Sunday, May 20, 2018

Home Dialysis: Nephrology’s best-kept secret

I am a strong believer in home dialysis - Peritoneal or Home Hemodialysis. Doing your dialysis at home gives you immense freedom and flexibility to live life on your terms. You don’t need to rely on others. You are completely in-charge. This approach may not work for some people. For them, the hospital or centre based dialysis is always there. But for those who would like to be in control, there’s nothing that beats home dialysis.

study conducted on nephrology professionals found that more than 90% of them would prefer either PD or Home HD if they had to go onto dialysis. However, about 93% of patients on dialysis in the US are on in-centre HD, 7% on PD snd less than 1% on PD. In India, those numbers are even worse.

Though nephrologists would prefer a home based therapy for their own dialysis, why are they not recommending it to their patients?

There could be multiple reasons for this with respect to India:
  • Patient unwillingness: Patients could be scared to take the burden of care into their own or a family member’s hands. They might prefer relying on trained technicians and doctors for this task.
  • Insurance does not cover home dialysis: Most insurance policies do not cover home therapies. Even hospital based dialysis is covered only by group insurance policies and not individual policies.
  • Infrastructure unavailability: Home dialysis needs certain basis minimum infrastructure at home like storage space, availability of a clean room for the treatment, water and electricity etc. Some people do not have this infrastructure
  • Doctor’s fear of losing the patient: Some doctors fear that if they send the patient home and do not see them every week like in hospital based dialysis, then they could lose the patient to some other nephrologist 
  • Doctor’s remuneration: I have heard some nephrologists admit (in public forums) that their main source of income is hospital based hemodialysis. They make less money on PD and nothing on home hemodialysis.
While some people debunk these myths around the reasons for the poor uptake of home therapies, nothing much can be done about some of these reasons but something can definitely be done about the other reasons and some more patients can be put on home therapies.

One thing that is inexcusable is that the different modalities are not explained to newly diagnosed patients. Most of them are just asked to plan for an AV Fistula. In my view that is completely unethical. Well, you might have an opinion about what the patient might like but please, give us the choice.

Sunday, May 13, 2018

Home HD in India - not as difficult as you think

When people get to know about home hemodialysis, they generally think it is too complex and risky for them to do. They have seen so many incidents in hospital based centres that they assume the same can happen at home too. However, many of these fears are unfounded, especially in patients who are  otherwise healthy, are proactive about their health, like to take care into their own hands and do not like to accept the dependence on others for their own well-being.

Take the case of Amit from Kolkata. He was suddenly diagnosed with MPGN (Membranoproliferative Glomerulonephritis) at a young age in 2013. He had to start dialysis within a few months. He started dialysing at a reputed hospital in the city. He experienced what many people feel on dialysis in a hospital - poor quality, many complications, callous technicians. He also lost weight rapidly and his work was severely compromised.

His younger brother was active on the internet and found many good things about home hemodialysis. He started researching about it extensively and also got in touch with people who were undergoing home hemodialysis in India. Encouraged by the full life people on home HD were leading, he suggested this modality to his brother.

Intrigued by this, in the hope of getting his life back, Amit talked to his nephrologist about home hemodialysis. His nephrologist was reluctant at first but then gradually acquiesced. The hospital arranged for Amit and his wife, Komal to be trained in the hospital. The training went on religiously for a month, about 12-13 sessions. Komal was initially completely overwhelmed by the number of lines in the bloodline, the various settings on the machine and the fact that blood was coming out of her husband’s body and going through a machine. She would be responsible should anything go wrong. She slowly learnt the ropes though and decided that she would take this into her hands and ensure that her husband got good treatment at home. She was very brave to do this and her husband was fully appreciative.

After a month, a dialysis patient, also from Kolkata, who ran his own business of medical consumables arranged for them to buy a new HD machine. The hospital’s dialysis team helped them procure a water treatment plant.

The day had finally come when they would do their first session at home. Komal nervously set the machine up and hooked Amit to the machine. The first few weeks were quite intimidating. Alarms would go off. They were able to handle some of them. For others they would call hospital staff and get help in addressing the issue. They would do four hour sessions, thrice a week. They would do the sessions in the afternoon.

A pic of their HD machine and water treatment plant

Issues slowly started to reduce. Amit’s health improved dramatically. There were very few complications unlike the times he dialyzed in the hospital. After about six months, they decided to try nocturnal. They started dialysing every alternate night. They found a very dedicated dialysis nurse, Guru, who worked for a dialysis provider through some common contacts and reached out to him for help whenever they needed it. Guru helped them even in the middle of the night, often doing video calls to help figure out issues.

Today after two years on home hemodialysis, Amit has got his life back completely. He has put on all the weight he lost, works full time and leads a normal life. He recently went on a holiday to the North where he actually did river rafting in the Ganga (complete with a jump into the river).

