Saturday, June 16, 2018

The importance of strength training on dialysis

I have been on dialysis for almost 21 years now. One thing I have noticed is that my limbs have begun to get a little weak. For example, I am unable to get up without taking support of my hands on the chair. I am also unable to sit without some support. This is more so for chairs and sofas that are low. I am completely unable to sit on the floor.

Kidney failure, especially when present for more than a few years can cause such issues. Fortunately, there are ways to avoid this and even correct it to some extent if it has already happened.

The best thing to do, obviously, is to prevent it from happening. For this, do some kind of exercise that keeps your joints supple and limbs strong. This link from Life Options has an excellent guide on the different kinds of exercise that can be done by those on dialysis. Try to get started on some kind of exercise that suits you. Include some options from all the three kinds of exercise covered in the link - flexibility, muscle strength and endurance. As with anything in Kidney Disease, check with your doctor before beginning anything new.

To me, muscle strength is very important as losing this can cause a lot of problems in doing basic stuff like sitting and standing up. If you don’t take enough care to maintain good muscle strength, you could end up losing it over a period of time.

However, I recently figured by posting a question on the Facebook group of Home Dialysis Central about the loss of muscle strength and I got some very useful responses and help on what could be done to correct it. An old friend and an old hand at home hemo gave me some very pertinent advice. He said that he had had similar problems and he invested in a good Physiotherapist who came home and spent a few months working on him getting him to exercise so that he could achieve his goals which were pretty straightforward - to be able to sit on and and get up from the floor without support. He has apparently made some very good progress over the past few months.

After reading that, I have engaged with a Physiotherapist and am undergoing training under him for my weak muscles. I have completed two weeks and have already begun to see early results.

Many of us assume, wrongly, that these things cannot be resolved. The beauty is that in today’s world, there is hardly any problem which is being experienced for the first time. People before you have definitely had the same problem. So, ask around to check if they’ve found a solution. In this case, people had found a solution and it will help me as well.

So, try to prevent muscles from becoming weak by undergoing some kind of regular exercise and if they’ve already become weak, take action to regain some of the lost strength.

Saturday, June 9, 2018

Going on international holidays while on dialysis

I often get asked how to go for international holidays while on dialysis. It is not as difficult as you might think. The key is to plan early. Few months in advance is always a good idea.

To begin with, once you’ve decided where to go and the rough dates, the next thing to do is to figure out a dialysis centre. I usually use Global Dialysis to do this. Type your destination in the search field and it will show you dialysis centres close to that location. It will also give you a clickable list of centres with distance from your location.

Spend some time on this list and click on each centre that is at a reasonable distance from your location and read the information about the centre like timings, facilities offered, reviews (very important to see if people liked the services) and so on.

Once you have picked a centre, send them an email with your dates and ask if they will be able to accommodate you. Typically most places are accommodating of holiday dialysis patients. Each centre has its own set of documents needed for dialysis. They will usually be a range of blood tests and prescriptions that would be needed. You can email or fax them to the centre depending on the mode they prefer. I find email the easiest way to communicate. Sometimes you would need to send another set of blood test reports a few days before your travel dates. Always carry a printed copy of all these tests, prescriptions, everything you’ve sent along with you.

After a dialysis session at a centre in Seattle, USA

Remember that not all dialysis centres will have English speaking staff so if you need to call for whatever reason, be very patient. Keep a record of the contact numbers with you and the name of the person you’ve been in touch with. Call a day before your session to confirm your slot.

Every centre has their own protocol for dialysis which may be different from yours. So if you need anything apart from the ordinary, take it with you. For example, I am used to buttonhole needles. I took them with me. I also asked to allow to self-cannulate and all places agreed. Some people are used to lignocaine. If so, take a vial with you. 

In the US, the dialysis centres do not provide blankets and pillows. You have to take them with you as the centres can be cold. 

There are several very good destinations around the world which you can explore even if you’re on dialysis. 

Dialysis Cruises

I love the idea of going on a cruise. There are several cruises that have a dialysis facility on board. They have dialysis staff and even a nephrologist on board. You can check out and for options.

Aboard a cruise ship in Alaska


The cost of dialysis in most international locations is much more than a session in India. So, remember to find out upfront about the cost and also find out the payment options - whether they accept credit cards or need cash etc. and be prepared with this. Most insurance companies will not reimburse the cost of dialysis abroad.

Session timings

Many centres (especially in the US) will confirm dates but not let you know the time of your session until the week before your session. So, better to avoid travel on the dialysis days.

International travel is very exciting for those who can afford it. It not only gives you a chance to see lovely places, it also gives you an insight into dialysis services in other countries.

Do try out a trip if you are able to and let me know how it went. All the best!

P.S. Thanks Ms. Astha Tandon, a guest from NephroPlus who urged me to blog about this.

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.