Hello Friends!
I am so happy to be writing this post
(although it’s taken me a number of days to complete it) because it feels like
I have overcome the most momentous challenge and I am finally on the last tough
road to recovery. The transplant process was so unbelievably physically and
psychologically challenging both during hospitalisation and now while I am at
home. I’ve decided to split this process into two parts – the first regarding
the transplant and hospitalisation and secondly what my life is like post
transplant.
On Monday the 3rd of May, I was
admitted to Netcare Pretoria East Hospital Stem Cell Unit and my transplant
journey began, this was to be my home for the next three weeks. My room was
similar to the room I had when I was admitted for my harvest and the same
procedures in terms of isolation applied which I found so, so incredibly
difficult this time. I was fortunate enough to have a view of a dam and golf
course this time which at least let me remember that there was still life outside
of the tiny four white walls.
My veins are very difficult to locate so to
have an IV line in my hand or arm to allow various medicines and of course my
stem cells to be administered was completely out of the question. You’ll
remember when I had my harvest, I had a central line put into my neck and
another one put into my groin, this time the Doctor decided to place the
central line just below my collarbone. This procedure was PAINFUL in comparison
to the other lines I’d had previously. Local anaesthetic is injected into the
surrounding area and the line is then fed horizontally into a vein in your
chest- the line is about 15cm long and I could feel it almost grinding against
my collarbone, not comfortable! Although having the central line put in was
very unpleasant it was actually far more comfortable than the previous two
lines I’d had and allowed me to move around a lot more and lie on both sides
when in bed. I also received plenty of medication later in the afternoon to
prepare my body for chemotherapy that I would be receiving the following day.
One of the most challenging parts of the
transplant process was the invasiveness and lack of sleep. The nurses have to
check your vitals (blood pressure, temperature and oxygen saturation every two
hours throughout the day and night, this is absolute torture when you are so
exhausted and just want to sleep.
Here is a basic outline of day in the life of
a transplant patient whilst in hospital:
4am – Blood drawn from your central line to
check count levels etc (+- 20 min procedure each day)
5am – Bed linen changed and room cleaned,
vitals checked and drips changed
6am – Medications given and drips changed
7am – Vitals checked and certain drips
changed
8am – Breakfast
9am – Vitals checked, visit from dietician
10am – Doctor doing ward round does
physical check up and alters medications etc according to the patient’s
needs
11am – Vitals checked and visit from
transplant co-ordinator followed by physiotherapist
12am – Lunch and visitors allowed
(completlely sterile and dressed in surgical gear). Oral medication given
1pm – Vitals checked and drips changed
2pm – Try and sneak in a nap with ear plugs
firmly in place as the ward in INCREDIBLY noisy
3pm – Vitals checked
4pm – Try and be sociable with visitors!
5pm – Vitals checked, blood glucose check
and supper served
6pm - Shower time (very difficult being
hooked up to all of the machines and all of your drip lines)
7pm – Vitals checked and drips changed
8pm – Night time oral medication given
9pm – Vitals checked
10pm - Drips changed
11pm – Vitals checked
12pm – Hopefully sleeping!
1am – Vitals checked and drips changed
2am – Hopefully sleeping!
3am – Vitals checked
As you can tell there is are very few
chances to sleep, if at all, and I think this is what really broke me during my
stay. There is nothing worse than being so desperate to sleep and not being
able to. Every time your vitals are checked, the lights are turned on and you
are woken up, same goes for when the drips are changed. Mental torture! I think
throughout my journey as a cancer patient I have remained very upbeat and
positive and never really had days where I cried or broke down, my time in
Pretoria recently completely broke me and I felt like an absolute wreck. I’m
sure it mainly had to do with the lack or sleep and the enormity of the
procedure I was undergoing but I sobbed and was angry and frustrated- the
minutes seemed to creep by and the days seemed endless.
