Some 24 years ago I fainted a few times out of the blue. On the first occasion I went head first through a double glazed window breaking both glass panes and getting many shallow cuts on my head, face and back. When I fainted the second time my mother decided to take me to the doctor to get checked out. Essentially, on both occasions, my blood pressure spiked because I got up too fast from a lying/sitting position and that was why I fainted. At that time I didn't know that my mother had PKD which she inherited from her mother. She suspected that I might have it too so she took me to see her nephrologist, a lady that took care of her when she ended up in hospital a couple years earlier. This was when she discovered she had PKD but neglected to tell me anything about it. My mother is very good at hiding any important stuff from us; 'she doesn't want us to worry' she says.
After several tests it was confirmed that I had a few cysts on my left kidney, one of which was 2cm in diameter (just a bit less than an inch). It meant nothing to me, this diagnosis. The doctors told me nothing can be done about it, I can live a long and healthy life, look after myself, don't do any heavy lifting (!) and if the cysts ever do bother me they can take them off but they might grow back again.
I decided to do nothing and let life take its course. Several years later I left home, moved to London, had a new doctor who sent me to see a nephrologist for my PKD to be under his care and that was it. I had yearly check ups and nothing really changed. I was a normal 20 something girl, I smoked but not much, had alcohol but in moderation, coffee daily, I ate what I wanted and didn't really look after my health in any special way. I was as healthy as I could be taking only a small dose of blood pressure medication to keep it under control.
But I am a curios cat. The internet was not so common in the mid- nineties so I ended up in my local library one day checking out medical reference books to learn more about PKD. There was not much information at all but what I did find horrified me especially a black and white photo of a PKD kidney. I didn't know what to do with that information so at my next hospital appointment I started asking questions. It's easy when you know what questions to ask, to get the information you need. The doctors were always very relaxed about my condition, saying my labs were great, my kidneys were in good condition and that I should worry less. Easy for them to say! I had already made changes in my life, stopped smoking, drank even less, ate much better food, lots of fruit and vegetables, some meat, and probably too much chocolate.
Then one night shift in the new century I was exploring the internet which was so new to me, I started looking for information on PKD. What a revelation! I stumbled on a PKD support group here in the UK and through that learned about PKDiet. I have never looked back. Here it was at last, all I ever wanted to know about PKD and so much more. Over the following years I made many small changes to my life, my diet, my way of thinking about this disease. And throughout all this time my doctors never once said anything about my kidneys losing function. My questions were always answered enthusiastically 'your kidneys are just fine and working well', they never gave me any reason to be concerned. This being the UK I had no access to my lab results, they were so secretive about them but I eventually managed to get some results from my GP and indeed they were not too bad. I would mention the alkaline diet looking for their approval but they never really cared about that. I was just another patient among a couple of hundred others that they had to see that day so let's get things moving. Next! Perhaps if I saw the same doctor over the years I would have been able to develop a relationship, where the doctor would know me and I him or her and I wouldn't have to introduce my self every single time and tell my life story. Sadly, that wasn't the case.
In all this time I felt fine. My check ups at the hospital got a bit more frequent, every 8-9 months or so but, I never had any pain, infections, ruptured cysts or visible blood in my urine. It was difficult to get pH testing strips in the UK so I ordered from the US. I was nearly always borderline 7. My mother's health deteriorated though and she started dialysis around spring 2005. I was so naïve, I though if this is happening to her now then I have at least another 20 years before I get to that stage, if ever. I knew PKD takes a different course in every person but believed I had nothing to fear.
It was December 2006 when I learned the truth. For the first time a doctor I saw told me that my kidneys were in such a decline he predicted I would be on dialysis with in the year. I just sat there not knowing what to say. He talked on, how I needed to start thinking about what kind of dialysis I would like to have, that I should start telling everybody that I need a new kidney, he was showing me a graph he made that showed the pattern of my kidneys decline. It was all a blur. I asked, how could this be, eight months ago I was told I am in excellent health now dialysis is around the corner? I knew I was feeling tired for some time, I recently lost some weight very rapidly but I put it all down to working hard in my new job and I welcomed the weight loss, I needed a bit of that anyway. I left his office unable to talk. I was to come back in 4 months. All I could think about for several months after that day was PKD, what am I to do, what about my job and I never want to see that doctor ever again. At first I slipped in my alkaline diet. I thought what is the point, I've tried it and still I'm staring at dialysis. I was afraid of my future, I lived away from all of my family, my few true friends had busy lives of their own and my boyfriend lived in denial about the seriousness of my condition. I had nobody to talk to and, looking now from a distance, I was probably clinically depressed.
