Tuesday, January 31, 2012


I went to the gift shop with Beth, thinking I would get some balloons to brighten up his room. They didn't have any. But now, as we speak, Carlos is getting a balloon of another sort.

The night was pretty uneventful. This morning the 'numbers' weren't improving - stuff like cardiac output, etc. So they increased the dose of Primacor. He got up and had breakfast, sat up for a bit then started to get pretty tired. He went back to bed and slept for a bit. The numbers continued to not improve so they increased the dose again and drew blood from his Swan-Ganz catheter to see the amount of oxygen getting to his heart.

Just a bit ago, one of the cardiologists came in and said that the test results were not good....Carlos is not getting enough oxygen to his heart so they want to move to mechanical means of increasing the effectiveness of pumping. So as we speak, they are putting in a intra-aortic balloon pump. He will go to the ICU when he's done. More information later...

Monday, January 30, 2012

Status 1b

We are definitely moving into new territory.  They moved Carlos' status to 1b today since he was started on Primacor.  They are hoping to only have him on one IV medication but if they don't get good results then they will move to a second one, which will necessitate being moved to a different floor ( icu?).  They are going to give him until tomorrow before they decide.  This would also mean his transplant status would be changed to 1a, which is top of the list.  If one medicine works then he would get to go home with a PICC line and a continuous infusion.  If they have to use two medicines, then he will not be allowed to go home.  At all.  We are really hoping to only need one at this point.

They just started a Lasix drip.  He's refused the bladder catheter for now.  I told him I'm not getting up all night to hand him a urinal so he better keep it close by.

The lady who does the pacemaker checks is here now interrogating his pacemaker.  She said the last time she checked it in November and there were 92 episodes of non-sustained ventricular tachycardia in a two month period. From 11/14 until now, 216 episodes. Nice to know :p

Post Cath

Carlos had the cath this morning and as we suspected, he was admitted for further treatment.  I haven't talked to the doctor but he told Carlos that his pulmonary pressures had worsened and that he wanted to try intravenous medication to bring them down.  I guess he said if that didn't work they would try another medicine.  I don't know what meds but the nurse will tell me when she gets the orders.

They inserted a Swan-Ganz catheter to track his pulmonary pressures while they are playing around with these medicines.  So what's the first thing I do?  Start googling...lol.  I know what the catheter is but have no experience with them at all so I wanted to know what normal pulmonary pressures are so I can look at his monitor and see what's up :)

His pressures are only mildly elevated at rest (meaning right now while he is sleeping) .  When he stood up to get on the scale earlier and to pee, they went way high and set off alarms all over the place.  Nice.

He's in good spirits though for now.  I did prepare the kids last night that he may be admitted.  Libby always gets the most upset.  I thought they could visit tonight but unfortunately, they have a restriction of 12 and under.  So we will plan to skype with them tonight.  Thank god for technology!

Sunday, January 29, 2012

Twas the Night Before...

It's the day before the heart cath. Carlos has been doing not too bad these last couple days. He's keeping the fluid off, not coughing as much, and slightly more energy. So maybe we will be able to keep him out of the hospital tomorrow! I'm definitely preparing for the worst but am optimistically cautious. Oh wait, cautiously optimistic :). Will up-to-date everyone tomorrow

Thursday, January 26, 2012

Mayo Appointment 1/25/12

We met with a new cardiologist at the Mayo yesterday.  There's definitely something to be said for continuity of care!  I totally understand why my patients want to mainly see one provider.  I think it's a little more important though, in this situation.  Having seen two new cardiologists in the past two weeks instead of Dr Steidley has been a bit frustrating.  I feel like he has been able to watch Carlos change over the past couple months.  It's easier to see the decline when you know what he looked like last year, 3 months ago, and now.  People are often fooled by Carlos' appearance.  He just has never looked as sick as he actually is.  But I know.  I know what he looked like 10 years ago, last year, last September, and 3 days ago.  I can tell when he feels worse.  So it's definitely frustrating when I feel like these new doctors aren't listening to me.  They ask Carlos how he feels and Carlos is pretty understated.  "I'm ok".  That's the typical response.  But because he can sleep on two pillows and doesn't cough at night (instead of the horrible cough he has all day long, the coughing when he tries to eat, the coughing when talking - new symptom), he's stable enough to not rush into anything.  'But call us if he gets worse'.  Ughggh!  I'm telling you he is worse.  He even told them he is definitely more tired, and the coughing is very obnoxious.

Anywho.  He has a right heart cath Monday morning.  I'm about 95% sure they will find he has worsened.  Specifically the pulmonary hypertension that's a by product of the severe heart failure.  While I don't have a huge desire to see him moving to the next step (probably IV medication) as that is not without concerns, I don't want him to get to weak to be able to undergo the transplant nor do I want damage to occur to his lungs.  I believe that he will be admitted on Monday to start IV medication.  But we shall see.

