Tales from the booby hatch

As I awoke from my deep sleep the end of our group therapy session, the group leader screamed in my ear.

“Tammy is you ok?”

Before I had a chance to respond, she lifted me by the elbow and escorted me back to my room.

“Is there a nurse? We need a nurse.” I heard her call out in a mixture of English, Slavic, and Spanish

As I became more alert, I felt hands coming from all directions pushing me into a wheelchair and from there into the bed.

What did you take? What did you take? Did you take any medications? Did you try to hurt yourself?

I tried to explain. I couldn’t get the words out.

“Trazadone, last night, couldn’t sleep, extra, extra was prescribed.

“Where did you get it.” shouted someone. “Where did you find the Trazedone?”

Find it? I thought to myself. I was given it. I didn’t find anything. The “extra” was prescribed by my doctor. I guess extra was not the right word but it was too late. I had said extra and the implications of that word were far reaching in a place like this. I tried to explain over the barrage of inquires but it was to no avail. They rummaged through my meager possessions like a renegade cop with a search warrant.

I tried to protest.

“What are you looking for?” I tried to ask over the panicked voices in the room. It had yet occurred to me what was really going on.”

“This is what we have to do ma’am.” This came from a guy in scrubs who looked young enough to be my son.

I recoiled at the idea of being called ma’am. It made me seem even older then I was and worse, there was an aloofness in his tone that made him and everyone around me appear more like guards from the Department of Corrections, then medical staff. They actually took the plant my nana sent me and started to look through the leaves. If they were looking for contraband I thought it was a stretch that my 82 year old grandmother had smuggled anything into a locked psych ward. As the search continued, all of my possessions which consisted of some clothes, books and a plastic container of pretzels were strewn out all over the bed and window sill. Then I noticed an aid thumbing through my diary.

I protested. She insisted it was necessary. Really there was not much to read but still it felt like an invasion. I felt violated and helpless to do anything about it. I saw her eye linger on one page and it made me feel crazy. I could sense her vulgar curiosity to know what makes us mental patients tick.

She came in later to apologize but by then it was too late, the damage had been done. I could feel flair of anger make its way to the surface followed by pity, pity for this low level hospital worker. I could see in that one moment how her own life was so lacking of importance that the only place she was on top was next to a mental patient. I let it go.

There is a line that separates those in the “booby hatch” from the rest of the world, but for those who are curious enough, they better watch out or they may find that they crossed the line and don’t even know that they’ve been here.

Chapter 1

I knew I was going to leave. I knew and yet I wanted to stay more than anything. I wanted things to change. I wanted things to get better and yet I was certain that they would not, thus I was sure I would ultimately leave. Still when I found that house for sale it was too perfect, too perfect for our family. Since the last of the triplets was potty trained, the six of us were always waiting to use the bathroom. I had taken to the habit of going last with the hope that I would not be disturbed. I also seized this opportunity to bring a book in with the hopes of a few private moments to read. Often I only got through a paragraph, maybe two but those moments were often the only peace I had all day.

The Kidney

Laura was still recovering from the kidney transplant. Really we all were. The kids had only known their mother as sick, first on home dialysis, later having a kidney transplant. We had been in a sort of crisis mode for so long that in many ways we often didn’t recognize a real crisis when it came. When her kidneys began to fail we didn’t have many options. Her sister agreed begrudgingly to get tested to donate her kidney but as our luck would have it, her sister tested for having the same genetic disease (Polycystic Kidney Disease or PKD) thus she couldn’t donate her kidney. Her mother told us she was just not the kind of person to give someone her kidney. She told Laura that even if she could donate her kidney, she thought she should save it for Laura’s sister Liz (14 years younger than Laura) in case she ever needed it. Of course by then she would be almost 80 years old, and unsuitable as a donor). Her words stung. How could she say such a thing? It really only confirmed what we already knew to be true about her. She was a self centered narcissist. Since Laura’s mother and her sister are her only first degree relatives, it left us with few options. In the 1950’s , before Laura was born, her paternal grandfather had died of PKD. There was no treatment. Dialysis did not exist. Transplantation was decades away. He died a slow death, in a wheel chair in the end, with this mystery disease. I don’t think that they were aware at that point that it was his kidney that was failing. In the 1980’s when Laura’s father became ill, the technology was much more advanced. He had a transplant in 1988 from a cadaver. The match was never quite right, but he lived 8 years longer than he would have without it, and he was thrilled that he had those extra years.

