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