It was time to visit a nephrologist. And I did. It really hadn’t struck me, the magnitude and implication of what I was going through. Two weeks after the discharge from the hospital and I had not seen the nephrologist yet. And by now the situation was getting bad.
Did I tell you my name? My name is Wothaya Murage and this is my story with kidney disease. In sharing, I hope others will begin to understand what a kidney patient goes through in their quest for a healthier life.
There was a time I threw up anything I ate, and I grew so weak to a point I could not walk on my own. I was wheeled to the doctors consultation room , and these words still linger in my mind.
“Madam , if you don’t take care, by June next year, you’ll be on dialysis.”
And before June came, there was February. The bombshell was dropped after running some tests.
” Time for dialysis.”
I may never tell how I found my way home. But all I remember is crying incessantly and wondering who to tell . Eventually I did . Thank God for good friends because they offered me the greatest support.
Dialysis is an expensive affair. It took the generosity of a friend to pay for my seven months of dialysis as arrangements were made to enable a transplant.
It was agonizing to see many people die during that period of dialysis. People we had bonded with. And it made one the weaker to imagine you could be the next victim.
It was a long , arduous journey from Kirinyaga to Mathari hospital in Nyeri, which I did twice a week.
My personal resolve was to live one day at a time. And two. To make lemonade out of lemon.
I took my trips as outings as well as time to make new friends. There were lows.
Many of them. Like the occasional blood infection that would bring me down with fever. I would reach out to God in such moments.
Fast forward. September 2015. The amount required to undergo the necessary tests only meant we had to raise the funds through friends and family. A harambee down the line and thousands of tests run to get the most suitable donor.
For a kidney disease patient, the greatest hurdle may not even be the finances as the availability or lack of a donor.
This is when every blood relative I know has any other blood group than what you have. And your calls will go unanswered if they suspect it is the kidney story you want to share.
There are certain indignities in this life that you cannot wish on anyone.
The learning curve has been amazing though.
My daughter was my saving grace. A miracle of sorts sent just on time.
She had just turned twenty and met all the conditions for the kidney donation.
Accompanied by a friend, and with the advise of so many friends and kidney transplant patients we had met, we set off for Apollo Indraprastha, in New Delhi India.
Ten days down the line and all tests were done. All seemed well and all the clearance even from the embassy was done.
One little hurdle. Can we see the oncologist for some little advise and clearance. From my little knowledge of English , I know that an oncologist deals with cancer, so why an oncologist?
There was no indication whatsoever throughout our tests that something was amiss.
The visit devastated us.
I heard about a ‘paraprotein’ that was suggestive of multiple myeloma.
Jeez!!. My head whirled and my heart beat fast. My daughter cried and I still cannot narrate the emotions.
What followed numerous tests was a change of the treatment plans that we had and an emotional rollercoaster that tested my limit.
The waiting was long and winding.
Treatment in India takes its toll on patients who go in thinking that their stay is cast on stone. When there is any slight change, it re-arranges plans.
With so many expensive tests to undergo that were not budgeted for, our money ran out. It happens often than we care to know. And in a far away land, Kenyans struggle to make ends meet.
Folks back home had to hold yet another harambee.
Summer went and winter came. And with it, frustration crept in. We cried rivers of tears. Because the transplant always seemed so near yet always so far.
All we did were tests, more tests and more tests. To kill the boredom, we bought a game of scrabble and with a Nigerian friend, Obi, we played Kenya vs Naija. Kept us sane.
Kinacho mwanzo kina mwisho.
After the many many tests, the myeloma was scaled down. It did not warrant chemotherapy as had been earlier prescribed.
And so on Christmas eve, 2015, as we sang Christmas carols in a hall within the hospital where a Christmas party was organized by a kind doctor (my heart sings for this kind of kindness), the best news I had ever heard in a long time was relayed to us.
We were free to go for the transplant.
And on the 19th of January 2016, we successfully went through it.
Two months down the line I was back home.
I thank God.
On Jamhuri Day the Ambassador to India invited us
So many lessons learnt.
Prayer
I can tell for sure that prayer , more prayer and more prayer kept me going.
I asked my friends to pray for me… It made me shed my fear, my anxiety, my desperation.Nothing weighed me down as long as I prayed about it
Family and Friends
They are invaluable. They came in strong and stood in the gap. In prayer, in financial support, emotional support…we looked forward to the evening calls from friends who wanted to know how we were doing.
Did I mention at one time I was almost suicidal with frustrations? My friends and family checked on my nuclear family back home. They prayed and provided for them. It is an invaluable gift that I can never muster the words to say thank you.
I felt cared a such a deep way. Never take it for granted that you have such people on your life.
The power of music.
I have always been a lover of music. Both secular and gospel but this time round it played a special purpose.
It just soothed and eased my mind of any stress and discomfort I may have had.
It walked me through the journey and my personal mantra of living one day at a time. .
One day at a time, We shall Overcome Some Day, Ningukuona by Hellen Muthoni, and this one song by The Martins, The promise. This song, sent to me by my former student played in my mind hours before the operation and the weeks after. And to this day the song still encourages me.
Embrace Positivity
Listen to people who encourage you and avoid any one who brings you down with negative sentiments.
Ignore nay sayers as if they were a bad omen. People who who will only tell you how thin you’ve grown or how black you’ve turned are not your friends and do not care for your emotional health. You do not need them at this time.
Those who remind you that their cousin died after a month of the disease, tell them their time had come and turn away because they will infect you with the grim hope.
Of Housewife Tales and Never Ending Advice?
Being an invalid makes every relative and friend a doctor.
Be prepared to get lots of advice and mis-advice on diet and medication .
You will be told of wonder herbs and soups. You will be told of magical eggs that heal kind and queens in far away lands.
Please keep off and consult a doctor on this.
Most of these “supplements ” may turn out to me more disastrous than helpful
Listen to your doctor. I still shudder when I remember the day a stranger came to my house with some concoction claiming to be sent by God…nearly forced me to swallow it…and it took the intervention of a security officer to drag him out of the house.
Did I say loud enough that you need to put God first in everything. I am a working wonder of Gods magical hand.
If you are going through an experience in your health journey that makes you question even the air you breath, just remember you are not alone.
