The importance of an Organ Transplantation and what it’s like to be ill and waiting.

To be seriously ill with a debilitating and potentially terminal condition is like being in jail, but its your own sick, frail body and you haven’t done anything wrong to ‘deserve’ this. To be waiting for a lifesaving kidney transplant either from a deceased list or from a live donor is never knowing what to feel. Should I feel happy and hopeful that someone passes away soon so I can live? I can’t even pray to God for a deceased kidney transplant as it means praying for another human being, most probably as young as me, to pass away.

On the other hand, looking for a live donor is another form of torture and uncertainty. “Don’t get your hopes up” they say, even when you are being admitted to have your final preparations done to receive a donor kidney. “Don’t get happy, the donor might change their mind, get sick, get disqualified any minute… Any moment it feels like”. You can’t feel happy or sad or hopeful or despair.

Don’t feel. Don’t think. Just keep positive…

Just one day at a time and hopefully you will make it, you will be the lucky one all goes well for, and you will survive.

You are being kept in the dark 90% of the time from anything that happens with the live donor process. You try to piece the picture together from tiny information fragments, trying to guess. “What stage is the testing at? Do I even have any chance? Will I live long enough to be transplanted?”

One day at a time.

Constant anxiety and worry for the future. Despair and sadness for your loved ones and feeling guilty that they have to deal with it all too. Feeling like you are a burden on society, NHS and your loved ones. Feeling like you failed. Feeling betrayed by your body.

How does it impact you physically and mentally?

Physically kidney failure feels like the worst never ending hangover. It is there all day every day. Extreme soul crushing fatigue, vomiting and tummy issues, muscle pain especially at night.

Oh, the muscle spasms! Most nights I wake up screaming from agonising pain. The itching of the whole body so bad you scratch your skin off with your nails whilst you are asleep and wake up covered in blood, confused and scared. Frequent and violent nose bleeds from hypertension which can’t even be controlled by BP medication. Hypertensive migraines, when the pain is so intense you vomit for days, which means dehydration and a trip to A&E. Dizzy and faint spells are terrifying especially when they come at the worst times possible like whilst driving a car. That’s why I developed driving anxiety and can’t drive myself anymore, which is extremely limiting.

In my case it is also severe weight loss and no appetite whatsoever. Kidney diet is absolutely brutal, the worst and harshest diet I have seen from a medical stand point. It is extremely limiting especially if you are a vegetarian like myself. Sadly, most kidney wards aren’t catering to the proper kidney diet either and every hospital stay turns into a complete nightmare where you keep nagging people in your life to cater for you, which is quite dehumanising. Also it is quite a task to take care of the dietary needs when due to CKD the fatigue is so overwhelming most days it is impossible to even get out of bed to use the bathroom, let alone cook a balanced nutritious meal. Why do most of the meal deals come with a side of potatoes? A mystery…

From a mental standpoint it is a never-ending roller coaster of mixed emotions. Partly because of the hormonal disbalance caused by kidney failure and some medication, the emotions can be all over the place. Depression comes hand in hand with kidney failure for me personally. It is a struggle to find a will to continue living with a clinical depression even when your body is healthy. Some days are harder than others, but especially since end of November 2022 when my live transplant was cancelled, I have been in a very bad place mentally. I am currently dealing with the worst case of depression I have ever suffered.

Some days I just cry for no reason. I open my eyes and when I remember what happened I can’t stop crying and it feels like my world, all hopes and dreams have been shattered in one single moment. You feel hopeless helpless and defeated. That no matter how hard you try, how hard you work and push yourself the result will always be the same. You feel like you don’t deserve anything in life, and that the whole world is against you. It’s depression talking, but during these times it feels very real.

How long have you been waiting? What is it stopping you doing? What would you like to do once well after transplant?

I have been waiting for a live donor kidney transplant for over 3 years now. Due to the pandemic the testing of the live donor I had took this long. I have been listed on the deceased donor list in December 2022 after my ex-live donor changed their mind just 24h before the kidney transplant surgery was to take place. We kidney failure patients are told time and time again not to get our hopes up about any potential transplant, but sometimes it is easier said than done. Waiting for a kidney transplant is dealing with disappointment and soul crushing change of circumstances all the time.

Because I am on the transplant list and due to how poorly I am I can’t travel. We were supposed to have our honeymoon with my husband this month but because of my health we had to cancel everything, and it made me extremely sad. I can’t have children either because of kidney failure and it is a very painful subject for us. Also, I had to stop working and currently on long term sick, which was a very difficult decision to make but in the end my medical team advised that I should take this time to get better. It has a massive effect on us financially, especially during the cost-ofliving crisis.

Once I am well after I have my lifesaving kidney transplant, I plan to go back to university to finish my masters and do LPC to finally qualify as a solicitor as it was my dream since I was a little girl. Then my husband and I are planning to start a family, which is impossible at the moment due to my poor health. Thanks to a miracle of a kidney donation, I can have children a year after a successful kidney transplant. Most importantly I wish to have a restful sleep and feel refreshed in the morning. Due to my current physical state I have to sleep over 12 hours daily, and I still feel extremely tired all of the time. The fatigue is debilitating and at times I don’t even leave my bed for weeks as I am unable to function and take care of myself.

