My love:
I hated that hospital from the moment we arrived. Be careful what you wish for because you just might get your wish. We wished and prayed to be admitted to this “World Class” transplant facility and our wishes were answered. We soon became sorry for both the wish and the prayer.
In the month that you were in “Hotel Hell”, not once did they change your hospital gown. Not once did they offer to bathe you. Eight days went by when you were unable to hold down any food or liquid and none of these world class doctors noticed. We saw housekeeping once and the only time your sheets were changed was when they brought you to physical therapy and I broke into the housekeeping closet to find fresh sheets. We had zero confidence that there would be any effort or commitment on their part to even put you on the transplant list, much less go to the trouble of finding you a donor with your very rare blood type and risking their high success percentage in transplants by attempting a transplant on you. You would be a percentage spoiler.
We discussed it a million times. We had to get out of there or they were going to kill you. You know how many facilities we contacted to see if we could get you admitted. I think now that the doctors at Hotel Hell were never truly candid with us nor were they eager to reveal to us just how fragile your situation had become. They would maintain you but make no effort to heal you. Then we found ourselves trapped in a chaos of foreign doctors who all looked like a 12-year-old Doogie Howser with language barriers. We knew that this was not the place that would do what needed to be done to send you home healthy and cured.
Then your kidneys failed. In the beginning it was dialysis for three hours three times weekly. That did not sound too bad under the circumstances because we were just going through the battery of tests needed for what now would be a double organ transplant. Typical of your luck, that sounded much easier than it would be for you. You were then and always have been the “Special Case”. This time, we certainly did not want that for you. We wanted you to be easy and ordinary, but then that never happened for you.
When they broke the news to us that your kidneys had failed and they you would begin dialysis and on that day, your personal agony began. They committed to the dialysis session at 1:00 PM. As we were soon to find out, Hotel Hell ran on “Jamaica time”. When they said 1:00 PM, they did not really mean 1:00 PM. It was more likely to be when they got around to it because after all, we had no place to go and they always knew where they could find us. They did not have the manners to mention the delay to us, however. For you and me, Type A’s who were both sticklers for promptness, it became a recurring incident that drove us both crazy. As you used to say, “If you are on time, you are already late”.
At midnight, all the lights in your room went on. A huge machine was wheeled in along with tanks and hoses. They brought dialysis to you and it was MIDNIGHT. This nonsense would go on until 3AM on the night your dialysis began. During the first treatment your blood pressure began to tank.
Every dialysis session was a horror. We learned very quickly that the monitors would take your blood pressure and give a revised reading every 15 minutes. We sat with our eyes glued to this display praying to God that when the numbers changed that they would reflect normal blood pressure results. That seldom happened and we began our next 15-minute wait praying for the next set of normal numbers. There were sessions when your blood pressure was so low that, despite the medications intended to reverse this condition, the dialysis machine had to be turned down so low that the 3 hours of treatment did nothing for you and the entire process was just a huge waste of time. You found yourself in a Catch 22 where you had to have dialysis, but your blood pressure was fighting the process. More doctors. More tests. More conversations in languages we struggled to understand. We had to get out of there!
Three hours three days per week became every other day. The Nephrologists came to visit us more and more. The head of the dialysis clinic same to speak with me and I immediately disliked her. She spoke in those low tones with her head bowed in practiced compassion. She told me what was going to happen as if she sat at the hand of God designing life and death along with Him. You would, she promised, be admitted into the kidney ICU, be put on 24/7 dialysis and die in that room. Just like that! That’s it. Fait accompli. End of the story. Over my dead body!
Our dislike for this woman multiplied exponentially! I never told you what she predicted and threatened for you because I did not want to add any more to your burden. Should I have told you? Was it wrong of me to withhold this from you? Regardless I was not going to wait with my hands folded in my lap waiting patiently while they put you on a shelf like groceries and waited for you to die. She had no right to take you away from me. She had no right to destroy US.
My distain for her message morphed into more distain for her personally. I am ashamed to say that I came up with a pejorative name for her which, albeit mean, was descriptive. I will not repeat it because it was not my proudest moment, but it became our private shortcut nickname for this woman. We were seeing far too much of her and you were not getting any better.
You continued to have to endure dialysis. The anticipation of every pending session was torment for both of us. We both experienced the anxiety and heard the appointment with the dialysis machines approaching us like horses hooves in our ears. Your blood pressure issues could not be resolved despite the medications they added to the process. The hours and hours that you spent flat on your back having your blood cycled repeatedly through those noisy machines were sometimes just a waste of time. They turned on the machines and your blood pressure dropped. They turned down the dialysis to safeguard your blood pressure and it was like marching in place and your blood was not being cleaned as it needed to be. We were again caught in a loop of what was supposed to happen and what was happening to you. Anxiety was quickly becoming fear. We needed a transplant and we needed it quickly. We both knew that it would never happen at Hotel Hell and we needed to find a way to get out of there.
I must admit, I was exhausted. We had never had to experience this level of fear and anxiety for this length of time. We saw no out or option and were emotionally frayed. Everyday I worried about you, talked to doctors, contacted other transplant facilities, talked with you and discussed possibilities. You, of course were concerned about one thing only and that was me. You reminded me to eat and try to sleep. You told me to go buy new jeans because these were falling off of me because I was shedding so much weight. For me, none of these were possible nor necessary because they would take me away from you.
Your dear friend who had been your college roommate and life long friend came to visit. When he arrived, he handed me the key to his hotel room and invited me to relax and get some sleep. You had dialysis that afternoon and he would gladly accompany you so that I could get some rest. I thanked him but protested and began to explain the tightrope you walked while in dialysis and that I needed to be there. You, of course, wanted me to get some rest and the deal we made was that every 15 minutes I would be sent your blood pressure numbers. Reluctantly I agreed to go to the hotel room only so that you could visit with your friend. I knew I would never sleep and that I would spend the three hours watching for my next text message every 15 minutes.
The first hour seemed to be non-productive. They fought your blood pressure and it was nonconstant. The whole thing just seemed off. You were nauseated and threw up from the medications. It was just all wrong. Every 15 minutes I received your blood pressure numbers.
Then my telephone rang. Our friend told me to come down to the dialysis lab and come quickly. I literally ran from the hotel to you and when I entered the treatment room your area was surrounded by 7 emergency room doctors. I looked at the Nephrologist and she was pale. Then I saw you and saw, for the first time in my life, fear in your eyes. Your body temperature had fallen dangerously low and they covered you with heated blankets to warm you. You were shaking so hard I could see your body moving off of the bed and your heart rate was 172. I pushed the doctors out of my way to get to your side. Your eyes were open wide and you were praying. I touched you so that you knew I was there but allowed you the moment to pray. Then I heard your prayer. You were talking to God, but you were not asking for healing for you. You were praying for me! You were asking God to take care of me because you believed at that moment that you were going to die. You thought that you were experiencing your last moments on earth, and you were praying and asking God to take care of me! This is the kind of man you were. Your thoughts during what you thought were your last moments on earth were to plead to God for me!
By the grace of God, you did not die that day. If you had, we would own Hotel Hell.
The next day, our Nephrology buddy came to your room and came as close as any doctor has ever come to apologizing and taking responsibility for almost killing a patient. It was her fault, she said, because she ordered the temperature of the blood too low. She was, in essence, sending cold blood into your body and decreased your body temperature dangerously low. Lucky for her and for Hotel Hell that you did not have a heart attack due to the increased heart rate.
We had to get out of there.
I was so blessed to be your wife. It was my honor.
I love you.
P