Hi Dr Agar, this is info that we talked about ages ago.
Just to mention, I got my historical info from one of the sisters that was involved in the initial home haemo program.
The home dialysis program regarding peritoneal dialysis is well established here. It was introduced to Ireland in 1979. In the early 1990s, automated PD machines were introduced. Apparently home haemo was up and running at the time of it’s introduction. But at the time, they trained someone else to do the treatment ‘to’ the patient so to speak!! So the husband/wife or nurse apparrently did all the setting up etc. Absolutely bonkers :rolleyes:, well at least it seems that way to me, so I guess much progress has been made in attitudes of both health care providers and patients since. When PD arrived the home haemo fizzled out, as PD was a more practical solution, and patients wanted independence, and rightly so, and I’m sure PD was more cost efficient as that’s usually the bottom line.
So to today, Prof Peter Conlon reintroduced a new home haemo program Aug 2009. I am their second candidate since Oct 2010. Initially they were putting one patient every 6-8 weeks on their training program, but obviously depending on you ability, it will be longer/shorter. I felt I was ready was ready after 4 weeks but water testing took 5!! So they have amended that and are testing water now while patient is waiting to commence training. They are training 2 people at a time.The plan is to have 80 people up and running in the next couple of years. Now they are insisting the person that need the dialysis does it all themselves. I don’t think that is totally fair because it discriminates against people who , for example, are visually impared. They may have a partner willing and able to do the training. I’m sure it will become more flexible as it becomes more established. Effectively it’s still in the ‘pilot project’ phase.
We have optional access to a dietician at our clinic visits, well provided biochemistry results are normal. Clinics are initially once a month. I attend every 2 months now. I post in monthly bloods. We have 24 hour phone cover for our machines if anything goes wrong and if it can’t be sorted over the phone, the technicians have 24 hours to get to the patient. They usually come on the day, but I might just be lucky logistically.Water testing is done once a month, and machines are checked over. They are such a great bunch of guys. The nurses do home visits once a month. We have a 24 hour hospital number for any potential problems. Our fistulas are not routinely scanned, but are looked at during clinic visits. Everything is supplied for us under the public health care system, we are incredibly lucky. Baxter supply machines, they’r Nikisso machines which are really user friendly. I get deliveries of my supplies every fortnight, some people get deliveries every 4 weeks. I email my order in alternate fortnights.We get to choose how often we dialyse, as long as you choose to do as much or more than was perscribed in the hospital. So far I am the only one choosing 7 days per week. Nocturnal will be starting next Jan/Feb. It’s really great that Prof Conlon is totally behind this, as well as some of the other staff. There is still fear around home haemo for others. I don’t think thats exclusive to this area though. Empowered patients still terrify some staff, shocking hey LOL!!. I’m not sure if my constant pushing for nocturnal dialysis had anything to do with the timing of its introduction, hardly!. I wouldn’t have know the option existed if I had not found home dialysis central, so thanks for that, and then your website Dr Agar, again much appreciation.
So some stats for 2009, out of 487 patients 87% were on HD, 9% on PD and 4% were transplanted that year. Doing the maths, which by the way I’m not going to even attempt here!, you can tell by looking at those, it’s about a 1/5 of patients they are aiming to have on home haemo. I think it’s very achievable. Pity its not more like 3/5 though. Will be interesting to watch what transpires over the next 5-10 years.
Anytime theres an article in the media here, I write to let them know about the program. As it’s a small country, word of mouth still has a powerful role to play here. I guess if I was going to be on dialysis longterm I would consider making it a personal project to get it out there, but I don’t really feel like that crusade right now. I have just found out that my kid sis is a 100% match for me, and considering I have 97% antibodies to the general population that’s a bit of a miracle. However we are only beginning the process and who knows where this journey will lead us, hopefully to me waking up to look at a full catherer bag!! and my sister smiling back at me.
I think that is ultimately the answer to your question about how to spread the word. Get a bunch of highly motivated people, that are on dialysis long term on side. Put them all in a room (can be virtual/skype) with a bunch of highly motivated health care providers with an interest in home haemo and start that crusade.
Dunno if this info is interesting to others, hopefully no-one fell asleep while reading.
Cheerio,
Bye for now,
Sinead
Hi Dr Agar, humongous error in my email!!
Statistics amended here
Those earlier figures were for one specific hospital, in my previous email.
There are 1679 kidney patients currently receiving dialysis treatment including 19 children. 243 organ transplants occurred in Ireland in 2009. There were 154 deceased donor kidney transplants at Beaumont Hospital. 8 pancreases were transplanted simultaneously with a kidney and Beaumont conducted the first pancreas alone transplant since 2003. 22 extra kidney transplants were conducted via living donors making an overall total of 176 kidney transplants of which 172 took place at Beaumont Hospital and 4 in the UK
80 patients seems like such a small number now! Hopefully there will be such enthusiasm for it, that the program will be greatly expanded as people become more familiar with the treatment as an option.
Apologies for the error.
Sinead
Thanks for the information. It is always good to get up-to-date information from people in other countries who are interested in home HD as it helps to keep the picture whole and to better understand the evolution of and progress in home therapies around the world.
You, too, should in no small way feel content and not-a-little chuffed that you have played a part, in Ireland, through your insistence on home care, in helping that evolution towards home dialysis.
More strength to your arm, Sineadee.
John Agar