Rediscovering My Inner Bitch: One Womanýs Journey Through Being Diced, Spliced, and Transplanted

INTRODUCTION

She’s been gone so long I hardly knew where to look when I needed her. But there are some deep and ingrained abilities that never go away completely.

This is one of them. Some people choose to call it inner strength. Personally I think that’s just wrong. My inner bitch is an integral part of my personality who has been incognito for a while. It’s taken me a very long time to grow to accept her, but I intend to embrace her potential to the fullest, bring her to the max, and fair warning to anyone who tries get in the way. I need her now, and am not above schlepping her out of dry dock, sanding the rust off her ass and getting her back in the water.

Normally I would have said bottom right there, actually I did type it in, then overwrote it with butt first then finally ass, which is what it should have been in the first place. I consider that a fortuitous beginning.

Last week I found out I need a kidney transplant.

Initially this news threw me completely around the bend. Although I knew it was possible that somewhere down the road it might be a consideration, I never dreamed it was going to be a bullet between the eyes last Tuesday. Some things in life you live with for so long they become a part of you, which you no longer notice until they hurt, like your big toe. This was one of those things. Operative word there: was. I thought about it ten years ago when I was diagnosed with Polycystic Kidney Disease, but hardly ever since then. It had lost its reality to me until last Tuesday.

I thought it might be an interesting idea to document the process, whatever it turns out to be, from the perspective of my inner bitch. She has always had such a bold way with words: ever so much better with them than I. Her language is more direct and she certainly has bigger brassier balls. So with that in mind, allow me to introduce you to my inner bitch.

And now, to quote Sir Elton John, The bitch is back.

November 29, 2001

After 9 days of thinking about this it doesn’t petrify me quite as much as it did when I first heard. Of course I have yet to meet with the transplant team. I wonder if they’re all going to show up in pads and cups. Our first meeting will take place on Monday at the University of Massachusetts Medical Center. This is one of those monstrosities, built in the early 70s which has sprawled beyond its capacity to expand. In other words it is like every other major medical center in Massachusetts. Anyone who has ever tried to park at Mass General or the Brigham can relate.

The U Mass/Memorial Medical Center is the primary transplant site for central Massachusetts and my preliminary point of departure. I am supposed to arrive at 9 AM to meet with a nurse coordinator and I’m trying to make myself be as calm as possible for our first encounter. Attempting this is an exercise in futility. When I think about all that is to be discussed, it makes me feel a bit like a five-year-old on her first day of kindergarten, terrified and ready to wet her pants.

The way my head is pounding is making me wonder if I have actually hit new levels of high blood pressure. It wouldn’t surprise me one bit if I had.

I am hardly naive when it comes to dealing with doctors and the medical profession. I’ve had more experience with them than I want to think about. There have been many times we have approached each other as natural enemies; far more on that level than as friends. In one regard I’m lucky; my nephrologist (kidney specialist) is a friend. Bernie is a pal, a buddy and a confidante of sorts. I think she felt worse telling me about needing the transplant than I did hearing about it.

With this exception doctors will be considered to be adversarial until or unless deemed otherwise. Healthy skepticism is something that can save your life. It’s my intention to maintain a very healthy skepticism, question everything and take as little as possible for granted. Doing that can kill a person; I’ve seen it.

My older brother Dr. D, also a physician, has always maintained I was switched at birth. I don’t look like anyone on either side of the family, act like them or in any other way bear the slightest resemblance. Although he is quick to tell me he cannot donate a kidney to me as he had hepatitis in medical school, he still wants to be tissue typed, if for no other reason than to prove his theory. Through his eyes, I could be looking at a huge lawsuit. Am I thinking about decades old law suits? Not really.

It would appear I have inherited this little gem of a chromosomal mutation from my father. He passed his last breath test in 1960 following a massive myo-cardial infarction. There was no apparent reason for anyone to look at his kidneys as he had obviously died from a heart attack. Neither my brother nor my mother has PKD and the great and powerful they tell me it never skips a generation. To the best of my knowledge no one in my father’s family has been afflicted other than he and me, and he would have had to have it to pass it along. It stands to reason statistically since he was one of 7 siblings one or another of his sisters would have had this nasty gene and the disease, but apparently not.

It would be nice to know about any other cases in the family although the last time I spoke to any of them was several decades ago. My father has been dead for almost 42 years. Shortly after his death my mother, or his sisters, decided it was no longer compulsory for his widow or children to interact any more than necessary with the rest of his family.

My brother also reacted with great happiness when told I needed a kidney transplant. My first response was to think to myself and a happy fucking Thanksgiving to you too, but I kept my mouth shut, which in itself is out of character.

