Tag Archives: Kidney Failure

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.


THIS IS THE END. THE BEAUTIFUL END MY FRIEND.

I bend over to pet Gigi and JoJo the Papillons. They’re brother and sister that were saved at the same time. I notice the sun shining on the small hairs on my arm. As I look up I notice Misty chasing Wolfie around the back of the yard. I think to myself “I hope Wolfie stays in the yard because his wolf like appearance frightens the neighbors”. My mother is standing at the grille and smiling at me. She says “I love you” and I can see her delicate but arthritic hands. It starts to get cloudy and cold. I feel scared not warm and safe like a few minutes before. Someone is calling my name, it’s a man. I don’t want to go.

I hear Pearl Jam’s song “Release” or some call it “Release Me” playing somewhere. I open my eyes a little bit and there’s a shadow in a doorway. The same phrase plays over and over. “I’ll ride the wave where it takes me”, “I’ll hold the pain release me”. I say to someone “Put me back”. No one listens. I say it louder “PUT ME BACK!”. I hear voices say “she’s waking up Doctor!” and “take the vent out”. I am told I repeatedly said to “put me back”. No one knew what I meant.

I knew what I meant. I was dead. I was with my mom and my animals. There was no judgement, no guilt, no pain. My heart was full of love for every living thing I had seen there. Most important for the first time in 20 years I felt no pain in my chest. No aching hole as if something I couldn’t name had been torn out.

I did die that day I went into Kidney Failure. No one wants to talk about it. So I don’t. They feel guilty because they didn’t answer the phone. My father was at Dialysis, he has an excuse. My twin sister was home as they tried to ask if a Bipolar person who most likely wasn’t stable, wanted a DNR. I refused the Priest. It was bad enough getting looks after telling the staff I am Bipolar, telling them I am an Atheist was icing on the cake.

I felt sort of calm when the Doctor told me how bad it was. I felt a warm flush that went up to my head. A humming started in my ears and I tuned everything out. I thought of who I needed to apologize to and who I wanted to say goodbye to. I left a message on W’s machine. That was it. Then I fell asleep.

P.S. I should start photography again. I love this pic I took.

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WHAT MUSIC IS AND FANS AREN’T

As far back as I can remember I have used music to escape the real world. I used music for depressed times, drunk times, sober times, and happy times. It’s in my blood. My mother was a great dancer and she loved music. I was listening to Elvis 24/7 in the womb. My mom could also sing. I loved to hear her sing Brenda Lee to my dad. A few years before her death she did “The Twist” at a wedding. The look on her face was one of such joy I can almost erase the memory of pain that followed.

As a Bipolar person I feel everything too much. It is like walking around without your skin on. I would spend over 20 years drinking and listening to music to try and cope with feeling every emotion to the extreme. I didn’t know I was Bipolar until several years ago. Learning that I am Bipolar helped me to be sober or “in remission” from alcohol for over 7 years. Music also helps.

When I hear lyrics that change me in some way there is nothing better in the world. You think that person understands you. They probably don’t or won’t but that’s ok as long as the music does the talking.

I don’t understand why fans go on an artist’s fan page to talk so disrespectfully about a band or person they supposedly have admiration for. Also the women who want to talk about the hair of the artist or what they would like to do to them. It annoys me and I don’t know why. I think it’s all about respect. How I was raised. The music industry is a bitch. Artists do not need people calling them out, steeling set lists, and talking trash about them. They are there to share a gift with us. If we make it uncomfortable for them they’ll stop. And if the artist is married have some respect for them and yourself. No one wants to hear your sick ass plans that you are way too old to be doing anyway.

I thank the musicians that have always been an influence on me or helped me through tough times.


Retroperitoneal Fibrosis~ Diagnosis

Some of you may know that in July I went into life threatening Kidney Failure. I really didn’t have any unusual symptoms except for swollen feet. It’s a good thing something inside of me said “go to the ER”. I was close to death.

The Doctors put stents in to keep my ureters open so that urine wouldn’t build up in my kidneys. They knew the problem was with my ureters but they didn’t know what or why. I had several biopsies that showed irregularities but no reason for Kidney Failure. At the time the Doctors were concentrating on my bladder and not really on my kidneys.

They didn’t find out until December that my kidneys had been damaged beyond repair. The right on was only functioning at 19% and the left was working too hard to make up the difference.

I went to several specialists with no answers. They all agreed there was an obstruction that had to be taken care of they just didn’t know where or how. One Doctor wanted to put tubes in my back going to my kidneys. I was scared. When the Doctors tried to take out the stents I would start to go into kidney failure within 24 hours.

