[GTO]

Guys,

Doctors have advised Dad to start getting mentally-prepared for dialysis. His creatinine levels have been continuously shooting up since 2007, 2 years after his heart bypass surgery. In June 2010, his creatinine level was at 6.6, which came down to 5.1 (after controlling salt & liquid intake). Now, its gone up again to 5.8.

It's the second time in 2 months that he's been admitted to the hospital for removal of excess fluid and he was having some difficulty breathing (fluid in the lungs).

Can we please have an idiot's guide to dialysis? What's good, what's not? Tips on the things to watch out for? Home treatment or hospital? Precautions to take & daily habits to inculcate? The right questions to ask, and the clarifications to take from hospitals?

Thanks a ton

EDIT: Adding summary post from 2014:

Originally Posted by GTO

Just thought I'd update this thread with some tips that we've picked up along the way, in case it's of help to anyone. After all, dialysis is a common treatment today.

- A dialysis patient is between a rock & a hard place. Continuous dialysis isn't easy, but avoiding dialysis is the end of the road. Dialysis is life support for those with kidney failure. Never forget this and approach it with the right attitude. Dad used to think of dialysis as his mandatory "gym workout".

- Dad completed 3.xx successful years on dialysis. He was mobile till the very end. In the last 4 months, we did 2 road-trips and he was a part of all social events (marriages etc.). This is over and above the weekly family outings (dinners, movies etc.). Dialysis helped him lead a normal lifestyle.

- Support from family & friends is everything. Spend all the time you can with a family member on dialysis. Make them feel normal and ensure that they take part in each & every activity that the family does together. A positive frame of mind is essential.

- Travel isn't a problem as most Indian towns have dialysis centers that welcome outstation patients. For instance, Nasik has a Wockhardt Hospital with a dialysis center. There are options for those on holiday in Goa too.

- Home dialysis is a great option for those looking at absolute convenience. No travel, no time in the waiting room and the advantage of home food & family around. Schedule as per your convenience (Dad preferred morning dialysis only). We had a machine from Apex set up at home. Their service quality is exemplary.

- For any dialysis patient, the less the water intake, the better. It's a habit formed slowly & steadily with time.

- VERY important to monitor blood pressure & sugar levels on a daily basis. Also, it's necessary to check iron & hemoglobin levels on a monthly basis (Dad took injections for the same).

- From time to time, the patient might want to "bunk" dialysis. Bunking isn't an option though. Instead, on that particular day, simply reduce the dialysis duration (say, 2 hours instead of the usual 4).

- Weakness is inevitable post-dialysis. It is important for the dialysis patient to rest for a couple of hours. Food before / after dialysis is recommended. They shouldn't do dialysis on an empty stomach.

- Older patients on dialysis will be more prone to sickness. High levels of hygiene (home, food etc.) are recommended.

- If you're young, consider a kidney transplant instead of dialysis. However, older / weaker patients might not be able to sustain an organ transplant.

[Joy]

Sorry to hear about your dad.

Sometimes back, I downloaded a book on dialysis but did not go through it. Don't know whether it will help you or not? But still attaching here for your ready reference.

Could not upload in chm format, so uploading as zip.

Dialysis, Second Edition.zip

[aaggoswami]

Originally Posted by GTO

Guys,

Doctors have advised Dad to start getting mentally-prepared for dialysis. His creatinine levels have been continuously shooting up since 2007, 2 years after his heart bypass surgery. In June 2010, his creatinine level was at 6.6, which came down to 5.1 (after controlling salt & liquid intake). Now, its gone up again to 5.8.

It's the second time in 2 months that he's been admitted to the hospital for removal of excess fluid (his feet had swollen up like balloons) and he was having some difficulty breathing (fluid in the lungs). Dialysis is inevitable & Doctors advise that we should start in 4 weeks tops.

Can we please have an idiot's guide to dialysis? What's good, what's not? Tips on the things to watch out for? Home treatment or hospital? Precautions to take & daily habits to inculcate? The right questions to ask, and the clarifications to take from hospitals?

Thanks a ton

1) GTO, sorry to hear about your dad.

2) I am writing this as one of my grand-aunt ( Dad's Aunt ) had creatinine levels hitting 13 before dialysis started. She had one instrument or something called Fistula fitted in one arm. I am not exactly aware of anything about it, but here is a source from Wikipeida:

Hemodialysis - Wikipedia, the free encyclopedia

I am not aware when this thing has to be fitted.

