Patient Speak

Raju Khandelwal

When I initially began dialysis, my life was extremely difficult as I was always under tremendous stress for managing fluid balance. I was constantly facing problems of breathlessness, raised BP and swelling in legs. Initially, limiting weight gain was highly challenging.Thereafter, I was sent for counseling to a dietician who helped me almost memorize all the rules for limiting fluid intake.

Herewith would like to point out guidelines that helped in managing my weight gain:
  • Always bottle up the prescribed amount of water and avoid exceeding that limit.
  • Weigh yourself daily and check your feet daily for swelling, if you find swelling, stop intake of all liquids.
  • Keep your salt intake to minimum. Take salt only in recipes which cannot be eaten without salt, example gravies, dals, pulses, etc.
  • Take saltless rotis, parathas, etc.
  • If you feel breathless, immediately call up your dialysis staff and ask if you can preponed your dialysis.
After keeping these few things in my mind, now I am living like any other healthy, normal person. I am back to my routine. I attend my work, travel & party without any fear or guilt. Now I am no more facing problems of breathlessness, too much weight gain, high BP, etc. Now I can easily climb stairs, FOB (Foot Over Bridge) of railways, etc.

Thanks to dialysis, I have got a new lease of life and a new purpose in life making it more meaningful & interesting & all this with regular dialysis, little medication and some dietary restriction. Small efforts but BIG REWARDS.

Vishal Gadhia

Food plays an important part of our lives. It nourishes the physical, mental and spiritual structure we are enclosed with. Only a healthy body can sync with a healthy mind. My journey with kidney disease has changed the way I think and the way I eat too!

I was diagnosed with kidney disease before 15 years and since then, I am on dialysis. Undergoing thrice a week hemodialysis was initially like a dull and lifeless job and I knew I was not going to pull off longer. However, my fate had many more things in store for me.

Initially; when I began undergoing dialysis, I had no clue about what was right and what was not for me and my potassium levels were always beyond normal range. I was then advised by my Nephrologist to meet a Dietician in this regards. When I met my dietician, I realized that diet was not something which I could adopt for a week and then forget. Also, it is vital to maintain follow ups regularly as diet is never same throughout. Slowly, after few counseling sessions, I began to develop deep interest in diet and gradually, I mastered it so well that I was then capable of guiding new patients too.

Herewith, I wish to share a few important tips that may help all dialysis patients to keep their serum potassium in normal range:
  • You will get a ready list of low, moderate and high potassium ingredients from your doctor/ dietician. Take high potassium ingredients only 5 – 10 gms once in 2-3 months or on occasions only. This will not raise your potassium and will help you relish your meals too.
  • Do not avoid partying but avoid binging. Whenever you plan to go for a party, carry some portion of suitable meal for yourself like vegetable pulav, biryani, vegetable parathas or vegetable sandwich and eat it first. This can be followed by little quantity of moderate to high potassium foods.
  • Avoid having low sodium salts/ any other salt supplements.
  • Refrain from having coconut, coconut based sources and fruit juices completely.
By following these guidelines, I was able to keep my potassium in normal range and thereby I was saved from risk of fatality. This way I gained handsome confidence and now I am totally incharge of my health.

Currently, I am proudly hosting a group on Facebook named “Diet and Recipes for Kidney Patients”. In India, large number of patients has several misconceptions, inhibitions and confusion regarding various aspects of diet and I feel that by making use of social media, we can help them clear their doubts.

Hence, I decided to take an initiative to involve myself in sessions and conferences on diet and now we organize online learning sessions wherein patients from around the globe participate along with expert dieticians. I feel that this is my bit that I can do to help my fellow patients benefit.

Lastly, I wish to only put that it is better the sooner we realize that dialysis diet is not a dead end of a road, however, it’s a new beginning towards healthy survival.

Bijal Shah

When I was diagnosed with kidney disease in 2013, the first symptom that I felt was severe nausea and vomiting. This led to drastic weight loss. I would barely manage to eat 1 - 2 chapatis a day. Finally, in 2014, I was advised to begin dialysis which was obviously shattering.

I was struggling hard to deal with the stress of undergoing dialysis and accepting it. This was the time when my doctor asked me to undergo diet counseling.

When I had the first diet session, initially I was shocked and surprised to learn that now I could eat much more than before. This meant that I was unnecessarily burdening myself with thought that I would be bombarded with additional restrictions due to dialysis.

The first thing I was told was that, “I should eat and eat well!”

This was because I had lost a lot of flesh weight which needed to be regained, healthily. Slowly and gradually, with the help of diet support I regained my weight. This was motivating as now I was having a healthy feeling. Now I decided to take my hands on experience in cooking and started exploring new recipes. Eventually, I managed this task so well that now I can, not only prepare main course but also several make mouth-watering delicacies and relish them.

Herewith are my inputs on how to make dialysis diet more palatable, attractive and appealing:
  1. If you are not a diabetic, then you may relish on homemade easy-to-prepare desserts and sweets like:
    • shrikhand (sweet yogurt),
    • rasagullas,
    • Sandesh,
    • Mishti doi (sweetened curds),
    • halwa (lauki/ gajar),
    • sheera (rawa/ dalia),
    • chikkis (rajgira or kurmura),
    • puddings,
    • custard.
    If you are a diabetic, you may add an artificial sweetener and relish these recipes.
  2. As we all know that we need to eat less salt, herewith are certain guidelines for making diet more tastier with less salt:
    • Use lime juice/ vinegar in salads to compensate for salt,
    • Use onion and garlic, ginger paste in gravies to make them tastier (avoid onion/ garlic salt),
    • Use amchur powder or tamarind pulp in dals and pulses.

By following these tips, I started enjoying my meals and now I no longer feel that I am losing on anything in my diet. I am eating to my heart content and am performing all my daily activities. I do marketing, shopping, grocery, etc along with cooking.

Finally, I conclude that, diet support is extremely essential to remain active, healthy and independent on dialysis. Now, I am no longer a helpless patient, but a proud, positive and confident personality!

Ami Shah

If you ask me personally, every game has its own set of rules to be followed; be it - cricket, badminton, tennis or chess. You are disqualified if you try to break the rules. I take my diet advice in a similar fashion. In the beginning it requires efforts to memorize all the rules; however, once you understand them completely, they become automatically become a part of routine lifestyle.

I have been on dialysis since 3 years and I only try to follow certain simple rules to avoid any complications in my health:
  • Always eat on time.
  • Don’t fast and don’t feast either.
  • Live a balanced life and avoid living on edge.
  • Always get your queries and concerns resolved from the right source rather than discussing with others. For instance, I have seen patients discuss their problems with other patients/ relatives going through same conditions and then take same medicines/ food ingredients/ alternate medicines which are not prescribed by their doctor/ dietician. This may not be a good idea since each and every person has different body type. It’s good to get the problem / query solved by your doctor/ dietician.
  • Have your diet modified under the guidance of a dietician from time to time.
  • Last but not least, monitor your liquid intake. Avoid going above your set limits.
By following these rules, I do not think that I am sick as I am able to lead my life as normally as any other person. According to me, apart from monitoring dietary intake, blood pressure and few changes in food habits, there is nothing this disease does not allow you to do. You can very well join a gym, trek, run and socialize. There are young students who attend dialysis session and appear for exams next day. They manage to study during their dialysis session. Also, I have seen young executives making their presentations; annual reports while ongoing dialysis session and I knew that I am not alone to be affected.

It is a non-problematic disease but you need to follow all the golden rules to manage your life effectively and I have chosen that for me!

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