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20 Challenges Dialysis Patients and Immediate Relation Should Know.

Kiran Khannas a Nuclear Engineer, a die-hard blogger, and writes an article on personality/skills development for the leadership roles.

Dialysis Patient

20-challenges-dialysis-patients-and-immediate-relation-should-know

Challenges

  1. The shock of your life is when you see a high creatinine level of greater than 1.2 for women and greater than 1.4 for men may be an early sign that the kidneys are not working properly. As kidney disease progresses, the level of creatinine in the blood rises. No ways you can bring down the creatinine level. Yes, it is worrisome news for you.
  2. Dialysis is the only solution, do not look for alternate therapy and waste your and your near one time, resources and money. Instead, recommend you to make a checklist of important things you want to do before being too weak to even manage yourself. This may sound harsh, but it is a reality. Prepare your finance well for a heavy load in your pocket.
Author's Father Late Shri Kulbhushan Rai Khanna

Author's Father Late Shri Kulbhushan Rai Khanna

3. Next disappointment happens in your relation, which will baffle you or make you weak & cry. Your relationships will keep a distance or go out of your life to be out of this mess which you have to deal with ALONE. If you are lucky, your son or daughter or wife will stand by you otherwise you are of your own for a f**king life you have to lead for next 1 to maybe 5 or very fortunate maybe 10 years. Reality is 50% of the patients are no more who started 3 years back, I could not find them on earth now.

4., Unfortunately, and fortunately, it can show you who cares and who doesn’t. Sometimes the reality of this is difficult to face. Whom you think they will stand by you through thick and thin is all gone. Face the Reality you will feel a worthless burden on your family which will take you to depression. You are helpless but no way out but live this journey.

5. Thoughts and prayers: everybody will send you their “thoughts and prayers” but few will realize that action (e.g. donating an organ, donating your time or just talking/doing something manageable with that to the person) is what matters.

6. My recommendations would be to do all the good things you have imagined doing, go out and start doing. Remember, you have limited time.

7. Don’t think twice to delay starting Dialysis once your Nephrologist recommend you. It would be a waste of time and you are worsening your quality of life and it may end up giving you a heart attack because of excessive pressure on your heart. High BP and Diabetes have most of the detrimental impact on your kidneys.

8. Hemodialysis is a treatment to filter wastes and water from your blood, as your kidneys did when they were healthy. Hemodialysis helps control blood pressure and balance important minerals, such as potassium, sodium, and calcium, in your blood.

9. Select a hospital near to your home, I would suggest only 2 miles for an emergency. Remember, you will come to a situation where you cannot walk of your own and have to remain dependent on your son or daughter or hired attendant so close to the hospital for emergencies helps. Dialysis session recommended are thrice a week, do-follow strictly. You can manage with one or two (you may feel sustainable), but the outcome in 6 months will take you to ICU. Follow your Nephro Advise of thrice a week routine.

10. Get your access site as early as possible as suggested by Nephrologist you either have a catheter or fistula which can restrict movement. It may itch and it can be painful and have other complications. The access site involves a minor operation with mild sedation. Catheters can be painful, are local in a very awkward place like an antenna, and make typical showers impossible. Chest catheters (very painful for some time) can compromise the mobility of the entire arm. This often adds to the feeling of helplessness, social isolation, and physical grossness common among dialysis patients.

11. Fistula is the best but they will last from a few days to months to years. Very unpredictable, my father fistula has not even started. If you have diabetes your life is not over 2 to 3 years on dialysis (higher for patients age 20–50 years). It is a stressful process of appointment and getting the operation done with success only if it works after one month of nurturing. Highly disappointing if it fails. FACE it.

12. Dialysis requires 5–6 hours of time commitment per session. It is more stressful for the attendant unless he sits with a simulation problem to solve. Also, the Dialysis happens in shift environment, you will be lucky if you get morning or day shifts. Night dialysis is screwing for you and your family since you end up coming to home half-dead at mid of the night. Forget about going out of the city on a vacation you and your family are houses arrested.

13. Thrombolysis (you will hate this word), also known as thrombolytic therapy, is the use of drugs as treatment for the breakdown (lysis) of blood clots that have blocked your dialysis access. This treatment involves the injection of clot-busting drugs through a catheter, which delivers drugs directly to the site of the blockage. You will yell because of pain when the dialysis nurse will try to recuperate the access. Maintain your sugar in control otherwise, you end up blocking all access possible to do dialysis.

20-challenges-dialysis-patients-and-immediate-relation-should-know

14. Cramping: This can happen in all muscles, you would usually get them in your legs. This happens during and after dialysis as it pulls fluid from your body because the kidneys can no longer do that.

15. Nausea: This was the worst! Everybody has experienced nausea at some point, so it is easy to relate. Doctors can help if it is constant.

16. Blood pressure issues (your enemy and you hate this shit) your kidneys regulate blood pressure and dialysis can mess with that. Your blood pressure would dip so low (into the 70s) giving you a feeling of DEATH. This is scary and makes it hard to catch your breath. Mostly it happens when you try to take out more fluid (excess water you drank)

17. Water Intake: What would be more stressful than you cannot drink water more than a 2 glass (200 ml each) in a day and this gradually reduce depending on what all other things you eat having water like milk, tea… start of a non-sense life.

