The HSCT Chronicles: Days 5 – 12 Post Transplant

Hi Everyone,

Thought that I would touch base with how things have been going for me since the transplant happened on the 15th January.  We are now on the 27th, what is also known as 0+12 of my new baby immune system!  Here is the rundown, diary-style,  of my different symptoms over the past week and a half, both positive and negative:

My Symptoms

Day 5

Note Improved knee and food flexion (getting in and out of bed easier). Yay!  Cystitis-type feelings but no sign of infection… just urgency and stinging.

Day 6

Better balance, easier to get dressed, less stiffness in legs!  Had platelet transfusion as they had reached a level of 14.  Apparently, unlike a blood transfusion, platelets don’t stay around in your body for long, so I may have to have another one in a couple of days.  Started G-CFS injections to stimulate cells, one every day up to day 10.

Day 7

A nurse was telling me about how people can have such a sore mouth – because all the medicines can break down the mucosal lining of your gut – that they can’t even swallow their own saliva let alone food.  Ouch!  Luckily I have been ok and have been using a special mouthwash since day 0, four times a day.  Had an ultrasound of bladder, liver, kidneys which looked normal – done because of one abnormal rising on liver function test.

Day 8

Improved bladder symptoms – I had a brief scan to make sure that I wasn’t retaining urine, as I did during one of my past MS relapses long ago.  Luckily I am not.  My Dad – who is a GP – had actually recommended cutting down on tea, which I was having up to 5/6times a day as caffeine can irritate the bladder.  This seems to have helped a lot.  Thanks, Dad!  The doctor adjusted some of my medication due to the liver function which showed a rise they didn’t want – change some from intravenous to oral and stopped some.  Platelets now over 20.

Day 9

Note back pain due to the G-CFS injections, which is apparently a sign that they are working.  Paracetamol or codeine seem to help a lot.  I had a panic due to my laptop charger not working, but taking it out of the wall seemed to help.  I am relying on it to keep sane!

Day 10

Neuro visit said liver function likely due to the drugs being used, therefore to continue to adjust/stop as needed.  They have taken me off the drip stand overnight and into day 0+11.  This is blissful and feels great to be able to go to the loo without carting the drip everywhere.  Also had Reiki from a charity that offers it to Haematology patients.  Although not really my ‘thing’, it was very relaxing.

Day 11

Note that my heart rate shoots up every time that I stand up and move about, as high as 130bpm.  This settles to between 87-100 when sitting down at rest.  I had had a head shave booked in for today, but it has pretty much all gone down the drain now, so it was cancelled and I am keeping comfy with hats and ‘buffs’ (a tube of cotton that I can just pull over my head and tuck in at the back.  These are nice and soft and comfy.

Day 12

Back on the drip!  This time for my first ever blood transfusion.  I am having it as I write this, it should take about 5-6 hours in total and was ordered because I am (perhaps unsurprisingly) anaemic.  It doesn’t hurt at all and they are checking my observations (heart rate, blood pressure and temperature) every hour to make sure it is all going smoothly.  A visit from the doctor – she told me that my liver function tests are looking better now and that my white blood cell counts have also jumped nicely up.  Great!  She even mentioned about discharging from the hospital sometime this week if that continues!  I really, really hope so.  Fingers crossed!

My Feelings

It is interesting reflecting on my feelings at this stage.  Everything has been so ‘physical’ – I haven’t been able to get away from the back pain, cystitis feelings or the increased heart rate, so these have crowded my thoughts I would guess.

I had some medical students come and speak to me about HSCT – what it is and why I have decided to do it.  One of the questions they asked was ‘would you do it again if you needed to in a few years?’  I couldn’t really answer that!  Let’s get through this one first, and its recovery time (which apparently can take up to a year) before I think about that.

I will say, that at this stage (day 0+12) that I am happy I have done it.  It was definitely harder than I thought that it would be – and I never thought it would be easy!.  Perhaps because I came in with the flu, as it showed on a routine swab, I had more difficulty than was anticipated.  The procedure has drained me, both mentally and physically and I know that there is still a long way to go.

One thing that has kept me going is my friends and family.  They are always at the end of the phone, my parents and my husband have been to see me (my brother’s family have little kiddies loaded with bugs, so they are a no-go!). I think that I have missed my kids more than they miss me, which is fine and I know that their dad is doing a fab job with them, keeping them busy.  Our nightly texts or Face Time chats are what keep me going and I have had the chance to feel like I am doing my parenting bit by listening to my daughter read her school books over the phone.

I have been thinking a bit about the future – how and if my symptoms will change, how soon I can maybe get into doing a bit of private speech therapy work.  But, you know what?  I have decided to leave it, to concentrate on myself and my body and health needs over the coming year to help me be as well as possible.

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So that is it!  There’s my little update on how it is going.  I really hope that my next one will be about being discharged from hospital – please keep your fingers and toes crossed for that one.  As ever, please leave me any questions or comments below, I love to hear from everyone 🙂

‘Tl next time

If you would like to read more about my HSCT treatment, previous blog posts are:

HSCT – My Next Step

The HSCT Chronicles: Telling the Kids

The HSCT Chronicles: To Wig or Not to Wig

The HSCT Chronicles: It Starts!

The HSCT Chronicles: Days 1 – 5 

The HSCT Chronicles: The Harvest

The HSCT Chronicles: Life in Limbo

The HSCT Chronicles: Its All Go

The HSCT Chronicles: The Transplant