LIVING WITH DIALYSIS
Throughout my life I have enjoyed eating, evidently the wrong food. Being Italian, the son of a great mom and great cook along with my dad were raised on pasta, that was our main menu. And growing up with my parents struggling, it was the cheapest food to put on the table. Mom made her sauce, or gravy as the northern Italians call it, by the pot full, then froze the sauce in jars making it handy for a meal any day of the week.
This diet was aided by a Sussex County diet when I married my first wife who died after our 43 year marriage from the combination of poor eating. She too was a good cook. I was privileged to have beef and dumplings for the first of many times to come during those years, plenty of mashed potatoes, fired chicken along with my steady diet of pasta, recipes Carolyn learned from mom. You get the idea.
During these years of my life your family doctor was your only doctor. Specialists came further in life. What led to heart problems, diabetics, hypertension was something you might have over viewed in some news paper article.
It wasn’t until much later in my marriage my primary doctor had me take a blood test, a panel of tests to determine my health. Well, you may have well thrown the medical book at me. Everything in my body was off the charts as far as being in the health range.
For my diabetics, high cholesterol, and high blood pressure was prescribed pills which I thought would take care of all my problems. I made no restrictions with my diet. Continued tests brought worse results.
Medications were increased to no avail. Finally, at the age of 55, the insulin needles came into my life, four times a day. Blood pressure, diabetics, and cholesterol, couldn’t be controlled.
Specialists came into my life by the numbers as well as education. I knew what my ailments were, but I wasn’t aware of what all of these symptoms were doing to my body. I was still, robust, and very active; invincible, I thought.
But I wasn’t invincible.
Tests came back showing decreasing kidney function, so my primary doctor sent me to Dr. Antonio Padro a kidney specialist (nephrologist). By then I was already in stage 3 kidney failure. During those early years with Dr. Padro my wife developed liver disease.
I thought you had to be a heavy drinker to have a bad liver, but it was her diet that would eventually do her in even after a liver transplant. All my attention centered on her. Her health deteriorated so quickly she was moved from the bottom of the transplant list to the top.
Finally the call came, a donor had been found. Transplant went perfectly, she must have dropped 50 pounds of fluid the first night. Released from the hospital to a rehab in Milford. But her appetite had disappeared even when she was in the hospital.
Her temperature spiked when she came home, so back to the hospital. Apparently her liver unlike when the body rejects an organ their is medication to cure the problem. But her organ rejected her body, and there is no hope for survival. She was put in a coma, passed within a few days.
Medial diagnosis, cause of death; Graft versus Host Disease, a one in a million cure.
Now living alone, depressed, I don’t recall what I ate. I existed for a couple of years.
Then I met my current wife who had lost her husband who had similar medical conditions as me, but worse, and he lost his battle.
She began attending doctors visits with me, and she educated me to what was happening with my diet. She inhaled every word and warning Dr. Pedro said to me.
Diet changed, drastically, she ate what I ate, we ate healthy. Pasta was a rare treat, once in a while I could cheat. But it was too late. I went into stage 4 kidney failure, dialysis was in my future.
In the meantime I had a heart attack and a stroke which I recovered from both thanks to a stay at Health South in Salisbury. Both took a hit on the kidneys. I was really ready for dialysis but wouldn’t give in.
But for some reason I thought I could beat my kidney problem. I walked around like a zombie, no pep.
My wife and I spent a day at the U of MD with others to see if I qualified for a transplant. Because of my health problems, and age, I did not qualify. However I could use the exchange system, finding a donor, who donates a kidney who finds a donor, exchanges, so on, or now they have donors with HIV, which with treatments are ok to use.
I figured with my age, knowing what my first wife went though, the rejection medicines at my age, not knowing how much longer I will be on this earth, after much discussion with my wife, I declined and decided if and when I needed kidney treatment, it would be dialysis in a clinic.
Their are different ways to have dialysis, the two most popular are in a clinic, Hemodialysis, or at home, Peritoneal Dialysis. I chose the clinic because at home treatment is 7 days a week, vs. 3 in the clinic; nurses and aids available if anything goes wrong, less change of infection; home treatment usually involves another person to assist with the hook-ups.
