Top posts
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Collection Day (continued.)
Wanted to say thanks to all the friends and family including my many MS family members who Ive not known for long, but have become as dear to me and Carol as if you were blood. Your kindness, advice, love and support has really been so overwhelming, you've...
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Stem cell collection ports.
Had our steroids port removed from our arms today and a long tube inserted into the jugular vein for stem cell collection tomorrow and Wednesday. It looks a lot worse than it is, fitting was fine, a little discomfort but the Docs all round seem very gentle...
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Correct days! (Day 11)
Im not really sure how Ive got my days mixed up, but for the record today is Thursday 26 June 2014 and I entered here Monday 16 June so I make today day 11. Yesterday was a day off, mainly spent stressing about business at home which I promised myself...
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3. Days 1 and 2.
Day 1. We met with Nancy, her sister and brother-in law in the hotel lobby and got 2 cabs to Pirogov. Armed guards parade outside and we were met by Anastasia and allowed through. We met up with Andrea ad Matt, paid our pre-testing fees and was shown...
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Day 4.
Didn't post today as basically had the day off. Dr F came in in the morning and said there was no need for concern but he wanted me to have another ultra sound on my liver tomorrow,in order to make sure it was protected during chemo. Too many nights out...
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Day 5.
Forgot to say that yesterday Dr Fedorenko said we start stimulation shots today. These are jabs in the arm and stomach, given twice a night at 11pm and 03am for 4 nights, to stimulate the stem cells to move from the bone marrow into the blood where they...
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Days 6,7,8,9,10.
There's not much to say on these days, stimulation shots at 11pm and 03 am to get the stemmies to move from bone marrow into blood for collection. Began on evening of 20 June,and Ive been told its for 4 dys by the nurses and 5 days by Dr F so who knows....
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Day 13. Second day of Chemo.
Woke up feeling ok, normal infusions started at around 10 am and no problem but in somehow trying to get off the bed I got twisted in the cables and tugged the port away from my neck! It was a bit sore but really no problem as the excellent nurse came...
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Day 14. Last day of Chemo.
s Good nights sleep apart from waking up 4 times to pee! No cramps, no pains, nice dreams. I dreamt I was standin in one of my old suppliers when I was still working, arguing about the price of bulding materials, when a life long friend in the same game...
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Day 16-Rebirth (A star is born!!)
Im actually writing this on the 3/07 as yesterday was a whirl. Woke up normally at 7.30ish and sat around until about 12. Then a very nice cleaning lady directed us outside to the lounge area and entered my room with a trollry full of cleaning materials,...
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Day 17-Isolation.
Wow an even crazier day at the Pirigrov,Patients from Auz, USA, NZ,UK. There must be 11 here now when there were only 4 when I came in. The 3rd floor is full so some are located on the 2nd. But the smiles and good vibes from everyone here is electric....
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Day 20-Isolation.
Actually 06am the morning of Monday 07/07/14. Nothing exciting happening in iso, no creeping ghouls or mad axe men to keep me company so as usual I woke for my much maligned 3 thimble full of pee, just to keep God happy and help me clear my pipes!! So...
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July 11 Day 24 Iso.
Thought it was gonna be a quiet week with not a lot to report and essentially it has. Woke up yesterday morning with leg pain and was given some meds which helped. Woke up this morning with even worse leg pain. Dr F said pain normal tho I wont engraft...
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Where to start? At the beginning I know but.....
Its been a humid hot day in Moscow today and I have been hooked into a chemo machine receiving my final dose. This ones called Ritixumab and whilst the regular pounds your body, this one gives it the sucker punch!! Prior to putting me on the machine Carol...
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Yesterday.
I honestly thought my final blog would have been yesterday, but things happened beyond anyones control and I spent most of the day on 2 cleansing drips, cleaning my blood, body after the effects of the previous day. Today, 16/07/2014, exactly 1 month...
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Post 6 month mri.
I haven't posted as much as I intended due to other aspects of life and the bumpy road of recovery! For those that don't know, my name is Steve Holt, I'm a 53 year old Londoner diagnosed with PPMS in March 2011. I am the first British man to undergo hsct...
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18 month post HSCT. (Not good reading.)
Some of you know I was the first UK man to travel to Moscow. My rebirth date was 02/07/2014. Even though my 6 month post mri showed progression my 12 month post mri showed no further progression! Boy was I happy with that! However since then my EDSS has...
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Final Post @+2 years.
I so wish I could say that this is my final post because Im off to live my life happily ever after but sadly thats not the case. After hours of time spent contemplating wether to post or not, I decided its only right to be honest, as I have been throughout...
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1 year post. (Actually 13.5 month!)
Recovery..................Mmmm. It is what they say it is people. A never ending rollercoaster but I think time is one of the important factors here. As I've already said its been difficult. Seems like never ending aches and pains, spasticity and then...
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9 months today.
Well its 05.15am in London town and guess what-its raining!! Early I know for me to be up and writing but when you type like a man with 1 finger you need an early start in order to try and finish on the same day you started!! Well I've been having a pretty...
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Follow on from 6 month blog.
If you remember my post 6 month mri in London showed "new minor lesions and recent activity." I emailed Dr F immediately and he replied to send out the mri so they could assess and not to start the chemo infusions London offered. After a long wait this...
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Spoke to Dr F.
The ongoing saga of my different mri results (Moscow and London) rolls on! After receiving lots of help and advice from fellow pioneers, including from several, "check to see if you have a UTI," I decided to do just that. Apparently having one and MS...
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Collection Day.
Not a bad nights sleep to be honest, considering 2 of Big Chief Sitting Bulls arrows are sticking out at least 6 inches from my neck. Think the hair net helped,(God I love the hair net!!) holding the arrows in place. A U type cushion also helped, you...
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About me! (My favourite subject!!)
My name is Steve Holt, I am 52 years old and I have aggressive primary progressive multiple sclerosis. I am lucky in that I have a wonderful wife and 4 fantastic kids and in a way being diagnosed with this horrible, nasty, debilitating and chronic disease...
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Dx to Moscow and in between.
So now its March 2011 and Im online searching for something that probably isn't there. In fact, I don't even know what Im looking for! Answers maybe? A cure? Who knows? I do know I felt pretty desperate at that time and soon learnt how low human beings...