Also, I miss swimming, as I have a tunnelled chest catheter which was placed in order for me to have a plasma exchange to receive the ABO incompatible kidney from the live donor, which didn’t go ahead. It was decided to keep the chest port in just in case I require it in the future, as the insertion procedure was extremely traumatising for me. Chest port can’t come in contact with water due to a serious risk of infection. Because it goes straight into my heart any infection can turn nasty fast and be fatal. Because of the chest port I also feel very self-conscious and cannot wear the clothes I used to love wearing. It does make me extremely sad that every part of my life it seems has been consumed by this illness.

Are you on dialysis? Describe your schedule and how does it impact your life?

I am pre dialysis with GFR below 10. But because I have a chest port, I need to go to the hospital weekly to flush and lock the line with citrolac. Also the hospital monitors me closely so I am having weekly blood tests and check-ups as with such low kidney function things can start turning nasty very fast. At the moment my biggest battle is with anaemia and blood pressure. My poorly kidneys do not produce EPO hormone which helps with conversion from iron to haemoglobin, so I am severely anaemic which adds to my symptoms like fainting and palpitations. Every 4 weeks I have to receive an injection of a synthetic EPO hormone in my stomach, to help my body with the production of red blood cells.

Also due to kidney failure I have developed thyroid issues which have a set of challenges too.

What difference will the transplant make to you – physically, mentally, in what you’re able to do, plan etc?

A successful kidney transplant with no complications will give me my life back, which I couldn’t enjoy since I got sick at the age of 18. It would be a second change at life, a rebirth. Even thinking about the most precious selfless gift of life brings tears into my eyes.

I understand that life post-transplant is not without challenges, and there is no cure for kidney failure yet. But managing a kidney transplant with medication, which is almost exactly the same as I have been taking for over 11 years for lupus, seems like the least of my worries. I overcame so much in my life that it seems that my whole existence has been a never-ending battle for survival. I escaped poverty in Lithuania, my parents’ substance abuse and domestic violence. Then I was abused by my stepdad and made homeless by him as a teenager in the UK. Ended up in a Women’s Aid Shelter. Got seriously debilitatingly sick, then disabled and still graduated from the law school and continued working whilst fighting for the rights of people less fortunate. And now kidney failure and looking for a transplant is my next battle, which is the hardest yet, physically, and mentally. I keep hoping and praying that I get a break in life and finally get a chance to live a normal life. And a kidney transplant is what will make it happen for me, I can handle any other difficulties my life throws at me.

What are your worries for the future if you have to keep waiting?

I realise that many people die whilst waiting on the kidney transplant lists. It is a very sad statistic. Also even more people get removed from the transplant list as they become too unwell to go through the surgery, and usually they pass away shortly after. This is my biggest fear.

I struggle with high potassium numbers and I am afraid that one day my heart will simply stop and I will have a cardiac arrest. This fear is always with me and my loved ones.

When you get your transplant what will you think about your donor?

The donor will be forever my personal hero and I would feel endless love and respect for such a pure and selfless soul! Especially it takes a very special kind of human being to become a live donor, an altruistic live donor. Kidney donation is the definition of love and the highest form of altruism. I could never find enough words of deep gratitude to thank such a person, as they would have given me my life back, my dreams and my family’s life would change. The kidney donor would not only save and change my life but the lives of all the people that I love.

What are your hopes for the future? What would you like to do with your future?

I always wanted to help people, because when I needed help the most when I was homeless and scared there were people that came to my aid and changed my life for the better. I have done a lot of volunteer work with various charities across the UK. I have worked with the Red Cross, I was an ambassador for Action for Children for many years and I was elected as Disabled Student’s’ offices at Cardiff university and NUS, to name a few. I really miss working with people and making the difference in this world. I strongly believe that compassion and true understanding of other human beings cannot be achieved without suffering. The more I go through in life the more I empathise with others on a deep level. This is a true gift that my experience has left me with.

Careers wise I am still planning to finish my studies, which due to my illness I could not have accomplished. I dream of going back to my beloved Cardiff University to study LLM & LPC. I continue studying at my own time as learning is my passion and I truly enjoy it.

My newly-wed husband and I are yet to enjoy our honeymoon, as it was cancelled due to my health getting much worse after my living donor transplant sadly didn’t go ahead. This will be on our post-transplant to do list and we are both looking forward to it.

Most of all I am looking forward to simple life pleasures like going for a walk with my fur baby, Japanese Akita- Kimiko. Hiking and outdoors was my hobby but I am so weak now and get out of breath fast. I really miss taking a warm bubble bath! Due to tunnelled chest line, I am not allowed to have baths and I really miss them.

Why should people join the register and tell their family?

It is not common knowledge that OPT OUT system doesn’t mean that all people after they pass away will 100% become organ donors. This is a huge myth, which to admit I myself believed in too.

Regardless of the OPT OUT system, relatives and next of kin of the deceased will always have the final say and can say no to organ donation. Furthermore, less than 1% of all deaths in UK end up in such circumstances that organs can be donated, therefore each and every donor is extremely precious and can save up to 9 lives!

Therefore, sharing your wishes with the loved ones is a must if you want to become an organ donor and save a life like mine.

Anything else you want to say, reflecting on your journey – what it is like waiting, how much it is a part of your life, what a transplant would mean to you.

I don’t know what the future holds, but all I can do is try my best and keep faith that this is not the end of my story.

Diana is now on conservative/palliative care. You can reach Diana at: kidney4diana@gmail.com www.organdonation.nhs.uk