My life is dependent on a 5ft tall machine that filters my blood through an artificial kidney, which is attached to a machine. A very small amount of blood is removed and returned to one of my veins, which has surgically been adapted for this. (Fistula)
There will only be about one cup of blood outside of my body at any time during the procedure. Hemodialysis cannot do all the work my kidneys did, as healthy kidneys work all day. 24-7.
For the 4 hours I sit in a recliner, each of us has a TV to watch. We have one arm free to read, use our phone, or take a nap. The one the machine is hooked to, has two 1” needles in my vein. Movement could dislodge the needle, and with the machine pumping, blood could shoot out of your arm like Old Faithful.
The nurse and techs constantly monitor our machines, and if we are cramping, nausea, they can adjust the flow to lessen those problems.
Dr. Pedro convinced me I was nearing dialysis so we agreed to have a Fistula procedure done at Nanticoke by Dr. Stephen Carey. Because this procedure takes 6 months to ‘cure’ ready for dialysis. A small incision is made below the wrist. The first attempt did not cure as intended after 8 months.
A second attempt was made, this time above the elbow in the muscle area. A fistula directly connects an artery to a vein. The vein stretches over time, allowing the two 1” needles to be put in when the treatment is done. Fistulas are the best way to get access to the bloodstream for hemodialysis.
A Graft is also available. A graft is a tube, usually made of plastic, that connects an artery to a vein, allowing needles to be put in it. Grafts are the second best way to get access to the bloodstream for hemodialysis.
When my kidneys were near failing, I had to give in to dialysis. Since my second procedure for the Fistula did not have time to ‘cure’ a catheter was implanted in my chest for treatment. My first treatment was in the hospital immediately after the catheter procedure.
Then my whole way of life changed overnight. Whereas before dialysis I was urged to drink fluids till I exploded. Whereas salt was forbidden before dialysis, it was important I had no salt because salt would retain fluids, since my kidneys no longer discharged fluids as quickly, retaining fluid could make my dialysis treatment uncomfortable.
I would now be limited to 32 oz of fluid per day. I must avoid foods with lots of water like gelatin, soup or frozen foods, such as ice cream, sherbet, or even ice cubes; water melon which we all love. Salads, only with romaine lettuce, ice berg lettuce has water.
We have a dietitian who meets with my group each week, and a social worker, who helps us plan vacations because we must find a hospital nearby that will continue our treatments. Within a week without dialysis, the fluid build up in your body could end your life.
If you use the home treatment, the social worker will arrange for your medical supplies needed during your time away from home to be shipped to your vacation destination.
Accepting dialysis is difficult for some, some even refuse treatment, and stop treatment after time. They usually live for a short time after.
I accepted my treatment as better than the alternative. I’ve been pretty much assured I won’t die of kidney failure, but my heart will give out first. A few dialysis patients get ill, I have done well. I have more energy, can do more outside work, not short of breath, and except for the three days a week I spend hooked up to my dialysis machine, life is normal, life is precious.
I believe to my disappointment, my wife Becky has gotten the worse part of this new lifestyle. We had planned to travel more, but when you take three full days from a week for treatment at another hospital, you don’t have much time left to enjoy your vacation. Treatments take 4 hours, add another half hour for hook up and unhooking….
We made plans for week-end trips nearby just to get out some. Some may be day trips, some overnight.
Her shopping for groceries takes twice as long as she must now read labels to watch for foods with too much phosphorus, potassium, calcium, and to make sure I don’t eat too much protein.
Preparing a balanced meal is also tough for my lovely bride. I have a target weight. I weigh in before dialysis, which determines how much fluid the clinic must take off. Too much pulling, and I am more tired, the less fluid they have to pull off, the better I feel.
I receive a report card each month from the dietitian on the foods in my system. I, or I should say my wife has received a ‘perfect’ report card each month since I have been on dialysis.
I owe her my life. I’m hoping to live till 100, provided she is still around, then take it one day at a time.