On Tuesday I began my intense chemotherapy
regime, the treatment generally only lasted for about 3 hours a day and was
administered through my line. The reason for giving a transplant patient
chemotherapy before receiving their transplant is simple- it kills off all of
the weak stem cells that are unable to fight against cancer cells effectively
so that they can be replaced by the new, stronger stem cells that are refreshed
and rejuvenated soldiers ready for battle! I had chemo everyday for 7 days and
each 2 days I experienced different side effects according to the specific
chemo I was receiving. This ranged from having to scrub my skin with soap in
the shower to avoid extreme itching, to having twice daily ECGs. I was given
plenty of side effect combating drugs through my line so I didn’t feel too bad
during the course of various chemos. The chronic fatigue was starting to make
it’s presence felt though unfortunately.
Tuesday the 12th I was given the
day off to rest as my transplant was scheduled for the following day.
Transplant day is known as Day 0 and unfortunately friends, the process is not
very exciting or gory! No surgery, no pain, no blood! You receive your stem
cells intravenously and it generally takes about 20 minutes per bag. A Stem
Cell Technician arrives in your room with a special water bath to assist with
the defrosting of the stem cells until they reach a temperature of 36 degrees Celsius,
the bag is then connected to your central line and infused. Your vitals are
then monitored every ten minutes to check for safety in case there is any form
of reaction to the stem cells. I had so many cells harvested that my transplant
was done over two days, on the first day I received 3 bags of stem cells and on
the second day I received 2 bags of cells.
Nurses helping with stem cells
Stem cells being defrosted in a special water bath
Receiving my stem cells
For the next 5 days I felt chronically
fatigued and generally quite sick and weak, had no appetite and was still
suffering from a very rare infection in my oesophagus, which made eating and
drinking extremely difficult. I actually wasn’t even able to swallow my own
saliva and I kept bringing up blood. It was absolute agony and felt like I had
been stabbed in the chest with a knife. I was on the maximum doses of Pethidine
and Morphine and I was still in pain. Many of my medications were changed to IV
alternatives as I couldn’t swallow at all but some of them still needed to be
taken orally. The nurses would crush them to a fine powder and then I had to
put the powder under my tongue and just let it dissolve over time. The taste
was horrendous obviously but the most frustrating part was not even being able
to have a sip of water to wash it down when I was so desperately thirsty! From
that day on I was put onto TPN feeding which is basically where you fed a
liquid diet through your line. From the 23th of May I gean to be
able to swallow liquids and clear soup, this was a huge break through for me
and I was beyond grateful!
Special visitors
I had a few red blood cell transfusions to
help with anaemia and also to keep my counts up to aid the grafting and healing
process, I also received platelets for the same reason. Eventually my white
cell count (the little infection fighting superheroes) began to rise slowly
which really lifted my spirits because it meant that my cells had grafted and
that my transplant had been successful and I knew this meant I was getting
closer and closer to being discharged. On Monday the 25th of May I
was discharged from the transplant unit and allowed to go to a Bed and
Breakfast in the area.
On Friday the 29th of May, I
went for my first post transplant check up with my Haematologist, Dr Brittian,
who checked my blood results from a test I’d had half an hour before and he was
astounded by my counts! He was so excited to see that I had made so much
progress in such a short time frame and much to our surprise he allowed us to
return to KZN the follwing day! Most autologous (self donor) transplant
patients need to remain close to the hospital for a minimum of two weeks for continuous
check ups and blood tests just to monitor infection levels etc. Allergenic (a
patient who has received donor stem cells) need to remain close to the hospital
for a minimum of three months for the same reason, the reason the time frames
are so drastically different is because the risk of infection and rejection for
allergenic transplant patients is far greater than that of autologous
transplant patients. Needless to say- I was beyond ecstatic!
Dr Brittian and the nursing staff gave me
very strict instructions regarding precautions I needed to take to steer clear
of infections and how to take care of myself. I will go into this in more
detail in my next post!
Thank you sis so much for this
Lots of love to you all
xxx
