Have now been on NHD for nearly three months.
During that time I have had no problems during dialysis but several issues have arisen during machine setup.
Largely I have been able to resolve these problems except on one occasion when the dialysis session had to be abandoned due to the machine refusing to go into standby mode.
This highlighted the main worry about NHD - after about 4pm until 7am the next day there is no nursing or technical backup available anywhere in NZ for NHD patients. This can be quite scary.
The official response to this unsatifactory situation is stop dialysis and get advice next day, or present to Middlemore ED if urgent.
Have had some email discussion with both Department of Renal Medicine at Geelong Hospital, Australia ( the definitive sourse of NHD information) and with Dr David Voss,Renal Physician, Middlemore Hospital and Auckland University .
Dr Voss has advised me that they will look into the justification of number of patients on HD and PD at night and the resource required to provide a dedicated nurse and technician for the home patients, other than the current plan of "stop and continue next day after getting backup advice."
For those interested in some of the technical aspects of NHD such as needling and methods of securing needles so they are not at risk of being pulled out during sleep see blog images
Friday, March 18, 2011
Saturday, January 29, 2011
Nocturnal Home Dialysis (NHD)
After being rejected for addition to the kidney transplant list I have become aware of an alternative way of acheiving prolonged life with no renal function.
Nocturnal home Dialysis (NHD) is dialysing at home on a kidney machine at night during sleep.
One month ago after re training at Middlemore Home Care Unit I commenced NHD for 8 hours per night, three nights per week.(Mon, Wed, Fri).
Because the dialysis is applied over a longer period the process is much gentler on the body than 4 hour daily sessions.
Medical studies indicate that in fact the mortality rate of NHD patients is not significantly different from kidney trnasplant patients.
By eliminating the long dialysis break between Friday morning to Monday evening even more benefit can be acheived ie by nightime diaylsing Mon/Wed/Fri/Sun/Tues/Thurs/Sat.
I shall discuss this with Middlemore Home care team in due course.
Nocturnal home Dialysis (NHD) is dialysing at home on a kidney machine at night during sleep.
One month ago after re training at Middlemore Home Care Unit I commenced NHD for 8 hours per night, three nights per week.(Mon, Wed, Fri).
Because the dialysis is applied over a longer period the process is much gentler on the body than 4 hour daily sessions.
Medical studies indicate that in fact the mortality rate of NHD patients is not significantly different from kidney trnasplant patients.
By eliminating the long dialysis break between Friday morning to Monday evening even more benefit can be acheived ie by nightime diaylsing Mon/Wed/Fri/Sun/Tues/Thurs/Sat.
I shall discuss this with Middlemore Home care team in due course.
Wednesday, September 22, 2010
Transplant list update
Transplant team met on 7th Sept.2010
Decided to not nominate me for addition to transplant list
due to heart, lung and bowel problems which collectively
would put me at risk when immune suppressant drugs were
administered after transplant.
Disappointed but not unexpected.
Decided to not nominate me for addition to transplant list
due to heart, lung and bowel problems which collectively
would put me at risk when immune suppressant drugs were
administered after transplant.
Disappointed but not unexpected.
Monday, May 17, 2010
Kidney Transplant List
Still not received any info on whether I will be added to the transplant list.
Getting anxious !
Getting anxious !
Tuesday, April 27, 2010
Visited Respiratory Dept today at Manukau Super clinic for results of bronchoscopy and biopsy performed on 1st April.
Good news indeed.
There are no significant health issues and I will be recommended for addition to the transplant list.
However I still have to be selected by the transplant medical team when they next meet, hopefully within the next four weeks.
If selected for the list I may have to wait up to 4 years for a transplant.
Good news indeed.
There are no significant health issues and I will be recommended for addition to the transplant list.
However I still have to be selected by the transplant medical team when they next meet, hopefully within the next four weeks.
If selected for the list I may have to wait up to 4 years for a transplant.
Sunday, April 18, 2010
Transplant list
On 27th April I have to attend Manukau Super Clinic, Respiratory Department for the results of my recent brochoscopy.
I anticipate one of the following three outcomes:
1. The Respiratory Dept will support my application for being added to the transplant list.
2. The Respiratory Dept will not support my application because I have some "bugs" in my lungs which will become dangerous after a transplant and on immune suppressive drugs.
3. The Respiratory Dept will not support my application until I have been treated for the elimination of "bugs" in my lungs.
My best hope is for the outcome to be 1.
I anticipate one of the following three outcomes:
1. The Respiratory Dept will support my application for being added to the transplant list.
2. The Respiratory Dept will not support my application because I have some "bugs" in my lungs which will become dangerous after a transplant and on immune suppressive drugs.
3. The Respiratory Dept will not support my application until I have been treated for the elimination of "bugs" in my lungs.
My best hope is for the outcome to be 1.
Friday, April 16, 2010
Disaster Planning - Dialysis Patients
For general information on disaster preparation the best internet source is http://www.getthru.govt.nz/web/GetThru.nsf/web/BOWN-7GY2MF?opendocument
In New Zealand, the risks posed by earthquake, tsunami,and vocanic activity are a fact of life.
The following practical information is primarily aimed at dialysis patients and suggests how to look after yourself, your family, and your home in the event of a NZ disaster
.
Be prepared to cope on your own for up to three to five days.
