My Graft

2 years and many surgeries on my graft. You can see the pattern though my arm is upside down. One needle goes into each side of the graft. They attach to tubes which is attached to the machine. One needle pulls my blood, it runs through the dialyzer and goes back in through the other. 3 times a week. A graft is only one way to dialyze. #kidney #kidneypatient #kidneydieaseawareness #educate #thestruggle

After The Kidney Transplant

* *Not for those with a weak stomach**

You may think “Yay! She got a transplant, everything is back to normal!”. Nothing could be further from the truth. You're getting the short version.

From the moment I woke up after the transplant, things have been challenging.

I woke up with a tube down my throat and I couldn’t breathe.

Whatever the anesthetic was they gave me, caused a lot of mucous in my nose and throat and the tube was so far back and literally against the side of my throat. They don’t know how you’re going to react coming out from under the anesthesia, so my wrists were restrained.

I couldn’t talk with the tube and no one could understand me. I kept motioning to give me something to write with but I still had a lot of anesthesia in me and with a restrained hand, it was illegible.

They kept thinking I was having anxiety and kept telling me to take deep breaths, when the reality was, I was starting to suffocate. I thought I was going to die while everyone looked at me crazy. It is so frustrating trying to communicate with people who have no clue what you’re saying and even worse, when you're in a panic.

I finally gave up talking and turned to the right and bent my head as far as I could and hoped that gravity was on my side. It was! I was able to start expectorating and breathe a bit.

The nurses told me not to spit on my clothes. Man, whatever. So they’d clean me up and when I felt like I couldn’t breathe again, I’d do it all over again.

Finally a Black nurse came in and I did all the same limited hand movements I’d tried before (like I needed to write something) and instead of telling me to calm down and breathe, she actually released one of my hands so I could write. I guess she saw the desperation in my eyes.

I was finally able to write (shakily) that I couldn’t breathe. She was able to get something to help clear out my throat so I could breathe with no problems.

Remember, all this is just in the few hours after surgery…

Over the course of the day, I was hooked up to so many monitors and given so much pain medicine, I could barely stay awake. I remember someone telling me that they needed to take me to radiology because they didn’t know if the kidney was rejecting because there wasn’t much output. They discovered that there was a small blockage between my bladder and my kidney, so back into surgery I went and they put in a stent to open it up.

It was touch and go the first couple of days.

Soon they were able to take the tube out of my throat and when that happened, I was happy to be able to breathe, but then my meds went from intravenous to oral.

11 new meds a day wreaked (and is still wreaking) havoc on my system. I could barely keep anything down and what I kept down, I couldn’t keep in. It was a very humbling experience to not be able to do anything on my own and be at the mercy of people who I may or may not have been a priority of.

I noticed that one of the anti-rejection meds they gave me, gave me the shakes really bad and I told this to no less than 3 nurses. I asked for someone to call the doctor but no one really listened. Within a couple of (hours, days? I'm not sure), I had a splitting headache and asked for some of the heavy meds because it wouldn’t go away. I thought I’d sleep it off. When I woke up, it was even worse. I asked for an ice pack for my head and asked them to call the doctor because something wasn’t right. You guessed it. They basically ignored my request.

Later that night, I was in bed about to text my sweetheart goodnight when my hand started shaking uncontrollably and my head kept jerking to the left.
Four seizures later, they told me that the medicine they gave me (the very same one I had complained about) had caused the seizures. Now, in addition to all the other monitors, I also had one on my head now, to monitor my brain activity and a chewed up tongue and lips.

This Chicago hospital became my home for the next 30+ days. My creatnine levels were too high and they still thought I was at high risk for rejection.

I finally came home a couple of days before Christmas and got to bring my catheter home with me. I HATED that pee bag!! It was uncomfortable and annoying and I had to keep emptying it and measuring my output to report during my follow up visits.

Oh, did I mention my follow-ups were once a week? So…until I was released to drive, I had to find a way to Chicago once a week WITH my pee bag in tow.
When they finally took it out almost a month later, I was so relieved…until I realized that after 5 years of producing no urine while on dialysis, I had 0 bladder control. I was just like a baby at the beginning of potty training.
Accidents were many. Poise and bed pads became my friends. I was too scared to go anywhere because 1 I didn’t want to be subjected to germs and 2 I didn’t want to pee on myself. THAT went on all January. I still don’t trust myself on trips to Chicago or if I know I’ll be out for awhile, so Poise are still my friends. I’m not embarrassed. I was at first, but my sweetheart was constantly in my ear telling me it was alright and just because it was exactly what I needed to hear, I knew it would be. Sometimes you just need a few words of encouragement to push you to do better.
For the most part things are getting more and more normal. The meds? They jack up my stomach at least a couple of times a week still.
Today is one of those days. I glare at my meds for a few minutes before I take them because even though I know they will work in my favor, I know my body is taking what it needs and booting out the rest as quickly and as often as possible.
Thanks for reading my posts this month. I hope I was able to make you more aware of your kidneys and that the things that people who have some kind of disease or failure really do go through much more than what people see…

#kidney #kidneydieaseawareness #educate #thestruggle
#kidneydisease #dialysissurvivor #transplanted
#kidneyeducation

It's Been a Long Time...

