Written by JW with a contribution from his LH
I have survived several kidney transplants, cancer, and meningitis. I am totally reliant on dialysis to survive. I have lived at home in London with my parents most of my life apart from a brief time at university. I recently moved out of London and gained some independence. I have contributed to workshops at larger events on the topic of kidney failure and sex.
What is chronic kidney disease?
Chronic kidney disease, or CKD is the medical term given to anyone with the various stages of kidney failure. Many do not end up needing invasive treatments such as kidney transplants or dialysis.
A kidney transplant, or one of the two types of dialysis, haemodialysis or peritoneal dialsysis are usually used when someone with CKD reaches Stage 5 of kidney failure – without these treatments, a patient dies.
Most people may start to feel the effects of CKD at Stages 3 to 5; some are not diagnosed in time. For the purpose of this chapter I refer to Stage 5 of kidney failure requiring dialysis or transplant. For reference of all stages, see the links below.
Diabetes, obesity, smoking and drug abuse are some things that can lead to kidney failure. Kidney disease in any form still affects mostly the elderly, as kidneys fail due to age, however an increasing number of younger people and children are being diagnosed with kidney failure. It is my own experiences of kidney failure from a very young age that I base my experiences on.
Kidney disease is also either chronic, developing slowly, or acute, coming on suddenly from infection, trauma or injury. Kidneys regulate a number of things apart from filtering out toxins via urine; they stimulate the production of a number of hormones, including Erythropoietin (EPO) to stimulate production of red blood cells via the bone marrow.
CKD, relationships and sex
Like many conditions and disabilities, kidney failure has a huge impact on a person’s life, and sex is rarely discussed in care plans or at appointments.
Those receiving dialysis may have a tube in their body, or scars (for haemodialysis and peritoneal dialysis or transplantation).
While treatments may be effective, anxiety, low self esteem, and lack of libido may be common.
Some medications used, including those for blood pressure may also have effects. The feeling ‘I’ve got this tube, or scars, no one is going to want me’ is common.
Contrary to much public belief, neither dialysis nor a transplant will mean you are going to be fine.
On dialysis you are reliant on that machine to live, so you cannot easily have a quick weekend away to meet someone.
Sex and relationship education and care plans are often an afterthought of renal teams, or a way of passing the buck. Many, especially younger patients receive no practical advice unless they request referrals to specialists.
I should add that with transplants, some medications, such as steroids stunt growth. As a result many of the patients I grew up with are short. This is something else that brings low esteem and anxiety. Some friends were offered growth hormones, although these were often ineffective.
You become the odd one out and get bullied at school (this even happens in the children’s dialysis unit). I spent some time wondering about the point of aiming for a relationship, as I was so unpopular.
I discovered a love of BDSM during the early days of the Internet – fantasies about power exchange turned me on, especially sadism and control. Having been ‘controlled and told what to do’ by my early medical conditions, this fact may well be a psychologist’s field day.
At 21 I started to explore dating properly with several ‘almost’ experiences. But a lack of confidence, circumstances and privacy meant these did not lead to anything much.
My first experience of intimacy was with a diabetic I met via one of the earlier dating sites, the badly named Hot or Not. We were together for 18 months, with plans for the future, living together and getting married when something terrible happened. I was struggling with a third kidney transplant, highly immune suppressed, and leaving my body’s defences low and easy access to infection. I contracted septicaemia meningitis, spent several days in an induced coma, and lost my memory. Some came back, but the spark of love and desire for my girlfriend died. We are still friends, but without attraction and the romance has died.
In 2007, I happened to meet up with a fellow blogger that became briefly intimate. I think writing and blogging can help with communication. We visited a fetish market, where I found out about the Outsiders club. This was the first time I could experience the world of BDSM that had interested me, for so long, and it opened up doors of sexual experiences. My confidence was somewhat boosted.
Since then I’ve met a number of partners, and had some excellent experiences, from attending larger scale mainstream events such as Erotica, to Outsiders’ Fundraising Ball, sometimes with different women.
Challenges in the bedroom, resources and online questions
Lets get this clear, when someone with kidney failure feels reasonably well, they are just as horny, wanting sex, having fantasies, living fantasies as much as anyone else. To medical professionals, consider asking about issues like having children (sometimes tricky with kidney failure) and relationships. This kind of conversation should be routine.
