How to Deal with Dialysis Patients And What Immediate Relation Should Know
Disclaimer — It is a personal story of my struggle to deal with Dialysis patients, in no way considering medical advice. All cases are different and depend on comorbidities and age. Pls, consult your Nephrologist for any advice.
Dialysis affects every aspect of your life. I lost my father, who struggled for 3 years on Dialysis, and sharing my painful experience. I have seen my father losing breath in front of me. Dialysis has not saved him for over 3 years.
It shattered you to the core when you see you don’t have much time.
I learned the hard way, and this experience will help you if you are supporting a Dialysis Patient.
The National Kidney Foundation (NKF) estimates that around 10% of the population worldwide affect chronic kidney disease (CKD)
- The shock of your life is when you see a high creatinine level of greater than 1.2 for women and more significant than 1.4 for men may be an early sign that the kidneys are not working. As kidney disease progresses, the level of creatinine in the blood rises. No way you can bring down the creatinine level. Yes, it is disturbing news for you. I tried exploring all alternative therapies, but they only deteriorate the condition further. It is better to accept it and move on.
- 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 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.
3. Next, disappointment happens in a relationship, which will baffle you or make you weak & cry. Your relationships will keep a distance or leave your life out of this, which you have to deal with ALONE. Your son, daughter, or wife will stand by you if you are lucky. Otherwise, you are of your own for a challenging and painful life you must leave for the next 1 to 5 or very fortunate, maybe 10. 50% (depending on age and existing comorbidities) of the patients are no more who started 3 years back. Unfortunately, I could not find them on earth now. I am not trying to demotivate but to tell time is less. Do all important events in your life. You need to be compassionate while dealing with Dialysis patients.
4. It can show you who cares and who doesn’t. Sometimes the reality of this is difficult to face. Whom you think will stand by you through thick and thin is all gone. In reality, you will feel a worthless burden on your family, which will take you to depression. You are helpless but have no way out but to 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 to the person) matters.
6. My recommendations would be to do all the good things you have imagined, go out, and start doing. Remember, you have limited time.
7. Don’t think twice about delaying starting Dialysis once your Nephrologist recommends 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 in your blood, such as potassium, sodium, and calcium.
9. Select a hospital near your home; I suggest only 2 miles for an emergency. Remember, you will come to a situation where you cannot walk independently and must remain dependent on your son or daughter or hired attendant, so being close to the hospital for emergencies helps. I recommend dialysis sessions a week thrice; 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 the 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’s fistula has not even started. If you have diabetes, your life is not over 2 to 3 years on dialysis (higher for patients aged 20–50 years). It is a stressful process of appointment and getting the operation done. If it works after one month of nurturing, you are lucky. It will be 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, Dialysis happens in a 3 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 home half-dead at mid of night. Forget about going out of the city on 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 to treat 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 tries to recuperate the access. Maintain your sugar in control; otherwise, you end up blocking all access possible to Dialysis.
14. Cramping: This can happen in all muscles; you 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, 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 is that you cannot drink water over 2 glasses (200 ml each) daily, which gradually reduces depending on all other things you eat, having water like milk, tea… the start of a non-sense life.
18. Infection at dialysis sites is common, making you shiver like hell. This is a sign of antibiotic treatment to kill the infection; otherwise, replace the catheter — a harsh reality we faced many times.
19. No to driving; the advice is for someone else to drive since you will be a drain to hell even to walk a few steps and gradually transition to a wheelchair. I remember my house on the first floor and how difficult for my sister and me 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. You need a helper for sure.
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’s advise
CBC -Complete blood count
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.
I maintained an excel sheet to historied the vitals
Remember doctors 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, and Bun are one of the most critical.
Disclaimer–Follow your Nephrologists Advise above its experience sharing to prepare you.
This article is for informational purposes only, should not consider Medical Advice. Consult a Nephrologist before making any medical decisions.
