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.
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.
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.
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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Day +14

My day started with a bang at 2 o’clock when I had to call the nurses to bring me a bedpan so I could have a bowel movement of epic proportions – 11 days worth of food intake. After that I slept soundly.
At breakfast I think I over ate, when I was almost done I vomited it all out again. Shortly after I again had to call the nurse again for bedpan and this time it was diarrhea. After cleaning myself up in the shower I spent a good 20 minutes on the toilet cleaning my insides out. They gave me Immodiums and Maxolon.
During Dr. van Niekerk’s visit she explained that it is to be expected as my stomach has to get use to dealing with solid foods after nearly 2 weeks of IV feeding.
At lunch time I ate some of the vegetables and started feeling nauseated again, stopped eating.
The afternoon was spent having a fever of 37.9C and having another chest x-ray to see if my fever may be lung related.
Luckily I did not suffer any additional vomiting or diarrhea during the day and my temperature dropped back to normal at my 16h00 vitals and for dinner I restricted myself to 2 portions of custard and jelly as my stomach was still sensitive.

The best news for the day; my WBC is 4.8.

My parents got me this awesome t-shirt, based on the design I did off my personal mantra for my HSCT journey.


Day +11 – Day +13

My parents and I had a great chat with Prof Novitzky regarding the treatment, my process and also the need for this treatment for other MSers. What impressed me most of the way he does the treatment is that most of the medication are preemptive rather than responsive. An example he gave was the anti nausea medicine that I have been receiving from the start even though I have never felt nauseous. According to Prof, it is better to keep the drug in the blood at such level and patient nausea free than to administer it to a patient who is nauseas and then wait 3 – 4 hours for it to work.
WBC was 0.5k with no fever the whole day!
Lazy Sunday, not much going on in the ward so I just relaxed.
Until Brian the physio showed up, who worked me hard, stretching all my muscles and making me cycle hard. Well, I pushed myself more than he did, but it was a good workout.
WBC was 1.1k, again no fever!
I had a nice lunch of toasted cheese sandwich, followed by grilled hake for supper.
toasted cheese
At 6 o’clock observations I had a fever of 38.0, by 10 o’clock it had gone down to 36.4. Since then it has never gone above 37.2. Neither Dr van Niekerk nor the nursing staff could explain it.
I forgot to order porridge for breakfast, so all I received was a piece of sausage and some scrambled egg. Good thing I am on IV feeding as that would not have held me to lunch…
Which was a tuna bake with jelly and custard for dessert. Here’s my delicious tuna bake and a photo of me enjoying my custard.
In the afternoon, I had a great workout with Aisha. She brought a 1.5kg weight and it is amazing how it was as difficult as my 10kg workouts were a year ago. But I will get to that level again, and I am determined to go beyond that.
WBC is 2.1k (Prof requires >4k for discharge) and my neutrophils are 0.6 (>0.5 for discharge). Standing in my way of discharge, other than my WBC, is 24 hours fever free; off my 5 kinds of antibiotics and weaned from my IV feeding.
No blood for today, only platelets late this afternoon, temperature 37.4C at 20h00.


Update: Day +8 – Day +10

Day +8 update
Until recently blood count values as represented by a laboratory report were only meaningless numbers to me. Now, during my treatment it is starting to make sense as any upward or downward fluctuation in the values has a major impact on my treatment and ultimately on my recovery.
I received excellent news from Dr. Van Niekerk, my WBC is 0.1. If it wasn’t for my ears my smile would have been all-round. This is excellent news at it is evidence that my body is capable of producing blood cells.
Day +9
WBC is 0.2 today. No need for redbloodcells or platelets. Oops, forget to mention earlier that since my Haemoglobin started to drop my physical exercise has been restricted to stretch and bed exercises as my physiotherapist does not consider cycling as suitable.
Day +10
Production of WBC is still on the increase and WBC level reached 0.5. Unfortunately Haemoglobin and platelets are low again and received one unit each. Temperature is fluctuating but the good news is that it is being brought under control rapidly. Achieved another breakthrough against mucositis as I have been able to eat some jelly and custard.
There really isn’t much to report except that God is good, Cape Town is lovely and I am feeling well!


Day +8

Managed to drink two protein shakes today. Haemoglobin is low again; receive another unit of blood as well as a Neupogen injection.
I am feeling well, just lying in bed, visualizing the bright future.

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