His rationale was the sooner you get it, the faster you’ll feel better. I have to admit this is all true, but did he ever consider how wretched I may feel before I actually do get a kidney? They don’t give them to people who are tap dancing down Fifth Avenue in the Macy’s Thanksgiving Day Parade. I’ve had 3 months of nasty and I’m tired. I’m cranky because I feel achy all the time, and if I may bitch a little more, I am sick of being sick. I’m worn-out by the antibiotics that don’t work, the steroids that make me look a lot like Quasimodo, and the saline IV’s that either aren’t quite enough to hydrate the old body or go too far and effectively blow out my ankles and make me look like I just limped out of a nursing home.

I’m disgusted with intractable infections, doctor’s disagreements and expandable lists of drugs and allergies. I’m just sick of the last 3 months, period. And now it’s going to either be dialysis or a transplant… yippee. Okay, that part of the bitching is done, for the moment. This is not to say it won’t be back in another incarnation at some future point, but for now, it is out of my system

December 2, 2001

Some mornings I think I was born pissed off. I had to see my mother yesterday, and lately I find that to be an exhausting affair. She is living in the Alzheimer’s wing of an assisted living facility. She likes her hotel, thinks it’s wonderful to have maid service, laundry service, and cooking done for her. The aides take excellent care of her and for the most part she enjoys her time. In all fairness, for $5 K+ a month, she should enjoy her time. She very much lives in the moment. Each one is a new experience no matter how repetitive.

More than anything I would like to hug her, cry on her shoulder, tell her how sad I am, but it wouldn’t register any more on her consciousness than if I picked up Harry or Sally, my Yorkies, and told them. When you talk to my mother you realize that Elvis has gone forever. It’s probably a purely selfish reaction on my part, but there is no one else you can really do that with, or to. That is what mothers are supposed to be for. Even when my mother was younger, she wasn’t an easy crowd but she was pretty much the only game in town.

In all honesty, I had always preferred to make her sister, my aunt Pauline, my confidante. Pauline now has the paranoid version of Parkinson’s and a 90 something year old husband to contend with. She doesn’t need my issues too. My mother is here in body, but that’s about all when it comes to her faculties. I refuse to cry on my daughter’s shoulders. She has enough to handle being a working mother without my problems. That isn’t me. I’ll just stay pissed off when I need to.

I left my mother after a visit of about an hour, which is more than I can take on most days, only to get snarled up in traffic with Christmas shoppers, the longest funeral on record and a traffic cop more enthralled with his coffee and donut than addressing intersectional issues. I’m not a patient person and after a morning with my mother I was at my limit.

My back felt like it had been beaten with a brick, I wanted to lie down and I needed to rest. Being very adept at swearing, the obscenities were flying out of my mouth in record time. I’m not sure I remember where I got to be so good at it; maybe it was in college. It could have been my short stint as a caseworker in Yonkers after I graduated. That experience certainly taught me a few of which I had been previously unaware. It must be the aggregate of all those years of quality profanity that’s polished it to a fine art form. Certainly teaching in a local high school for 10 years added to the repertoire.

By the time I got home, I was in full stomp mode. My son Greg had finally dragged his narrow ass out of bed at the crack of 1 PM which really irritated me. That morning’s traffic was the last thing I could deal with and him coming downstairs and growling at me because he had a roaring hangover didn’t help in the least. The entitled tone of his voice grated on what was left of my last nerve. Feeling my blood pressure soar and my head pound, I completely lost it. I screamed at him for everything he’d done wrong in the past 5 years. I carried on unmercifully. My hands were trembling and the pitch of my voice was rising by octaves. Worst of all: I couldn’t make myself stop.

The poor kid was in the wrong place at the wrong time and was the expedient target. Now don’t get me wrong, he has screwed up, plenty, but not enough to merit the sort of explosion he got. He earned every bit of his tirade, but not all at one time and with such ferocity.

December 5, 2001

Today we had the meeting with the transplant nurse coordinator. I brought my husband Bruce along for moral support. The nurse coordinator’s name was Jodi and she towered over me with a height advantage of at least 9 inches. Although outwardly calm, I was terrified of everything I had anticipated she would say. It was almost a pleasant relief to hear what she did have to say.

Walking into the renal transplant office, the thought crossed my mind that the room was too small and didn’t have the import it should have had to carry the name. It looked like every other exam room I had ever seen. If you blinked twice you would walk right by. Inside the room there were 3 chairs and we all sat. The room smelled like a hospital, that impartial, antiseptic aroma they use to cover the odor they don’t want you to smell.

