Living with Kidney Failure

In 1990 at the age of 38 I was diagnosed with high blood pressure. This was hereditary as my father had hyper-tension also. Then, in 2002 at the age of 50, I was diagnosed with diabetes type 2 (also like my father). This is where my glucose levels in my blood were too high, due to a pancreas that wasn’t producing enough, or enough effective insulin. Managing my diet was difficult, and pills didn’t bring it under control. It wasn’t until 2015 when my new physician prescribed insulin shots that I finally got my glucose levels under control. In 2012 my blood tests indicated a slowly rising level of Creatinine. This is the chemical waste molecule product of muscle activity. The normal level is 0.6 to 1.2 milligrams (mg) per decilieter (dL). This indicated a gradual failure of the glomeruli of my kidneys of cleaning my blood and excreting this “poison” through my urine. My levels rose to 4.0 mg/dL.


My kidney doctor (nephrologist) guessed that I had F.S.G.S. (Focal Segmental Glomerulosclerosis). This is a rare kidney disease that attacks the kidneys’s filtering units (glomeruli) which act like a coffee filter which keeps the coffee grounds in and lets the coffee drain through. In this analogy, the coffee grounds are the protein molecules, which you want to keep in your blood, and the coffee is the waste chemicals which you want to eliminate from the blood stream.  F.S.G.S. is idiopathic in that there is currently no known cause. Genetics can be a factor, and high blood pressure, and diabetes is believed to also be a possible cause.

When my doctor first diagnosed me with F.S.G.S. it was confirmed by a renal biopsy. This was a surgical procedure where core samples were taken by needle puncturing my kidneys from the back. This procedure is hit-or-miss as the F.S.G.S. can be localized in specific areas of the two kidney lobes. My first biopsy was lucky in that it found diseased glomeruli. The treatment my doctor selected was for me to take an “immune suppression” drug, usually taken by people with donated organs to avoid tissue rejection. This drug had a limited impact as my creatinine levels seemed to stabilized.

After getting a deep, tissue massage from an inexperienced masseuse, I recall she worked on my kidney areas with a lot of force. After that session, my doctor told me my creatinine level shot up. It could be the massage caused more damage.

In 2015, I had to switch my health maintenance organization (HMO), which resulted in changing all of my doctors. My new physician and new nephrologist, wanted more biopsies. I had a second biopsy, but this one found no sign of F.S.G.S. However, my creatinine levels keep rising steadily. My nephrologist had me attend a kidney failure seminar to learn the options. At the seminar, which was attended by both the elderly and even younger people.  Here were the 4 options we were offered:


  1. Kidney Transplant – This required a  compatible donor, and the single lobe would be spliced onto the femoral artery in the back above the hip. This would be followed up by a regimen of “immune suppression” drugs. The life-time of the donor kidney averages around 5 years.


2. Hemodialysis – This requires a vascular surgeon to install a “shunt” which connected an artery (vein coming from the heart) and vein (vein going to the lungs) in one of my arms. This would be followed by a life-time of dialysis treatments three times a week, for 3-4 hour sessions at a dialysis center.


3. Peritoneal dialysis – This is where a soft plastic tube (catheter) is placed in your abdominal cavity by surgery, and a sterile cleansing fluid is put into your cavity through the catheter. The fluid uses your internal membranes to filter out toxins and the fluid is drained out of the body through the same catheter. This process is repeated 4 times a day.


4. Death – Untreated kidney failure will result in death due to blood poisoning.

I elected to go for the hemodialysis option. I didn’t want a donated kidney as I had a near-death experience using immune suppressants as I contracted pneumonia. The peritoneal dialysis seemed to be too high maintenance, and the danger of infection of the catheter was high. Hemodialysis seemed the best option for me. However, it would be a few years later when I would need to execute this option.

In 2016, I started feeling the systems of severe kidney failure: Anemia, shortness of breath, loss of appetite, and diarrhea, weight gain, and swelling of my calves. My urine was extremely bubbly, like soap suds. I found myself exhausted after climbing just one set of stairs. My nephrologist told me it was time to prepare for dialysis. This meant I needed to schedule to see a vascular surgeon to have my arm examined and a shunt installed. The procedure was a one-day procedure, and I was told it would take at least 6-months for the vein to expand in diameter enough to make dialysis possible. My surgery was in July of 2016. A one-inch incision was made in my arm, and the shunt was installed. My surgeon elected to install a “AV fistula.” This is where a vein in my arm is directly grafted to a pressurized artery in the arm, connecting it to a vein, which returns the blood to the lungs.


I would need to visit the surgeon once a month as he tracked the progress of my body adapting to the shunt. I could test it by feeling the “trill” or pulse of my blood through my skin at the point of the shunt. I was warned not to wear a watch on that arm, and not let technicians draw blood from that arm, and to not sleep on that arm. In February of 2017, 8 months later, my surgeon declared my vein as ready for dialysis.


On March 23rd, 2017, I was scheduled for my first session. It was one of the most painful experiences of my life. It turns out my vein was still small, and deep, and located between my bicep and my tricep muscle of my right arm.


It took the technician 2 hours to locate my vein. He had to puncture my arm at three different places. The needles would immediately clog with blood, and he had to clear it with saline to get sufficient flow. It was like torture. Finally he achieved flow of my blood from the vein below the shunt, and back into the same vein farther down the same vein. I sat there having the machine clean my blood for four hours, as I watched the television connected the machine. I passed the time watching Direct TV. Usually I’d watch old movies or old television shows. My right hand, below the shunt would get very, very cold at times. I started wearing a glove on that hand to keep it warm. I would have to sit still, to avoid shifting the needles and cutting off the flow.  I could drink, or eat snacks during dialysis. Usually the technician sets the dialysis machine to remove 2.8 KG of my body fluids. If they go too high, I get severe cramps in my legs and chest area. They have me measure my weight before and after each treatment.  My schedule moved around, and finally I settled in on Tuesday, Thursday, and Saturday, 6:00 AM to 10:15 AM. This way I could still go to work afterwards.

During the first weeks, I found myself drained of energy after a session, and would have to go home and sleep. My weight dropped, as I shifted my diet to a salt-free, high protein, low potassium, low phosphate life style. No potatoes, no tomatoes, no spinach, no dairy products, no colas, etc.  As the weeks went by, they shifted me up in needle diameter to increase the blood flow. When they used the bigger sized needles, the pain was unbearable, as my entire vein lit up like I had hit my funny-bone. My forearm was numb afterwards as there could have been some nerve damage. (Note: My physician later told me that the ulnar nerve [funny bone] is located close to my catheter access location.) To avoid my hand flinching and trembling, the technician went down a needle size and the severe pain at puncture went down. After one month of sessions, amazingly I seemed to be adapting to this life style. I regularly wake-up on Tuesday, Thursday, and Saturday at 4:30 AM to arrive at the lab at 6:00 AM.

The fringe benefits of dialysis is the following: Renewed energy and pep, renewed appetite, better eating habits, and focus in life. As my veins expand in diameter with each treatment, the needle insertion becomes less and less painful.


4 thoughts on “Living with Kidney Failure

  1. Jim, So sorry to hear of your ordeal. So pleased you are being treated. Hang in there, and with some luck, there may be a “cure” or new treatment. Science is making incredible progress in medicine these days.

  2. While I do not know you, I stumbled across your blog and one post resonates with me quite well.
    Please know that I am am thinking of you and praying for your healing and overall health.

    God bless you,
    Mia – Atlanta

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s