Eight years ago, what should have been just appendicitis, turned out to be my worst nightmare come true. After having my appendix removed, the surgeon advised me to seek advice regarding my low blood counts. I was sent for numerous blood tests by my GP and a General Surgeon, after which I started seeing a Haematologist.
The first blood tests and Bone Marrow Biopsy she did were inconclusive and it seemed that my blood tended to show three different results: Aplastic Anaemia, Myelodysplastic Syndrome or Leukaemia. Dr. Gunther (Definitely the closest to an Angel I have ever met) consulted me every 3 months, for 6 years, my blood counts always being lower than the previous consultation and never revealing what illness was lurking deep inside.
After numerous treatments – High Cortisone pulses, Mabthera and Retuximab – eventually it was time to seek advice from a Haematologist who specialised in Bone Marrow Transplants. My low platelet counts wreaked havoc… Constant hospitalisations in Flora Clinic for sores and internal bleeding ensured that my body stayed utterly depleted, and lethargy became my “new best friend”. Lonely days passed in a hospital bed, away from family and friends and days seemed dark and empty. Luckily, the staff in Ward G, became family. Their devotion was incredible, and days became a bit brighter again.
Dr Brittain, my Bone Marrow Specialist, had another bone marrow biopsy done (a procedure I fear more than any other procedure). After so many years of guessing, it finally showed that my nightmare had a name: Myelodysplastic Syndrome. Your marrow stops producing cells, and instead start producing the dangerous kind of cells that later could develop into Leukaemia.
It was finally clear, that to survive, I needed a Bone Marrow Stem Cell Transplant.
Unfortunately, a search on the South African Bone Marrow Registry (SABMR) proved fruitless. A very scary situation when there is nobody in your own country who could help. The SABMR then started searching internationally, and after a few unsuccessful candidates, my German Hero was found. The biggest relief I have ever experienced… and still the scariest idea you can wrap your mind around.
I was admitted to Netcare’s Pretoria East hospital, Ward 20, my home away from home. I have to take a moment and compliment all the staff in this ward. Each nurse, each Doctor, each person involved. They made this very, very long stay just that little bit easier to deal with!
All the chemotherapy was a breeze. I didn’t have many cells to break down, so my body was almost used to the damages. I never felt sick, tired or ill after a session. One always has this preconceived idea that chemo is horrible as seen on the silver screens, and no doubt, some people do get really ill, but for me it wasn’t bad at all. The doctors ensured that I didn’t have to feel ill, and this made chemo liveable.
My transplant was done a few weeks later, a simple and very quick procedure. Life saving in less than an hour! Apart from having a couple of minutes of strained breathing, this was the easiest part of the transplant.
So now, the transplant was done. My first question the next morning to my Doctor was “So, when can I go home”. She simply laughed. I didn’t understand… Wasn’t I cured? I felt ok, didn’t I? My counts had to reach a certain level before they could let me go home, was the answer I got every day. I was impatient. Foolish even. Every day was like Christmas Day waiting for my morning’s blood results and after 4 weeks in isolation, the magic words crossed my doctor’s lips. I could go home!
Then the “fun” started… Being in hospital was easy. Being home, wanting to do so much and acting normal, this was the hardest thing I could ever imagine. I felt down and out. I had to take silly amounts of pills, every other hour. I was tired. Deathly tired. I slept most of the time. I barely ate, only getting dressed for my weekly SHS treatment at the rooms. I started losing myself in a deep, dark hole. Hiding my soul from family, just trying to save face AND avoid going back to the hospital at any cost. But of course, I did end up in hospital. Quite a few times. If not for CMV (a type of virus infection), it would be for a septic J-line (the permanent drip you have put into your chest before the transplant) or depression. I had pneumonia twice and even, very recently, had chicken pox at 31. You avoid hospital every time, and thinking back now, I was silly, and could have felt better so much sooner.
After three months of hiding in my hole, I had a good fight with myself one morning, got up, got dressed and tried playing a game with my 3 year old son. It felt better…. it felt more normal… I did this again the next day, and the next day, and the next day… And now, 1 and half years later I am back at work, I am a daughter again, a wife again, a Mommy again, myself again… Almost…
So if you are struggling with the idea of having a transplant, this is my advice: