A patient’s take on Chronic Kidney Disease (CKD) & the treatment options

Kidney disease –  a full circle by Malathi Venkatesan

The last few decades have witnessed rapid advances in our understanding of kidney diseases, the extent of its burden, it causes and available treatment options. At the same time, this understanding has also highlighted how stark the reality of this disease is; how we’ve only scraped the tip of the iceberg in terms of diagnosing patients and providing appropriate treatment to them and how much of a financial and emotional toll it can take on the families of those afflicted.

While research regarding all the various aspects of kidney disease is being carried out all across the world, the main question remains unanswered, Can kidney disease be completely cured?  Are we any closer to making a patient completely free from the clutches of this debilitating disease?  Dr. K. V Johnny Father of Nephrology describes  CKD (Chronic Kidney Disease) as  Death Call.

Just like cancer isn’t a single entity, so also with the disease of the kidney, treatment and prognosis depends on what the underlying cause is and how soon it is diagnosed. However, once a patient is diagnosed with what is referred to as Chronic Kidney Disease, which is irreversible and progressive, the modes of treatment available can best be described as palliative.

I write this to recount my experiences with this disease that has taken an extremely physical, mental and financial toll on me and my family. I have gone through all the various modes of therapy and offer today in modern medicine and have come a full circle with respect to the course of the disease.   

Main Functions of the Kidney :

  • It removes waste generated by the body through food intake and normal cellular activity through a process called filtration.
  • It produces a hormone called Renin which helps to maintain the blood pressure.
  • It also produces erythropoietin which stimulates the bone marrow to produce  RBCs to maintain Hemoglobin level.
  • It balances all the electrolytes in the body.
  • It maintains water balance in the body.
  • It also maintains the calcium in the bone.

kidney treatment

Thus the kidney has a major role to play in our well-being and under normal circumstances, it does this with utmost efficiency. But the biggest problem with diseases of the kidney is that unlike in the case of other organs where a disease process manifest with obvious symptoms, kidney diseases are mostly silent and require a great degree of awareness on the part of the medical professional and the at-risk patient to facilitate an early diagnosis.

Also read: Basics of Kidney diseases 

Various Modes of Treatment:

  • Hemodialysis (HD)
  • Continuous Ambulatory Peritoneal  Dialysis (CAPD)
  • Transplant either Live donor or Deceased donor (cadaver)

My Personal Experience :

I was a very normal person who grew up in a good family, got educated and led a very simple life with lots of healthy habits. Only during pregnancy I developed hypertension in the third trimester and delivery was hastened by two weeks but it was a normal delivery. After three months the BP settled down without any medication.

After many years as my menstrual cycles were erratic, my OBGYN gave me some hormones to regularize the cycle which had a bad effect on my BP. So various tests were taken to check the kidney function and all were normal.

Few years later I had sciatica pain in my leg and so took Ayurvedic treatment.  During the course of the treatment, blood tests were taken and it was found that my urine showed evidence of protein which is abnormal. So I was referred to a Nephrologist and blood tests were done. Two simple tests are done to determine the function of the kidney namely Urea which is an indicator of dietary waste and  Creatinine a by-product of muscle activity.

Both were slightly elevated. He said that this was the BEGINNING of my Kidney disease. My doctor A.J. Kripalani said “Only 33% of your kidney is working. We can only retard the disease but cannot arrest it. There is no suitable medication but you need to restrict your diet.” Regular blood tests were done to check Urea and Creatinine and there was no medication except a minimal dose for BP and some diet restriction.

I was later advised to undergo surgery to form a fistula (an access to do hemodialysis) as a preparatory step when I go for dialysis. Constructing a fistula involves connecting an artery to a vein in the arm for having an adequate flow of blood into the machine for adequate dialysis. This fistula takes about 6 weeks to mature and ready for doing dialysis. After a year I developed persistent fever and after an initial barrage of tests all turned up negative I was empirically treated for TB for 9 months. The temperature did not abate at all after 9 months TB treatment. I was in Mumbai that time.