18. Infection at dialysis site is common and this will make you shiver like a hell. This is a sign of antibiotic treatment to kill the infection, otherwise replace the catheter — harsh reality we faced many times.

19. No to driving, the advice is someone else to drive since you will be a drain to hell even to walk a few steps and gradually transition to wheelchair. I remember my house on the first floor and how difficult for me and my sister to drag my father on a chair to the first floor. Shift to ground floor or flat with a lift is a better option if possible.

20. Anaemia: this got me out of breath. Stairs were hard to climb, walking was difficult and will become impossible soon for you — physical movement hurt.

What you need to do every month and follow your Nephrologist advise

CBC — A complete blood count (CBC) is a blood test used to test your overall health and detect a wide range of disorders, including anemia, infection and leukemia. A complete blood count test measures several components and features of your blood, including: Red blood cells, which carry oxygen. A complete blood count (CBC) is a blood test used to test your overall health and detect a wide range of disorders, including anemia, infection and leukemia. A complete blood count test measures several components and features of your blood, including: Red blood cells, which carry oxygen.

KFT — The Kidney Function Test includes the following tests to monitor kidney function: Blood Urea Nitrogen (BUN)/ Urea: Blood Urea Nitrogen is a test to measure the amount of urea nitrogen present in the blood.

LFT — Liver function tests, also referred to as a hepatic panel, are groups of blood tests that provide information about the state of your liver. These tests include prothrombin time (PT/INR), activated Partial Thromboplastin Time, albumin, bilirubin (direct and indirect), and others.

Excel Sheet of Key Health Performance Indicators

20-challenges-dialysis-patients-and-immediate-relation-should-know

Remember Dr’s are very busy and you must maintain the database and highlight to your Dr about the KPI of your health so you can take the action.

Sodium, Potassium, Bun is one of the most critical.

If you have hypertension, diabetes, or chronic kidney disease they advise you to reduce sodium intake even further to only 1500 mg/day. Refer www.dietaryguidelines.gov.

While dialysis is beneficial in clearing the blood of accumulated electrolytes and toxins, it loses nutrients during dialysis, including the loss of approximately 0.2 g of protein per litre of the filtrate. Refer e Kidney
Disease Outcomes Quality Initiative (KDOQI) guideline. You need to be mindful of taking high protein diet egg white or additional supplement as recommended by your dietitian.

You can get very useful information at the following sites https://www.kidney.org

6 Things People with Kidney Disease Should Do:

  • Lower high blood pressure
  • Manage blood sugar levels (diabetes, the strongest association with excess mortality). Cardiovascular disease (CVD) causes up to 70% of all deaths in people with Diabetes (Syed Khalid Imam FCPS, in Glucose Intake and Utilization in Pre-Diabetes and Diabetes, 2015). Say NO or LIMIT Sugar intake. Black coffee tastes good without white sugar.
  • Reduce salt intake (take fresh instead of frozen processed food)
  • Avoid NSAIDs, a type of painkiller
  • Moderate protein consumption
  • Get an annual flu shot

9 Things Everyone Should Do:

  • Exercise regularly
  • Control weight
  • Follow a balanced diet
  • Quit smoking
  • Drink only in moderation
  • Stay hydrated
  • Monitor cholesterol levels
  • Get an annual medical test (CBC, KFT and LFT)
  • Know your family medical history (Measure BP and diabetes regularly)

3 Simple, Life-saving Tests:

  1. Blood Pressure (BP test)
  • High blood pressure can damage small blood vessels (glomeruli) in the kidneys. It is the second-leading cause of kidney failure after diabetes.
  • Good Score: Below 140/90 is good for most people. Below 130/80 is better if you have chronic kidney disease. Below 120/80 is considered best. Check with your healthcare team to see what is right for you.

2. Protein in Urine (urine test)best

  • Traces of a type of protein, albumin, in the urine (albuminuria) may be an early sign of kidney disease. Regular amounts of albumin and other proteins in the urine (proteinuria) indicate kidney damage.
  • Good Score: Less than 30 mg of albumin per gram of urinary creatinine (a normal waste product)

3. Glomerular Filtration Rate (GFR) (blood test)

  • This measures how well the kidneys are filtering the blood. Doctors measure blood creatinine levels and perform a calculation to find out your glomerular filtration rate (GFR).
  • Good Score: Over 90 is good. 60–89 should be monitored. Less than 60 for 3 months indicates kidney disease.

The best site for all your dialysis-related questions where a worldwide community of dialysis patient interact and seek advice https://forums.homedialysis.org/

Comedy Movie watching during dialysis sessions reduces depression and anxiety and improves quality of life-

Complementary Therapies in Medicine, Volume 52, August 2020, 102488

They associated the watching comedy movies with reductions in anxiety and depression scores, complications and improvements in quality of life.

Disclaimer–Follow your Nephrologist Advise above its experience sharing to prepare you.

This article is for informational purposes only, we should not consider it Medical Advice. Consult a Nephrologist before making any medical decisions.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2020 kiran khannas