The last Doctor I went to is a Nephrologist. He didn’t seem to take my condition seriously because he works with dialysis patients daily. He did come up with Retroperitoneal Fibrosis.

This is an autoimmune disorder where abnormal fiber like tissue occurs behind the membrane that lines the cavity of the abdomen. The growth spreads to affect the ureters or a mass forms and presses on the ureters causing a blockage.

The symptoms for this are:

  • pain in the lower back
  • pain in the abdomen
  • weight loss
  • fevers
  • anemia
  • loss of appetite
  • constipation

Sounds like the side effects of most of my Bipolar meds. Topamax is known to cause kidney stones and may contribute to the Fibrosis. I’ve been on it at a high dose for years. No one said anything. They still didn’t say anything after I went into kidney failure. No one questioned my medications.

It’s difficult to get a biopsy for Retroperitoneal Fibrosis. Most masses are Benign but can become malignant. There really isn’t much of a cure for me at this point. I probably will have to have stents for the rest of my life. There were questionable findings in my biopsies but I guess not enough to consider cancer even though everything I read says you should undergo extensive cancer screening including an entire body PET scan.

The Nephrologist never called to tell me any of this. He just wrote up his notes and I read them in my file. I called twice to get answers and was never called back.

All of this has been frustrating. No one really wants to help because it’s rare and complicated. I’m tired of all the tests. I decided to take a break from Doctors for a month or two. I need to reconsider what I want to do and if I should consult different people in the medical field. I feel like crap but at least I have something that makes sense.


WORTHLESS AND WEAK

I feel the same way I used to feel when I was younger. Without my Bipolar Medications working it all comes back. I’m back to the worthless piece of shit I always thought I was. Only this time I’m skinny instead of fat. I still hear their insults in my head though. “Fat f*cking c*nt”, “Fat cow”, “Hope you never get pregnant because no one would ever know” (the entire room laughs). Elephant noises being made at me at parties, being spit on, and then when they were drunk enough and no one was around it would be the opposite and I couldn’t say anything. I always kept my mouth shut. Most of the time. Until I started drinking heavily and could say what I actually felt. I kind of miss that. I hate this quivering, cowardly, scared, person I am all the time.

When you are constantly having every bad, horrible thing ever done or said to you in your lifetime spinning through your head it’s hard to live.

There are days of manicness mixed in. Days I think I know things and I’m smart. But something or someone always reminds me I’m not. Days I spend large amounts of money on things I don’t need when I have a pile of medical bills. I think of drinking more and more lately. I feel I might not have much time left and I should just have fun while I can. No one is helping me. No one wants to help me. A person shouldn’t have a body temperature of 93 degrees and NOT be in the hospital. Yet I was dismissed. I shouldn’t be down to 119 pounds at 5’6″. I shouldn’t have blurry vision, trouble breathing, red urine, pain in my sides and back, headaches that are from pressure or fluid in my brain, and fatigue while taking Adderall. It’s all in black and white in my file. Things I was never told. I have Diabetes and Hypothyroidism. No one ever told me. No one has told me YET! I went to 2 new Doctors that asked “So I see you Type 2 Diabetes and Hypothyroidism.” My response was “I do?”. Nice of someone to tell me.

I am constantly obsessing over the past. The people I hurt. Did I do enough for my mom when she was alive? Did she know I loved her more than anything in the world? Was my brother in law right? Do I not take ownership of the things I’ve done. Am I just lazy? Did I deserve everything that has happened to me? Do I deserve to live? I’ve actually been told by a few people that I do not. Then I was locked in a Bathroom with a knife and told to kill myself. I was extremely drunk at the time. I believed what they were saying. So I started cutting. Of course I didn’t do it the right way and they laughed at me. One said “You can’t even do that right you stupid bitch”. I believed all of this. Sometimes 20 years later I still do.

Sometimes I wake up and think I’m back at that place and I’m drunk. It is the most horrible feeling in the world. I’m so relieved when I realize I’m home and I don’t live like that anymore. It was worse than I’ll ever really admit.

If my family knew everything I don’t know how they would react. What they do know is sometimes used against me in arguments. That hurts. I drank to feel like a “normal” person. I drank so I could talk to people, so I didn’t always feel like I was outside looking in. To throw it in my face after almost 7 years of sobriety is hurtful.

I don’t know how all of this is going to go. I’m trying to hang in there. I did call a Nephrologist today and called my Urologist to tell them how crappy Mass General went. So I’m still fighting. That has to say something.


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