I came to Chennai to take a second opinion about this fever and was told by the doctor that once dialysis starts the temperature may subside as the toxics may be causing the fever. It happened to be just a guess work, for the fever still continued even when dialysis was started.

Now the outcome of this is that once I start dialysis I was asked to continue the therapy even though the parameters and renal profile did not warrant it at that stage.

So this was the FIRST mode of treatment -Hemodialysis (HD)

kidney dialysis

Pic courtesy: scientificanimations.com

I went through hemodialysis for a few weeks three times per week. We took an opinion about this nagging fever from a very senior doctor Dr T.J.Cherian. He examined thoroughly and could not give a conclusive reason about this fever of unknown origin. He referred me to Dr Georgi Abraham, a senior nephrologist from Canada and who was practising in Tamil Nadu Hospital.

He after a few weeks of HD advised me to go on CAPD. He was the pioneer to introduce CAPD  in India. This method is more effective as it is done all day except night and on all 7 days. So it was almost like a normal kidney function to remove the waste products and balance other electrolytes and water as against hemodialysis which is done for only 4 hrs a day three times a week.  In CAPD your diet restriction is relaxed, you do this procedure at your home without going to the hospital and get hooked to the dialysis machine.

So my SECOND mode of treatment -CAPD was started

It is a method where they insert a catheter as an access into the abdominal cavity which is a surrounded by a thin membrane covering the intestines and abdominal cavity called Peritoneal membrane and has many capillaries and constant supply of blood. Through that catheter 2 litres of dialysis fluid (dialysate) of different strength for each exchange is filled into the peritoneum  Here the membrane of the peritoneum which is semi-permeable with three different sizes of pores act as the filter between the fluid and the blood as in artificial kidney.

Image result for capd

Glucose is also added to the solution to remove excess water from the blood which causes puffiness in the patient. So like osmosis the water is removed from the blood through the small pores and by process of diffusion, the heavy molecules like urea and creatinine from the blood is transferred into the fluid and the smaller ones from the dialysis fluid into the blood to maintain electrolyte balance.

Thus the blood is cleaned of waste molecules and excess water. Then the fluid has to be drained out by 4 hours otherwise reversal will take place  This I managed to do myself as lots of care has to be taken regarding hygiene to prevent infection going from the catheter into the peritoneum. So this method went on for few months. I could not travel as I had to carry voluminous dialysate and wherever I went I had to be back home within 4 hours to do the next exchange.

One day I had very excruciating pain in the upper abdomen with lots of vomiting. I was admitted in the hospital and it was found to be strangulating umbilical hernia. This was due to the pressure of the dialysate fluid in my abdomen said the doctor and it had to be operated immediately as gangrene had developed. So I was operated as an emergency and few centimeters of the intestine were removed due to strangulation and gangrene.

Also read: Surgical management of diabetic foot 

I was back on HD for two weeks till the wound in the abdomen healed. Due to the surgery my hemoglobin level plummeted to 5 (normal 12 ). Then again I went back to CAPD. Again after few months, I developed pain in my abdomen and vomiting. It was unmistakably another hernia again. I was operated again and this time they put a mesh around that area to prevent a recurrence. My doctors said that I should consider a transplant as a solution to the problem and not live artificially depending on machines. So I started to enquire and study the various impacts of transplant and its benefits and precautions to be followed

When routine serology test was done it was found I had become positive for the Hepatitis C Virus. This is contacted only through exchange of body fluids and is a known complication of hemodialysis where the dialyzers are reused in an effort to minimize the cost of dialysis. Fluids from patients can get mixed with each other at the point of dialyzer reuse if the unit does not take adequate precautions. This was an unexpected development and one that complicated matters.

Undergoing an organ transplant isn’t as simple as placing the organ in the recipient’s body and everything becomes hunky dory. Because our body’s immune system works by being able to differentiate that which is not its own. Any transplant organ is treated like an infection and attacked by the body’s immune system; a process called rejection. Therefore to prevent a graft from being rejected every transplant patient has to take lifelong medications that suppress their immunity.