Jodi wasn’t what I had expected either. Aside from her height advantage which I immediately found intimidating, I kept staring at her top lip. It was obvious she had had surgery to correct something, as she had the slightest lisp. It wasn’t long though, before all I did was look her in the eyes and listen, or respond. We went through the usual history and then Jodi did all the talking. She told me what to expect in very pragmatic terms and although much of it scared me. I was glad to hear the straight dope, no gentle or condescending little you’re going to be just peachy dear. What I got was just the facts ma’am, as Sgt. Friday would have said. I was very glad Bruce was there to hear them right along side me.

Basically she told me my best chance of a successful transplant would be if I got a kidney from a live, related donor. Failing that, a live unrelated donor of the same blood type, A positive or the universal donor type O negative would do the trick. There are several other points they use as matching criteria, but all of these issues can be addressed if I am lucky enough to find a willing volunteer.

If and when all else fails, I will go on the infamous waiting list and hope for a cadaveric kidney. She went on to explain the surgical procedures to me, and tell me that in all likelihood the surgeon will probably want to remove one or both of my native kidneys at some point or another as they are so large and painful. Typically polycystic kidneys contain a varying number of fluid filled and rupturing cysts. My cysts numbered in the thousands, from microscopic to tennis ball sized, with any number rupturing and bleeding at any given time.

I knew this was coming. Removal of the kidneys had been discussed so many times before by the other docs, it would be logical that if they were going to have at me, they should do the job right. It seemed like a good way to lose 10 pounds right away, not to mention getting my long lost waist back where it used to be. Pushing 125 pounds was not making me happy. Most of the extra weight was water and extraneous, swollen, bleeding, cystic kidney tissue. I couldn’t help thinking what a treat it would be not to have to buy jeans 3 sizes too large then lopping off two thirds of the hips, the butt and the legs to make them fit.

The next stop was the lab. Jodi gave me a handful of lab slips for blood work, including one for HIV. I went to the Umass lab and took a number. I was 93rd. They were on 70. The waiting area was standing room only. Bruce, having been smart enough to bring his own car, happily drove back to work.

I am not, the most patient of people, and when I realized there was only a single tech working, I picked up my lab slips and left. Looking at a minimum hour long delay and not having the energy or the resolve to sit and wait for someone to get around to me was beyond tolerance. Yes, it sounds selfish. But the way I chose to rationalize it, I was making time for whoever was 94t .

I drove over to Hahnemann Hospital, another adjunct of the Umass complex, about 3 miles away, and had the blood work drawn there. No wait, no delays, easy in, easy out. They did all the processing of labs in the same place, so it made no difference where the actual blood drawing was being done.

December 7, 2001

My granddaughter Abby is here today. Alyssa has her annual office Christmas party tonight as does her husband Eric. Too bad they’ll be in different states to partake of them. Lys works in Boston. She is the director of the career services department at the New England School of Law. She never cared for the practice of law, shark blood deficiency.

Eric works in Providence and is a general manager for Aramark Corp. Sometimes rank has its privilege, but not when you’re both a boss and you have to show up at the obligatory office party. So Abby gets to spend the night with us. I have to admit she is an enchanting baby. Always smiling, happy and absolutely adorable, Abby has Alyssa’s features and Eric’s coloring. If she had dark hair she would be a carbon copy of my late daughter Heather.

Heather died when she was five, and during her lifetime I spent more time in Pedi ICUs than anyone has a right to. This explains my healthy cynicism when it comes to doctors and hospitals. I’ve seen it all, the outstanding, the obnoxious and the grossly incompetent. It took a while to figure it out when I was young, but not everyone graduates in the top 10% of their class, and they are almost all employed somewhere. However, those were not the people I wanted taking care of my critically ill child.

What kills me is that I can no longer carry Abby for long, or take her up the stairs. She is too heavy, and I don’t have the strength to schlep her around. It’s going to be a long day.

Luckily Greg is home. He smashed up his car Monday night and it is in the body shop getting put back together, and I’ll be damned if I let him take my car and run all over the state. He’s stuck with mom and Abby today whether he likes it or not, or until he can sucker one of his buddies into picking him up.

Abby’s napping now, so I have a bit of time to catch up here and rest before we are back sitting on the floor watching Elmo’s World or Teletubbies. Personally I have never seen anything as vapid, but she loves it, and I can always read, so who am I to complain? Seems someone tapped into his or her perfect, infantile target audience.

