Saturday the 2nd was like any other day once you are dx w/ HD. No plans of a marathon race or even cleaning the whole house, let alone an entire room, one knows that's not even an option.. The entire day I was off & on the "throne" w/ what are called clay floaters (hope that's not too graphic just needs to be said). Plus I felt nauseated all day long, I took the prescribed amount of Zofran and each dose only lasted 1/2 hour, one dose can usually take nausea away for the day. I had Tom take me to a local Hospital, got into the ER found out I had liver inflammation. Painful & sickening. The events at this facility were minor but still I will mention them. A Foley cath was inserted, because the dr wanted to hydrate me, so an accurate I&O (intake/output) was vital. Nurse inserted the cath into my va jay jay, yes I said VJJ, I knew it felt wrong mentioned it and was told to relax, 6 hours later I awoke with a still empty bag & a full bladder. The still inflated balloon was found half protruding from my privates & the situation was corrected by the night nurse. (always eventful).
Next AM I contacted the heart doc in Philly, transportation was arranged and I was admitted to CCU. A Right hearted cath was done the next day, and the swan was left in place, I was then placed on milrinone that ups my standing to 1B w/ the UNOS procurement center. Seems my heart is worsening as I was feeling slow & steady. I never want to cry wolf for fear of not being believed at another time, which plays havoc with me daily.
I am now home and I must wear a pump, with continuous infusion of this deadly medication that helps temporarily but can shorten your life significantly, my mind wonders how much shorter can my future get?? The home health nurse was here yesterday & I will change my own bag today, she will return on Monday for labwork, cross check my PT INR machine against the actual lab values, change my dressing and get a few questions we came up with Sat answered by my Doc.
I can no longer take a long hot shower like I used to. I find that disturbing, we are thinking creatively for ways to work around this. I can't walk away from the pack ever, it is like carrying a purse 24/7.
I am emotionally drained. Scared to death & feel more vulnerable now than ever before, imagine the very medicine meant to keep you alive while awaiting a heart can actually weaken an already weakened heart. Scared barely scratches the surface, but I put on a good face for my husband, somehow that has not been working out as in the past, break through tears flow like a light summer shower.
He holds me close & then the world feels right again if only for those few moments. I live for those moments...
I ran into Nurse Hatchet at the hosp, requested not to have her again, I had to spend 12 hours with a woman that would share no small talk & her reputation was known by other departments, she transported me the day of the cath. I could see the sneers & eye rolls of the cath lab staff which opened the door for me to confirm my findings.
That night my fav former Peace Corp nurse was in charge of me and the next days schedule, I got a great replacement the next AM & will most likely not get that nurse again unless it is absolutely necessary. BTW this nurse is well skilled but lacks social skills & compassion (IMO).
The last paragraph was a diversion tactic on my part to help me rid myself of the minor trauma that might have originated from the milrinone but was delivered by a person that did not even tell me she was hanging it. OK I'm still mad her... diversion or no diversion the lady needs to be human..
So here I am.. happy to be home, sad I can't shower, sad I have this weight around my neck, figuratively & literally.. glad to have ppl to share it with that understand..& hopeful that each day is full of wonder (as my buddy Annette & I seek daily).
I feel this entry lacks a little of my personality, I am struggling to find that comfort zone, here's hoping it's around the corner or sitting right in front of me..