I found out at the end of May some hopeful news. My specialist called me to say that my sister was a good match. Not a great match and there was a huge area of concern regarding a conflicting antibody, but it was a possibility. The plan was that my husband and my girlfriend (who turned out not to be a match) would go on the Paired Exchange Program where they give their kidneys up for someone else, if that person has a donor that is compatible to me. So they do a swap, so to speak, and in turn help two people needing a kidney. It is a very successful program started here in W.A.
My specialist wanted to see what else was out there in case I could find a better match than my sister. I called the person in charge of the Paired Exchange Program and asked if indeed it was possible to have two people on this list to increase my chances and she said yes. I left for my holiday inspired and hopeful that there was something in the pipeline toward my goal of receiving my new life, the second time around. The Exchange Program holds the kidney lotto every three months. My donors hadn’t completed their work up for me to be able to go on the July list so the next list will be October. I had a plan, or so I thought.
My holiday was incredible. A dear friend of mine who was also on Peritaneal Dialysis and sadly passed away from complications of the treatment, always encouraged me not to let dialysis rule my life. She talked to me about her travels with her husband in their caravan up north and explained dialysis was manageable and to give it a go. We have always travelled and every year we do the pilgrimage up north to the sun, surf and isolation. One advantage to Peritaneal Dialysis is you can take it pretty much anywhere.
I organised my dialysis stock to take with me. If you can just imagine, when I do manual bag exchanges, I do them 5 times a day and the bags are 2 litres each so times that by 30 days. That’s a lot of extra weight to carry so we packed as many bags as we could under our mattress in our caravan which was about two weeks worth, then organised a delivery in Exmouth, half way through our trip. I was so pleasantly surprised as to how well I managed with dialysing on the road. We would just stop every few hours and timed it with our meal breaks. As long as you have running water and a clean surface area, you can dialyse.
We found our ultimate camp with a surf break out front, epic snorkelling in coral gardens and fish galore. We camped right on the beach so it was easy to have beach time then pop in the van to to a bag for half an hour then back out enjoying the beach again. We found our paradise and for a whole month we were so happy to finally be on a holiday away from home. We had the caravan packed last winter to head up north but my kidney finally failed just as we were about to leave so this holiday meant so much to us. I was so proud of myself of how far I had come and so proud of Dan for helping me get to where I am now. We enjoyed every minute of every second we were away.
We drove back to freezing cold weather, work and bills to pay. Reality set in and I felt really sad to be home. I picked myself up and emailed my specialist to say I was back and ready for a transplant! I presumed things would be moving toward me getting on this list in October. I felt refreshed, fit and ready to tackle a major operation. I had some bloods sent to the UK, back in December, as they are doing some research on the disease that killed my kidneys in the first place. The disease is called Haemolytic Uraemic Syndrome or HUS for short. His email back in these exact words are as follows; ‘The bottom line of your next transplant option really comes down to the gene testing. If you do have a mutation in the HUS gene, depending on what it is, it will have an impact on your next transplantation, including source of donor. If it turns out that you have a certain gene mutation, the whole pair exchange idea might not eventuate. I presume that my colleagues try to avoid unnecessary investigations until your status is cleared, further work-up might not be appropriate if you have a “bad’ gene….hope it makes sense’.
Um, no, this does NOT make sense. Is he saying that I might not be eligible for a transplant if the results come back and I do infact have a mutant gene? Am I facing a lifetime of dialysis? How can he expect me to accept that this could be a possibility? Is it really what he means? I’m confused, scared and the worst part is, I won’t know until these results come back from the UK and I don’t know when that’s going to be either. I have emailed him back basically saying the above and asking, begging him to have faith in me and my body and to acknowledge that I had a successful transplant for 13 years. Ive had HUS my whole life so if it didn’t affect my last kidney, why are they so scared it is going to affect my new one? I have avoided calling him as I am seeing him in 4 days and will get answers then. I want to know why they are basing my transplant status on this one result? I would expect it would affect the treatment of my next transplant but not discount me from even getting one.
So, how do I deal with this? If I overthink it, I’m living in the future and by doing that, it allows me to get anxious which is definitely not going to help my situation. I can’t ignore this information but me reading it over and over again, trying to make sense of it, doesn’t help either. I did call the Patient Liaison Officer who told me that I need to see this time off the anti rejection drugs and on dialysis as a good thing and that it’s giving my body time to regenerate. Of course she couldn’t tell me exactly what he meant but she said to be calm and even if it takes 18 months, that I will be ok. Will I?
Of course I’m going to be OK but have they forgotten I was on dialysis for six years last time and the thought of not knowing how long I could be waiting this time is just so daunting. I’m trying, trying so hard to stay positive but this is a testing time for me. I met a wonderful woman up north who has been my source of inspiration as she is full of encouraging words that make sense to me. I am following her advice as she gives weekly insights on her Facebook page that can relate to anyone. Its all about the law of attraction and I understand that concept fully as I honestly know I am the person I am today because of it. I surround myself with people who love themselves as well as me. I’ve attracted a man that supports me 100% but also allows me to stand on my own two feet because at the end of the day, I’m the only one that can get myself well again. I’ve created a magical life for myself and am lucky enough to have found what makes me happy. I’m trying to stop my negative thoughts in their tracks and start to vision the life I want to live again. Travelling with my love, exploring new beaches, new forests, meeting new people, learning new things but mostly living in a healthy body.
I’m going to have to stop asking myself what if, because I don’t know the answer. I do know that I have all the support in the world and I don’t want to let all those people down as they honestly believe I can get through this. I found this quote recently, ‘Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle.’ I have to believe this to be true. Life has its challenges for everyone, not just me. I can get through this, I will get through this, I have to get through this. Life is good.