Myeloma transplant - Days 16 to 22

This is a daily diary of my autologous stem cell transplant (ASCT) for multiple myeloma compiled from my diary and my own recollections.
My ASCT daily diary is over 4 postings, this is posting 4 of 4; days 16 to 22.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Link to posting 3; Days 12 to 15

Day 16: Fireworks, what fireworks?
Woken by orthopaedics at 3.0am for spinal chord compression investigation. After a series of tests they said all seemed OK. No weakness, numbness or pins and needles. There was still incontinence today.
Rash stable, nausea reduced by Maxalon, no appetite, cold chills and rigors again in afternoon.
Fatigue started in mid afternoon, lifeless, no energy. I have a fever.
When I got the chills or rigors I asked for extra blankets to keep warm.
In spite of the fever I did 4 minutes on the Exercycle and small stretches in the morning.
That evening adjacent to the hospital was Christmas in the park, an annual Christmas concert finishing with a huge fireworks display. The nurses told me that I would be able to hear the fireworks and see some through my window. Now I am a big fireworks fan, love the noise, couldn’t wait. Unfortunately I was so fatigued I could not raise myself up in bed. Can remember some sounds, that was all.
Treatment/medication: Panadol x4, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.40; white bloods 1.36; platelets 93; weight 66.0kg (145.5 lbs)
Temp 0100---38.8C---101.8F
Temp 0500---37.8C---100.0F (reduced by panadol)
Temp 0900---39.2C---102.6F
Temp 1300---37.2C---99.0F (reduced by panadol)
Temp 1700---38.4C---101.1F
Temp 2100---38.4C---101.1F

Day 17:
High temperature, rigors over night, still fatigue, lifeless, no energy. Rash reducing, thought to be caused by reaction to antibiotic. Had a chest x-ray, all OK. Less fatigue in evening.
Still suffering diarrhoea, nausea and incontinence.
Treatment/medication: Panadol x2, Clexane, Gentamian, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2, Meropenen].
Weight 66.25kg (146.16 lbs)
Temp 0100---38.5C---101.3C
Temp 0500---39.4C---102.9C
Temp 0900---39.4C---102.9C
Temp 1300---39.2C---102.6C
Temp 1700---37.8C---100.0C (reduced by panadol)
Temp 2100---39.6C---103.3C
Link: Myeloma Transplant Diarrhoea
Link: Myeloma Transplant Nausea

Day 18: Fever reduces.
Ate a little at breakfast and lunch. Still on IV fluids. Bowels not so rumbling with more time between motions. Motions are still loose. Central line redressed.
Feeling better after mid day and as day wore on. Appetite returning in afternoon.
Treatment/medication: Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x4], [Antibiotics: Acyclovir x2, Meropenen x2].
Red bloods 3.43; white bloods 1.06; platelets 121; weight 65.15kg (143.6 lbs)
Temp 0100---38.7C---101.7C
Temp 0500---38.2C---100.8C
Temp 0900---37.3C---99.1C
Temp 1300---36.3C---97.3C
Temp 1700---37.7C---99.9C
Temp 2100---37.7C---99.9C

Day 19: Off the IV fluids at last.
Temazepan gave me 4 hours sleep then broken sleep. Headache at 5.0pm treated with Panadol. Temperature back to normal.
Rash is reducing. No more incontinence problem.
Mouth has improved, not painful any more.
Off the drip this morning, “free at last” though back on again this evening.
Weight still dropping. Only feel like eating occasionally and can’t eat a full meal.
Out of the unit with Myra for 70 minutes. Across the road then to Starship and back. Felt weak, sore back, had French fries at the Starship McDonalds. A special fresh supply for the immune compromised. Recovered well.
Appetite getting better as day wore on, overall a big step forward.
Treatment/medication: Panadol x1, Clexane, Temazepan, [Anti-nausea: Maxalon x2], [Antibiotics: Acyclovir x2, Meropenen x2].
Weight 64.7kg (142.6 lbs)

Day 20: Disaster.
Couldn’t sleep again so took Temazepan then OK. Worrying about the central line removal. Felt OK this morning, in good spirits and looking forward to going home.
Registrar said no more drip or anti-biotic required. I’m free, the IV line and frame is so restrictive. Drank 1.7L fluid today.
Central line out today or tomorrow then home the next day.
Walked to Starship then biscuit for morning tea.
Hair loss has almost stopped, head bald, beard thinned out and very patchy, body hair there in places but gone where skin rubs.
Less motions, they are becoming firmer.
A Nurse tried to remove the central line, unsuccessful. Another nurse tried also unsuccessfully.
Registrar tried to remove the central line twice, unsuccessful, had to call up a surgeon. Major drama, local anaesthetic, incisions, burst blood vessel squirting blood everywhere; they had to apply pressure to the wound for 30 minutes, finally stitched up. After all that I had to have 3 lots of plasma.
What happened was adhesion between my central line and skin, they were stuck together and the line eventually fractured. Normally it is a simple task by a nurse to pull the central line out.
Treatment/medication: Clexane, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.32; white bloods 2.61; platelets 138; weight 64.7kg (142.6 lbs)
Link: Myeloma Transplant hair loss

Day 21:
Intermittent sleep, not going home today because of yesterday’s drama.
The wound had a new dressing today and feels sore.
My red blood count is down, anaemic, had plasma transfusion.
Rest day.
Treatment/medication: Panadol x3, [Anti-nausea: Maxalon x3], [Antibiotics: Acyclovir x2].
Red bloods 3.04; white bloods 3.93; platelets 166; weight 63.70kg (140.4 lbs)

Day 22: I’m going home.
Panadol at 9.0pm then good sleep. Woke with wound pain at 3.0am, more panadol put me back to sleep.
The wound was not so sore at day break, woke feeling OK.
Discharge today at 11.00am.
I am out of the valley at the top of the climb and can see the golden arches in the distance, my visualisation.
The end of my stem cell transplant hospitalisation, I’m going home.
Only 4 days to Christmas day, going home to be with my wife and family is my Christmas present.
Treatment/medication: Panadol, [Anti-nausea: Maxalon], [Antibiotics: Acyclovir].
Weight 63.25kg (139.4 lbs) a total weight loss of 7.2kg (15.9 lbs).