Let's Catch Up

Since the last post, Carlos continues to have INR struggles.  Monday they re-checked his blood and it was 5!  They had him hold the coumadin the last couple nights and today it was 3.4.  So tomorrow he goes in for an appointment instead of Friday.  Eva, the coordinator, had a lot of questions about heart failure symptoms.  They are concerned that there could be worsening heart failure which I guess can cause erratic INRs.  So they moved his Friday appointment up to tomorrow.  He's worried that he could be hospitalized - I told him that more than likely they would need to just tweak his meds and no hospitalization would be necessary for that.  Then half an hour later, he starts coughing.  MF!!!  He needs to behave.  I'm not sure my sanity could take another hospitalization unless it's for transplant.

We found out that there are two things standing in the way of being re-activated on the list.
     1.  He needs a repeat colonoscopy - they are saying to do that mid-April.  Unfortunately, this requires a hospital stay of 3-4 days.  He can't have outpatient because of the whole coagulation issue.  They need him to have an INR less than 2 for the colonoscopy.  Then they will have to get it back up afterwards.
     2.  He has to walk a certain distance (1100 feet) on the treadmill in 6 minutes.

We ended up getting away this past weekend to Sierra Vista, AZ.  We made a trip to Tombstone on Saturday afternoon and it was great until Carlos became very fatigued and short of breath.  It was disappointing for me as I wanted to do a little more shopping.  But just as well - I spent too much money as it was :p  Sunday we stopped at Karchtner Caverns on the way home.  Carlos actually completed 2/3 of the tour of the caverns before needing to stop.  I somehow had a blond moment and forgot that it would be a 1/2 mile of up and down with something like 13% gradient.  WTH was I thinking!!!!

He started cardiac rehab today and did very well.  He did the treadmill, some sort of biometric bike, the reclining bike, and some upper body weights.  He'll be attending that program three times a week - I was very proud of him and felt a little teary-eyed at how far he has come!!!!

The Story Continues

Where were we...

The remainder of 2010 was ok - it took a bit longer to settle back into complacency but we did.  We did make the switch to a cardiology practice that took the Mayo Clinic recommendations a bit more serious.  They placed Carlos in a study for Bi-Ventricular Pacemakers.  He had this fancy pacemaker put in around September of last year.  We were told that he had a third of a chance at great improvement, a third of a chance for small improvement, and a third of a chance that he would see no improvement at all.  So we went for it.  We've been very happy with Tri-City Cardiology and Dr Marc Berkowitz.

This year, up until about the beginning of October, was uneventful.  At that time, I noticed that Carlos appeared pretty lethargic.  He would have good days and bad days prior to this, but it seemed to become a constant string of bad days.  He began sleeping approximately 15-16 hours a day - not all at once, but lots of napping throughout the day.

On Halloween night - which figures, as it's my second favorite holiday and we had plans to watch scary movies all night and eat junk food :p, Carlos started to experience mild chest pain early in the evening.  I had him lie down while I checked his blood pressure.  After about ten minutes, when the pain wasn't going away, I told him I was taking him to the ER.  He was admitted and the next morning they told us they thought he had a  myocardial infarction (MI) or heart attack.  We were very surprised - an MI hadn't really crossed my mind - even with the chest pain.  Both his heart cath in 2002 and 2010 showed no coronary artery disease (CAD)!

He was transferred to another hospital so his cardiologist could provide care and do another heart cath.  Again, no CAD.  That was the good news.  So no heart attack.  But the bad news was that Carlos' heart function was worse and worse than it had been prior to the upgraded pacemaker :p  It was a tough day that day.  I'll never forget sitting in the waiting room during the heart cath (I get very nervous when he has these down so my mom and a friend, Heidi, were keeping me company) and Dr Berkowitz coming to tell me that it was bad and we needed to get the Mayo Clinic involved again.  My heart dropped into my shoes :p

That afternoon I was on the phone with the Mayo clinic and they were able to get him in the following week for a consult with the same CHF specialist on the transplant team we had met the year before.  After meeting with Dr Steidley the following week, it was decided to re-evaluate Carlos' condition and need for transplantation.  Yea, more waiting rooms.  Fun.  More poking and prodding for him.  Woo. Hoo.  Carlos was rapidly developing a distaste for hospitals but I told him to suck it up and get over it.  He would do whatever was necessary to stay with us.

Welcome - the background

In 2002, with only 2 1/2 weeks of nursing school left, my husband was admitted into the hospital and diagnosed with dilated cardiomyopathy (DCM).  Our world, not a comfortable one to begin with, came crashing down.  Who gets diagnosed with this and congestive heart failure (CHF) at the age of 33?  

We were living paycheck to paycheck.  Carlos, my husband, was working two jobs to support us while I finished nursing school.  I was all set to graduate in May of 2002 and had a emergency room job lined up for after graduation.  We had our son, Christian (then 7-years-old) and our older daughter, Daja (then 2-years-old).  

Carlos had been complaining on and off of abdominal pain and was experiencing a night-time cough for a couple months.  We finally went in to see a family doctor, which resulted in the admission for CHF.  He had a blood clot in one of the chambers in his heart from the poor heart function as well.  He spent 8 days in the hospital, having tests done, medications started, etc.  He had a left-sided heart cath which showed an ejection fraction of 15-20%.  He left the hospital after 8 days weighing about 35 pounds less than he did when he went in!  Within a couple months he was able to go back to work but with lots of meds to take.

One year after the initial diagnosis, Carlos came in for another echocardiogram.  Unfortunately the news was not good.  The docs told us that there was no improvement in his heart function and likely wouldn't be at this point.  I remember that office visit very clearly because it was the first time we were told he would eventually need a heart transplant.  They couldn't tell us when - they said could be 6 months or it could be 6 years.  They wanted us to go to Medical University of South Carolina (MUSC), where there was a transplant program.  We lived in South Carolina at the time.  I can remember Carlos telling the doctor he wanted to live long enough to see the kids (we had Libby by this time - she was just a couple months old) graduate.  That brought tears to my eyes....I wanted him to live long enough to see them get married, see grandbabies, etc.  

We saw the people at MUSC periodically and followed up locally with the cardiologist.  And time went by.  Life eventually seemed normal again....