I am a 30 year old male in India and was on in center hemo from July 97 for about a year and a half, then had a failed transplant following which I was on PD for 6 years. Due to infections and subsequent membrane dysfunction, I have now opted for daily hemo in center. I plan to do this for a month and then get the machine set up at home and then do daily home hemo.
I have been going through the posts on this board and have concluded that most people either use the NxStage System One, the Aksys PHD system or a Fresenius machine.
Since Aksys and NxStage do not have offices in India, I guess that rules out these two. Fresenius does have a presence in India though they supply only the 4008 H and S machines here. Does anybody have any experience that they could share about these machines?
In India, there is no health care insurance system and so I will be buying these machines and all other supplies out of pocket.
Also, there is no home hemo program set up as yet in India. So, there is no formal training program. I plan to get a technician from the hopital where I go for in center dialysis and come home and help me and train me till I am familiar with the wholoe process.
Given this situation would you recommend short daily or nocturnal?
That’s a tough question. There is a misconception out there that a person on home hemo is totally independent. That’s not really the case. It’s best understood as you being a one-person satellite unit off the main dialysis centre. Home hemo is very flexible, but it does require a lot of on-going support. If you can do it, I would suggest starting with short daily. With short daily, you’re awake to keep an eye on things, and in my opinion, it’s a safer and less stressful way to start. If you do use a conventional dialysis machine like Fresenius, you can pretty much do either short daily or nocturnal at will. The other machines which are popular on this forum can’t do nocturnal at present.
I can’t say anything about the 4008 model as I’ve never used one.
I’m not too sure about being trained by a technician. Seems like a job for a very experienced dialysis nurse to me. There’s more to it than just operating the machine.
Hi there
In Australia we mainly use Fresenius and Gambro machines and the nurses I have talked to mainly seem to prefer Fresenius.
My machine is a Fresenius 4008B which is similar to the ones used here in centre but without a bigger computer screen. I have had very little problems at all with the machine (other than 6 weeks learning how to do dialysis with it) but we do have 24 hour technical support backup for medical and mechanical problems. Plumbing, quality filters for the water(uses lots of this), and a steady stream of supplies and electricity is obviously paramount. Useful is a servicable floor surface (we started with carpet) and good storage space. One thing I would suggest is finding a quiet RO (particularly useful if you are ever considering Nocturnal). We have a lovely quiet Gambro WRO95 as the Fresenius RO sounded like it had a mud wasp caught in it which was torture on Nocturnal!
I guess terminology is different in different places! Here, we have people who undergo about a year’s training who actually do everything for the patients in the dialysis units. Nurses are much less equipped. So, I was referring to those technicians and they have been doing all the priming, cannulation etc. at my dialysis unit.
Beachy,
Viewed your set up-very nice. Good idea about sliding machine into the closet when through with tx. Inspired me to put thought into changing room design to increase functionality while avoiding a medical look. Think it gives back personal power to do tx in an efficient, personal way and not allow it to take over one’s life and home. We have a chronic illness, we deal with it and it doesn’t have to loom so large.
Thanks Jane,
Couldn’t agree more with your comments. I love the fact that life can seem “normal” the rest of the time at home. The cost and effort to redo the floor and closet ( even though I had to downsize my clothing to fit Freni in) was worth it for us. Also having her stored in the closet keeps her free of dust and salt air. I love the flooring because it is so easy to wheel big, heavy Freni around and into the ensuite doorway if need be. The only thing I would like but size doesn’t permit this for us is a recliner as well for comfort on shorter runs.
We have been together for 30 years and it is important to us to not have it "in your face " every time you enter the bedroom. I don’t think either of us would have adjusted to this life changing thing so well otherwise.
Obviously this setup is not possible for everyone’s situation and you just have to do what you can.
What machine are you working towards getting?
Beachy 8)
I would like to have a recliner, too, as there may be times I will want to do a short tx. But I have the same problem of not having a large enough room.
My unit is looking at FR and Nxstage, and as far as size, I really like the NxStage since it is small and doesn’t really look like a dialysis machine. The full size machine is like a big robot looking thing and reminds me of in-center. That’s why I think it’s good than you redesigned the closet so you could get Frenni outta site outta mind…
[QUOTE=kamalshah20;5346]I am a 30 year old male in India and was on in center hemo from July 97 for about a year and a half, then had a failed transplant following which I was on PD for 6 years. Due to infections and subsequent membrane dysfunction, I have now opted for daily hemo in center. I plan to do this for a month and then get the machine set up at home and then do daily home hemo.
I have been going through the posts on this board and have concluded that most people either use the NxStage System One, the Aksys PHD system or a Fresenius machine.
Since Aksys and NxStage do not have offices in India, I guess that rules out these two. Fresenius does have a presence in India though they supply only the 4008 H and S machines here. Does anybody have any experience that they could share about these machines?
In India, there is no health care insurance system and so I will be buying these machines and all other supplies out of pocket.
Also, there is no home hemo program set up as yet in India. So, there is no formal training program. I plan to get a technician from the hopital where I go for in center dialysis and come home and help me and train me till I am familiar with the wholoe process.
Given this situation would you recommend short daily or nocturnal?
