Tag Archives: Chronic Kidney Disease

HAVING AN EXPIRATION DATE

I’ve been past my “suicide” phase for years now. I still think about it on really bad days but not like I used to when I self-medicated with alcohol. When I self-medicated with alcohol I didn’t just think about it. I’ve been sober close to 10 years now.

Seeing the results of my blood work I was scared. I didn’t know my kidneys were getting worse so fast. They use your GFR to determine when you should go on dialysis or go on the list for a kidney transplant. When the number hits 30 your Doctor starts preparing you for your options.

My GFR was a 40 one year ago. I kept putting off going in for surgery to have my ureteral stents changed. Part of the reason was the Depressive Episode I was in for a very long time. The other part was just fear. You know when something is wrong with your body. I knew I was losing weight again but there was some swelling in my feet and ankles. The color of skin is the same as chalk but with dark circles under my eyes. I’ve lost muscle mass specifically in my temples. I didn’t notice how bad until this morning. They are so hollowed out I could collect rain in them. I’ve been a little short of breath and having trouble doing simple tasks.

I’m pretty sure I won’t make it on a transplant list. I checked again today. If you have a mental illness, a past history of drug/alcohol abuse, or an autoimmune disease, you usually have a hard time getting on the list. I have all three. I have twin who could donate her kidney but before I could ask I was told she wouldn’t. She had to think of her children. Pretty sure her husband had a big influence on this decision.

Because no one knows why I went into Kidney Failure, or why my kidneys are getting worse, no one is sure about dialysis. My other option is to have a tube coming out of each side of my back just under my shoulder blades. The tube would drain fluids out of my system and goes down each leg. Someone has to learn how to clean and change the drains which I don’t have anyone to do this.

Before I make any big decisions I’ll go to my appointment on Tuesday and see how much longer I can keep the stents. If they don’t send me to the ER then I’m going on a Road Trip to Deep Ellum, Texas. I don’t care what anyone says. I have limited time to do what I wanted to do. So I’m going to try it. What’s the worse that could happen? lol


SHOW ME HOW TO LIVE

I admit I’m afraid. I also admit it’s my own fault. I kept putting it off. I even might of done it on purpose.

The Doctor that changes my ureteral stents wanted to see if I could go a year this time but if I had any problems I should come in sooner. I started having problems around the 6th month. I didn’t call or make an appointment. I ignored the pain, the dizziness, loss of appetite, some swelling in my hands and feet, headaches, change in vision, etc. My Bipolar medications were not working correctly either. I’ve been more than depressed for some time now.

I went online to see exactly when I last had my stents changed. I could also see lab results and notes from surgery while I was there. I wasn’t happy.

When I first went to this Doctor he had to exchange the stents put in by a Doctor that didn’t like me very much. Normally I would think I was being dramatic but I brought my sister with me to 2 of my appointments.

My twin is odd in her own way. She can ignore me and say horrible things but if anyone else does it they better run. She’s gotten physical with a few people on my behalf. Nothing major, she grabbed someone by their lab coat and pushed another person out of the way who wouldn’t let us leave the Hospital.

So when she witnessed how this previous Doctor treated me in his office she wasn’t happy. I wasn’t either. He insulted me in front of the entire team about to operate on me and then told them I was “a difficult patient” and they should be happy I didn’t “bring my guard dog” referring to my sister.

When the Doctor I have now went to change the stents he found the guidewires had advanced up both ureters to both kidneys. On the left side the had crossed over one another. This caused scarring in the ureters.

I also didn’t know my GFR has been declining or that it’s as low as it is. I was told it was 67.

The last three results have been 48, 45, and 40. When it get’s to 30 you’re supposed to start discussing dialysis or transplant.

As far as a kidney transplant goes I highly doubt I would get one. My Dad is on dialysis already and my twin sister has already said no.

If you have a mental illness, have to take specific medications, have a history of alcoholism or drug addiction, have an autoimmune disease, you most likely won’t be considered. I can check all of these boxes.

