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.

About Cait Reynolds

Cait Reynolds is a USA Today Bestselling Author and lives in Boston area with her husband and neurotic dog. She discovered her passion for writing early and has bugged her family and friends with it ever since. She likes history, science, Jack Daniels, jewelry, pasta, and solitude. Not all at the same time.
This entry was posted in Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

11 Responses to Sex and the Kidney Transplant

  1. Vanessa says:

    Thankyou for sharing your story. I am sure it will help many others to know they are not alone in issues like yours. We want people to be mature and to be able to speak about sexuality issues, especially our medical providers, with understanding, compassion and without embarrassment. Perhaps for that to happen we, the patients need to take some responsibility and force them to have that conversation and hoping over time they will get better at it, and maybe the pre-surgery information can be much better than two airy fairy sentences in a brochure. Maybe you could send the link to your post to your doctor or even print off a copy and hand it over to let them know that patients with chronic illness value their sex lives and age is not always that relevant. Maybe this could inspire them to respond with more practical support and information from the team who support transplant patients or any other chronic condition. I think you are incredibly brave and an example of the quote that ‘trials don’t just need courage they reveal it’ and for some people waking up, deciding it is a beautiful day and just get on with their life with a smile, love and kindness is a decision to activate their courage. All the very best for a future full of love and joy with your Eric.

  2. Chloe Ryan says:

    I am a kidney surgeon at UBTH hospital, I have a patient for kidney donor, if you required for a kidney donor, do get back us at ubthmedicalcentre@yahoo.com

  3. Sue says:

    Hi Cait. Just wanted to let you know how completely awesome I think you are and how much I appreciate all of your posts – especially this one! My daughter, who will soon be 17, had a kidney transplant 8 years ago, so not much to contribute on this topic yet (as far as I know). (And, when there is, I hope she, not I, will be the one contributing!) I do think about this for her, and also about the logistics of pregnancy and post-transplant meds… But we’ll cross that bridge when we get to it (hopefully not for a few more years). I wish you and your wonderful Eric an abundance of joy, health, and good fortune.

  4. Me says:

    I a man who had a double transplant in Feb, kidney and liver. I searched the Web and you are spot on.

    All the doctors just told me be safe. All the literature is about waiting for the green light and trust and body image. Lack of desire. Love. Nobody tells you the nitty gritty like you did.

    Thank you very much. You are very strong. I appreciate your knowledge.

  5. Paradise Shivley says:

    I goggle this and you popped up, let me first say thank you for your imput.. I am your twin in this had liver and kidney transplant 2015. Im about to embark on a adventure that might require sex.. Im so happy to hear someone speak my language. . And i cant wait to find out about this sex thing…giggle but enough of that for now.
    Stay well and safe

  6. Serenity says:

    I just had my kidney transplant on 9/09/16 and I’m 30 years old, your post really helped me your story bought tears to my eyes because I’m feeling exactly the same way as you in the beginning so you have given me hope!! Thank you so much!!

  7. hayley says:

    Hey! Thank you so much for sharing your story! I’m about to have my first kidney transplant and you’re right there’s no info on sex after transplant. They have me so scared of germs that now all I can think about is if I’m going to fuck my kidney up having sex. Any tips for cleanliness, I feel like I’m gonna have to wipe everything with alcohol first 😑

    • caitreynolds says:

      Hayley, you will not fuck your kidney up with sex. The best advice I can give you is to wait about 3 months at least, because before that? OMG painful because of the incision. Unless you’re in a monogamous relationship, use protection (standard, really). Other than that, sex isn’t going to mess up anything. Focus more on hydration and staying away from people with colds! LOL. The biggest thing I remember is just the pain from all the muscles contracting and stretching. But that goes away as you heal. Your partner can go down on you, use his hands, penetrate, and there shouldn’t be any problems (this is obviously not medical advice, but just my experience). Be careful about UTI’s – as a female transplant recipient, I think you’re prone to them more in the first year or so as your body comes down from the whoa-what-the-fuck-just-happened-to-my-immune-system. Again, hydration and staying away from people who have colds, washing your hands after being on the subway, etc. is what you need to focus on. But the point of a transplant is for you to live a normal, healthy life afterwards. I take my meds. I go about my business. I have sex. I go to the gym. I run 5k’s now. There have been hospitalizations and setbacks, but life only ever moves your forward, so I choose to move with it. Good luck and keep me posted!

  8. Heather says:

    This was some really good insight. I’m 6 months post and terrified of starting back sex. Physically I’m fine but I feel like I’m going to get sick immediately. Does condom use cut down the uti incidences?

  9. Ankit says:

    Hey … thanks for sharing ur experience … I am a guy and I NVR imagined that how difficult it cud b for a girl to come back to normal sex life ……I m very positive abt my transplant as I got too skinny before tranplant so I m feeling good gaining weight ..and must tell u ..u look too cute in the above pics..don’t ever let it confidence down…

Leave a Reply to Vanessa Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s