Laura started peritoneal dialysis at home. This type of dialysis is an alternative to Hemo-dialysis which requires that the patient go to a center 3-5 times a week to have their blood cleansed. Peritoneal dialysis involves putting a glucose solution into the peritoneal cavity to take out the impurities. As it was explained to us; think of a bowl of strawberries, add table sugar. Within minutes the strawberries start to exude liquid. The sugar acts as a diuretic. Peritoneal Dialysis requires that a shunt be surgically implanted. It was supposed to be a “minor procedure”. Unfortunately, it fell out the first night. The doctors said this was “unheard of” and she must have done something wrong. It turned out that the person who put it in “forgot” to suture it in. That set us back several weeks. The original wound had to completely heal before a new one went in. By the time the other shunt was put in, Laura’s health had deteriorated to the point that she had become toxic. Amazingly, she went to work the day after the shunt was put in. She refused to acknowledge or allow the disease to infringe upon her life. It might have been easier for her if she had. At the time I thought she was very brave. I have since realized that denial had a large part to play at this point. While this was going on, we were having 50 cases of dialysis solution every other week, delivered to our bedroom. It was depressing. She would hook herself up to the machine for 12 hours and then go to work take care of the kids and go back on the machine. I already hated sharing a room with her. She snored so loud that it all but killed what little love I still had for her. Now we were both sharing a room with her dialysis machine and often alarms would go off in the middle of the night. Although she never complained, there was nothing fun about this. If an alarm went off, she would have to disconnect and reconnect making sure everything was sterile. The risks were great. If anything was compromised, she could get a terrible infection. In fact one time she actually did. She had a fever of 104 and was doubled over in pain from peritonitis.

Additionally the diet she was on was so restrictive that food had lost all its joy. Protein, salt and a list of vegetables and fruits were all off limits. As I was the cook in the house, I put on a brave face and met her dietary challenges with creative dishes and foods heavy in fat.

Both of us continued to work, I part time, Laura full time. She worked as a social worker for the Yale Child Study Center. She worked mostly in the field meaning she went to the homes of her clients. Her clients lived in the most impoverished neighborhoods and often the most dangerous. She came home one night and told me she hid with her client under the kitchen table while a gun fight ensued just outside the kitchen door. Laura was not at all fazed by the event. In fact she was suspiciously fearless. Later I would regard this same attitude as reckless. Back then, with a failing kidney and 4 small children, I thought she was brave.

We made a decision to actively look for a donor. A kidney from a live donor had a better prognosis for a transplant than a cadaver. Despite her father’s successful transplant which allowed him to live 8 productive years with the transplanted cadaver kidney., he ultimately died of heart damage from the anti rejection medication. He died, as optimistically as Laura was, waiting for another kidney and a heart as well. He was willing to try any new treatment or experiment that might help him, or help others in the future.

We told everyone we knew that we were looking for a kidney. We educated ourselves and everyone we knew on matching antigens (which, it turned out were no longer important) blood types and the rewards of being a living donor. We were not going to focus on the risks because we didn’t have any other options.

It was a hard sell. We were essentially asking someone in excellent health to undergo surgery and 6 weeks of recovery. The risks to the donor were low(less than 1% mortality rate) and the risks to the recipient were high (a success rate of around 80%). We had to appeal to people’s altruistic nature, if they had one. They call these kinds of donors Living Unrelated Donors because they typically have little of no relationship to the recipient and are donating out of sense of humanity.

We were not above exploiting our triplets to attract the attention of a prospective donor. Like the sad homeless puppy that they try to find a home for on the 6:00pm news, we gnashed our teeth and shook our heads in desperation as we told the story of Laura’s kidney failure and the poor small children with a sick mother. Although we knew Laura could stay on dialysis indefinitely, we would evoke the memory of Laura’s father and the legacy that he left the family as if Laura’s own death were imminent.

