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Archive for July, 2012

 

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So this photo kind of sums up my life right now…  I think we are heading in the right direction but it was a big bump in the road.  We were expecting it.  When Jim was first diagnosed with heart failure in 2006 they said he would get a lot sicker before he could get on the tranplant list…  They were right and we knew it but it’s still not anything you can prepare for. 

Jim has been in the Cardiomyopathy unit now for two weeks and he is getting transferred to the Rehab unit this afternoon.  He’s been calling me pretty consistently today wondering why I’m not at the hospital.  I explained – I’m working…  That usually will end the conversation there but not today…  He’s a bit anxious – I think it’s about the move to the Rehab facility. 

He is getting well-aquainted with his LVAD.  I haven’t really been playing with it but the Rehab place and/or Tufts said they would train me on it.  It needs two power sources at all times – either two batteries; an outlet and a battery or an a/c outlet and a battery.  Always a back-up.  That’s all I know…  For now…

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Jim is doing great with his recovery.  He’s a very different person from the person in ICU two weeks ago and even a different person from a week ago.  It’s amazing how resilient the body is and what we can bounce back from.  He did have an issue with the right side of his heart like I mentioned earlier but so far that is fine.  They were worried about an infection because he was burning up with fever but so far that is fine as well.  He had a bout of after-surgery delirium and I’m happy to report that so far I am doing fine.  I say I’m fine because it was so strange to me to see him like that.  Just in his own little world but he was getting drugs; 24/7 nurse care and I was the one going home and not sleeping hoping he didn’t have a stroke.  They had given him some Respiridone(sp?) which I googled (and then wished that I hadn’t…) because it’s for people with bi-polar disorder, blah blah blah.  I had asked the nurse and actually one of his doctors had explained to me that after surgery (and remember they had re-intubated him so he was under anesthesia twice) the brain gets loaded with dopamine(again sp?) and that can cause this delirium in people.  This medication is a dopamine-blocking agent.  I immediately felt better.  They do really know what they’re doing…  But I will still question – that’s my job…

So I think Jim is mad at me right now.  I’m here calling BCBS and Tufts Patient Billing because for some reason Tufts cannot apply my new insurance information (from January) to one of the many bills and we keep getting these threatening phone calls.  I’m here with the painter who showed up today to get the colors we need AND get started on the priming because I want the house at least to be clean when he gets home, and I think he’s mad that I’m not sitting with him.  He doesn’t understand that I figure by the time I get in there he will probably be in an ambulance and on his way to the rehab place (of course they keep moving up the time and we are now late afternoon – UGH!!) and then I’ve got to get in the car to drive to the rehab place.  I was hoping to just meet him there at the Rehab place and make life easy for myself.

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I have been dealing with the Tufts Patient Billing department.  There are two bills from January that they said they have no insurance information for.  I called and spoke with “Josh” about this months ago.  He said he does recall one conversation in June.  Super…  In January my company was bought out by another company and our insurance information changed.  Jim and I were very proactive – actually going there in person to give them the new information but these charges just fell through the cracks.  I finally called about two weeks ago and got in touch with Josh.  Josh is let’s say “fluffy”.  He kept telling me that he had to look up something and asked me to call him back a few days later.  I’d call him back and get the same song and dance.  He’s easily flustered…  I should have asked for a supervisor at this point but I didn’t think of it.  I kept telling Fluff-head to just apply the insurance information I had provided him and we will all be able to move on with our lives.  I got the same song and dance to call him back.  I called him back today and got William – who we’ll call ‘Tude-face.  He hung up on me…  I called back and spoke to a nice woman who informed me that they couldn’t talk to me about it anymore because it was at the Collections agency.  Wah??!!  I have been dealing with Fluff-head for months and all he needs to do is apply the insurance information and everything will be taken care of.  Needless to say – I was a RAVING LUNATIC and reached out to everyone except your grandmother but it’s still not resolved… 

So that’s my stress right now.  Trying to get the house renovations done before he gets home, keep the affairs of the house moving in the right direction, keep things together at work, try to keep him happy and comfortable but keep things simple and realistic so I don’t stroke out… 

I want to thank everyone for the nice emails and comments.  I do read them and I’ll reply as soon as possible.  I really appreciate getting them. 

Lots of Love!!  Cheryl – AKA the Raving Lunatic

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Surviving Cardiac ICU

Hi All

Apologies for the delay in getting this post out.  I’m not ashamed to admit that I was a little overwhelmed with the whole ICU experience.  I don’t know what I was expecting to see when I got there but each and every time I walked in I would be a bit disturbed at the sight before me.  A friend from work who was a nurse in cardiac ICU for infants summed it up best when she said to me “more machinery in the room than human being and tubes coming out of everywhere the size of garden hoses.”

