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Sex and the Kidney Transplant

That’s right, boys and girls. Today we are going to talk about the birds and bees and kidneys.

Let’s set the stage. In May of 2007, I had a week that went roughly like this:

  • May 11: go to court and finalize my divorce
  • May 13: turn 33
  • May 15: get a scheduled kidney transplant at MGH
The first stolen moment after the ceremony.

The first stolen moment after the ceremony.

A year later, I added one more significant date to that week. On May 16, 2008, Eric and I eloped to City Hall and got legally married (don’t worry, we did the big ceremony/party thing a month later for the families – despite my stone cold heart, I’m not completely heartless).

I am one of the younger transplant patients around if you look at the bell curve of average ages. This presented me with a whole range of issues I hadn’t expected, including sex.

Bear with me as we go through a bit more background. We’ll get to the sex part very soon.

Just out of surgery and unconscious. Eric right there by my side.

Just out of surgery and unconscious. Eric right there by my side.

Eric and I had been dating for six months when I had the transplant. When I found out a month before that it was go-time, I offered him a way out. I told him that I would totally understand if he didn’t want to be with someone who was going to have deal with a chronic condition for the rest of her life. I said we could totally be friends with benefits after I recovered. I was completely honest in this. I didn’t want to be with someone who would resent my illness or be impatient with me, and I know from watching Mom and Dad struggle with his diabetes that it requires a lot more from both partners than you would expect.

Eric helping me walk and pulling my oxygen tank.

Eric helping me walk and pulling my oxygen tank.

Eric simply looked at me like I had three heads and proceeded to spend every night in my hospital room, hold my hair while I vomited, bathe me for six weeks when I got home and couldn’t shower, be patient with the days I could barely move, take me to the ER at all times of day and night, learn by heart all of my meds, and a thousand million other little things that went above and beyond the call of boyfriend duty.

Engaged in Paris!

Engaged in Paris!

Before the transplant, I told Eric that if I was alive and doing well in six months, we were going to Paris for Thanksgiving to celebrate. Six months later, on the Pont Alexandre III at the Blue Hour, with the Eiffel Tower sparkling with lights in the background, Eric got down on one knee and proposed with my grandmother’s engagement ring.

I was totally that girl who burst into tears and said yes.  And, sorry guys, if he just blew every other proposal tactic out of the water.

Us. Today. Awesome.

Us. Today. Awesome.

We’ve been together for almost eight years now, and little did we know that our vows would be put to the test, repeatedly, in those first years. Somewhere along the way, we dealt with my cancer, his going back to school and changing careers, moving to Delaware and back to Boston, my unemployment, his unemployment, my Dad’s death, moving my Mom to Boston from Indianapolis, two-to-three hospitalizations a year for me, fears of infertility, multiple miscarriages, moving five times in two years, other family deaths, depression, anger, anxiety, my weight gain, my struggles to lose weight, resentment and miscommunication.

We’re here today, and we are a single, solid unit. We are better than before. We have become more than before. I have learned to talk. He has learned to talk. We are both better listeners.

And then…there’s sex. Ah, that’s the part y’all are waiting for, right?

In preparation for my transplant, I read every brochure and every flyer, and info sheet and website that was out there. I learned a lot about my immune system, kidney function, transplant medications, etc. I learned next to nothing about how a kidney transplant can affect your sexuality.

Caveat emptor: what I’m about to describe is my personal experience, and this is all definitely about the female transplant recipient experience. I’d love to hear from any brave men out there about their experience!

There was one page in one brochure about transplants and sex. It said to wait until the doctors gave the okay for sexual activity and to practice safe sex. There were two sentences about the psychological impact of having a transplant on your sex life, and it went something like: ‘You may feel a little awkward about your body at first, or have questions about your attractiveness. Talk with your doctor and your partner about these issues.’

That’s it. That’s all there fucking was. Pardon my French, but I was healthy 33 year-old woman with a new’ish boyfriend and looking for some really good sex in my life. I was totally on my own here.

Now, don’t get me wrong, I was grateful that I didn’t have to do peritoneal dialysis, because from a sex standpoint, I had no clue what would happen with the tube coming out of my stomach. I asked Eric once what he would have done, and he grinned and said, “Oh, I would have found a way to make it kinky.” I love him so much.

I did ask my doctors about when I could have sex after the transplant, and they generally agreed with the six week period, and said to go by how my body felt. They also cautioned me to stay on the birth control pill, which I was fine with, as I was not in any place where I wanted kids…and transplant motherhood or attempts at motherhood is a whole other post.