The side effect of this is obviously that the patient becomes more prone to developing infections due to a lower than normal immunity. So transplant could not be considered with this problem as the infection may flare up when immunosuppressants are given after the transplant. So I was given a treatment with a medicine called Interferon. This had a violent reaction with very high fever and body pain and extreme exhaustion and often hospital admission. Since I could not tolerate it the medicine was withdrawn. I remembered the low grade fever I had for 2 years still continued.

Also read: Haemoglobin in the blood report- what does it mean?

So I was advised by my doctor to consult an immunologist in Vellore about this fever. There the doctor did various tests and assured that this fever of unknown origin would not interfere or affect the outcome of the transplant. This was a strong assurance that we could proceed with the transplant. Meanwhile, my blood sample was sent to Singapore to be tested for HCV. The result was HCV was dormant. So the transplant could be finally scheduled.

So with all the tests done and matched with my donor kidney (my cousin) the transplant was done on May 19th 1995. All went well the output of urine through the catheter was excellent and creatinine plunged from 8.5 to 0.6.  I was kept in isolation with so many tubes inserted in my body for 8 days. Again on the 5th day I developed pain in my abdomen with lots of vomiting and I could not retain anything I ate. I was diagnosed to have another hernia.

The idea of putting the mesh was deferred as it turned out that this hernia developed through the previous mesh which had somehow been damaged (My doctor later presented a paper on this also about the mesh being not foolproof). Within just a few days after the transplant and with heavy immunosuppressants and wounds in the operated area still very raw and unhealed the doctors did not want to do another hernia repair.

The hernia would bulge painfully if I turned or coughed. With very good urine output and vomiting  I became very dehydrated. So again I was operated for hernia and the doctors really kept their fingers crossed for the best in such a critical situation. So within a year I underwent four  abdominal surgeries including the transplant.

My urine refused to come out without aid of catheter inserted. The doctors did not insert one for that may cause infection they feared. But I simply could not pass urine though my bladder which was very very full. I told doctor “ I do not care about the new kidney please relieve me of this very painful discomfort of unable to empty my bladder ‘ Then they did put a catheter  and almost 4 litres of urine was emptied within 15 minutes .

At this stage I developed medicine induced diabetes and I had to urinate often. All the heavy steroids brought about another disorder in the body which will remain all my life time and had to be treated like diabetes with medicines and diet etc

I was discharged after 2 weeks and had to do regular routine checks for kidney functioning. Next three months I had to observe very strict rules to prevent infection. No going to crowded places, restriction on visitors very stringent method of preparing food and serving, measurement of urine output etc had to be strictly followed.

All along my mother, husband my daughter and my brother were of tremendous support to me to fight this disease.  I returned to Mumbai and was very normal within the restricted framework which I had to observe both in diet and avoiding infection

Following next few years was very smooth and I resumed my normal activities. My daughter’s marriage took place after two years of transplant and I was able to perform with lots of energy and strength. I started travelling to many places without worrying about dialysis and post transplant precautions. Likewise, life was smooth sailing for 18 years after transplant and I almost forgot about my illness.

After 2010, 15 years after the transplant I started getting UTI (Urinary Tract Infection ) often. I was admitted in the hospital very often and was given heavy doses of antibiotics for two weeks or so. After two years Dr Georgi Abraham felt that there was a slight scar in the transplanted kidney which may be indicative of kidney getting rejected slowly and the UTI  infection must have infected the kidney also. Nevertheless, I was managing for three years.

In 2012 one day I felt very breathless and pain in the chest and gasping. I was again admitted in Cardiac ICU and the doctors took ECG and ECHO test which did not show much variation. But the enzyme test showed some elevation and so Dr Ajit, the Cardiologist, suggested an angiogram to be done.