Friday, January 20, 2012

Same Old Same Old

Carlos had an appointment on Wednesday to follow up from the visit the week before.  He has said that he is coughing less but otherwise continues to be feeling about the same.

However, the morning of the appointment he experienced some shortness of breath brushing his teeth.  I told him that was pretty pitiful!  :)  We did share this information at his appointment.  We were meeting a new cardiologist with less than stellar bedside manner.  He initially was very much blowing off my concerns and at one moment was a bit condescending.  I was pissed.  But I restrained myself, everyone would have been so proud of me :p

So I asked about his next appointment and when we would be repeating the right heart cath.  he looked at Carlos' records and the previous caths, and all of sudden he changed his tune pretty quickly.  He wanted Carlos back in the office next week, heart cath by the end of the month, and we are to call if 'we even think about the Mayo clinic'.

This sort of treatment has been a recurring theme throughout Carlos' health history.  What he looks like just doesn't match what the testing shows.  I get so frustrated sometimes.  I feel like saying 'I promise I know him better than you do, so listen to me!'.

Wednesday, January 11, 2012

Post Mayo Clinic Appointment

Carlos had a doctor's appointment at the Mayo Clinic today.  I have been concerned because Carlos really seems to have declined again in the last couple weeks. I was definitely looking forward to speaking with the doctor and addressing these concerns.  He's been increasingly lethargic, coughing more, and complaining of nausea more often.  All this despite his weight remaining fairly steady.  He had picked up about 7 pounds in a 2-3 day span but has gotten half of it back off.  Yet the symptoms continue.  The cough is horrible.  It sounds like he is gonna bring up a lung any minute.  I don't think Carlos realizes he does this but he is always hanging his head....like he is too tired to keep his head up?  He's almost always cold, which is understandable with his poor circulation.

The doctor basically described Carlos' condition like a traffic light.  He's in the yellow right now and we need to be very cautious and watch him closely.  So the doc dropped his Coreg again, down to 6.25 twice a day in the hopes that maybe his blood pressure will increase and perhaps help with his symptoms.  His blood pressure (after morning meds) was 84/62.  That's typical for him.  He's been taking Lasix twice a day since picking up that 7 pounds so the doc wants him to continue that.  Otherwise, no other changes.  If he is the same or worse by his follow-up appointment next week then they will schedule him for a right-sided heart cath with possible admission for IV medications.  Carlos having a very common blood type and being a bigger man, he will likely have to wait quite awhile for a heart.

It's frustrating for both of us to have to live like this.  I frequently feel like a single parent.  He is frustrated by the lack of energy to do anything.  I think we are both looking forward to a heart transplant.  It took time for us to adjust to the enormity of change that entails but we also have realized how likely it is, that he will feel better and become more active.  Now that we are starting to see just how bad this may get - we are anxious to get on the road to recovery.  I'm still a little anxious about the thought of transplant - it's such a major ordeal in itself!

I worry about him getting too weak to tolerate a transplant, which would get him off the list :(  But that is the point of things like mechanical devices and IV meds.  Those things can keep him going longer.

He may finally be therapuetic on his coumadin now - his INR was 2.5 yesterday (with the goal being 2-3).  They will re-check it again next week but it looks like 7.5mg a day will do him well.

So I'm the reason Carlos has managed to stay out of the hospital.  The doc said that if he had been anyone else he would already be admitted but because he is married to me (someone with some medical knowledge and also very observant) he was ok with trying to keep him out of the hospital.  But we are to call if the slightest thing happens....starts getting shortness of breath at rest, stops peeing or peeing very little, etc.  The doc says these are things that would change the picture very quickly - he would be brought in and admitted for heart vath.  So Carlos (and he will read this) had better be pretty damned thankful :D

Thursday, January 5, 2012

He's Therapuetic!

Carlos' INR level is now therapuetic!  Woohoo....yeah, ok, whatever.  Not exciting I know but good that we got him on the right dose of coumadin now.

January 8th is coming fast....3 days until he is active on the transplant list.  I'm feeling very nervous and apprehensive.  Change is always a difficult process.  I find that the older I get the less I like to deal with change.

Wednesday, January 4, 2012

Coumadin Levels - Up and Up

Still going up on the coumadin dosing....I did tell them he tends to need a lot.  He's taking 7.5mg now every day.

Sleep Machine

So after waiting on pins and needles to find out if we could get Carlos' sleep machine before the deductible rolled over - we got it!  It was down to the last minute but the home health equipment place came out last Friday and got him all set up.  Apparently he only has to wear to 4 hours a night at a minimum.  I wasn't available (was soaking in the tub) when they came so couldn't ask why that was.  He has been using it but does take it off in the wee hours of the morning.  He says he feels a little more awake in the morning since using it but whether that's related to his imagination or truly an effect from the machine, remains to be seen.