Prior to the transplant, I was getting sicker and sicker, and my energy levels for pretty much anything – from dog walking and dishwashing, to showering and sex – had dwindled to nothing. The physical weakness was like nothing I’d ever experienced before. The worst part was that I still wanted to have sex, but I just didn’t have the energy to do much about it. Eric, bless him, did all the ‘heavy lifting’ and understood when I needed to hold off.

The transplant came and went, and I had sex weeks (six, typo, but it’s staying) of steristrips and having to sponge bathe. At the end of six weeks, I promptly got my first post-transplant UTI and was rushed back to the hospital for a week. By the time I was ready to have sex, we were seven weeks out. Almost two months.

Being able to have sex post-transplant represented a big part of returning to a normal life. I was excited (pun fully intended)…and so was Eric.

What those brochures don’t tell you is that it the first time back in the saddle for a woman hurts like a motherfucker.

To start with, you’re already feeling that everything has been, um, shifted around inside you, which is a weird sensation to get used to. Then, there’s the whole 10-inch incision down one side of your abdomen that has gone through all the layers of muscles and nerves. Having sex stretches and contracts those muscles in new and unexpectedly unpleasant ways.

Oh, and the pain hadn’t gone away by the end of eight weeks. It took more than a year before the incision was mostly pain-free, and two full years before it was finally numb.

So, that first time back having sex was great and not-so-great. I was high off of being able to touch Eric and be intimate with him, and the feeling of being so alive was amazing. On the other hand, I was white-knuckling the sheets and doing yoga breathing to force my muscles to relax and please-don’t-contract-in-my-abdomen-because-it-really-hurts.

Practice makes perfect, but practice also brought on UTIs and more trips to the hospital. We got those under control with antibiotics, but the poison seed had been planted. For a long time, there was always that moment of worry, that moment of, “This feels so amazing. I hope it doesn’t give me a UTI.”

There’s also nothing like chronic UTIs and the resulting chronic diarrhea from the antibiotics to make a woman feel disgusting about herself ‘down there’ and worry that her partner won’t want to do oral sex because she’s ‘dirty.’ It would get so bad for me that I would actually refuse to let him go there. I was wracked with anxiety about giving him some kind of bacterial infection or worse, that he would think I was gross and be turned off.

I wish I could have spoken to someone about this, but I lacked the courage, and the traditional medical patter doctors use lacks the vocabulary and phraseology to ease into this kind of conversation.

To be quite frank, the only time sex ever came up was to make sure I was staying on the pill and to tell me how long post-infection or post-procedure to wait before resuming.

Maybe a sexuality check should be included in the list of recovery questions. It might take some coaxing to get it out of patients, but I know that in my case, with just a little prodding, I would have broken down and spilled my guts and my tears.

Then, there was my changing body. The devil prednisone had created a monster of hunger and blocked all the satiety chemicals in my brain. This resulted in a weight gain that left me feeling ugly, fat and definitely not sexy.

For me, sex comes down to trust: trust in myself, trust in my partner, trust in my body.

Between the transplant and the weight gain, I had lost all trust in my body. The trim, cute little curvy girl who had gone under the knife had come out a fat, sick, ugly woman.

I lost my trust in my body to respond to sex, to inspire sex, to be worthy of sex. I felt my whole area ‘down there’ was one big, disgusting morass of illness (did I mention the cancer? Yes, briefly, there was cancer down there…another post for another time). Everything that went wrong with me seemed to manifest itself down there – blood, urine, shit, tissue. I hated my vagina. I hated my bladder. I hated my new kidney.

Yup, that’s right. I hated my new kidney. I hated it because I needed it, because in order to keep this little piece of shit alive and working, I had to take a small drug cartel’s worth of medications that had some just delightful side effects.

I hated everything damn thing about my body. Well, except for my boobs.

The only good thing that happened as a result of the prednisone is that I ballooned up overnight from an A-cup to a C-cup. I am pleased to report that even with my current dramatic weight loss, the girls still overfloweth their C-cups.

Pre-tansplant twins

Pre-tansplant twins

Post-transplant twins

Post-transplant twins

The scar.

The scar.

Also, I love my scar. I think it’s the hottest thing since sliced bread. To me, the only sexy constant has been the badassery proclaimed by this 10-inch incision site. To be proud of my scar is to say I love myself for what I’ve survived, and I want to flaunt my strength as something incredibly sexy and attractive.

My strength and ability to survive were the only things for a long time, though, that I liked about myself. Finding a way back to liking myself and my body was a long road of dejection, panic and anger.

