Posted on 01/11/2017
The Kidney’s Fine, Everything Else…Well
Talking to other kidney transplant recipients, some will say, ‘The kidney is doing great, everything else is falling apart.’
Let’s walk down memory lane to the present…so the Incompatible Kidney Transplant was May 19, 2009 at the Johns Hopkins Hospital in Baltimore, Maryland.
Two years later in 2011, during a follow up appointment, my father’s Urologist discovered something on his left native kidney. He went back to Johns Hopkins to have the nephrectomy procedure (kidney removal) done there. They removed his left native kidney. The test came back that it was cancerous.
Then in 2012, my father’s Urologist once again found something. She discovered he had prostate cancer. He opted to undergo radiation treatment at Howard University Hospital in Washington, DC. Before he could get started with the treatment, he had to have gold markers placed (on my birthday) to protect the kidney and make sure the treatment was going to the right place. Radiation was everyday, Monday through Friday. Treatment started a few weeks after the college semester was in and finished up just before graduation.
It was the middle of summer 2014, I looked and saw something on the bottom of my father’s toe. It ended up becoming a nasty ulcer on the bottom of his toe. At first things were going slow but then we went on a trip to Tampa, Florida –and he didn’t want to use the wheelchair we brought with us. When we returned back to DC, things were getting worse and worse. Plus, you could see the bone and it was infected. Finally his doctor at the DC VA Medical Center gave us six weeks to see progress or she was scheduling him for surgery. I put together a plan of action and support, plus I looked for some alternative assistance as well. I went to my father’s primary care doctor and asked for some help with wound care. He put in for visiting nurses. The wound care nurse and physical therapy therapist came to the house a few times a week. With the nurses coming to the house for wound care, using activated charcoal and silver, and weekly trips to the ulcer clinic at the DC VA Medical Center, we started to see improvements fairly quickly.
As the 2015 came in, due to bathroom issues, his Urologist recommended my father have another Transurethral Resection of the Prostate – TURP to help. I was not on board, I really, really did not want him to have this procedure done –the first one was not pleasant. He wanted to have it anyway and so he had it in February 2015 –thank goodness it was not on my birthday. The procedure went well but he was not moving around like his old self. He was having problems getting up and moving around. This was the first time I asked him to think about going to rehab before coming home. In my opinion, he needed extra time and physical therapy to get him up moving around. Of course that idea at that time was shot down, but the next time, we had no choice but rehab after West Nile Virus.
Then Tuesday, October 6th 2015 came. A roller coaster literally pulled up to the front door told my dad, sister and I to hop in –there is no other way to describe our West Nile Virus experience other than it was one heck of a ride. My father went for a routine follow up at the Eye clinic at the the DC VA Medical Center. He got sick in between appointments after pictures he was waiting to see the doctor. The nurse sent him over to the Emergency Room. They admitted him and the next day one of the doctors’ on the team said he has the West Nile Virus. He ended up in Medical Intensive Care Unit at the DC VA Medical Center. This is where I saw the doctor from the Renal Team, he pulled me aside and said, ‘IF your father survives this, it’s going to be a bump ride.’ And bumpy it was. After he said that, I called and reached out to all of my resources over at Hopkins to get my father transferred over there. That Fall, it seemed like everyone was critically ill and the hospitals were all taking turns being ‘closed’ (not taking patients). Hopkins was under Code Red plus there was a waiting list to get into MICU. Finally on the Thursday, October 22nd, Hopkins called! They finally had a bed in MICU. The week before, they had to put my father on life support –the ventilator. They arranged for special transport that supports vent patients. Yes, we foot the bill to get him transferred. I guess my main concern was to 1) Give my dad a fighting chance and 2) Save the kidney if at all possible. That evening, it took the transport a while to get to DC –they sent the wrong team, it didn’t matter how long it took to get to Baltimore, Hopkins had a room and were expecting him, we were going. We arrived at Hopkins few minutes before midnight. And the rest is history. Or so I thought.
After my dad came home from rehab, most of last year, my time was spent getting the ulcers on his heels to heal. He had the visiting nurses from MedStar and several other nursing agencies come to the house to provide – wound care, speech, PT and OT services. My father had been in the hospital a few times and the nursing agencies changed. When we couldn’t get a PT theraptist to come out in a timely matter. I said this must be a sign, let’s head to the gym. So he started in the gym, October 2016 at Walter Reed – Bethesda.
He was doing so well in PT and OT at Walter Reed – Bethesda. Late February, early March the ulcers on my dad’s heel were all healed up. He was walking and even starting to walk down stairs. His progress was incredible, everyone was amazed at how far he had come.
Then in late March, he was sick with some type of respiratory infection – coughing, sneezing, etc. His night caregiver mentioned what happened overnight. I knew immediately we had to get the Emergency Room at Walter Reed – Bethesda quickly. Of course, my father didn’t want to go but we had to get him checked out. In the Emergency Room, they wanted to admit my father into the hospital. They kept mentioning Cardiology and this is where it all began.
In April the heart stents were placed. In May, they amputated the right left first then five weeks later in June and took the left leg.
Things happened really, really fast this year.
The one thing that is different this year than in 2015 is that my dad is aware and able to understand and make decisions which is very helpful. In 2015, he was out. I guess his brain took him away to protect him. He doesn’t remember being on the ventilator, having the trach or feeding tube –thank goodness, it not pleasant –not something you want to remember. During the West Nile days, his account is, ‘He was in an accident in Suitland Maryland not far from where he was first stationed when he came to the DMV area. He says this couple took care of him and nursed him back to health. He didn’t know where my sister and I was during this time.’
We were right there by his side just like we were for mom.
Thanks for reading and walking down memory lane with me.