Life with Kidney Disease

I let the Doctor know I had to return to work because the financial burden is too much.

He orders more blood work.

My Doctor calls me in and gives me the bad news.

Your kidney function has deteriorated very rapidly. Your Kidney function is now 27%!

I tell him my blood sugar has been fine and the blood pressure is improving.

He looks puzzled. He asked if I have been doing anything different?

I tell him the only thing different is that I had a toothache and I took extra strength Advil for it. He asked me how much? I told him, the maximum dose for about 2 weeks.

His eyes looked like saucers! He said Advil has to be the worst medication I could have taken for my Kidneys! I had no idea. He told to never take it again.

I am frustrated because I had no idea that I couldn't take it. I wonder what else I can't touch.

I have learned that we have to be our own advocate when it comes to our health.

My kidney function is still deteriorating. It is August 2009 and I am at 19% Kidney function.

I haven't worked much, because I am getting weaker.

My food lifestyle has changed completely. NO more processed food at all.

Now I have to watch the types of food I am eating. My Potassium and Phosphorous levels are being monitored closely. When Kidney function decreases there are a host of complications that also appear.

Potassium levels can climb from eating tomatoes, potatoes, bananas and processed food. Phosphorous levels can climb from processed food and so forth.

Calcium levels can drop and make your bones brittle. Supplements must be taken before each meal.

I am still waiting to see the Kidney specialist!

It is October and I finally get see the Nephrologist.

He looks at my recent blood work and tells me my Kidney function is 19% and my potassium is on the high side.

He then tells me what I did not want to hear!

The Specialist tells me my Kidney function will not recover and I will have to go on Dialysis soon.

Oh My God, I am only 44 years old and I have a young family to take care of!

What am I going to do now?

Under no circumstances can I afford to stop work. I will lose everything I have worked so many years for.

I am not one of these people that went out and bought all the toys when work was plentiful. I have always done my best to pay my bills.

I do not have a retirement plan in place, let alone the possibility of early retirement!

There are 2 types of dialysis:

Hemodialysis: This procedure is done in hospital 3 times a week. There are 2 needles which are inserted. One goes into an artery and one goes into a vein through a fistula. The blood is filtered through a machine. This process takes about 4 hours. This is mostly done with people that have NO Kidney function left or elderly patients.

Peritoneal Dialysis: This procedure is done through a catheter that has been surgically implanted into the stomach. The tube is about 1/4 in diameter. There is about 12" of tubing protruding from the abdomen. This is the recommended and most preferred procedure.
There are drawbacks of however. Dialysis is done up to 5 times per day at home.
You are unable to lift anymore than 15 poundsbecause there is a chance of developing a hernia. This would be debilitating because there is a risk of the catheter becoming tangled in the intestines. It would have to be removed surgically with a chance of not being able to put it back in again.

A special fluid is injected through the catheter (About 1 litre/ pint). It sits in the stomach (peritoneal cavity) for a few hours. It is then drained out and replaced with new fluid. Each time this is done it takes approximately 1/2 hour. This procedure replaces the function of the Kidneys.

If you are lucky enough get a special machine, it allows you to to 1 treatment per day. This would happen during the night. You hook up the catheter to a machine which carries out the procedure over a 9 hour period while you sleep.

I am undergoing the peritoneal dialysis myself.

With dialysis comes a change in life.

I am unable to carryout the same job I used to do.

I have 2 options. I can retire, but am unable to because a pension would not pay enough to support my family.

Option 2 would mean retraining in a new profession. That option also seems unlikely as school is very expensive.

At this point, I do not know what the future holds.

I just pray something will come along before it is too late.

In March 2009, when I was diagnosed, I called my creditor and asked them if I could apply for disability on my loan. I have been diagnosed
with an illness.

They told me I had no disability insurance. I told them I do. They said they would get back to me.

I waited a month and called them back.Once again they said I do not have insurance.

In November 2009, they came and took my truck away because I have been unable to work.

I called my creditor and told them I am having trouble keeping up with my personal loan (Separate from my truck loan). It is not a substantial
loan, but a burden right now.

The person on the other end of the phone actually listened to what I had to say. I even felt some compassion for my situation.

He asked me why I had not applied for disability on my loan (I WAS SPEECHLESS!) I told him I was told on numerous occasions that I had no insurance. He told me I did.

He sent out the forms right away.

I took them to my Doctor so he could fill out his portion, and sent them back right away.

1 month later I got a letter back from the insurance company.

They told me they canceled my insurance.

What do I do now?

I can't afford to hire a lawyer.

The next blow is going to be when they come and take my personal belongings.

Some days I wonder if there is still much humanity left.

It is January 2009. I am back in the hospital again. I am having complications with my catheter. I am getting really worried about the bills. The Doctor

keeps saying.... You must concentrate on your health right now, and not get stressed out.

Easier said than done!

I am having complications with my catheter. It is taking 1.5 to 2 hours to drain. It is only suppose to take .5 hours!

I spent 12 hours waiting to get into surgery. Well, I have to try again tomorrow.

They have to go in and find out why it is not working. They suspect it is caught up in fatty tissue. If they can't remove the tissue, then they may have to remove the catheter and put me on hemodialysis. Great, just what I needed to hear.

Oh, did I mention I have to travel almost 500km (300 miles) to the hospital one way.

The 1st 2 nights are in a hotel. This is coming out of my mortgage payment funds. Now I am behind in that too!

Remember, the Doctor said WORRY ABOUT YOUR HEALTH, NOT YOUR BILLS.

Unfortunately, my conscience is ruling my head right now.

I will keep you posted on how the surgery went.........