For me, things only started to resolve when I was finally able to start losing weight (a jumpin’ mix of rock-climbing – the monkey DNA clearly inherited from Kidneydonoruncle Franco – and Adderall that I now take for my ADHD.)

Once the weight started to come off, I began to feel so much better about myself. I began to trust my body again, trust that I could have some control over it again, trust that I could still be beautiful. Maybe it’s not the psychologically healthiest outlook or set of values, but in order to make any progress, I had to admit that those were my values.

For all my projected self-confidence, I didn’t like myself, let alone love myself. Once I truly accepted that, I could start to make changes…and make changes I did.

So, 20 pounds later, with another 15 to go, here I am. Still here, still have my kidney, still take all the meds that whack out my body, still dealing with all the ‘output’ issues of my nether regions. Yet, my desire for sex has come roaring back.

I want to do terrible things to this man on a regular basis.

I want to do terrible things to this man on a regular basis.

Now, there’s no way I’m going to let a little thing like a kidney transplant get in the way of me doing all kinds of unspeakable things to Eric…and getting him to do all kinds of unspeakable things to me. I love to play, to be wild. I like experimenting. I love having a husband who is such an amazing, responsive lover and is willing to go wherever I want.

I fully admit that there were a lot of other exceedingly complex factors that went into my twisted up post-transplant sexuality, the faith-shaking experience of the transplant itself along with all its attendant side effects played a large part in dragging me deeper and keeping me stuck. Making peace with the transplant meant finally making room for recovery and a renewed trust in life, love and the power of sex.

Happiness.

Happiness.

So that’s my story about sex and the transplant. Tell yours…it might help.

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Quite the Handful

Quite the Handful

Someone asked me once how I swallow all that in one gulp.

“Practice,” I replied with a wink.

It’s always a good day when you can make a dark, inappropriate joke about your transplant.

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It’s a matter of death. And life.

I don’t write for this blog every day. My traffic stats are pitiful…when I bother to check them. I have not done search engine optimization (SEO – Lord knows it look me a LONG time to figure out exactly what that meant. I thought it was some kind of new-fangled dot com executive title. Am truly battle-scarred from my dot com days.)

I just feel that when I have something to say, I should say it, and the right people will find this blog at the right time for the right reasons. I’m beginning to have some faith in the universe. I have a casual list of topics I want to eventually cover in my blog, and sometimes, like this morning, I wake up with ‘Something to Say’ (TM). 

So here it is.

I am terrified of death. 

I am wake-up-in-the-middle-of-the-night-panic-stricken terrified. I make minor decisions in life like about whether to buy something or do something based partly on whether I will regret it when I die. Every day, thoughts of death and the shortness of life flicker through my brain. If I’m feeling like an atheist that moment, I try to conceptualize nothingness for eternity or remember the blankness before I was conceived. I imagine it’s like falling asleep, and I hate the emptiness and blankness of it all. I suppose this is why I hate falling asleep most nights. If I’m feeling spiritual (not really an organized religion girl), I try to imagine a grander awareness and being part of a great surge of energy.

2 a.m.

2:00 a.m. The night before the transplant. A terrifying limbo with nothing to do but think.

Neither option leaves me feeling particularly settled or reconciled. 

I still hate death. I hate, hate, hate the idea of dying because I am so madly in love with living. 

I am so happy to be aware, to be in my giant, geeky, pesky, dysfunctional, hyper-functional brain at all times. I have no trouble being present in the moment. I live right now. I don’t live for the future. The universe has hit me over the head with enough 2×4’s that I finally get it. Even if you’re struggling and slogging through the shittiest times of your life, you are ALIVE. That in itself is worthy of a hell-yeah-freakin’-hallelujah before you go back to gritting your teeth and getting on with getting on.

I will never be done loving the people I love, meeting new people to love, and simply living with all the love around me. I will never be done telling stories. I will never be done learning – that’s a huge fear right there, that I’ll die without getting a chance to read all the books I want to read or learn about the things I want to learn. And, let’s not even get started with all the food to eat and drinks to drink. 

I don’t want this to ever end. I can’t stand the thought of not being me, of there being an absolute end to everything that is the bright, surging light that is my life. I know it’s inevitable. I remind myself that King Henry VIII died and has stayed dead, and he had one hell of a life. Weird, I know. But that’s why my brain is such an awesome place to live in. I never know what I’m going to think next. 

Oh yeah.

6:00 a.m. Morning of transplant. Fighting spirit.

I have so much to do, so much to give, so much to experience. I’m not done. I will never be done.