We also sometimes experience anxiety and low libido so should communicate this to our partners.
While transplants can sometimes make a difference, (returns of libido and energy) in both men and women, steroids can induce hair growth, facial and other, and drugs may have other side effects, like rapidly needing the loo. All these are challenges which can be overcome either with counselling, talking to consultants, and a partner! Drugs can also interfere with periods in women, making them infrequent, or more frequent.
Men sometimes find it hard to ejaculate, especially when tired. Treatments for this problem have improved, EPO is a commonly prescribed drug, and having your red cells at the higher end of the agreed target can help. Again this needs a discussion between the consultant and patient. If a carer is involved, adding to the discussion and confirming that you are sexually active may be enough of an incentive to get things sorted.
Viagra can be prescribed, but it can increase blood pressure, if you are already on BP pills a low dose might be best. Other options should be explored including pumps and rings.
Blood thinners are prescribed for some on dialysis. This is a tricky one if you are into hard impact play. Discuss this with your partner, and a doctor you can work with, it’s better to be safe than sorry. Explore other mental areas of BDSM play but be aware that bruising may occur quickly. Be safe and enjoy.
The different types of dialysis
Peritoneal Dialysis. I’ve got a tube into my stomach. How do I convince my partner sex is safe? ‘I don’t want to break you’ is something I’ve come across. We’re not an expensive piece of china. You just need to know how to be safe and carry on because I’m horny! Self-esteem for female kidney patients, due to scarring from surgery and PD tubes can be challenging when it comes to relationships. A disadvantage is that you cannot safely swim, so no hot tubs, soaking sex, unfortunately.
In one case a woman receiving peritoneal dialysis was given this advice: ‘Tape it down well and get on with it’ – a simple solution.
Haemodialysis
Fistulas. A fistula (sometimes called an AV fistula or graft) used for haemodialysis is a simple operation connecting a vein to a blood vessel (see sites for reference). It is usually placed in an arm, but sometimes a leg. It can be prone to infection so keeping it clean or covered during sex may be necessary.
However a fistula must NEVER been restricted, tied up or impacted upon during sex. My solution to enjoy BDSM has been to use nylon tights to go over the whole arm, so allowing control without a tight area of restriction. The ends of the tights can then be pulled, tied and manoeuvred, safely. Communication is key.
One advantage of a fistula is you can get it wet, as long as it is clean, so use of a hot tub, sauna swimming pool or jacuzzi are all possible.
Finally, because a fistula is made of connecting an opposing artery and vein, it will feel like a ‘whirlpool’ to the touch. The buzzing is technically known as the ‘bruit’ and ‘thrill’. Fun eh? It’s a great icebreaker/or party trick. (Built in vibrator is one old joke! But I wouldn’t use it as such, for reasons of hygiene!)
The permacath
Another form of ‘access’ for haemodialysis is a neckline, or ‘permacath’. This is another permanent tube inserted into the body. If secured well it is safe for sex, but it must be kept clean, and dry.
And again, no hot tub activity with a neckline.
Moving house and independence
My recent change of circumstances has enabled me to write this section. One of the biggest challenges for any disability is being independent in your own space with the care you need. Being on haemodialysis is potentially dangerous. If your blood pressure drops you have two minutes to act, give saline, and hopefully recover without having a trained helper parent, partner or carer present. It’s difficult to live alone and dialyse, although some people do.
I was lucky enough to be offered a bungalow with my partner in January and we moved in together. It ticked all the boxes for our needs, an accessible wet room, parking, a second bedroom for my treatment, and a front and back garden for sanity and all on a handy one level with a social landlord.
My dialysis treatment had to be transferred, as did my benefits, registering with a new GP, dentist and social worker, and getting various care assessments.
The main part of the first six months involved travelling to and from the hospital with my girlfriend as my new primary carer and to learn the ropes with a new dialysis machine. Hospital transport was offered but required us to be ready at 4am to be at the hospital at seven o’clock. So I used up a large amount of savings on taxis! Travelling far is difficult.
Dialysis is a lifesaver, and home dialysis is better, but there is no easy way to travel for more than a few days without dialysis. It is DIALYSE OR DIE.
