Family! Families of Kidney disease patients or people with other organ transplant related diseases, what can I say about them. How can I describe how we feel and appreciate how much their support means to us during our difficult periods.
There are some that will take on or carry the burden of the disease. Be there to support, cajole and push when things get really hard. There are those that will run 100 miles away as soon as the going gets tough but this group of people are not doing it out of malice but because they don’t want to see their loved ones suffer.
However, there’s this reprehensible group who, with a heart blacker than black, would pack up the relationship and abandon their partner to their trials, go with someone else and never look back. This can be devastating. Let’s not forget the children who stand beside their parents no matter how scared they are, of what their parent is going through. I saw them every day whilst on dialysis and I still do at the transplant clinic.
I fondly remember this couple whose relationship I admired whilst I was on dialysis. The woman was disabled and couldn’t do much for herself but the husband or partner was so patient and supportive of her, that I just had tell both of them. He laughed and told a joke about being ordered around but you could see the love and dedication in the way he supported her throughout the time she was on the machine. I learnt a lot from the people I met during dialysis.
I was driving back from my hospital appointment today and I was thinking about a conversation I had with a lady. It dawned on me that there are people in the world who would do things selflessly because of their love for their family. I didn’t want to burst into tears because I do that easily these days but her story so moved me that I wanted to hug her and thank her on behalf of that member of her family. It was as a result of this family member she became an organ donor. She also works on the NHS and has always been very understanding of our condition. I never knew it was as a result of her own personal experience.
Today, I could see why she was like her lovely self. She understood because she was in that situation although thank God, everything worked out well for her and her family. I will interview her at some point because I think it will be nice to hear these stories. They are stories that inspire others.
I digress a bit. This piece was supposed to be about my family and how much their support meant to me over the years. However, one has to always write the way it flows. LOL
My family! I know most people reading this who really know me, would understand when I talk about my family. They are all I’ve ever known through the good and the bad times, they have always been there. When I just want to vent, laugh or cry, there’s always someone there to listen to me.
A special tribute to my daughter, Rox, who stepped up to the task to support me when I was on Home Haemodialysis (HHD). I had a tendency to pass out, bleed or develop clots inside the tubes. My daughter, 13 at the time, was the one who would come to staunch the flow of blood, perform a wash of the clots from the tubes, replace them or help me put my legs up when I am passing out, get some ice cubes to stabilise me.
There was an incident I remember so well but this was in the hospital. This incident made me realise how strong my daughter was. I had just started dialysis so I was in the hospital with her on this day. Since I was going to be 4 hours or more in the hospital, she came with a novel. After I had been put on, a few minutes later, I started passing out. In a very weak voice, I told my daughter to call the nurses across the room and tell them I was passing out.
My daughter went over quite alright but because we had taught her not to interrupt adults when they were having a conversation, she stood there, waiting for them to finish talking. I had to shout out because I was starting to fall unconscious. At thatmoment, I thought “Unbelieveable” If I had been in her place, i would be screaming for the nurses. No. She was very calm.
The nurses immediately came over to help me. Meanwhile, whilst the whole drama was going on, remember that book she came into the hospital with, yep, she went right back to reading the book…Calmly!! The nurses said she has nerves of steel and would do really well as a doctor. It’s one of the things I tease her with these days.
Her brother is the direct opposite and will be a bunch of nerves once he sees me suffering so it was always Rox, who could ever handle any crisis. It is hard not to wonder how families cope when they have a loved one in so much pain. Their capacity to love in the light of all the tribulations and all the hospital appointments, the not so good days and the very bad days, just shows how much their love and patience runs deep.
Since my kidney disease journey, I have met a lot of people and I have had the opportunity to speak to most of them. I pray I can be their voice and make their words and trials, human so people can see that whilst we suffer in silence, we hurt as much as a normal person does.
On behalf of all kidney disease and transplant patients as well as other patients waiting for an organ transplant, I will like to use this opportunity to thank all our families for their continued loving help and support through these difficult times.