So after a couple of days, an angiogram was done and the doctor found a block in one of the vessels. So the option was to do a bypass or put stent. With my present condition prone to infections they felt bypass may be a risk so they said they will try to put a stent and if that does not work they will do bypass.

Also read: Basics of planning a surgery in summer 

Fortunately the stent was fixed without any problem. Then within two days I developed UTI again and had to be in hospital for 5 days with heavy doses of antibiotics. Till now the stent is working well in spite of so many episodes of very high BP and potassium levels.

In 2013 my legs started to swell and I was not energetic.  On one of the hospital visits, the doctor asked me to get the fistula done again to be prepared in case need arises. This upset me a lot for I knew that my transplanted kidney was slowly giving way and slow rejection had started. But I underwent another fistula surgery.

By the middle of June my BP was uncontrollably high and did not respond to any medicine. So I was again admitted in ICU and given heavy doses of BP medication through the intravenous route yet it did not settle down. As the doctors felt dialysis should be started immediately to bring the BP down they inserted a temporary venous access in my thigh and started the dialysis. After a week they removed it and dialysis was done through the fistula in the hand.

Once again I was hooked to the grind of regular dialysis by a machine. This went on smoothly for some time. One morning in August I had extreme pain in both my legs and could not even get up from the bed and turn any side. So I was wheeled to a neurosurgeon. I had severe pain and was unable to get off from the car. I had to be lifted and put in a wheel chair.

He took various X rays and said nothing is evident which could cause the pain and suggested physiotherapy. So I was again admitted to find a cause for unexplainable pain. Various tests like MRI, bone scan, body scan and blood cultures were done. Again all the tests showed no evidence or cause for this pain. I could not even turn from one side to the other or get down from bed and it was a most painful period and I was given heavy doses of pain killers.

Slowly after 3 days, there was some improvement and I started to walk with a walker inside the hospital room. I was discharged after three weeks. When I asked the doctor what caused such intense pain and settled without any treatment he said “I do not know the cause. It is a medical mystery “. With all this, I had dialysis three times per week which was a challenge with severe leg pain.

In the meanwhile I had a small cyst on my back. It was small and the doctor said just to ignore it as it was harmless. But it started to grow and became very big and the lump was red. So the surgeon felt it should be removed because it was getting infected. So again I was at Operation Theatre the seventh time and they removed the cyst.

It proved to be larger and deeper than they anticipated eventually proving to be as big as a tennis ball with 2 ounces of pus fluid! So the surgery took long and I was in the hospital for another week as the wound had to be cleaned and dressed every day. This wound took two months to heal completely.

Again I had pain in my left groin and temperature and was admitted to the hospital.  They took a Doppler test which showed some abscess accumulation in that area. So again I had to be operated a this being the eighth time to the operation theatre. After removing the pus two days later when they did an ultrasound they found that some more pus was present in the deep muscle area. So they had to operate again much deeper into the muscle. Every day the surgeon did the cleaning deep inside the raw wound which was a horrible experience with excruciating pain.

I was unable to sit in the toilet as it was hurting very much on the thigh. This period was a nightmare and severe trauma. When I asked about this infection the doctor said it may be due to a long period of immunosuppressants ( 18 years). So ironical that medicine given to prevent rejection led to this another terrible problem as its side effect!

I understood that patients not only have to handle the disease but also other added problems caused by medication. I was on a heavy dose of antibiotics which had its own side effects of mouth ulcers and hair loss   Everyday day dressings had to be done till the long gap closed. After the bleeding stopped oozing of inner fluid started that had to come out from the cavity. Slowly the cavity started closing from inside I was unable to sit due to the heavy pad dressing along the groin and the skin became so shrivelled and dark due to the heavy bandage around to hold the dressings  It took three months to heal. I had to go on dialysis with all this pain and discomfort.