It's been a long time...Seems like this is how all of my posts begin anymore. The last post I wrote was about Prince. A LOT has happened since then.

I finally got a kidney back in November *PRAISE GOD* and it's certainly been an experience. I've had some ups and downs. Spent a LOT of time in a hospital. I don't want to have that experience again.

I've learned some things about people too or should I say I was reminded up close and personal. Someone I already knew that I love with all my heart showed me that he will always have my back and will never let me go through anything alone. My guardian angel down here on earth.

Another (another of my guardian angels on earth) showed me that she will be right there with him. (They can be double trouble if you mess with them, lol) Then there are others I thought would have my back, but it seems that's only true if others take the first step.

At 48 I'm learning even more that I have to separate myself from some, so I can keep in focus with who I am and what it is I want.

I have learned so much about myself by listening to Friday Night Chat and Chill with DJ Tan. I seriously take something from each episode. You should check him out some time.

I'm determined to make some positive life changes this year. Some will like the changes, others won't but I'm doing this for me and only me.

Happy 2017!

Prince OD? I ain't buying it! Not on purpose anyway!

This is the thing about drugs...when you're sick, if you can't find one that takes care of everything bothering you, you find one for this and one for that. The average person doesn't read the ingredients of the meds. They see this takes care off stuffy nose, this takes care of allergies and that takes care of headaches, not realizing some of them like the decongestant and allergy medicine have a high possibility of containing the same thing. 2-3 days of trying to get better, you feel worse, so you keep popping, not realizing that what is making you sicker is twice the amount of the same medicine in your system. That is hard on your body because you've overdosed and don't even know it.
That and this is my personal opinion, but if he, as an artist, was walking around with a cane because he needed hip surgery, but his faith doesn't believe in blood transfusion that the surgery may have required, I'm not going to believe he intentionally poisoned his own body.
That man was vegan and took immaculate care of his body, which is why he never aged a bit. They can go on with that mess!

Springfield's Black History #blackhistory Share the knowledge -

Springfield's Black History #blackhistory Share the knowledge Eva Carroll Monroe

January 24, 2012

He was my best friend and we would get on each others very last nerve at times, but he was the one person I knew always had my back, without a doubt. I was the one with him when he took his last breath on January 24, 2012, but his heart didn't stop beating until all of his kids made it to him one way or another. Classic him. Never left a single one of us out. I miss him more than I could ever put into words.

I was determined to not be down today, but it started off on a bad note, so I'm going to try laying back down until I can get my mind and heart right and have a functional day.

I'm Tired

This isn't about working. This isn't about dialysis (well, I AM tired of that. Donor where are you?) What I am tired of is people having an attitude or not accepting that I am who I am.

I have been on this earth nearly 47 years and for 40 of those years, I stifled myself because there were people who never have accepted the spirited person that I am. Things I wanted to say and do, I mostly didn't, in order to meet approval that to be honest, has never really come.

I have always heard "You need to...", "Why don't you...", "you should...", things of that nature. Never once have I heard "that's nice, but if you try this, it might be even better" or "I really like the way you..."I mean really, no one does EVERYTHING wrong. I've had more acceptance from people online, who I didn't even know at first.

When I turned 40, I decided I was tired of this attempting to please shit that wasn't getting me anything but stressed and depressed. That's what happens when you try to please others, you know. You don't allow yourself to just be and just like some people will read what you post/tweet/IG and keep coming back each day because it's great advice, but they refuse to hit that "like" or "retweet" button just because it's you, people will refuse to give you any validation or positive reinforcement. I've learned to not to give a second thought to what people think about me. I honestly don't care, if I'm true to me...

So again, unapologetically, I stopped doing what others expected me to do and I began to be true to myself. I was truthful instead of sugarcoating. I wasn't purposely hurtful, but sometimes people really don't get it when you give them the light version.

Then I met this guy...he isn't hurtful, but I guarantee if you're doing something that paints yourself in a dimmer light than he sees you, he will straight up tell you about it. Yeah, I get pissed at him sometimes, but 9 out of 10, when I actually analyze, he's right.