Everyone will be affected by a disaster, including the rescuers that we rely on.
Immediately after an event, emergency services and civil defence staff will have to respond to the most critical demands.
This means they may not get to everyone who needs help as quickly as needed.
It could be several days before services are restored. Even then, access may be limited.
Damaged infrastructure, such as roads, bridges, rail lines, water and electricity supplies will take longer to restore.
Mobile phone systems may be inoperable due to damage or overload.
For patients on Home Hemodialysis or Peritoneal dialysis
Make sure that you always have five days supply of dialysis stock always in hand in case you are isolated by a disaster.
For those who live on their own try and have a “Buddy” such as a near neighbour, or relative who can support you during a disaster.
If on hemodialysis review your emergency disconnection procedure detailed in our troubleshooting manual in case a disaster occurrs whilst you are dialysing.
You should be able to disconnect yourself within two minutes.
Make sure your hemodialysis machine wheel brakes are firmly locked on.
In the case of an earthquake you would not want your machine to wheel away from you across the room whilst you are still connected.
Advise your electricity supplier in writing that you are dependant on life supporting electrical equipment.
If water and electrical supplies are interupted you will not be able to dialyise on your machine.
If you cannot dialise and are isolated from external help cut your food and water intake to the absolute minimum you can tolerate to avoid fluid or toxin overload.
If on periteal dialysis try and store at least five days supply of fluid bags in a secure place (maybe under stairs) where they will not be damaged by falling debris.
Before a disaster
You will need to have:
Household Emergency Checklist This list will help you prepare essential food, water, clothing and medical supplies to cope for at least three days
Emergency items.
keep the following items together in a cardboard carton
• Torch with spare batteries or hand operated LED torch which are available in many $2 stores.
• Portable radio with spare batteries (check all batteries every 3 months)
• A change of clothing (wind and waterproof clothing, sun hats, and strong outdoor shoes)
• First aid kit and essential medicines
• Blankets or sleeping bags
• Pet supplies if relevant.
• Toilet paper and large rubbish bags for your emergency toilet
• Face and dust masks
Food and water for at least three days
• Non-perishable food (canned or dried food)
• Can opener
• Bottled water (at least 2 litres per person, per day for drinking).
• Plan how to get water for washing and cooking (check your hot water cylinder, pond, toilet cistern, swimming pool if it is free of chemicals).You can use household bleach as an disinfectant. Add 1 drop (0.05 mL) of bleach to 1 Litre of water.
Plan now to maximise your survival chances if an emergency occurrs.
In New Zealand, the risks posed by earthquake, tsunami,and vocanic activity are a fact of life.
The following practical information is primarily aimed at dialysis patients and suggests how to look after yourself, your family, and your home in the event of a NZ disaster
.
Be prepared to cope on your own for up to three to five days.
Everyone will be affected by a disaster, including the rescuers that we rely on.
Immediately after an event, emergency services and civil defence staff will have to respond to the most critical demands.
This means they may not get to everyone who needs help as quickly as needed.
It could be several days before services are restored. Even then, access may be limited.
Damaged infrastructure, such as roads, bridges, rail lines, water and electricity supplies will take longer to restore.
Mobile phone systems may be inoperable due to damage or overload.
For patients on Home Hemodialysis or Peritoneal dialysis
Make sure that you always have five days supply of dialysis stock always in hand in case you are isolated by a disaster.
For those who live on their own try and have a “Buddy” such as a near neighbour, or relative who can support you during a disaster.
If on hemodialysis review your emergency disconnection procedure detailed in our troubleshooting manual in case a disaster occurrs whilst you are dialysing.
You should be able to disconnect yourself within two minutes.
Make sure your hemodialysis machine wheel brakes are firmly locked on.
In the case of an earthquake you would not want your machine to wheel away from you across the room whilst you are still connected.
Advise your electricity supplier in writing that you are dependant on life supporting electrical equipment.
If water and electrical supplies are interupted you will not be able to dialyise on your machine.
If you cannot dialise and are isolated from external help cut your food and water intake to the absolute minimum you can tolerate to avoid fluid or toxin overload.
If on periteal dialysis try and store at least five days supply of fluid bags in a secure place (maybe under stairs) where they will not be damaged by falling debris.
Before a disaster
You will need to have:
Household Emergency Checklist This list will help you prepare essential food, water, clothing and medical supplies to cope for at least three days
Emergency items.
keep the following items together in a cardboard carton
• Torch with spare batteries or hand operated LED torch which are available in many $2 stores.
• Portable radio with spare batteries (check all batteries every 3 months)
• A change of clothing (wind and waterproof clothing, sun hats, and strong outdoor shoes)
• First aid kit and essential medicines
• Blankets or sleeping bags
• Pet supplies if relevant.
• Toilet paper and large rubbish bags for your emergency toilet
• Face and dust masks
Food and water for at least three days
• Non-perishable food (canned or dried food)
• Can opener
• Bottled water (at least 2 litres per person, per day for drinking).
• Plan how to get water for washing and cooking (check your hot water cylinder, pond, toilet cistern, swimming pool if it is free of chemicals).You can use household bleach as an disinfectant. Add 1 drop (0.05 mL) of bleach to 1 Litre of water.
Plan now to maximise your survival chances if an emergency occurrs.
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