Relationships with someone on kidney Dialysis/
LH with whom I now live wrote this:
‘We met about 6 years ago, on the Internet and bonded over a shared love of sci-fi, plants and kink. I knew very little about renal failure at the beginning. The best resource I have read is Kidney failure explained by Dr Andy Stein & Janet Wild RGN. Great for laypersons, the book is a guide to renal failure and all that it encompasses. It covers the emotional and psychological aspects of the condition and the effect of treatment.
As JW has touched on, as I got to know him, I found it even more relevant – with kidney disease comes a whole load of baggage. Many renal patients struggle with:
• Restrictive lifestyle
• Struggle with self image
• Shock, grief, denial, acceptance
• Loss of self confidence
• Fluctuating levels of energy, desire, and tiredness
• Anxiety
• Sense of loss
• Depression
This is going to vary with age, sex, ethnicity, length of time they have had the disease and how fast it has progressed. I too am disabled, I have MS and there have been times when we doubted the sanity of such a relationship, but here we are!
Shock, grief, denial, acceptance
This is a journey we see with many disabilities, the topics cropping up again and again on kidney and MS forums. I’ve had MS for over 20 years; JW has had CKD since he was five. I think we are both accepting our situations. We have to accept our own disabilities as well as each other’s and make life and love work within those limitations. We knew that if we wished to live together and make this relationship work, we would need a support network. I have a carer four days a week and we employ a PA to help James. We are registered as co-carers with the local council.
Restrictive lifestyle
For the patient, dialysis rules your life, in one way. It truly is dialyse or die. It helped that when we met, we were already disabled. It was not a sudden shock to be faced with a diagnosis. We were also mature enough to cope emotionally with the prospect of a disabled partner. I did not know him without CKD and he did not know me when I was younger and in better health.
Four days a week, life revolves around dialysis. Afterwards neither of us has much energy and going out is usually a massive effort. While we were at the dating stage James could not visit me for more than 48 hours without needing to return to London to dialyse. I would travel to London for maybe four days, but he lived with parents so it wasn’t entirely private. We would take mini-breaks in hotels where we felt more free to express ourselves.
It’s hard to generalise because renal failure, like MS, will be different for each person. What I would like to offer is general relationship advice for ANY disabled couple, starting or trying to start a relationship.
Communication, communication, communication
I can’t stress this enough. Talk and listen to your partner. Get to know each other as people before you get intimate. What are their/your fears? What are their/your experiences? What do you want from this relationship? If you don’t know much about how a disability affects the person then ask! And do your best to learn. It’s what I used to call the health & safety talk which possibly sounds a bit OTT until I tell you I’m also epileptic and have had fits whilst on a date (not with James) leading to total or partial memory loss.
Limitations
You are going to have limitations. Even on a good day it may be the energy is low, the fatigue is crippling. It’s frustrating and annoying but I realise that this is the new normal and don’t blame each other. Set realistic goals.
Practical stuff
Yep, practical stuff extends to the bedroom. Are you or your partner going to need a PA or aids to get undressed or showered? It’s hard when your body does not work how you want it to. Again communication is key. Saying such things as my leg won’t bend that way and I can’t kneel is key unless you’re going home in an ambulance! We have limitations, both in that what our bodies can do.
The brain is the biggest sexual organ. Imagination has led to the solving of practical problems. Be open to new suggestions, experimentation and other ways of doing things. (I won’t mention sex toys as sure there will be tons written about elsewhere)
We recommend https://www.liberator.com/liberator-sex-furniture/chaises-lou
Resources: Charity and peer support
National Kidney Federation: a campaign charity run by and for kidney patients
http://www.kidney.org.uk
Kidney Care Uk
https://www.kidneycareuk.org is the UK’s leading support organisation for kidney patients.
Both charities offer support and to some degree advocacy and are active on social media through Twitter and Facebook.
Kidney Patient Guide
http://www.kidneypatientguide.org.uk/contents.php is an excellent site with animations on both dialysis treatments, plus an active forum.
Kink, kidneys, transplants and dialysis
A fetlife group I set up some time ago for those with kidney failure with over 70 members:)
https://fetlife.com/groups/25749 I set this group up as a bit of an experiment. Since its formation, some good practical suggestions have come out of the discussions within the group. You must be 18 or over to register for this site.