3) There are packages from some hospitals where in after you have paid certain amount of money for lifetime. After that all the medicine required for dialysis will be covered under that cost. This is convenient as everytime one need not source the medicines. This varies from hospital to hospital. In my dad's grand aunt's case, it was convenience that lead them to pay a pre specified amount so that everytime they need not procure the required medicine. But almost all hospitals in my city are not as competent in administration as in Mumbai. Mumbai might have a completely different scenario. Just posting this for reference.

4) One has to be very strict for the food habits prescribed by doctor, very very strict.

5) In a few cases of family friends, Pranayam ( of RamDev Baba ) had helped. Dont know much details, but they have recovered from creatinine levels of 6-7. I have met one such person personally. Not more. But consulting the doctor is must before doing any exercise.

Needless to say, Hygiene is one thing that has to be maintained at all times, at home and at hospitals where the treatment will be done.

PS : I just put in what I had seen and knew. If there is anything wrong, edit the post.

[PAVAN KADAM]

Sad to hear about this, but nothing to fret.

My grandpa had undergone dialysis just recently, He's quite old, but presently healthy.

Thanks to Nuhospital (Formerly Bangalore Kidney Foundation)

Please check the link.


Who We Are


Hospital is clean with state of art technology, friendly staff and well natured doctors.

They set a special diet chart for each patients, and extremely hygenic food served by the Hospital.

Not those plain, dry sick food, i stayed back one night to take care of him, The food was yummy too.

He was out after a week, may have undergone 5-6 dialysis, He was weak after the procedure, but recovered fast enough.

Best of luck to you, and I wish him a healthy recovery

[Mik]

Sorry to hear about your Dad. I had undergone multiple dialysis myself last year. It can be difficult at first but then you get used to it.

If he is not dependent on any other hospital function, i would advise proper home care. Simple reason - they dont care for the inpatients (My experience in apollo- Delhi - i have no idea about practices in other hospitals) The outpatients are given dialysis all day long and we, the hospital ki murgi, used to be allotted insane timings like 12 at night. It can play havoc with the body clock.

Ofcourse, the docs will let you know about the detailed water intake and the diet chart.

Hope i could be of some help.

[lloydofcochin]

GTO, Sorry to hear about your dad.

Have the doctors advised PD (Peritoneal dialysis) - Peritoneal dialysis - Wikipedia, the free encyclopedia or Hemodialysis http://en.wikipedia.org/wiki/Hemodialysis ? What is the frequency that they have suggested?

A good place to start would be Kamal Shah's blog - Kamal Shah's Blog Dialysis in India

Nocturnal hemodialysis can be done at home after installing a dialysis machine and with the assistance of a dialysis technician. AFAIK if hemodialysis is advised this would be the best option to lead a next to normal life. It is expensive though, IIRC it would cost anywhere between 7-8 lacs for the machine and the required paraphernalia. The cost of consumables and the remuneration for the technician would cost around 15-25k per month depending on the city.

The easiest option would be to approach a hospital to get it done once or twice a week. But then he would be completely exhausted after the 4 hour session every time.

You can also check with the hospitals in Mumbai, some of them might be having a mobile dialysis unit and would be able to do the same at your home as per your requirement. I remember reading somewhere that Manipal hospital had launched a doorstep dialysis facility in Bangalore and IIRC it costs Rs.2500/- per session.

My uncle was put on PD first but the Creatinine levels stayed high and he had to move to HD once a week which has been increased to twice a week now. He is struggling to lead a normal life and hence has opted for a transplant which is going to happen in 2 weeks time.

[sandeepmdas]

GTO, there are many practising doctors in our team. I have already identified and PMmed one for you.

[GTO]

Guys, I really appreciate your support.

First things first, there is no need to feel sorry for anything. Dad's 68 so he obviously doesn't have the body of a 30 year old. He's a tough nut, we are with him, and all of us have the grit & resolve to see through this together. What I'm looking for is objective no-nonsense advice from you guys.

Originally Posted by Joy

Sometimes back, I downloaded a book on dialysis but did not go through it. Don't know whether it will help you or not?

Thank you. Will go through this in detail tonight.

Originally Posted by aaggoswami

She had one instrument or something called Fistula fitted in one arm.

Something similar is required on the right hand, I'm told.

In a few cases of family friends, Pranayam ( of RamDev Baba ) had helped. Dont know much details, but they have recovered from creatinine levels of 6-7. I have met one such person personally. Not more. But consulting the doctor is must before doing any exercise.

Appreciate it, Aaggoswami. Typing notes as I'm reading through your posts. The Doc has asked Dad to continue with his morning walks (once we are home). Will double check on the yoga.

