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Prof Novitzky’s contact details

I have been asked by a couple of people for Prof Novitzky’s contact details, so here it is:

E-mail: Nicolas.Novitzky@uct.ac.za
Phone: +27 21 404 3073

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Two years and every day better than the last

It has been 2 years since my HSCT and 10 years since my MS diagnosis. In the last 2 years I have not had a single relapse and I have had no worsening of symptoms. This indicates that my MS has been halted. My balance, cognitive function, fatigue and muscle tone has improved, which indicates that there are improvements happening and that there may be more to come.

Overall, I am healthier and my quality of live is a lot better than it was. It was by no means an easy procedure to endure, but I have no regrets and would do it again if faced with that same choice.

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Almost a year

It is almost a year now since I have had HSCT for my MS. There has been some positive development but nothing drastic; most notably my bowel and bladder incontinence, fatigue and my headaches.

I have also been gymming hard these last 4 months, trying to get my balance back to how it was.

But I would say that the greatest change that the HSCT has brought on is that I have not had a relapse since!

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Cost of HSCT

A lot of people have asked me what my HSCT had cost, and up until recently I have not had a clear answer as some of the accounts only came in at the start of March. But I think that all accounts have now been payed, so I can give you the final cost:

Pre-op lung function – Prof Willcox R 309.95
Pre-op ECG R 612.22
Hickman line R 2,625.85
In Hospital
                   Ward fees R 173,400.00
                   Ward drugs R 10,297.76
                   Ward extras R 8,680.60
                   Dispensary drugs R 141,181.42
                   Ward x-rays R 571.07
                   Bloodworks R 25,798.48
                   Bloodinfusions R 57,885.00
Prof Novitzky and Dr van Niekerk R 90,054.00
Total R 511,416.35

At today’s exchange rate, it is 55,688.13 USD

If anyone is interested in HSCT in South Africa, please contact Prof Novitzky at Nicolas.Novitzky@uct.ac.za

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3 Months later

Last week saw my 3 month post transplant anniversary. I was doing well and my headaches are less and I haven’t had nocturnal incontinence since I have stopped using the condom catheter, but about 3 weeks ago I started developing ulcers on my cheeks at the back of my mouth. The ENT doctor I saw gave me Flagyl, Meiact (Cefditoren Pifozil), Augmentin, Daktarin oral gel and Gengigel, they started getting better  but were  still painful when eating and slow to heal. In this last week I have been weak, little appetite and no energy.

I went for a full blood count and this was the report I received:

WBC                      1.65
LYM                      0.69
MID                      0.18
GRA                      0.78
LY%                     41.7
MI%                     11.1
GR%                     47.2

RBC                      3.62
HGB                     11.2
HCT                     30.5
MCV                      84
MCH                      31.1
MCHC                   36.6
RDVC                     12.7

PLT                         271
PCT                        0.19
MPV                      7.1
PDWC                   39.3

Diagnostic messages:

WBC
Leukopenia
Granulocytopenia
Lymphopenia

RBC
Anemia

In an email conversation with Prof Novitzky, he said he sees mild leukopenia (low white cells) but the rest of the blood elements appear OK and prescribed Acyclovir 400 mg 8 hourly x 5 for what he thinks might be Herpes ulcers in my mouth.

Since taking the Acyclovir I have noticed a bit of improvement in my mouth, but still very weak. We will see how it goes after I have completed said medication

My mother also noticed that a characteristic smell that I had, although not unpleasant, has gone since the chemo.

There are some changes that I have now noticed, tried my best to photograph them:

My eyebrows are a darker red than before

eyebrow

My hair is also darker; it would appear black but will have to wait for it to be thicker to see

hair

So is my chest hair and where my Hickman line was removed has healed quite nicely

chest

My finger nails have white bands on them that started growing out post chemo

nails

Now I know there are 2 questions on everyone’s mind:
Did it work? Too soon to say
Was it worth it? Yes!

