** Update **

Since my arrival at the ED where I was admitted last Wednesday after I had my 4th round of kidney stent surgery 3 weeks ago, right after my health began declining about 3-4 weeks ago. Right after we got back from Boston, I noticed some issues where my kidneys weren't draining properly and due to the amount of pericardial fluid that had built up again around my heart, I was no longer able to eat any solid foods or even liquid. They finally tapped me and removed over 740 millimeters of fluid that had been trapped in there for at least 3.5 years. What an instant relief now that I can actually sit up and take a deep breath for a change. I'm anxious to see how my quality of life techniques will work together to cool it down a bit.

Since then, I have experienced shortness of breath due to the build up from hydronyphrosis and they also managed to drain 740 millimeters not 570 liters of fluid from my heart which was over 5x the normal amount.

The 2nd procedure was super a relief as well and is now how the kidney is being drained into an external bag in my back to assist with the draining of my right kidney is my new procedure to keep my kidneys working.

In the last several days they've managed to control my pain through palliative care with just the amount of pain control  needed plus all the other stuff like management of side effects for the pain pill, etc. gosh  there is must more to know when some one is living this ill, yet still  managing quality of life. Palliative care and Hospice Care are availability to you so please reach out if you need need to live with assistance. It's incredible life changing.

So our plan is to pack up the cars, the dogs, the humans and as many instruments as possible and we're heading back east for a cold, dark, long winters nap with family and friends. One way or another I'll be close by the people I love and those who care about me too. Ain't life grand? I get to choose how I want to live my life, with who I want to where I wanna live it.