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).
Showing posts with label Rash. Show all posts
Showing posts with label Rash. Show all posts
Sunday, December 6, 2009
Thursday, December 3, 2009
Myeloma transplant - Days 12 to 15
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 3 of 4; days 12 to 15.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Day 12: White bloods rise.
Bad night, took Temazepan, 2 hours good sleep then disturbed sleep. Woke with headache at midnight, took Panadol. Headache again at 5am again took Panadol. Didn’t sleep well overnight at all.
White blood count rose above 0 today, first rise since bottoming out on day 7.
Mouth feeling better reflected that, major breakthrough there. I am climbing out of the swamp.
Tried to sleep this afternoon, not too successful as woken up 3 times. Feeling better late afternoon.
Nausea setback at 5.45pm to 7.0pm, very strong. Given Maxalon through central line.
Trying to achieve 1.5L fluid intake today, previous average 900ml. IV fluids continue but at a lower rate.
Fluid intake today 1.25L first time over 1.0L, will do better when off the drip during the day.
Temperature up tonight 38.2C (100.8F) at 9.30pm.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [anti-nausea Maxalon x3, Zofran, Haloperidol]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 4.02; white bloods 0.52; platelets 60; weight 66.60kg (146.8 lbs)
Day 13:
Good sleep to 3.0am, woke with dry mouth. Nausea at 6.0am, had Maxalon. Lots of mucus, better after lots of burps. Temperature 37.8C.
Visit by physiotherapist. Continuing stretching, advised to keep using the Exercycle even if it is only 4 to 5 minutes a day.
Doctor took culture off rash. Nausea again from 1.0pm to 4.30pm controlled by Maxalon. Nausea restricted food and drink, I will do anything to avoid throwing up.
One hour sleep this afternoon. Fluid intake 1.6L today. Temperature 38.2C at 9.0pm.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 65.3kg (144 lbs)
Day 14: Fever starts.
Good sleep overnight, mouth and lips still dry. Nurse said dilute the mouth wash and increase the lip balm.
Another nurse hint: for a dry mouth try sucking pineapple. Back on the drip all day.
Feeling hot this morning, cold waves after lunch then feeling cold. After coldness my temperature rose and I got hot again.
Doctor checked me and said we will change my antibiotics. Stop Cefpirone, add Meropenen. If successful the rash will reduce in 2 days.
Felt better in the evening.
This was the start of 4 days of fever. It was a new experience for me to suffer high temperatures, cold chills, rash and debilitating fatigue. My feeling was leave me alone, just let me be sick. I learnt what it was like to be bed ridden. That left me with a better appreciation of what others have told me about their fatigue experiences, easy to listen to, hard to imagine.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x2, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2, Meropenen].
Weight 65.8kg (145 lbs)
Temp 0500---37.8C---100.0F
Temp 0900---38.1C---101.6F
Temp 1300---36.2C--- 97.2F (reduced by Panadol
Temp 1630---38.5C---101.3F
Temp 2020---38.1C---100.6F
Day 15: Incontinence.
Good sleep, up to the toilet for a pee every 2 hours over night.
Still on IV fluids
Tired, sleepy, rigors, fatigue coming on. Temperature up, spiked over the 38C.
Cold flushes after lunch, nausea continues, body rash still present first noted day 5. Antibiotic changed yesterday to see if that is the cause of the rash.
In the evening I did not feel like peeing until I stood up. On standing I could not make it to the toilet and wet my pants each time. The Doctor said ”ah, incontinence”. He tested my reflexes and wanted to get orthopaedics to investigate a link between my collapsed vertebrae and the incontinence.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol], [Antibiotics: Acyclovir x2, Meropenen].
Red bloods 3.78; white bloods 1.25; platelets 90; weight 66.3kg (146.2 lbs)
Temp 0500---38.1C---100.6F
Temp 0900---38.8C---101.8F
Temp 1230---38.2C---100.8F
Temp 1630---38.7C---101.7F
Temp 1900---38.0C---100.4F
My ASCT daily diary is over 4 postings, this is posting 3 of 4; days 12 to 15.
Link to posting 1; Days -02 to 05
Link to posting 2; Days 06 to 11
Day 12: White bloods rise.