And yet…the irony is that because of my kidney transplant, there is a chance that I won’t even live as long as my contemporaries. Of course, my goal is to be the old lady who Just. Won’t. Die. You know, the one you have to push off a cliff or sneak morphine into the morning whiskey. However, aside from the hit-by-a-bus randomness we all face, my odds must include the fact that even with major medical advances, having a transplant introduces a whole new set of unpleasant variables into the betting. 

There’s the fact that the flu or pneumonia could kill my kidney and put me on dialysis. There’s the fact that having no immune system means infection and illness could literally kill me. There’s the fact that I may or may not do well on dialysis. There’s the fact that my meds might stop working, and I’m already operating on a limited list of what I can take (yes, new stuff comes out, but that takes a while and is no guarantee). There’s the fact that if I get a second transplant, it might not work (odds are that it will, but we’re talking about the need to acknowledge the flip side). There’s the fact that I am already at genetic risk for Type II Diabetes, and the meds I take for immune suppression are highly diabetogenic. I saw my Dad with diabetes. It’s no joke. There’s the fact that my body has had cancer, and it’s a factor we look at every time certain things happen. There’s the fact that I take prednisone, a jagged little pill if ever there was one. There’s the fact that I have never been physically robust, and now, daily, my body is under tremendous stress to keep functioning every day, so how long before I just wear out?

Now, I honestly don’t think about that stuff every day. I almost never think about it. It surfaces when I’m sick or dealing with a health crisis, but that’s it. I focus on walking 3-4 miles a day, rock-climbing, cooking, writing, spending time with friends and family, devouring books and ideas, etc. I live. I live happily, fully and contentedly. Still, I live every day with those flitting, fluttering thoughts about death and the need to be aware of it so that I can live.

I live hard. I live it to the bone. I push through fatigue, pain and nausea to do the things I want to do. I will go kicking and screaming to my grave, no stone unturned (how’s that for a mixed metaphor?). I am a fighter. I will ALWAYS fight. I can’t even imagine a scenario where I am in full possession of my senses and choose to give up. I’ve lived through excruciating pain. I’ve lived with pain. I’ve faced down everything that comes my way. As long as I have my mind, I am going to fight and live and fight some more.

I will never be done, never be ready, never be reconciled. It pisses me off that I can’t do anything about it. Yes, I know about acceptance of things you cannot control, blah blah blah. 

But, I will never accept death. Not even the day I die.

Image

Today. 8:26 a.m. It’s going to be a grand old day.

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Pre-Operative Joy

Pre-Operative Joy

So, there’s a video going around right now of a woman shakin’ her thang and showing some serious moves before going in for a double mastectomy. I get her.

I get her not just from a “Oh, isn’t that brave!” third party perspective. I get her from the heady mixture of joy and terror coursing through your veins in the moments before you go under the knife.

There are very few occasions in life where you go to sleep one way, and you wake up to a radically different existence. I went under with a kidney-and-a-half and a life teetering on the razor’s edge, looking over into the deep darkness on the other side. I woke up with two-and-a-half kidneys (I will explain the half bit later), and a whole new set of challenges, and a new lease on life.

There is a sense of tremendous joy, hope and even empowerment that goes through you as you are wheeled to the OR and enter into the cold, antisceptic-smelling room. Finally, there is something you can do about your illness. You’re no longer a passive victim, fighting with your hands tied behind your back. You are taking a knife to that bitch of a condition.

For me, there was also terror. Going under with anesthesia has always frightened the bejesus out of me. It’s the same reason I’m afraid to fall asleep. It’s a little too close to what I imagine death will be like, and when you have been close enough to stare the blackness in its yawning, endless, formless maw, I don’t care what you believe. It’s frightening. There’s also the terror of what will everything be like on the other side. You “know,” of course. The transplant team has taken care to educate you as much as possible. But, there is a line in the sand that even they can’t cross because only you can step over it and be inside your own body to experience it.

So basically, there are some heavy unknowns that you carry with you in the pit of your stomach into that OR, even though you have been scrupulously emptied of everything else in your digestive system overnight.

Yet, you don’t want to burden those you love with these worries when you already see heavy loads of love and concern in their faces. Somehow, at the end of your own physical and emotional strength, you find that last drop at the bottom of the well. It’s just enough courage to infuse others with your joy and your sense of triumph over your disease.

So, while I didn’t have the strength to dance (I could barely walk), I did have enough in me to flash the victory sign and call out as I was being wheeled away:

“Cheers, bitches! See you on the flip side!”

