I have penned so many stories recently (in my head) which have never come to light. As a stage 5 CKD patient with 2 young children and a work abroad husband, I’ve had to step up. It breaks my heart to see my children especially my daughter, at 11, acting as my carer most of the time. When I think back to what brought me to where I am today, I wonder if I am the only one to have suffered such misfortune (if I can call it that).
I’m a tall, black, (some say pretty) verrrry attractive woman (ex-model, ex-actress, ex-singer, ex-activist etc you name it but I’ll never be referred to as ‘ex-mother’ because I intend to be around for a very long time yet). I’ve lived life to the fullest and thought that there was nothing more to experience out there. Then it hit me!!! And it hit really hard.
That day in 2009( serious illness in November 2008), I was told I had renal failure and had to undergo Haemodialysis, I cried my eyes out; within a few days, I had a neckline. I was in and out of the Salford Royal, 3 times a week. I hated every minute of it because of how I felt afterwards. I was lucky to have my older sister with me, who prepared all my food and ensured the children were cared for. I was also lucky to have 2 friends who also took me to and for the hospital on the days I had to go in for dialysis. I went through a period when I was told I would need to be mapped for a fistula. Imagine the fright I went through, thinking of how I would look with the fistula on my arm (oh yes, I know, I’m vain). After about 3 months, I was told that my renal function had improved and no longer needed dialysis. I immediately went back to work.
In 2010, the same illness struck again, this time, I thought it was the last time I was ever going to see my family again especially my kids and I fought to stay here, for them especially my daughter. I’m happy I did fight to be here despite all the trials I’m having to go through, it’s been worth it.
I have not allowed this to dictate how I live my life. I still get up in the morning and feel like screaming but that’s only temporary moment. I can still turn heads when I walk into a room (that’s why the fistula couldn’t have worked for me:Vanity? I agree).
When I was told to come in for the first PD insertion, my friend came to pick me up from home. I was told to come at 7am for the procedure. I think my friend was the most scared of both of us because she came to pick me up looking panicked and dishevelled. When we got to the hospital, the doctor came to do the pre-op assessment, he must have thought she was the patient because I was all dressed up, calm and collected, he turned to her and addressed her as myself. We told him I was the patient. It was hilarious!
I have always looked at the bright side of things and I think, you as a new CKD patient can do it too. You just need to focus on what is good in your life and be grateful for getting a second chance of righting any wrongs or rebuilding any bridges previously burnt. There’s nothing more rewarding than waking up every morning and seeing the sun.
My story doesn’t start and end with CKD and I’ve been asked, cajoled to write my story because a lot of people will benefit from it but the time isn’t right yet. There are more interesting chapters to be added and they are yet to come.
In the mean time, I will share my CKD experiences and other funny stories with all of you. This is only just the beginning. I hope you can all come on this amazing journey with me.
Excellent, especially the positive, life-affirming messages at the end. Already looking forward to the next instalment and thanks for taking the time to write this one.
Thanks Rob for the comments. I already have the next one waiting. 🙂 It’s good to be a part of something like this and to help others like me, who have to go through this alone. I hope I can bring some comfort to someone who doesn’t know what to expect. I have been there and know how it is.
a very brave lady all the best to you
Thank you so much for taking the time to read my post.
How are you Estelle? Used to cut through the Polygon in my younger days
What a great message for all our group to follow Hilly. Hope you contribute regularly
Thanks for your kind comments, Tonyjoe. I do intend to contribute regularly. The floodgates have been opened. LOL
Hilly, what a heart warming story. I can totally understand the body image feelings. I to am a tall lady, was quite a looker ( so i was told) , when younger & feel occasionally self conscious about my fistula. But I do enjoy swimming & pools so it is a small price to pay for that fun. Well done & good luck .
Heeheee. I couldn’t swim to save my life. Thank you very much for your kind comments, Helenj. There are much more where this came from.
iam awaiuting a fistula as first onbe went wrong then diaylis so scared
It’s okay to be scared and anxious, Estelle, you wouldn’t be human otherwise. It is the fear of the unknown and everybody has been through it, at one time or the other. I went through it with the Tenchkoff insertion; I was really scared out of my wits the second time cos I didn’t know if it would work. I had to put a brave face on for all the people who depend on me emotionally so I don’t make it worse for them. All you need to do, is channel that anxiety into something positive like that you’re being given a second chance at it, some people didn’t. Did you read of the CKD patient in Wales who died before his wife could give him, her kidney as a wedding gift? What wouldn’t he give to have a chance with his young wife? What I am saying is that it’s okay to be scared, you are not a superwoman. I would be scared too. Du courage as the French would say. I’m here if you want to talk. Good luck! Let me know if you need cheering up. 😀 (I could talk your ear off) LOL
Do you have anybody with you? Where are you having it done? Salford Royal? Let me know if you don’t have anyone and I’ll be there. Don’t be alone.
thank you so much for your kind words i will keep you informed were you at salford royal. my consultant is rosie donne she has been fab