Originally Posted by PAVAN KADAM

Thanks to Nuhospital (Formerly Bangalore Kidney Foundation)

Please check the link.

Awesome, thanks.

He was out after a week, may have undergone 5-6 dialysis, He was weak after the procedure, but recovered fast enough.

Best of luck to you, and I wish him a healthy recovery

Thanks man.

Originally Posted by Mik

If he is not dependent on any other hospital function, i would advise proper home care.

What is the difference between in-patients and out-patients? I can google it, but the Indian meaning of such terms can be different.

Ofcourse, the docs will let you know about the detailed water intake and the diet chart.

He's actually been following a very strict diet since a while. That's why his creatinine's rapid increase slowed down.

Originally Posted by lloydofcochin

Have the doctors advised PD (Peritoneal dialysis) - Peritoneal dialysis - Wikipedia, the free encyclopedia or Hemodialysis http://en.wikipedia.org/wiki/Hemodialysis ? What is the frequency that they have suggested?

Peritoneal & Hemo Dialysis have been explained to us. We haven't got to the specifics (such as frequency etc.) yet. Am to meet with the Doctor several times in the coming week.

A good place to start would be Kamal Shah's blog - Kamal Shah's Blog Dialysis in India

Nocturnal hemodialysis can be done at home after installing a dialysis machine and with the assistance of a dialysis technician. AFAIK if hemodialysis is advised this would be the best option to lead a next to normal life. It is expensive though, IIRC it would cost anywhere between 7-8 lacs for the machine and the required paraphernalia. The cost of consumables and the remuneration for the technician would cost around 15-25k per month depending on the city.

Would the treatment at home be as good as in the hospital? Wouldn't a pro-grade hospital be better equipped than whatever we get home? Also, hemo is a daily process while peritoneal is 2 - 3 times a week?

He is struggling to lead a normal life and hence has opted for a transplant which is going to happen in 2 weeks time.

What is his age? I guess transplants are not easy for Senior Citizens?

Originally Posted by sandeepmdas

GTO, there are many practising doctors in our team. I have already identified and PMmed one for you.

Thank you Sandeep. I deeply trust the collective wisdom of this community, hence the thread.

[amit_arya]

hey, I am a not a doc nor any of my relative had to go through the hardship of dialysis. But i have a few friends whose parent had to go through the pain.

Cret reduction is required to ensure there is no toxicity but you will have to go to the reason for increasing (usually damaged kidney). You will have to see is the damage repairable or not.

All goes well but there are some points that i would like to tell you :

1> avoid eating food that has a lot of nitrogen read: non veg or high protein
2> Please check for diabetes, if the kidney damage is happening due to this then its high time to fix the food , exercise.
3> Dialysis though clears Cret. But at the same time make a person week. Repeated Dialysis will make him weak so rich food avoiding high protein is required (complications if the person is diabetic cant give much carbs/fat as well, The milk additives and protein substitute may help in such cases)
4> Never wait for extreme, in worst case if Kindney transplant is required (Ps. That’s the worst case, heard of only one such case of my friend) please react first. Its best done on a healthy body and not on a body that is already weak due to repeated dialysis. I heard that Singapore is the bet destination for the same (Amar Singh, Wife of a pak crickter turned politician(forgetting name), the position went worst and they had to touch down in chennai) are known examples for going to Singapore for such reasons.
5> this is most important, why doctor has asked to be prepared, the cure lies in the persons made. If the person get traumatized then what ever the doc try to do might not show results. The same applies to other lethal diseases too.

Again, I am not a doc, nor I have personally gone through this agony, but learnt from my friends who have gone through such phases.

Praying for your dad’s quick recovery. Do keep us updated and let us know if we can be of any help. I am sure many of us would jump in and help to the best level possible.

[aargee]

Originally Posted by GTO

What is the difference between in-patients and out-patients? I can google it, but the Indian meaning of such terms can be different.

In-patient means, the patient is treated INside the hospital & when the patient is treated outside the hospital it is OUTpatient ward/hospital.

[lloydofcochin]

Originally Posted by GTO

Would the treatment at home be as good as in the hospital? Wouldn't a pro-grade hospital be better equipped than whatever we get home? Also, hemo is a daily process while peritoneal is 2 - 3 times a week?

What is his age? I guess transplants are not easy for Senior Citizens?