December 15, 2001

I may have gotten lucky. Let me try to explain this without getting too confusing. A long time ago (I really wanted to say in a galaxy far, far away, and almost managed to resist the temptation) we had friends in town, Sharon and Ron Luftig. Their youngest daughter Gillian was Alyssa’s best friend when the girls were very young. Sharon and Ron just about saved my life when Heather was alive, standing in as parents for Alyssa when Bruce and I were at the hospital with Heather. Sharon was wonderful dragging me out of my funk after Heather died. I owe the entire family a tremendous debt of gratitude for a million things I can’t possibly repay.

Again, I owe them another. Sharon and Ron now live in outside of New Orleans, while Gillian and her younger brother Micah, and their respective spouses live up here in Massachusetts. Micah just received his Ph.D. in some obscure and arcane viral studies thing at Harvard and Gillian is completing her Ph.D. in sociology at Brandeis.

When Gillian heard about my kidney situation, she called her parents. Ron immediately emailed me to discuss the situation. He has type O negative blood and has offered me one of (in his words) the mad scientist’s, fat, juicy kidneys. He has already spoken to Jodi and is planning to fly up in March, get tissue typed and, if all goes according to plan, give me a kidney! But before any of this can happen he has to lose about 40 lbs. It seems they won’t consider him now because he is overweight. Who would have thought anyone could be so generous to a friend they hadn’t seen in 20 years?

Sharon and Ron are coming in to visit their kids this week and we’ll be meeting them for dinner next Saturday night in Boston, then they’ll be coming over with all of our collective kids on Christmas Eve.

This year we have decided to abandon the annual Chinese food Jew-down and go for filets and lobster. Since there will only be 12 or so of us, why not? Any excuse to chow down on filets and lobster works for me, and it’s amazing how few people refuse an invitation for such a meal. With Alyssa and Eric in attendance, I won’t have to worry about much cooking and clean up, so it shouldn’t be too difficult an evening. Normally I would have said the hell with it for lack of energy, but the thought of not having people around on Christmas Eve is beyond unbearable. It’s one of those nights when I have to be surrounded with friends and family and stay engaged to the point of exhaustion.

Yes, of course this sounds utterly absurd, but it is necessary no matter how draining it is. For the past 24 years this has become a ritual. Nothing has yet prevented this annual occurrence. Some things are virtually unendurable, and Christmas Eve without people is the hands down worst.

There were so many holidays spent at St. Vincent’s Hospital when Heather was alive. There were Thanksgivings, Independence Days, Mother’s and Father’s Days and Passovers but the most terrible was Christmas.

There were so many Christmas Eves when I saw Heather dragging her IV pole up and down the halls with tinsel draped on it or with ornaments taped to her earlobes by one of the ICU nurses.

Too many memories to have to deal with, and I for one still have enormous difficulty trying to reconcile the memory of that child and those days with the fact that she is no longer a living part of my life. Most days I can fake it and get about the business of life, and then there is Christmas Eve and its own unique and private misery.

Today was another day spent with my mother, at least in part. It’s always in part. Even when she’s with you, she’s not there. Every week it gets a little worse. She doesn’t remember anything from one minute to the next and I see her slipping by degrees each time we meet. I always try keeping a supply of her antidepressants available. If I ever find myself in that kind of situation, I might just be tempted to swallow 50 or 100 Risperdal and say good night, Gracie.

I would never allow myself to be like that. Of course this all presupposes I’d be aware of it. Who would want to be 88 with the mind of a 3-year-old? Living with end stage renal disease is a walk in the park compared to Alzheimer’s.

To lose your mind and mental abilities so absolutely is probably the single most dehumanizing affliction possible. I cannot imagine not being able to think, but then again, at that point I wouldn’t know the difference. Looks like a no win, no win situation no matter how you slice it.

December 25, 2001

I never did much like Christmas. Even when I was a kid it was a constant disappointment. Probably this is a cumulative experience of generations of little Jewish American kids when they saw Santa Claus. We always had Chanukah. If there was a more second-rate, half-assed holiday for a kid than Chanukah and to always get socks and pajamas when everyone else was getting bikes, Revlon dolls and puppies, I have yet to find it.

Since Heather died, Christmas has become even worse. To block the memories and melancholy we try to keep the house full of people Christmas Eve. Doing that this year has been a big mistake. The cysts in my kidneys have been rupturing and bleeding for almost a week now. Aside from the pain of having these things exploding right and left, the blood loss is beginning to take its toll.

As if it wasn’t quite bad enough to have to deal with that and the 13 people (Greg decided the menu was a worthwhile reason to postpone his own Christmas Eve bash) we had for dinner last night,