I have things on a Bucket List left to do. I want to have serious conversation with Dave Navarro. We have a lot in common. There are places I want to see. I would like to see Steven Tyler in concert one more time. I want to spend a day with a pack of wolves. There are so many places I wish I could travel to. Places filled with art, music, food, lights, people, where I can walk around and just take it all in.

 


KIDNEY DISEASE AND MENTAL HEALTH

KIDNEYS

Kidneys are 2 bean shaped organs about the size of a fist. They’re located just below the rib cage, one on each side of the spine. They filter about 120-150 quarts of blood to produce about 1-2 quarts of urine.

HOW THEY WORK

Blood enters the kidneys through an artery from the heart. The blood is then cleaned by passing through millions of tiny blood filters. Waste material passes through the ureter and is stored in the bladder as urine. Newly cleaned blood returns to the bloodstream by way of veins. When the bladder becomes full the urine passes out of the body through the urethra.

WHAT CAUSES CHRONIC KIDNEY DISEASE OR FAILURE

Diabetes and High Blood Pressure are the most common reasons for Chronic Kidney Disease (CKD) or Kidney Failure.

What many people don’t know is that over the counter painkillers and illegal drugs like heroin also damage the kidneys. 3-5% of new cases of CKD each year is caused by the overuse of painkillers like NSAIDS.

Drinking large amounts of dark colored soft drinks is also linked to to a higher risk of developing CKD. Early detection can help prevent the progression of kidney disease to kidney failure.

There are also inherited diseases, autoimmune diseases and malformations that occur while a baby develops in the womb that cause a narrowing that prevents a normal outflow of urine and causes urine to flow back up to the kidneys damaging them in the process.

KNOW YOUR URINE

The color of your urine says a lot about your kidney health.

  • Clear/Pale yellow: Good means you’re well hydrated
  • Dark Yellow: Dehydrated
  • Pink/Reddish: Can be caused by food or blood in your urine
  • Foaming/Fizzy: Protein is in your urine and is an early sign of kidney disease

There should never be protein in your urine. If your Doctor finds protein in your urine more than once it means CKD is present. Do not dismiss this finding.

OTHER MEDICATIONS

It isn’t just Lithium that damages your liver and kidneys. Long term use of most psychiatric medications can cause kidney damage. Prozac is the one listed the most. Cholesterol medications have also been known to damage the kidneys.

MY STORY

My Primary Care Doctor had told me several times over the years that there was blood and protein in my urine. She eventually sent me to a specialist who said “Sometimes people just have blood and protein in their urine”. This is false. 

I began to lose weight rapidly and had no appetite. My Doctor saw my weight loss as a good thing because I was 250 pounds. She also assumed it was due to my Bipolar medications. I had lost 50 pounds in 2 months. I continued to lose weight and my blood pressure became extremely low. Still, no one around me said anything. Not even when my weight reached 119 pounds and I had trouble just standing up.

No one said “You look great!” or “You look like a skeleton” they said nothing. I know why my sister didn’t say anything, she was upset that I weighed less than she did. She actually told me this later. What everyone else’s excuse was I don’t know. To lose that much weight in less than year and not think something is wrong seems odd to me.

Then one day I woke up and both my feet were quadruple in size. I was shocked. I knew it was a bad sign so I drove myself to the ER. The Doctor there told me I needed to call my family and have them get there as soon as possible, then he asked if I wanted to sign a DNR and see a Priest. I couldn’t reach any of my family before I crashed and everything was out of my hands. The Doctor ignored my DNR which was a good thing I guess.

There were so many missed signs and symptoms that went ignored by my Primary Care Doctor. Dealing with all of the doctors after wasn’t fun either. No one knew why I went into kidney failure. In the end I was left with 1 working kidney. It functions now at 67-68% but has Hydronephrosis which means it’s swollen twice it’s normal size. I will get progressively worse until I need dialysis or die.

My Bipolar medications and the medications I take for Social Phobia, PTSD, and Conversion Disorder, never really work right because my body isn’t filtering them the way it should. They either build up in my system so I have too much or I get none at all.

The worse part is my illnesses can’t be seen so most people think I’m lazy or want attention.

