Heart Failure to Heart Transplant: Hurry Up and Wait

I posted the following to my CaringBridge journal Nov 8, 2014:

Dr. Nishime came to see me this morning.

She examined me, discussed treatment options and for now we decided to discontinue the Lasix to see if maybe it is pulling too MUCH fluid out of me.

She said that people with diastolic heart failure like I have don't tolerate extremes well. We do best when our blood pressure, fluid level, and heart rate are all in a nice targeted zone.

I look good, so the fact that I'm feeling so bad needs investigating. The leading theories right now are:

1) slight dehydration/low blood volume from too much diuretic (testing by stopping the diuretic and upping my liquid intake today)

2) pulmonary hypertension (right heart cath test needed to confirm or rule out)

3) low heart flows because my heart muscle isn't relaxing enough (again right heart cath will tell us more).

So I need a right heart catheterization. They don't usually do them on the weekends except for emergencies. The cath lab is schedule is booked tight on Monday because the nurses will be going on strike on Tuesday and Wednesday and they are not allowed to do any procedures on those days unless they are an emergency.

Dr. Nishime was going to see if they can make an exception and have the right heart cath done for me tomorrow or possibly get me squeezed in on Monday. If not I will have to wait until Thursday to have one.

So today is a bit of a wait and see day.

Dr. Nishime is coordinating with the lead heart transplant nurse to figure out what I am still missing from my workup and then see if we can get any of it done today.

Dr. Nishime also offered to start me on IV dopamine just to see if that will be effective to relieve my symptoms before we do the right heart cath, but use of IV initropes like dopamine will possibly prevent me from participating in the drug trial, so we decided to wait to try them until after the right heart cath is completed and we know for sure if they are needed.

I need to contact the lead investigator of the drug trial Dr Pham and find out if a trial of dopamine that is discontinued would disqualify me from participating or not. I also need to figure out how to get him my medical records ASAP.