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General update Day +50

It has been almost 3 weeks since my discharge and last blog post… I am bad at hiving updates, I know.

Shortly after my discharge I went for follow up bloods and visit with Prof Novitzky and he told me that my blood levels are excellent and that I am no longer neutropenic! He also said that I am fine for travel and that there is no reason for me to have a follow up visit. I was so glad, it meant that the rest of our stay in Cape Town was purely holiday!

We moved our accommodation to Simons Town, about an hour from where we stayed in Observatory. The new place had 3 levels, so I had to climb a lot of stairs, something I would not have been able to do before my treatment. My brother and his girlfriend joined us just before Christmas so I went out with them, to shops and to the beach, also something I was not able to do before. I needed support at times, but luckily someone’s shoulder or a wall was always close by to lean on.

On the 10th of January my father went back to Saudi to start work again after 68 days of leave. My mother and I traveled on that same day to Pretoria to visit family. I had a wedding where I saw my father’s side of the family, a lunch where I saw my mother’s side and had dinner with my best friend. I will see the rest of my friends and more of my family in the week to come before my mother and I leave for Saudi on the 24th.

There are certain MS side effects that improved in the week since my discharge but have since worsened again, notably my eye sight, my balance and the tremors in my left hand. But despite the worsening, it is still better than before treatment. Something that has not improved is my nocturnal bladder control and I still wear a condom catheter to bed. On the positive side, my speech has improved and my fatigue is a lot less as well as my concentration and cognitive function.

When back in Saudi I will start my fitness regiment and work on regaining muscle mass that I lost as well as muscle function that has atrophied.

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Day +24 There’s no place like home!

This morning at 7am Prof Novitzky stopped by for his final examination of me before discharging me. After a last breakfast I quickly packed and after receiving my bag of TTO (more on that later), I was out of there.

Since my release I have had 2 naps, lunch and dinner. Now I look forward to a good night’s uninterrupted sleep!

I will be taking a week’s break; brother is coming to visit and it is Christmas so time for some family fun 😀

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Day +19 – Day +23

In the last couple of days nothing much has happened, except sitting around waiting for my low grade fever to subside. Countless chest x-rays have shown that the infection is not in my lungs. As last effort prof Novitsky instructed Dr van Niekerk to remove the Hickman line. To replace the Hickman line they gave me a peripheral IV in my right fore-arm.
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After dr Niekerk undid the dressing she scrubbed the surrounding area with disinfectant. She injected local aneasthetic into the area surrounding the line. When it was nice and numb she cut the stitches holding it in place and proceeded to cut it loose. As the line had grown fixed to the surrounding tissue she had to cut a bit more that she wanted to loosen it up. Finally with a gentle tuck it all came out and I was Hickman line free after six weeks.
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Then it was a simple procedure of stitching me up. She gave me five stitches and bandaged me up. Since the removal of my line my highest temperature was 36,9 C.
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The peripheral IV didn’t last long as this morning it was in the tissue. Luckily Prof Novitsky said at 7h00 that they can remove it and I can go line free until tomorrow when I am discharged!!!!!!!

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Day 17 + 18

My celebrations were premature. They took me off the anti biotic and within the 24 hours I showed a temprature. Now I am back on anti biotics until they can figure out what is causing the fever. Later today they will do yet another chest x-ray to look at my lungs and also an abdominal sonar to see if it might be a stomach infection.

If both of those come out clean they will remove my Hickman line to see if the infection might be hiding in there.

Where ever it is, I wish it clears up soon!

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Day 15 + 16

Two almost uneventful days, I am now just biding my time, waiting for a fever free 24 hours. I almost had it yesterday but for one spike at 2pm.

So far, today has been good, 20 hours fever free!

After this, they will take me off the antibiotics and then I need another 24 hours. So far they have stopped the morphine, heparin and in an hour or so my IV feeding.

Discharge is within reach!

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