Hi everyone!

Having fully recovered from my recent hospital admission, i am now ready to openly share the up to date details of my stem cell transplant (SCT) journey. I have tried to capture photos and a video to make it less dull and more informative…

As you may know I was recently in hospital being treated for neutropenic fever (see my last post).. during that admission I successfully had my stem cells collected! To begin with I was so disheartened with my hospital admission, I felt miserable and had very little hope that the stem cell collection would be successful.. especially as my blood count was not coming up enough for my stem cells to be collected…

As i have awful veins (thanks to all the chemo drugs i’ve had) I needed a vascular catheter inserted (a plastic tube inserted into a vein using the guidance of an ultrasound)… the initial plan was to have this inserted into a vein in my groin (see my last post), however on the day the anaesthetist decided my white blood count was too low, to reduce the chances of a infection he decided it would be safer to insert the vascular catheter in my neck (Jugular vein)… so i was taken into the operating theatres where this was done under a local anaesthetic..

I have a very very high pain threshold.. but this vascular catheter was painful and uncomfortable.. the tube feels rigid, its actually a bit bigger than I thought it would be.. maybe I am just a drama queen but honestly it was awful! My neck felt stiff, eating and sleeping were a real struggle especially on the first day.. I remember the night after having the vascular catheter inserted I couldn’t do much.. overnight my nurse and her assistant were amazing.. they checked on me regularly.. adjusted my pillows so I was comfortable, they helped me drink water.. it may sound petty but seriously sometimes it’s something so small that makes a big difference to a patient’s experience..

Having the most amazing family and medical team has really helped keep my spirits high..

My stem cell collection was slightly delayed as my blood count wasn’t going up enough I was given an injection called ‘Plerixafor’ which is usually used as second line.. this injection is ridiculously expensive but it did the job, my body responded and I was told I was ready to have my stem cells collected.. I was so happy.. mainly because I wanted to have the vascular catheter removed!

The process by which stem cells are collected is known as ‘Apheresis’.. basically it involves being attached to a cell separator machine.. which does exactly as its name says.. it separates the different blood cells, this allows stem cells to be collected into a bag and the other cells to be returned back into the body…

So to explain what happens: there was a constant flow of blood in and out of my body (hence why the tube in my neck had two separate ports)…

(Picture below: The vascular catheter has two ports, allowing blood to leave through one port and enter through another.. or as my other half says: its like a tap for hot and cold water!)

Blood left through one port, went into the separator machine where the stem cells were separated and removed… the blood then returned back into my body via the other port.. the whole process took just over 4 hours in total.. i had to remain attached to the machine the whole time.. thankfully it went smoothly… (just a small interesting fact.. says the medic.. this same machine is used for patients with sickle cell disease who need to have their sickle red cells removed and replaced with healthy red cells).

Anyway.. i hope these pictures make my waffling more understandable.. btw my machine was called Rosie!

After my stem cells were removed they were taken to the lab where they were frozen and stored.. they will eventually be given back to me later.. that is after I receive high dose chemotherapy.. oh and my vascular catheter was also removed at the end!!

In the last two weeks I have had a few investigations to make sure all is good in preparation for the next stage of my transplant journey (the high dose chemotherapy).. these investigations included a heart scan (MUGA) and a kidney test (GFR: glomerular filtration rate). Thankfully my heart scan was okay, but unfortunately my kidney test showed that my kidneys have had a hit from the chemotherapy drugs and aren’t functioning within the normal range.. it means my kidneys will need a rest after I receive the high dose chemotherapy drugs.. so a slight delay before the stem cell transplant.

[amendment made on 6/12/2017]: This morning I was told that there had been a mistake made when my kidney result was calculated, my kidneys are working well contrary to the initial result – I’m not really angry or upset at all as human errors happen even in medicine.. Everything i write on my blog is accurate to my knowledge, I don’t like to exaggerate or misinform readers.. so when my doctors correct information they have given me, I will make sure this is reflected in my blog too!

(MUGA scan)

After I was discharged home I had a week of bleeding from my bowels.. it wasn’t a large amount thankfully.. nothing dramatic at all and it completely stopped by itself.. my life seems to be filled with dramas.. honestly I am a nightmare patient.. I feel like a massive burden on my doctors and the NHS… this is partly why I didn’t report the bleeding till the third day after it had started.. anyway.. 6 days after the bleeding had stopped I had a camera test to look for the source of bleeding… praise God that was completely normal.. the Gastrointestinal doctor I saw couldn’t find anything which would explain the bleeding, he told me he thinks I probably bled because the chemotherapy drugs had temporarily affected how my blood clotted.

I’m really sorry this post has been a bombardment of information.. i have tried to keep it as short as possible..

Tomorrow morning I will be admitted into hospital to start the high dose chemotherapy.. this will be my longest hospital admission.. 3-4 weeks.. I will be in hospital right through Christmas and possibly New Year.. I will hopefully have a successful stem cell transplant during this period..

I know the coming weeks will be the most difficult weeks of my life so far.. I am mentally prepared to take on what’s to come.. I have spent the last week or so gearing myself up… there is a 2% risk of death which I am totally ignoring.. as there is a healthy 98% chance it will be okay and I will be spending 2018 at home recovering!

I have packed my suitcase.. I really pray this is the last time I take a suitcase into hospital.. I pray for normality.. I pray for the least amount of pain and suffering in the coming days.. most importantly I pray my family get their life back…

I don’t think I will feel well enough to open my blog once I start the chemotherapy.. I hope the next time I write a post its to tell you that I have pulled through!

Right.. time to sleep in my comfy bed before the big day tomorrow..

Lots of love and positive energy to everyone.. I hope you all have a amazing Christmas and New Year.. I hope to be back as soon as i can xxxx Milad