I don't remember what it was that woke me up from that. I guess it might have been a look in the mirror and realizing that I look old and haggard and overweight at the grand old age of 40. I was tired all the time, all the energy I had went on working 12 hour shifts, bills to pay and all that. It could have been that at my next hospital appointment I saw a doctor who said it's not the end of life, there is always hope and that my kidney function is stable. It gave me hope and strength to start looking after my self again, but I never truly recovered emotionally from those 4 months of worry. Life went on, I got anaemic, had iron infusions, started some new medication, epo and sodium bicarb and alfacalcidol, statins, vitamin C, B12 and folic acid, and I stuck to the alkaline diet as best I could. It all helped to make me stronger but my function declined further and in spring 2008 when it hit 20% I was listed on the cadaver transplant list. It was only in Jan/Feb. of 2009 that my kidney function got really bad after I had the worst flu I had ever had so I got encouraged to start thinking about dialysis options since I didn't have a live donor. I didn't know what to choose, after all it's not like I'm choosing a new hairstyle. It was going to fundamentally change my life and my biggest worry was how to tell my parents. The choice was eventually made for me in August when I was called in for an emergency chest line catheter to be inserted. My creatinine was at 635, urea at 23 and I was at 6% function. I don't remember the other blood values. It was a beautiful summer Wednesday, 12th August 2009 when the catheter was inserted and I had my first dialysis. I felt a difference after just 2 sessions. Lighter and brighter, more positive about the future, I settled into a routine, 3 times a week evening shift, read a lot of books, I felt cleansed and full of energy.
Five weeks later it happened at 6:40pm. There I was 20 minutes into my dialysis, ordering my tea when a male nurse I've never seen before (or since) asked for me, came over and whispered 'it seems we have a kidney for you tonight'. It still brings tears to my eyes thinking about that moment. He said 'final tests are being done but it is yours and I'll come and confirm in half an hour what you should do'. The head nurse was looking at me smiling, I couldn't speak or think, she told the other nurses discreetly so they came over one by one to wish me luck. Indeed half an hour later that same barer of good news came over and told me where I need to go, shortened my dialysis, took me off heparin and wished me well.
I have often wondered what it would be like to get 'the call' and as luck would have it, it wasn't a call at all. I tried calling my boyfriend to tell him and my battery just died. Ye Gods, it always happens when you really don't want it to. One of the nurses handed me their phone so I could tell my boyfriend to pick me up. I was fully expecting the surgery to happen that night. It didn't of course; I had to go through various tests, blood, urine, x-ray, ECG, IV antibiotics, IV anti rejection meds, various forms to fill and sign, never ending really. All I really wanted to do was to lye down and go to sleep, I had been up for 20 hours, I was hungry and thirsty and tired. I wasn't worried or scared, happy or sad, excited or not, I felt nothing – until the morning nurse came at 8am and said 'it's time, they are waiting for you'. I walked to the theatre, same one where I had my chest line inserted. It was 8.30am when I lay down on the table and went to sleep. I woke up at 2.30pm, someone said 'she's waking up' and I went back to sleep. I woke again a few hours later on the ICU ward with a huge smile on my face, my hand went to my belly, I felt the thick dressing and I knew all is well. It was 15 September 2009 and it will forever be known as my second birthday, or Walter's day I as I call it. Yes, I named my kidney; it took three days to accept that the only name I could think of was Walter. Why, I don't know nor do I care, the kidney chose it.
I stayed 10 days in hospital, 3 more than I needed because I had to have the chest line removed before I got discharged. It did me some good to be away from home and in a safe environment where doctors and nurses were on hand. Later that week started the cycle of visits to the TX clinic. I got to know the hard working nurses, the many doctors and consultants that take care of us; from every one of them I learned something new. For example, I always thought there is a limited number of hours allowed between harvesting a kidney and transplanting it into the recipient, and there is, but I was shocked to learn that my kidney was 27 hours on its own! He was put to work though so as not to just sit on ice. He must be a great kidney. Our match is 3/6. This is all I know about it.
The first year was great but not without its problems. There was the low white blood cell incident, twice; the borderline rejection, once; the two biopsies (both done by that very same doctor that forecast dialysis by spring 2008, he is actually a very good man and I've learned to respect him) the allergy to some medicines, twice; the side effects, tremors, hair loss, my hormones all over the place. My renal clinic became a regular haunt and I spent as much time there having various test, treatments and visits as I did as working and socializing (and I did a lot of that too, making up for lost time). And I loved and cherished every moment. I wish I kept at least one of the 53 staples I had, to add to my kidney diary that I have kept ever since, detailing everything. After a year I was cleared for travel so I went back home to visit my parents, came back two weeks later and brought shingles into the mix. Now that was the most painful thing ever! Almost four months on and I still have numbness in the area where blister appeared, on the sole of my right foot of all places!
I visit the clinic every 4 weeks now and I almost miss the more frequent visits, almost.
Everybody who has had a transplant will tell you that their life changed, for some it's for the better, for the unfortunate rare it's for worse, but change it does. What nobody can tell you though is just how much it will change you and in what ways.
For me the change has been so positive, I look and feel better obviously but it is the inner change of my core being that I didn't expect. That I could say with full honesty that I am happy every single day, even a rainy, gray, cold day cannot dampen my spirit. Most days I will suddenly realize 'I have someone else's kidney inside of me', my hand will pat the scar and I smile, still in awe of the medical wonder that I went through.
I wake up every day and give thanks for having my new kidney, for being so fortunate to be chosen to get it, and I say a prayer for the donor and his/her family.