Tues I had an appt with the great Dr E, we traveled the mandatory 2 hour drive one-way in bottlenecked traffic to arrive at 8AM, I had vitals done, labs drawn, EKG, screened by the transplant nurse, then seen by the DR. He looked me over and after a couple of questions said you can send Tom home if you want, you are staying with us.
6 hours later I am in my room, yes 6 hours.. luckily it was the monthly meeting of heart transplant survivors & I was asked to sit in with the group, I gained 2 business cards, half of a turkey sandwich, some fresh fruit and water, the best choices from what most seemed like a dichotomy in a luncheon spread for heart patients. I also learned that many people gain (on average 9-11) years of what was once a normal life minutes after the transplant takes place. Each of them said you awake feeling like you did before you had your first indication of CHF/DCM, It was reassuring & gave me hope.. & filled my growling tummy.
The next day the heart cath was done. My PT INR was not at the right point, so I was given a heparin drip to help. I waited till 4 in the afternoon NPO, this visit was not going well.. I got down to the cath lab & the fluoroscopy machine that directs the threading of the catheter was on the fritz, so lying flat for all that time with no sedation was giving me more anxiety. They borrowed a machine from the OR, and off we went, 7 attempts at the neck were unsuccessful, one reason I head was maybe she has a clot. The rude & weary doctor finally decided to do the procedure in my groin. I was prepped & the lumen slipped in like butter.. YEAH!!
Back to my room, leg remains flat till the "wires" come out.. so it was bedpan city.. luckily I was not on diuretics, and had been NPO for hours before the testing.However the HIGH pulmonary pressures they got in the cath lab were soon replaced by more stable numbers in CCU. I was sad & glad at the same time, wishing I could be moved up on the transplant list but glad I would not have to live with a fanny pack & picc line this early in my wait for the heart. Thursday marks one month on that list, it seems like 6 from this end but it's only been a month.
While I was there it was determined that my morphine pump should come out, I was only too glad to get rid of it, I get 5mg per 24 hours but with chronic pancreatitis behind me and just an occ, bout of it, I am ready to let it go, surgery said yes, then pain management arrived and said we can't just pull this out suddenly I may need titration & support afterwards, it was determined that my home doc that put it in could be responsible for this action. I am lucky to have an appt on Fri. It was already scheduled so I will address it then, we can start the progressive decreasing of the meds, it's morphine/baclofen. Hope this goes smoothly.. nothing else is at this point..
Next my blood pressure. It's low. My blood pressure is VERY low. So low that you will not believe this but I'm down to 3.125mg of coreg (2x day) & 5 enalapril at bedtime. I can't help but wonder if they are trying to raise my blood pressure in an attempt to 1) help me feel better & give me a better quality of life in the time I do have remaining & 2) (at tad more optimistic) help me get a blood pressure so they can treat me with inotropes at a future date, during the bridge to transplant with LVAD being the stronger bridge after the inotropes stop working.
So for as much that seemed to happen last week, not much has happened. Time ticks away slowly when you are on a list like I am. Each minute seems like an hour. Keeping the faith is hard. Staying positive is a fake smile & a reply of thanks when you hear "but you look great".