarrhea.  We end up calling the doctor on Sunday who said if he keeps feeling miserable to come right into the ER.  Jim had LVAD clinic on Monday so Monday morning he walked into Clinic feeling so miserable that he just told them to admit him.  The nursing staff fast-tracked him, and they put him into ICU again.  His numbers were completely out of whack.  His INR which should be between 2-3 was over 10!  Turns out when he was sent home from the hospital the first time they gave him a regimen of meds that he shouldn’t have been taking. 

He got home last night.  When they were discharging him though, they tried to put him back on the meds he’s not supposed to be taking anymore – I swear to God!!  I nicely gave them the facts of life, and I’m happy to report that today is the best day he’s had in weeks.

Both Jim and I want to thank all of you for all the well-wishes and prayers.  You have no idea how much you guys are appreciated.  We love you guys!!

Lots of Love!!

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So, we had a nice Valentine’s Day / Jim’s Birthday celebration.  I ended up not making an extravagant meal for Valentine’s Day.  We are trying to cut back on calories and decided to save the special meal for Jim’s birthday.  For his birthday, I always have the family over and make a Beef Wellington dinner.   This is not a Gordon Ramsey recipe for Beef Wellington, mind you (although I’d like to try to make his recipe).  It’s Sara Moulton’s recipe for Mini Beef Wellingtons with Gorgonzola Cheese.  Absolutely delicious and very simple to make.

 I was also going to bake a cake but decided against it because everyone (including Moi) is trying to watch their calorie intake and for me and Jim after everyone goes home and leaves us with the leftovers, it’s just way too tempting to have a layer cake just hanging around waiting for someone to come by and smell it, fondle it, grab two handfuls and smear it all over their face and wait, what? 

 Ah hem…. 

 So I decided to go with this Pot de Crème recipe.  Individual servings – no leftovers…  I also substituted the sugar with Truvia. 

This is now my GO-TO PMS dessert!!! 

 
Whoa – where did that come from?!

You couldn’t even tell that they were made with Truvia!!  They are basically a cross between a pudding and a mousse – very yummy!! 

Kendall enjoyed Valentine’s Day as well. 

Well, what have we here?? 

Kendall - VD Bag1

This looks interesting (Translation:  Comfy…)

Kendall - VD2

ANYONE IN HERE, HERE, HERE, here??  (me doing an awesome echo sound effect) 

Kendall - VD3

Nice!!

Kendall - VD4

What is it about cats and bags…?  They do love a good bag, don’t they?  Kendall loves it when I come home with paper grocery bags… 

Kendall?

Kendall - SB1

Hello?

Kendall - SB2

Yikes – no shame… 

Kendall - SB3

I can never control the urge to tickle her bellies!!

I’ve been thinking of changing the blog’s name to “Kendall’s Korner.”  Or something like that…

But this blog isn’t just about being Kendall’s Mom.  It’s also about being a wife and caregiver to my Hubby who is waiting for a new heart…   

Someday it will have some quilting stories on here.

In the meantime, I wanted to take a few moments to try to address a question that Jim and I get all the time. 

When will Jim get his heart transplant? 

 

Answer:

Crystal Ball - purple

 

Unfortunately, we’ll need the crystal ball to answer that question…

This is what we can tell you…  Right now, Jim is one of 20 transplant candidates (this is his standing at the hospital).  Four (including Jim) have the same blood type.  What’s Jim’s blood type, you ask?  That’s a very good question, but I forget at the moment because I’m an Iggy… 

Anyways, the hospital did 17 transplants last year.  For me, that was AWESOME news, because I thought they only did 4 or 5 transplants a year so to hear that they had done 17 last year was unreal. 

It’s a brand new day!! 

They also said that transplants seem to happen in “clusters” and that unfortunately they have seen a serious decline in organ donations over the years –  which is very sad.  Not enough marketing if you ask me.

So if you look at it that way, we are still probably about 1-½ – 2 years from getting the Call… 

THIS is the hardest part – the waiting… 

I hope that helps to answer your question…  If you have any other questions, please don’t hesitate to ask!!

That’s it for now!  Have a great weekend!!

Lots and lots of love to you!!

Cheryl

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Hi All,

Hope all is going well.  Things are going well here.

Jim has recovered from his incident last week and is doing very well.  He is going back to work tomorrow.  He does want to start driving (against my wishes but I can’t sit on him, I suppose) so he has a service taking him tomorrow, and we are going to go out again on Saturday to see how he does during and after the drive.  I googled “driving with an LVAD” and was surprised that a lot of people with LVADs are driving and had tips such as wearing some sort of information packet around your neck so if you are (God forbid!)  in an accident, the EMTs will know what to do.  People with LVADs do not have a pulse so we want to make sure no one is erroneously pronounced dead because a pulse couldn’t be found.  No chest compressions either…  Someone else suggested putting a pillow in front of the steering wheel in order to help absorb the airbag should it deploy in an accident.  Ugh!!  All things I don’t want to be thinking about, but like I said before I can’t sit on the guy…

He did assure me that:

1)  he would listen to his body before getting in a car;

2)  he wouldn’t be working every day;

3)  he would return home before it got dark and

4)  he would have me on the phone for his entire trip.

OK just joking (slightly) on #4.  🙂

Not long ago, I had put my foot down and insisted we hire a cleaning service to take care of the domestic housecleaning…  Things are crazy enough with working full-time; grocery shopping, meal-planning; paying bills, laundry – goodness the laundry!; doing daily dressing changes / infusions – even just having to take out the trash can seem overwhelming sometimes and oh by the way – I have to remind myself that I have chronic illnesses…  For the most part, I make it through a day unscathed, however, I can get fatigued if not careful…  Having said all of that…

It is still very important to have a clean house…

Thank you EcoClean!!!!  They have been with us for a while now and do a fantastic job each and every time!  Plus, they do not use any type of horrible chemical when cleaning your house…

Another way I’ve tried to simplify life — a Slow Cooker.  Thanks to my parents (DAD!! or Mom but blaming Dad – it’s hard to tell), I now have quite the library of slow-cooker cookbooks.  It does make life a a lot easier to not have to do much to prepare dinner (or clean up dinner J) when I get home from work…  I made Chicken Tortilla soup the other night.  It came out pretty good (although spicy!!).  Last night I made a Curry Beef Stew.  I was concerned because Curry can be very strong.  I remember a friend of mine telling me she had made veggie curry in her crockpot and when she got home the entire house, her closet of  clothes, her sofa, her curtains, her dog – everything smelled like Curry.

This recipe only called for 1-½ Tbls. of Curry so it wasn’t

CUUUURRRRYY!!  Whoa, where did that come from?

Anyways, the stew was delicious.  The recipe is a keeper…

Today, I am making a roast pork soup with ginger, soba noodles and bok choy.  I couldn’t find any soba noodles in the international aisle at Stop and Shop so Vermicelli it is!!  I haven’t tried it yet but Jim called and said it tasted really good.  Errr – thanks Hon, but that’s for dinner…

Note:  Do not put the Vermicelli in at the start.  Cook it separate and add it to the soup when you’re ready to serve.  Trust me on this J…  Jim had to add more broth because the noodles soaked them all up…  It also looked like I could have added about half the amount of Vermicelli…  Learning curve.  I definitely want to try it again though.

Next is a ground turkey 3-bean chili, but I might save that for Game Day – Go Pats!!

Gotta run but will write later.  Thanks for stopping by – appreciate it!

Lots of Love!!

Cheryl

PS:  I haven’t mentioned Kendall in a while so here is a picture of her playing with one of the new toys that Santa had brought her.

Kendall - Christmas Day

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