Bad night, took Temazepan, 2 hours good sleep then disturbed sleep. Woke with headache at midnight, took Panadol. Headache again at 5am again took Panadol. Didn’t sleep well overnight at all.
White blood count rose above 0 today, first rise since bottoming out on day 7.
Mouth feeling better reflected that, major breakthrough there. I am climbing out of the swamp.
Tried to sleep this afternoon, not too successful as woken up 3 times. Feeling better late afternoon.
Nausea setback at 5.45pm to 7.0pm, very strong. Given Maxalon through central line.
Trying to achieve 1.5L fluid intake today, previous average 900ml. IV fluids continue but at a lower rate.
Fluid intake today 1.25L first time over 1.0L, will do better when off the drip during the day.
Temperature up tonight 38.2C (100.8F) at 9.30pm.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [anti-nausea Maxalon x3, Zofran, Haloperidol]. [Antibiotics: Acyclovir x2, Cefpirone x2].
Red bloods 4.02; white bloods 0.52; platelets 60; weight 66.60kg (146.8 lbs)
Day 13:
Good sleep to 3.0am, woke with dry mouth. Nausea at 6.0am, had Maxalon. Lots of mucus, better after lots of burps. Temperature 37.8C.
Visit by physiotherapist. Continuing stretching, advised to keep using the Exercycle even if it is only 4 to 5 minutes a day.
Doctor took culture off rash. Nausea again from 1.0pm to 4.30pm controlled by Maxalon. Nausea restricted food and drink, I will do anything to avoid throwing up.
One hour sleep this afternoon. Fluid intake 1.6L today. Temperature 38.2C at 9.0pm.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2].
Weight 65.3kg (144 lbs)
Day 14: Fever starts.
Good sleep overnight, mouth and lips still dry. Nurse said dilute the mouth wash and increase the lip balm.
Another nurse hint: for a dry mouth try sucking pineapple. Back on the drip all day.
Feeling hot this morning, cold waves after lunch then feeling cold. After coldness my temperature rose and I got hot again.
Doctor checked me and said we will change my antibiotics. Stop Cefpirone, add Meropenen. If successful the rash will reduce in 2 days.
Felt better in the evening.
This was the start of 4 days of fever. It was a new experience for me to suffer high temperatures, cold chills, rash and debilitating fatigue. My feeling was leave me alone, just let me be sick. I learnt what it was like to be bed ridden. That left me with a better appreciation of what others have told me about their fatigue experiences, easy to listen to, hard to imagine.
Treatment/medication: Panadol x3, Clexane, Temazepan, Gentamian, [Anti-nausea: Maxalon x2, Haloperidol x2], [Antibiotics: Acyclovir x2, Cefpirone x2, Meropenen].
Weight 65.8kg (145 lbs)
Temp 0500---37.8C---100.0F
Temp 0900---38.1C---101.6F
Temp 1300---36.2C--- 97.2F (reduced by Panadol
Temp 1630---38.5C---101.3F
Temp 2020---38.1C---100.6F
Day 15: Incontinence.
Good sleep, up to the toilet for a pee every 2 hours over night.
Still on IV fluids
Tired, sleepy, rigors, fatigue coming on. Temperature up, spiked over the 38C.
Cold flushes after lunch, nausea continues, body rash still present first noted day 5. Antibiotic changed yesterday to see if that is the cause of the rash.
In the evening I did not feel like peeing until I stood up. On standing I could not make it to the toilet and wet my pants each time. The Doctor said ”ah, incontinence”. He tested my reflexes and wanted to get orthopaedics to investigate a link between my collapsed vertebrae and the incontinence.
Treatment/medication: Panadol, Clexane, Gentamian, [Anti-nausea: Maxalon x3, Haloperidol], [Antibiotics: Acyclovir x2, Meropenen].
Red bloods 3.78; white bloods 1.25; platelets 90; weight 66.3kg (146.2 lbs)
Temp 0500---38.1C---100.6F
Temp 0900---38.8C---101.8F
Temp 1230---38.2C---100.8F
Temp 1630---38.7C---101.7F
Temp 1900---38.0C---100.4F
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