About three months after Laura started dialysis, we found a donor. It was the kind of thing that you could never foresee no matter how optimistic you are. I met someone at a behavioral therapy class I was taking and she approached me about getting together with her and her partner. The first time we got together we all hit it off. We mentioned our search for a donor. We were shocked when Carrie, my friends’ partner, told us right then and there that she wanted to be the donor. The next day they called us and confirmed that Carrie was indeed interested in being a donor. She and Laura were the same blood type (O+, which is the universal donor) and she had no known diseases that would eliminate her from donating.

Carrie was very proactive. She contacted the transplant team herself and arranged to go through the exhaustive testing process. She even called Laura every day to encourage her to take care of whatever preliminary testing she had to do pre transplant. At every turn was the possibility that Carey would be eliminated. After many weeks and many tests, Carrie was finally approved. On her last visit with the transplant team, they had one final discussion with Carey and her partner Kelly. The Transplant Team there made it clear that they felt Carrie was taking an unnecessary risk not only for herself but for her whole family. The transplant team talked Carey out of donating her kidney. The Physician stated that she herself would never give one of her organs to an unrelated stranger. She further stated that there was the risk that Carrie might die on the operating table, and would need to prepare for this. We later learned that this particular Hospital had an ideological issue with living unrelated donation in general.

We were devastated when we learned of Carrie’s decision not

to proceed. They were distant, aloof. We asked why, what

happened. They reluctantly finally told us that based on what

the team had told them, the operation was too risky. (In fact

the figures for that hospital were somewhere around 0.30%, far

less than a 1% mortality rate).

How could we argue that logic? It was a rare person who would put themselves in harm’s way for a stranger. It would be unethical and highly immoral to pressure someone to donate an organ. We told them that we understood and appreciated all they had gone through on behalf of our family.

It was then that hopelessness took its grip on Laura. For the first time, she became despondent and spent her days ruminating about how things could have taken such a terrible turn.

Meanwhile I discovered from Kelly, the donor’s partner, that the transplant team openly discouraged Unrelated Donors and in fact had never encountered such a case. As the reality of what happened took shape in our minds, if became evident we could no longer have the transplant with this team of doctors.
We felt thoroughly betrayed by them thus we went to another hospital 45 minutes away with the hope of starting over.

The new transplant team proved to be a breath of fresh air. They were well established in the transplant world and felt very comfortable dealing with a Living Unrelated Donor, should we be so lucky to find another. We left our fist appointment with renewed optimism and it was then that it occurred to me that Carrie and Kelly might have a similar experience if they were to meet the new team.

I called Carrie. She told me she was devastated that she could not donate her kidney. She felt terrible for Laura. She felt guilty for backing out. I told her that she owed it to herself to meet the new transplant team, to give herself a chance to hear them out. Whatever her decision, we would respect it.

Two weeks later we met with the new transplant team and Carrie made the decision to proceed with the transplant. I hadn’t told Laura because I knew she would not be able to bear another disappointment. So, I kept it under wraps.

We waited until I got home and Carrie called Laura with the good news. The weeks flew by quickly then. The transplant was scheduled for the New Year and it wasn’t even Thanksgiving yet.

It was during this time that Laura and Carrie became real friends. We socialized with Carrie and Kelly regularly and the 4 of us knew we were a part of something bigger than any one of us.

Laura had her transplant in mid January. We arrived at the hospital early in the morning and she didn’t get out of the recovery room until after 9:00pm. Carey seemed subdued and in some pain while Laura seemed exceptionally alert and quite happy. She was laughing and chatting with all the staff. I suppose what I was witnessing was relief. Laura had been living under an umbrella of fear. She had felt sick for so long and now the possibility of good health had become a reality. The threat of rejection still hovered over us and it would still be a few weeks before we could exhale a sigh of relief.

I drove the 45 minutes every day to visit Laura in the hospital. Sometimes I would bring the kids. We had thought that Laura would be home by our oldest son’s birthday, but it was not to be. So we celebrated our son’s 7th birthday in the hospital lounge.

Planning the birthday gave Laura something to focus on. The nurses on the Transplant Floor helped her to decorate the lounge with streamers and balloons. Laura managed to order a cake from the Dietary Department, and I brought the presents. Several of the other transplant patients on the floor came as well. It seemed to really lift their spirits to celebrate a child’s birthday. It was an event that brought them out of their own situation for a brief moment.

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