The beauty of nocturnal home dialysis can never be described completely in words. People who undergo the therapy wouldn’t give it up for anything in the world. It is the best therapy among all Renal Replacement Therapy options except for a kidney transplant.

It is not even as complicated as it seems. Yes, there will be bumps on the road. But the ride is definitely worth it.

(Note: Some names and other information in this article have been changed to protect identity. Many thanks to Amit and Komal for sharing their story and allowing me to write about this inspiring journey. In many ways, they were brave to embark on this journey without any professional help. I had a very capable dialysis tech, Jairam who helped me start home HD. This couple did it on their own. Hats off!)

Friday, May 11, 2018

Hepatitis C treatment for those on dialysis

Hepatitis C has become a major problem for dialysis patients in India. Blood transfusions, reuse of dialyzers and poor infection control practices are associated with a higher cross-infection rate. Another major problem is that even after infection, the virus is not detected by the commonly used Anti HCV Antibodies test for 4-6 weeks. This means that patients would be assumed to be negative for the virus despite getting tested. In this process other patients could get cross infected. Hepatitis C infection is more common among those on dialysis for a long period of time. 

For many years, Hepatitis C positive dialysis patients had to rely on traditional treatments like Interferon and Pegylated Interferon which did not have high success rates. They also had significant side effects. Further Ribavirin, to be used along with Interferon for effective treatment caused severe side effects among dialysis patients and hence could rarely be used. This further reduced the success rates of treatment.

The advent of Direct Acting Agents such as Sofosbuvir has ushered in a new era in the treatment of Hepatitis C in dialysis patients. These are all oral drugs to be taken for 3 months mostly and success rates have been very high.

Earlier Hepatitis C used to be treated only if the dialysis patient was about to go for a kidney transplant. It was not worth the hassle otherwise. But now, things are changing and most dialysis patients are encouraged to get their Hepatitis C treated. Left untreated, Hepatitis C can lead to liver cirrhosis and liver failure. The new KDIGO guidelines draft for Hepatitis C in CKD patients recommend that all CKD patients with Hepatitis C be treated with a Direct Acting Agent based regimen.

Many patients think that since Hepatitis C is fairly docile and does not cause any immediate, urgent symptoms, why bother treating it? The problem is over a period of time, Hepatitis C can cause a lot of problems. Especially after a few years, the liver can become badly affected and this could severely impair quality of life in many ways.

These days the cost of treatment has also come down significantly. So, if you are on dialysis and are Hepatitis C positive, you should definitely consider treatment. Talk to your nephrologist and discuss treatment options.

Sunday, May 6, 2018

Hepatitis B vaccination for those on dialysis: What you need to know

Hepatitis B is a liver disease caused by the transmission of the Hepatitis B Virus into the blood stream of an individual. Hemodialysis patients are at a greater risk of getting infected by this virus because of their blood being passed through external circuits for Hemodialysis. Further, reprocessing of dialyzers and bloodlines increases this risk because the inner circuits are exposed further during the reprocessing procedure.

There is no guaranteed cure for Hepatitis B today and patients often require to take some form of anti-viral treatment for the rest of their lives to reduce the impact of the virus on the liver.

The best news is that there is a vaccine for Hepatitis B. So, if you are on dialysis or likely to start dialysis in the near future, you should check with your doctor about getting vaccinated for Hepatitis B.

Here are a few things to note in this regard:

1. Dialysis patients need double the normal dose of the vaccine:

In India, Hepatitis B vaccines are usually available in vials of 1 ml. Dialysis patients need to take 2 ml each time.

2. You need to take 4 doses over a period of time:

You need to take double the dose (i.e., 2 ml) 4 times to complete your vaccination schedule. You need to take a 2 ml injection on Day 0, Month 1, Month 2 and Month 6. This means that if you took thre first dose of 2 ml today, you need to take another 2 ml dose after a month, another 2 ml dose after one more month and finally the last 2 ml dose after 4 more months of the last dose. Sample dates could be 

First dose - 1st January 2018
Second dose - 1st February 2018
Third dose - 1st March 2018
Fourth dose - 1st July 2018

3. Getting tested if you are protected against the Hepatitis B Virus:

Once you’ve taken 4 doses of the vaccine, you need to check if you have been protected adequately against the virus two months after the last dose. In the above example,  this test would be done on 1st September. This is checked by performing a test called the Anti Hepatitis B Surface Antibody Titre.  If the Titre value is greater than 10 IU/ml, then you have been adequately protected.

If the titre value is less than 10 IU/ml, then you should repeat the entire vaccination schedule again (4 doses of 2 ml each with the gaps as outlined above). Then again check your titre. If it is greater than 10 IU/ml, then you are now adequately protected. However, if your titre is still less than 10 IU/ml, then you are classified as a non-responder and it is unlikely that the vaccine is going to work for you. Read the section on Non Responders below.

