Frequently asked questions.
What do you do for work?
I am a registered nurse currently working in pediatric hematology.
Fun fact – I had the privilege of working alongside my own hematologist and nurses! Talk about childhood dreams coming true!
How did you become one of the firsts?
My sister pushed for a cure and when there wasn’t one available to me, she persisted until a solution was found.. that solution was stem cell transplant. At the time it was only being done for pediatric patients in Canada, so with persistence and dedication I became among the first adults in Canada with Sickle Cells to be cured via Stem Cell Transplant.
Yes people I made ground breaking history!
What treatments were you on prior to transplant?
I started with Hydroxyurea for 2 years in highschool.
Then transitioned to red cell exchange for a total of 7 years (4 via temporary femoral life placement and 3 years via IVAD), in the last year of my treatment I was taking Hydroxyurea and Exjade/Jadenu (due to iron overload) as well. Despite my efforts to stay healthy I kept finding myself in the emergency room.
What’s the transplant process?
Step 1. 1-2 month workup phase (where you’re checked from head to toe to collect a baseline). Take this time to get your medical leave in order and think about fertility preservation.
Step 2. Conditioning phase (admission and central line insertion, 5 days of chemotherapy, 1 day of total body irradiation, 1 rest day then transplant day!
Step 3. Recovery (you are monitored very closely over the next 100 days and for that time you have to stay within 30 mins of the hospital)
Who was your donor?
My older sister was a perfect 10/10 match
Are there any donor risks?
The risks for my sister were bone pain (from the injections that stimulate the bone marrow, she was on those for 5 days).
Electrolyte imbalance (from the apheresis stem cell collection).
Bleeding/pain (from the central line injection site. My sisters line was placed in her jugular).
Collection day is a long one for the donor, they can be hooked up to the machine for 6-8 hrs and might feel unwell afterwards.
How long were you in the hospital for?
I was told that I was likely going to be an inpatient for 30 days, however I was only an inpatient for 2 weeks (and during that time I was allowed to go home in the evening and sometimes had overnight passes).
What side effects did you experience during transplant?
In the immediate 100 days – severe joint/ bone pain, headaches, nausea, vomiting, weakness, fatigue, taste changes, metallic taste, mouth sores, stomach pain, rectal tearing, skin dryness/ peeling, rashes, scalp pain/ tenderness, low blood counts and trust me the list goes on.
Post 100 days – 1 year – headaches, fatigue, weakness, mouth soreness, severe iron deficiency, painful periods/ excessive bleeding, stomach irritation, food intolerances and sleep disturbances.
Can you die from stem cell transplant?
Yes you can die from the complications related and possible rejection of donor cells (GVHD) that’s why it’s not the first line of treatment for sickle cells! In some cases transplant is used as the last option once all other treatment methods have been unsuccessful.
How much does a SCT cost?
In Canada it is covered by our health insurance, what I did have to pay for was accommodation and living expenses for the 4 months / move to a new city.
What can I do to get the same treatment?
The first step is to express your concerns with your current health or treatment plan to you hematologist and together you can decide if transplant is the right option for you. Educate yourself so that you can advocate for yourself. You have to know what’s out there to advocate for yourself.
What is something I should know before I say yes to a transplant?
Know that it is not easy. Not just the first 100 days, the entire year and possibly beyond that. You will experience unimaginable emotional and physical highs and lows which are impossible to prepare for. Transplant is like riding a rollercoaster in the dark, because you have no idea what’s next but you have to brace yourself for it.
Transplant isn’t a quick fix to cure sickle cells. In my opinion it’s an exchange, you’re sacrificing 1 year of your life for a chance at a better quality of life, a pain free life. Yes you may be sickle cell free afterwards but you are now a transplant patient, which comes with its own set of issues.
What is one thing you wish you had a better understanding of prior to transplant?
FERTILITY. Please please please explore fertility preservation and family planning options prior to transplant. Get educated and advocate for yourself!
What was the hardest part about transplant?
I found the hardest part isn’t the days you’ll be nauseous, fatigued or weak, it’s the days you’re mentally defeated and can’t find a reason to pick yourself up and keep on fighting. On those days find your ‘why’ to keep you going.