The fact is I’m dying. I’m sick all the time. If it isn’t my body it’s my brain. I’m tired of trying to make people understand.

I miss laughing with my best friend, I miss going out, I miss a lot of things.il_570xN.1221202833_1udl

 

 

 


STENTS? KIDNEY FAILURE? CHRONIC KIDNEY DISEASE? URETERS?! (What Does It All Mean?)

I’ve written about having problems with my Kidneys before. This time I would like to give some in depth information. Yes, some of it sounds too clinical but it’s your body. If you don’t know your own body how are you to know when something isn’t right? We can’t always depend on the Medical Community to advocate for us or to have all the answers. So try to stick with me while I use words even I have not heard of.

Along the way I’ll inject some of my own results so maybe it will help to make sense.

YOUR KIDNEYS

Healthy kidneys are about the size of a computer mouse, but they do a lot of work. They filter all the blood in your body every 30 minutes, removing waste, toxins, and excess fluids.

Kidneys also help to control blood pressure, stimulate red blood cells, keep bones healthy and regulate chemicals in the blood essential to life.

A Renal Scan of my kidneys showed the left one was enlarged 6 times the normal size and my right kidney was the size of a grape.

HOW THINGS WORK

Urine collects into a part of the kidney called the renal pelvis. From the renal pelvis the urine travels down a narrow tube called a ureter (each side has one) into the bladder. The bladder slowly fills with urine and empties from the body through another small tube the urethra.

Both of my ureters had thickened blocking the travel of urine. This is rare in adult women unless there is trauma/injury involved. In my case there wasn’t. Usually doctors only see thickening in one ureter not both. They do see it in men with prostate cancer or some infants.

DAMAGE

Each kidney is made up of tiny filters called nephrons. Nephrons can become damaged by diabetes, high blood pressure or other causes and stop working. When this happens it’s called Chronic Kidney Disease, when not treated it can lead to Kidney Failure.

SIGNS AND SYMPTOMS

Early Chronic Kidney Disease really has no symptoms. It’s usually suspected when a routine urine test is done. If blood and protein are found in your urine your Doctor should look into the cause of it. If just one or the other is found they should still do further testing.

Other than diabetes and high blood pressure, kidney stones, blood clots, scar tissue from surgery, cancer, or a congenital blockage can also be the cause. If it isn’t treated as soon as possible the risk of permanent damage to your kidneys is high.

As CKD advances you may have pain in your sides and back. Abdominal pain and nausea are common too.

I had blood and protein in my urine for years. I also had pain in my sides and back. I was sent to 1 Urologist who performed 1 test and concluded that “Some people just have blood and protein in their urine for no reason”. Turns out he was wrong.

The only answer I have is that I have Bilateral Ureteral Thickening that is Idiopathic (no known cause). Every 4 to 6 months I have to go under anesthesia to have the stents replaced that keep both ureters open. The human body is not meant to have these stents in permanently but when they tried taking them out 24 hours later I went into Kidney Failure again. I have constant pain on both sides at the bottom of my ribs and both sides of my back, my blood pressure is always too low and my body temperature stays at 93 to 94 degrees. My immune system is compromised so I get sick easily. I’m always tired. I have to drink an enormous amount of water which causes more pain and discomfort. My left kidney is the only one working at 70% the left is useless. Not one Doctor in the my State or the two surrounding me has answers. At some point the stents will stop working and they will have to make a hole coming out of each side of my back for a drainage tube that comes out and down your leg. The dressing has to be kept clean and changed often. It isn’t pretty.

Do your research. If you think something more is going on and your Doctor isn’t as helpful as you think they should be, find another one.

To this day I have not been given a special diet for my kidneys or told that I should have a Kidney Doctor. I was only told to stay away from dark tea and soda. Be your own advocate, I can’t say it enough.

None of the Doctors can tell me how all of this works with my Bipolar medication either. I’m guessing it doesn’t. Since this started I have not been the same. My family can tell you that. Below are pictures of different stents used, how my kidneys kind of looked except the left was bigger and the instrument used to place my stents through the urethra. Good thing there is anesthesia.


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