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Archive for May, 2014

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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