4. Follow-up testing annually:

With the Hepatitis B vaccine different people get different levels of protection and this protection lasts for different durations. The protocol is to get tested annually for the same Anti Hepatitis B Surface Antibody Titre. If your titre value is less than 10 IU/ml, then you should get a booster dose (one dose of 2 ml of vaccine). If your titre is greater than 10 IU/ml then you do not need a booster for another year. If your titre is 100 IU/ml or greater then you do not need to test for the titre or get a booster ever in your entire life.

Annual Anti Hepatitis B Surface Antibody Titre < 10 IU/ml - Booster dose of 2 ml
Titre > 10 IU/ml but < 100 IU/ml - No need for booster for one more year
Titre > 100 IU/ml - No need to check your titre ever again and no need to get a booster for your entire life

5. Non Responders: 

Some people do not respond to the Hepatitis B vaccine. Despite getting the entire vaccination schedule (even twice) their titre value is still less than 10 IU/ml. This means that they are not adequately protected against the Hepatitis B virus. They should take adequate precautions to avoid getting infected. Things like avoiding blood transfusions unless absolutely necessary, not dialysing on a machine that has been used to dialyze a Hepatitis B positive patient, not dialysing at a station close to one that has been used to dialyse a Hepatitis B positive patient and so on should be adopted.

Dialysis patients have a tough life. The last thing someone would want is to get burdened with another disease like Hepatitis B. When there is a vaccine available, getting vaccinated is the most prudent thing to do. Yet, many dialysis patients take this easy and delay or avoid taking the vaccine. Prevention, obviously and more so in this case, is better than cure.

Tuesday, May 1, 2018

Newly diagnosed with Kidney Failure? Do these things now.

Being diagnosed with kidney failure can be life-altering. All of us live with the thinking that ‘these things don’t happen to us’. Though we don’t say it consciously, deep within we are all somehow certain that such diseases will not happen to us. When lightning strikes however, life can come to a standstill. Most of us are in denial for months and at times, years. We refuse to accept that this has happened to us.

Slowly, after a number of repeated blood tests, the reality begins to hit us that ‘yes, I have kidney failure.’

Life with kidney failure need not be bad at all. It is different for sure. But by no means does it need to be incomplete or compromised. There are several people who are leading normal lives despite being on dialysis.

There are some simple things you can do to be better prepared for dealing with kidney failure. Unfortunately many people are diagnosed just when they are on the verge of needing dialysis. Whatever be the case, here are a few things that you should do when you’ve been diagnosed:

1. Read up on all the options for Renal Replacement Therapy (RRT): 

Let’s face it. Doctors in India have little time. They have to deal with a large number of patients and to expect them to give you individualised care and attention is to ask for too much. It is important for you to read up as much as you can on all the options for RRT - a means to replace the function of your own kidneys (which have decided to kick the bucket for whatever reason). Don’t let anyone else decide for you. There are multiple options for RRT: Kidney Transplant, Comprehensive Conservative Care, Peritoneal Dialysis and Hemodialysis. Each of these has several sub-types. This link could be a good starting point.

2. Get vaccinated for Hepatitis B:

Hepatitis B is a dangerous disease. It is infectious. It is not life-threatening these days but it does complicate treatment a hell of a lot. When there is a vaccine available to prevent this, isn’t it a no-brainer to take it? Yet, many people get onto dialysis without getting vaccinated for this Hepatitis B. On dialysis, your chances of contracting the virus are much higher due to the increased exposure of blood, hospital visits, blood transfusions and so on. So, please talk to your doctor and start your vaccination schedule for Hepatitis B. (A new blog post is coming up shortly on the specifics of Hepatitis B vaccination.) Remember, those with CKD / ESKD need to take twice the regular dose - 2 ml of the vaccine instead of 1 ml each time.

3. Register for a cadaver transplant:

India has a cadaver transplant program that is slowly picking up. You need to register in the list for your city. Talk to your nephrologist and find out what you need to do to get onto the list. Even if you don’t feel like a transplant now, trust me on this, get on the list. Your turn could take years to come and by then, who knows, you might’ve changed your mind. If you have a willing related donor (immediate relative - parents, children, siblings or spouse) then of course, you don’t need to do this.

4. Get your RRT access:

If you are not getting a transplant soon enough, then you need to decide on your preferred dialysis modality if you are deciding not to go for Comprehensive Conservative Care. Depending on which modality you pick, you need to get an access. If it’s Peritoneal Dialysis (any of the sub-types) you need a small surgery that will get you a catheter in your stomach. If you pick Hemodialysis (again, any of the sub-types), you should definitely opt for an Arteriovenous Fistula (AVF) for which a small surgery will be required. It is important to get your access as early as possible even if you don’t need dialysis immediately because accesses take time to mature and you can use them for a long period of time after they’re created. You don’t want to end up in emergency dialysis with a temporary access which is far from ideal and prone to infections.

Remember, life without working kidneys is not a death sentence. At worst, it is a different life. People work full time, exercise, travel, trek and do almost everything that a healthy person can do. What is needed is careful planning, awareness and a proactive approach to your health.