When this settled I started to get breathless in the night.  Thrice at night, I had to be rushed to the hospital. There was not much weight gain but BP was very high. Every time they also checked the potassium level it was very elevated. Once I was rushed to the hospital and the potassium was 9.2 and the pulse was 14. The doctors said they have not seen a high level of potassium and patient surviving.

Later my legs were buckling in as I walked and I could not stand up. So when this became severe I went to hospital feeling so breathless and very unwell. It was a Sunday so they put me in MICU and found that the heart was getting arrested. They quickly revived and the potassium was very high and nebulizer was given often. Again I remained in the hospital for 1 week. BP was elevated and they took Holter test to check the 24 hrs BP pattern. 4-5 times I was almost given up because of all these elevated levels of BP and potassium.

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This episode of very high potassium continued and the doctor felt that I was under dialysed. So he made 4 times a week dialysis. This was very difficult for me as I was literally in the hospital most of the days. Still with 4 times a week dialysis the potassium and BP did not settle down.

The doctor felt the cells which store potassium must be leaking but could not control it. They felt my diet must be causing this and I assured them that I followed strict potassium restricted diet taking all precautions. This went on for many weeks and did not settle.

One day during dialysis the returning blood turned very dark and the flow was not adequate and the machine was sending alarm every now and then. The technicians there did not know the reason why it is turning dark and flow was blocked.  In spite of giving saline wash every time the flow was blocked and alarm went on.

Two days it was happening like this and had to stop the dialysis in three hours. So the doctor wanted to do a Doppler to see if there is any clot in the fistula which was causing this problem.When I was taken to the surgeon to check my fistula he said that the fistula has failed and there is no “thrill”(the beating of the fistula) at all.This was a big shock.

Now we understood the reason for blood turning dark and getting blocked. All along it appears the blood in the machine was inadequate which was around 180-200 ( good flow should be 250- 300). This means inadequately dialysed and this is the main reason for high level of potassium in spite of being dialysed 4 times a week.

Is this an overlook or oversight of the technicians?  Because of this oversight I suffered for 3 months frequently visiting the hospital at all odd hours with high potassium and BP without knowing the cause!

Since the fistula failed the doctor put a PermCath as an access for dialysis. Here they insert a catheter in the chest which goes to the heart chamber and the blood comes directly. So again for this procedure, I had to be in Operation theatre for the ninth time under local anesthesia. I was kept in the recovery room and after the sometime heavy bleeding started.

Very heavy loss of blood and all the thick pad and dressing they applied got soaked in half an hour. The doctor put a heavy bandage around that area for only through compression the bleeding will stop he said. They gave me blood transfusion but next day they did the dialysis through this perm cath. I was in the hospital for 3 days till the bleeding became less.

Dialysis went well with this method and the flow was 300 and the potassium level came down within 3 days and the BP also settled  This indicates inadequate dialysis. This was the cause of potassium levels going up and high BP  and the legs buckling in and all the hospital frequent visits.

Now the dialysis is going well but lots of irks due to the plasters on the skin around the catheter-like itching, pricking pain and skin become sensitive and sometimes bleeds. It should not get wet and so normal bath also cannot be taken. Due to this, my very favourite exercise swimming was totally stopped which is very frustrating

So now I am back on dialysis from where I started the treatment A FULL CIRCLE of, having gone through  Hemodialysis, CAPD and Transplant, Rejection of the kidney, access failing and in the process all the accompanied trauma of infections and frequent hospital prolonged stay for the last one and half year   and  yet I find no cure or  respite  or  freedom from this deadly disease

Now may be will I think of the next step i.e a second transplant?  What if again rejection takes place and again repeat the cycle? I shudder to subject myself through all the suffering again without any hope for a total cure.

It will be a real medical breakthrough and a big boon to patients only when the reason for Rejection in spite of all rigorous tests for matching is taken care, has to be researched and discovered  Then final cure will be the outcome.  Till such time I suppose patients with renal failure will go through the circle again and again. Our hope lies only in medical research on this major area to prevent rejection which in true sense will be a great step to conquer this deadly disease.

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