1) Home Hemodialysis,esp Noctunal HD has a lot of advantages. The major advantage is that the fluid removal speeds can be lower since the frequency would be almost daily. Read more here - Home hemodialysis - Wikipedia, the free encyclopedia

A HD done at a hospital would give better care in case of an emergency but then hospitals are not always safe. My uncle had a near death experience couple of months back due to an oversight from the nursing staff. The highly toxic cleaning solution used to clean the machine entered his blood stream and he was gasping for breath when they frantically stopped the process which saved him. He was shaken but then he did not report the same to the management fearing that the technician & nurse might lose their jobs and warned them to be extremely careful in future.

2) He is 52. I guess age shouldn't be an issue for a transplant but then his doctor would be the best person to make the judgment.

[Deep Blue]

I am sure you have searched the web. Here is one helpful site, kidney patient guide - Home page

[H_Zoom]

Hi GTO,

Most points are covered already, though can put down a few which I feel are key:

1) The key thing is the liquid intake (any form of liquid). The better the control, the less will be the frequency of the dialysis per week. Can be restricted to 2 if possible.

2) During the initial dialysis elderly people take some time to get thier body adjusted to this new routine. But nothing to fear, over a period of time, it all settles down as the body and the person gets adjusted to it.

3) General symptons that a person undergoes during/post dialysis are weakness and Low BP. It is hence critical to maintain the weight as based on this it is decide how much of liquid is removed.

4) Also during dialysis there are chances that there is loss of Iron and Heamoglobin during the filtration process, which needs to be suplemented via medications.

5) Cost is another factor and this requires 2 - 3 sittings per week along with the regular prescribed medications

6) One reason of having the dialysis done in hospitals is because of the precautions followed such that infections do not catch up. Also people there (docs and nurses) do these day-in and day-out, hence we can rely on their experience. Of-course you need to do some ground work before and either talk to or find out from people who have been going there for dialysis about the medical care and attention of the hospital first.

7) Doctors have generally not adviced transplants for people above age of 60 or 65+ owing to post transplant complications which the patients may not be able to handle and also the success rate of the acceptance of the donor's kidney

8) Sometimes while having taken exceesive fluid, the patients do feel breathlessness. It is better to take the person immediately for an emergency dialysis in that case. Nothing to worry, but the earlier the fluids from the lungs are flushed out the better it is.

9) As you have mentioned that the creatine levels are shooting up, doctors have suggested to be prepared dialysis to get the same down, as such high levels cannot be controlled via medications which might have been the case till now.

10) The initial few dialysis are done with a pipe intersted near the neck, till fistula has been done (Fistula also takes about 4 weeks sometimes to be ready for dialysis.)

Wishing your father a good health.

[Jayabusa]

Why don't you consider going to a reputed ayurvedic doctor? It's holistic medicine. There won't be side-effects and you might end up with a permanent cure. Also, the feeling of dependency that comes along with those regular visits could be avoided.

Regards

[GTO]

Originally Posted by amit_arya

but you will have to go to the reason for increasing (usually damaged kidney). You will have to see is the damage repairable or not.

Largely, diabetes, blood pressure and age.

Goods news is, Dad's report from yesterday made the Doctors optimistic. They have decided to wait another 60 days before deciding on dialysis. Though the probability is still high, the Doctors are hoping to cure it with medicine, diet and limited fluid intake. He's responded well to the medicines over the last 4 days.

Praying for your dad’s quick recovery. Do keep us updated and let us know if we can be of any help. I am sure many of us would jump in and help to the best level possible.

Thanks for this, and your other advice.

Originally Posted by aargee

In-patient means, the patient is treated INside the hospital & when the patient is treated outside the hospital it is OUTpatient ward/hospital.

Thanks

Originally Posted by lloydofcochin

Home Hemodialysis,esp Noctunal HD has a lot of advantages. The major advantage is that the fluid removal speeds can be lower since the frequency would be almost daily.

We're increasingly zero'ing in on this option. Whoever we've spoken to so far have recommended home hemo.

Originally Posted by H_Zoom

The key thing is the liquid intake (any form of liquid). The better the control, the less will be the frequency of the dialysis per week. Can be restricted to 2 if possible.

Currently at <1 liter per day (all fluids)

7) Doctors have generally not adviced transplants for people above age of 60 or 65+ owing to post transplant complications which the patients may not be able to handle and also the success rate of the acceptance of the donor's kidney

Precisely the reason its ruled out for Dad too.

Originally Posted by Jayabusa

Why don't you consider going to a reputed ayurvedic doctor? It's holistic medicine. There won't be side-effects and you might end up with a permanent cure.

Can Ayurved provide a realistic cure in such cases?