Thanks
Kamal[/QUOTE]
hi kamal
its very intresting to hear that u consider home haemo dx. i work for one of the home haemo training units in uk. 4008h or s both are very good machines works fairly similar. H is slightly chunky. if u need any info please mail me to mattammathew@yahoo.co.uk
cheers
mathew
Most Australian NHHD is done on 4008 H’s (in Australia the H was marketed as 4008 B) or on 4008 S’s … so any Australian HHD service could help you. They are a fine machine and easy to use in the home. Why else why would >14% ANZ dialysis be HHD? They take a little extra time to set up but the consumables are much cheaper. We have no issues with them … they are reliable and excellent. The machine - except for its accrued costs - is not the issue. By the by, here in OZ all dialysis is free and patients pay nothing for dialysis - except travel expenses to and from the unit - all home installation costs are paid for by the system, not the patient and, in Victoria, the Dep Health also reimburses home patients for any out-of-pocket expenses like power and water. By far the most important issue you I suspecy you have to bed down there in India - where HHD programs are NOT fired-up and routine as they are here - are your training expertise, your unit’s committment to home care and your support systems … the delivery of equipment and consumables, maintenance support, biomedical engineering support, availability of parts and labour etc etc.
There is a program on the runway at Pondicherry … and a website that is being developed to let Indian patients know about the program …but I am not sure how resourced that program will be or how sustainable … simply that the team there has great enthusiasm for what they are trying to do
Hope that link works for you. I cannot guarrantee wher it is up to or the robustness of its services … that is something you will need to sort out locally in India.
Dear Kamal: Your message on HDC was redirected to me by Dr John Agar of Geelong, Australia, who pioneered home haemodialysis program in Australia. I have met him and he knows me.
Since the message was in 2006, the info you sought is no longer needed by you, if you are the same person. Is it the same Kamal I had met in last year in 2007 at your home?
Please visit my newly created website: http://homehaemodialysistraininginindia.page.tl when you find time.
This website has only recently been created and the content will be improved with photos etc in the near futrue. This webstie cannot be accessed as ‘web search’ or ‘www’ either. That will take few more months.
If you visit the website, do make an entry in the guest book to express your views.
With regards and best wishes: Dr Gopal Rabindranath, Pondicherry, India
Thanks for the links Dr. Agar. I actually did start nocturnal home hemo in May 2006. I’m doing very well. I do about 7 hours every day except Sundays.
Dr. Rabindranath, the author of the web site you sent the link of actually visited my house to see my setup about a year back.
Though I do know a few people who are dialysing at home in India, I do not know anyone else doing daily home hemo. There must be a few people though and I would love to get in touch with them to share my experiences.
Experiences with home hemo can be VERY different in India from those in the US and Australia.
[QUOTE=kamalshah20;5346]I am a 30 year old male in India and was on in center hemo from July 97 for about a year and a half, then had a failed transplant following which I was on PD for 6 years. Due to infections and subsequent membrane dysfunction, I have now opted for daily hemo in center. I plan to do this for a month and then get the machine set up at home and then do daily home hemo.
I have been going through the posts on this board and have concluded that most people either use the NxStage System One, the Aksys PHD system or a Fresenius machine.
Since Aksys and NxStage do not have offices in India, I guess that rules out these two. Fresenius does have a presence in India though they supply only the 4008 H and S machines here. Does anybody have any experience that they could share about these machines?
In India, there is no health care insurance system and so I will be buying these machines and all other supplies out of pocket.
Also, there is no home hemo program set up as yet in India. So, there is no formal training program. I plan to get a technician from the hopital where I go for in center dialysis and come home and help me and train me till I am familiar with the wholoe process.
Given this situation would you recommend short daily or nocturnal?
Thanks
Kamal[/QUOTE]
Helo Kamal ,
Your location please , i am jatinder Arora my wife 37 is also suffering with renal faliure . Intersted for home dialysis . wanna ask you the cost of the machine and monthly exp.
I am based in Hyderabad. You can email me at kamal@kamaldshah.com. You can also take a look at http://dialysis.org.in that is a website about dialysis in India that I maintain that has a section on costs that includes home dialysis too.
We are currently doing a pilot test for our nanogoldchip which we have found very effective for reducing the creatine count and also improve the health substantially.
The best part of the chip is that you just need to keep the chip close to your body. There is nothing to be consumed orally/nor to be applied so no side effects or risks.
I would be able to extend one chip to you for which you only need to furnish us with your routine results.
I can assure you that you would observe a notable difference in your current state.
[QUOTE=kamalshah20;5346]I am a 30 year old male in India and was on in center hemo from July 97 for about a year and a half, then had a failed transplant following which I was on PD for 6 years. Due to infections and subsequent membrane dysfunction, I have now opted for daily hemo in center. I plan to do this for a month and then get the machine set up at home and then do daily home hemo.
I have been going through the posts on this board and have concluded that most people either use the NxStage System One, the Aksys PHD system or a Fresenius machine.
Since Aksys and NxStage do not have offices in India, I guess that rules out these two. Fresenius does have a presence in India though they supply only the 4008 H and S machines here. Does anybody have any experience that they could share about these machines?
In India, there is no health care insurance system and so I will be buying these machines and all other supplies out of pocket.
Also, there is no home hemo program set up as yet in India. So, there is no formal training program. I plan to get a technician from the hopital where I go for in center dialysis and come home and help me and train me till I am familiar with the wholoe process.
Given this situation would you recommend short daily or nocturnal?