That pretty much says it all right there.  At one point I was worried he had a stroke because he just wasn’t moving or responding to questions.   I was told that the doctor felt that he needed more time. This was normal.  He’s still a bit boobats.  His speaking is very off but he’s sleeping a lot which is good.  I was told the speech thing is normal because he has a lot of med’s in his system. I hope they’re right. All I can do is trust that they know what they’re talking about.  The nurse today is wonderful. She assured me it’s a huge trauma to him but he will be a different person a week from now.

I was contemplating taking a picture of him when I first saw him in ICU.  More machinery than human being, tubes the size of garden hoses, the LVAD machine, the ventilator, I counted 19 IVs hanging full of various medications – he was getting the good stuff. I was jealous!!  I decided not to take a photo. While I really thought he would be interested in seeing it later on, I thought he’s at his most vulnerable right now.  It just didn’t feel right to take a photo of him.  He just informed me that tomorrow I need to bring him back to the hospital.  Yeeikes!!  This is normal, right?

Cardiomyopathy Unit

Today (July 18th) they moved him back to the Cardiomyopathy Unit. A step up.  The nurses and physical therapists will start to really work on him now to get him back to his ‘ole self.  The nurse said a week and I’m going to hold her to that.

Gotta run. Jim’s getting his nighttime medications so I will be heading home soon to try to get some sleep.  Emphasis on TRY.

Goodnight!!  Lots of love  Cheryl

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Weekend Report

Hi All

I just wanted to let you know that Jim is doing better.  As you may recall, the right side of his heart became “depressed” after surgery and he had a very high fever. His oxygen levels were extremely low.  They decided to incubate him again and put the breathing tube in to give his heart some rest and started him on some medications. I forget what the meds are because I’m an airhead -sorry.

I am happy to report that his numbers have improved and that his heart looks much better. Jim is responding well to the rest and medications.  They are now taking him off the meds and woke him up today. They are going to take out the breathing tube tomorrow.

He still has a fever so they took some cultures to see if there is an infection brewing anywhere. We should get those results tomorrow.  I know these types of things happen after surgery but it’s still very nerve-wracking!  I hate leaving him and when I get home I don’t feel like doing anything.  I cannot wait for him to be healthy and happy again so he can come home.

Gotta run but will write more later.   Hey, be sure to check out the page about Kendall!!  It’s at the top of this blog.  Talk soon.

Lots of love Cheryl

 

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Day After Surgery

Hi All!!  It was a very long day yesterday (thanks to Mom for sitting with me in the waiting room).  I can’t tell you how tired I was.  Gone are the days when I could pull an all-nighter and function no problem the next day!!  By the afternoon I started to notice that if I turned my head quickly to one side I would get extremely light-headed.  I decided it might be a good idea to take a vacation day today.  Needless to say I was in bed by 8:30 pm and slept and slept and slept.  I woke up around 10:00 am but didn’t rush out of bed.  I needed some down time.  I did call the hospital at 10:00 am to see how Jim was doing and they said he was doing well but was in a lot of pain which was to be expected.  He was already asking what time I would be getting there and to bring his cellphone…  I did a few errands (and by a few I mean I did one errand :)) and got to the hospital around 2:00 p.m.  His Dad was there in the morning but was gone by the time I got there. 

I have to admit that while I wasn’t sure what Jim’s condition would be he looked a lot tougher than I had expected but decided that since the nurse wasn’t concerned I wouldn’t worry.  His breathing was extremely labored and he was in and out of sleeping.  Mostly sleeping.  I was told he did have a fruit plate (well part of a fruit plate) around 1:00 p.m.  I let him sleep and held his hand.  Next thing I know the doctor comes in and tells me that they are a little concerned that his oxygen level is extremely low.  He’s hooked up to oxygen so it shouldn’t be that low.  I believe it was running about 80% and they want it higher.  There was another number they were concerned about but didn’t explain that one and I admit I didn’t ask.  My stomach was turning at this point…  They tried to do an echocardiogram to take a look at his heart but because of his size and inflammation from the surgery they couldn’t get a decent picture.  They ended up knocking him out again, putting the breathing tubeback in and taking pictures by going down his throat.  They found that the right side of heart (the weaker side) was “depressed” so they have added an additional medication to his regimen and will keep the breathing tube in and keep him asleep tonight.  They informed me that this sometimes happens after a LVAD is put it – sometimes the right side of the heart needs to get acclimated to the VAD and/or sometimes needs some extra time to adjust. 