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Just a Little Bug

Just a Little Bug

It started last night with a bad night of sleep and a nasty feeling in my tummy.

This morning, we have expanded the repertoire to include nausea, headache and a rather busy schedule on the toilet (TMI, I know, but the joys of being a transplanter are such that I simply MUST share). Achy body included.

I know exactly what this is, though. It’s just a little bug. It’s so insignificant that nobody else will get it. Or maybe they’ve got it, had it and never even noticed because they have a fully-functional immune system.

Transplanters like me tend to get all the bugs that normal people do, only because we don’t have an immune system operating at 100%, we get to experience almost every single one of the bugs.

I end up walking a fine line – heck, so many fine lines it might as well be a spider web – between admitting I’m not feeling well, coming off as a sickly complainer, doing what I’m supposed to do to take care of myself (resting, which is just SUCH a waste of time), and pretending nothing is wrong and trying to power through it.

If you have read any of this blog, you’ll know that my goal is to be normal, ordinary, average, etc. Sometimes, for me, that does mean pretending I’m better than I feel so I can participate in things I want to do, or so that I don’t feel like I’m dragging others down or holding them back. Okay, most of the time, that’s what I do. I admit it. I’m terrible about taking care of myself. I have YOLO and FOMO. I have trouble balancing the joy of living and the determination to live fully with the need for caution and circumspection. (Almost typed circumcision there)

However, today, I feel crappy enough that I am going to take a nap AND NOT FEEL GUILTY ABOUT IT. I’m also going to take Tylenol and drink lots of water.

If I don’t feel better by this afternoon, I’m going with the nuclear option of eating a big bowl of lettuce and having a cup of coffee. If that doesn’t flush out whatever is wrong with me, then nothing can.

On the upside, I have been using this new hair product that makes you look like you have beach hair, which is great for bedhead days and days when you feel like crap, because at the very least, your hair looks good.

And good hair is almost as good as being normal.

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A sick sort of popularity contest

One of the things I have tried to make a priority in the blog is telling things as they are. That would include the weird and not-so-charming parts being a transplanter and being human.

And….one of the most human things is wanting to be accepted and popular. Maybe it goes back to some anthro-biological survival imperative that acceptance into the cooperative survival unit blah blah blah (you can tell I’ve been reading about prehistory and anthropology lately…for fun…). But, I have to admit, I love showing off just how “in” I am at MGH.

I shouldn’t care. I should be compassionate and humble. I should be anonymous. But, I’m not. I’m human, and I’ve never really belonged anywhere in any kind of popular group. Even my mixed ethnicity means I only half fit in with Indians and Europeans.

But damn, if I don’t feel like the head cheerleader at MGH as I sashay into the blood lab.

IMG_3795I smile with easy compassion for those who are confused and daunted by the busy check-in desk. I bask – literally bask – at the delighted coos and cries of welcome from the phlebotomists who have been my friends for more than ten years now.

We’ve cried over my veins, fainted over my veins, prayed over my veins (“The blood is flowin’! Praise Lord Jesus, keep it comin’!”), and been through more tubes than a small meth lab. They check over my outfits, comment on my handbags, tell me how they think I’m looking, ask me about my handsome husband, talk about their families and lives, and just pass the time of day.

I feel like a minor celebrity as I head back to the blood draw area, waving, calling out hellos, and giving hugs to my friends. Other patients look at me in wide-eyed curiosity. I must be SOMEBODY. I’m a puzzle and an anachronism, someone who is so at ease in the blood lab that it’s no big deal to be there. Then someone sticks a needle in their arm and they forget about me. Which is as it should be.

IMG_3796

Should I be admitting this? Probably not. I’m supposed to be a dignified example of model transplanter behavior. But, I’m not. So there it is. It’s the same in the Transplant Clinic and at Dr. B’s office. It must be my natural charm and charisma. Maybe not. Maybe it’s because I do try to be easygoing and cheerful and look on the bright side of things. Even when I get bad news. I just take a deep breath and ask what I need to do. No fuss. Just get it done.

Maybe it’s because I’m insistent on the fact that my health is not the center of my life. I’m always reading weird, esoteric books, cooking things, doing something fun and crazy with friends, rock-climbing, writing, or doing something else other than thinking about my health. Perhaps that comes across in my time with those who are charged with caring for me, and they understand that what we do together is important because I am MORE than just my transplant, and it’s important for me to stay MORE.

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Huh. Maybe I’m not such a bad example of transplanter behavior after all.

One good example I set a few weeks ago was getting my flu shot. Did you get yours? DO EEET!

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