Let’s hope that things show some improvement tomorrow!!! 

It’s about 10:15 p.m. and I was sitting here watching TV, composing this post and I started to get myself worked up so I started to dial the number to the CTU area (cardiac ICU) to see how Jim was doing when I noticed on the TV that Tufts WAS CALLING ME!!!  Unfortunately, I couldn’t pick up the call so they ended up calling my cellphone which thankfully was on.  They wanted my permission to insert another chest tube into his chest because they have found a collection of fluid building up around his lungs that could also be hindering his breathing…  Sheesh – scared the crap out of me!!

He’s a figher and I reminded him of that earlier today…  I hope he has a good night…

and I hope that you all have a good night.  Thanks again for the well-wishes.  Talk w/you soon.

Lots of Love!!  a still jittery Cheryl

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Jim Update!!

The doctor just came down – everything went very well.  Jim’s off the breathing machine but they will keep him asleep for a few more hours.  I can see him in another hour and a half.  The doctor said he had a hole in his heart (very common – alot of people have it) but it would have affected how the LVAD worked so they had to repair it.  I am very happy the surgery is done – now he can recover!!

My Mom and I are going to grab a bite to eat and come back.

Thanks again for all the well-wishes and prayers.  They are much appreciated!!

Lots of Love – Cheryl

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Surgery Underway

Hi All, apologies for the delay.  It was an awful night and an awful morning.  Jim didn’t sleep at all (neither did I).  He was so wound up about the surgery that all the Lorazapam (anti-anxiety med) in the world wasn’t going to help at all and didn’t help – they gave him LOTS but he was just too wound up.  The good news (so I thought) was that they took him to the pre-OR room early – around 6:20 a.m. BUT he ended up waiting in that pre-OR room while the doctors went to a LVAD (Left Ventricle Assist Device) meeting.  I don’t know about you but I thought that was schmucky – they knew how anxious he was and they let him sit there until about 8:15 a.m. or so.  He ended up getting so anxious that another doctor came over and gave him a shot to calm him down and left a note for Jim’s doctor so they have it on record.  Anyways, the surgery is underway and I’m here in the family waiting room with Mom.  I will keep you posted on his progress.  Thanks again for the well-wishes.  Love, Cheryl

 

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Tuesday

Hi All,

I’m here with Jim and as usual when I arrive, we have dinner together and then he takes a nice little nap for himself.  Still moving forward with the LVAD surgery for Thursday and Jim’s getting very anxious about it.  He did meet with someone this afternoon who has had an LVAD for a year and had a nice discussion about what it’s like living with one.  He is feeling a little bit better about it…  Emphasis on a little bit

I did get some feedback on this blog.  All of it positive but some people mentioned they didn’t understand the abbreviations like LVAD and Vtach so I will try to be better at explanations.  Starting now…

Here are the explanations for VTach and LVAD:

VTACH – Ventricular tachycardia (V-tach or VT) is a tachycardia, or fast heart rhythm, that originates in one of the ventricles of the heart. This is a potentially life-threatening arrhythmia because it may lead to ventricular fibrillation, asystole, and sudden death.

LVAD –  A ventricular assist device, or VAD, is a mechanical circulatory device that is used to partially or completely replace the function of a failing heart. Some VADs are intended for short term use, typically for patients recovering from heart attacks or heart surgery, while others are intended for long term use (months to years and in some cases for life), typically for patients suffering from congestive heart failure.  VADs need to be clearly distinguished from artificial hearts, which are designed to completely take over cardiac function and generally require the removal of the patient’s heart.  VADs are designed to assist either the right (RVAD) or left (LVAD) ventricle, or both at once (BiVAD). Which of these types is used depends primarily on the underlying heart disease and the pulmonary arterial resistance that determines the load on the right ventricle.  LVADs are most commonly used, but when pulmonary arterial resistance is high, right ventricular assistance becomes necessary.  Long term VADs are normally used to keep patients alive with a good quality of life while they wait for a heart transplantation (known as a “bridge to transplantation”).   LVADs are sometimes used as destination therapy and sometimes as a bridge to recovery.  In the last few years, VADs have improved significantly in terms of providing survival and quality of life among recipients.

OK – enough schooling for now!!  I hope that helped though.  Remember, you can always email me if you have any questions…

Thanks for all the well-wishes – they are much appreciated.

Lots of Love!!

Cheryl

 

 

 

 

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