Truth. That is something everyone claims they want, but when some folks get it, they can't handle it. So anyone who knows me, knows what happens next. I tell you the truth, you get pissed. Well don't worry about me trying to say much more than hi and bye after that.

I'm not a malicious person and if I see you in a situation where I think it could end up bad, I'll try to talk to you. If you don't want to hear me, good luck. On that same note, if you see me doing something or looking a certain way, come to me straight and don't try to hem haw around. That's just going to make me mad. If you come AT me as opposed to talking TO me, know that I've shut you out as soon as I felt the attitude.

Life is hard enough without trying to decipher the things that people "try to say without really saying". Just speak up!

And let me be

I Hate Dialysis

Brain Fog

I've been on dialysis since 2008. Most people look at me and can't tell. I try to live life as normal as before, but sometimes I just can't. I stopped writing blogs because I'd really have something to say and when I'd start writing, the words wouldn't come. It's very frustrating. I'd stopped reading so much because I'd forget what happened in the previous chapters and have to go back sometimes. It didn't happen all the time, but enough that I'd wondered if the Alzheimer's that plagued my Grandfather and his sibling (possibly siblings, I don't know enough about them to compare) was beginning to surface in me.

One particularly frustrating day, I posted a question to the Facebook Kidney group I belong to and I was SO glad I did!! Apparently it's something that happens to dialysis patients and transplant recipients and it even has a name, Kidney Brain Fog! That coupled with getting into my mid-40's, I have to write so much down just to remember these days.

I often have conversations with a co-worker and mid-sentence I'll go blank. I can look at something and not be able to quickly remember what it's called. Simple things. Like "notebook" for instance.

I have a notebook that I write in at work, so I don't forget the tasks I'm given. So very frustrating, but I keep trying.

I always had a great memory. Never forgot faces. I mean years could pass and I could recall such small details about things, people and situations. No more. I'm sure all my surgeries haven't helped either. A lot of Fentanyl has gone through my body and who knows how that will affect me in the long run.

I've always liked word games and I was good at them. Not so much anymore and again, it's frustrating. I play a lot of very common words, but I'm not playing to win. Just playing for fun. I usually keep a lot of games going because I know I need the challenge. just like trivia games. I have forgotten a lot of history facts and Trivia Crack reminds me of that. More than anything, I put together puzzles on an app I've downloaded.

I stopped taking classes, because it was hard to retain information. I've just accepted that until I'm no longer on dialysis, memory will be an issue.

I'll take it over some of the other issues I see my peers suffering from. It's embarrassing though.

Well tonight, I was talking to a good friend after playing a word that I came up with after guessing, because as hard as I tried, I couldn't find a word in any of my letters. One thing led to another and she, at some point, said I was just guessing and I agreed. It was not a big deal to me because it kept my mind busy. Well she thought that was awful and that it was kind of pointless to play without knowing what a word meant.

She made me feel absolutely stupid. She hurt my feelings so deeply, I couldn't even say anything. I just pulled my cover over my face (I was at treatment) and I just cried.(Like I'm about to again).

I quickly ended the conversation.

Having a disease that no one can see gives you limitations that no one knows or thinks about until you say something out loud. I get tired very easily. I can walk 30 minutes on a treadmill one night and the next time I'm winded and hurting after 10. It's frustrating and depressing. I thank God for others going through this also, because I can share my feelings with them and it doesn't make me feel judged. It's things like this that make me stronger, but I'll probably cry yet again tonight just because I didn't speak up...that upsets me too. My friend and I have the type of relationship that we can tell each other anything, criticism included and I know she meant no harm, but I honestly think it was the most hurtful thing that's ever been said between us.

Maybe I'm overreacting. Maybe I won't be as upset in the morning, but a word of advice...don't assume that what you see and what you know to be are always what they are. Some people find strength in trying to be as normal as possible while fighting a battle they aren't sure they can win. Sometimes we don't share our feelings because it will hurt people to know our experience, so we continue to suffer in silence.

What is an Ash Cath?

The first day I ever dialyzed, the needle that carried to blood back to my body somehow shifted and I was infiltrated. That means it went back in under my skin and not into a vein. That resulted in a fast trip to the hospital where they put in an Ash Catheter. I hated this thing because I couldn't raise my hands over my head. I couldn't wash my hair and I couldn't take a shower. The path of the catheter is into your chest, up through the jugular vein and into your heart. It is easy to get infected, so it must stay covered at all times and sterilized and cleaned before and after every treatment.

AV Fistula

An AV fistula-the second type of access I had. It's the same concept as the graft, but with my own veins. It worked well for 3 years before it clotted and stopped working. The bumps are aneurysms, from the veins being repeatedly used and stretching out of shape. It actually looked like I had two golf balls in my arm, but my vascular surgeon removed most of it for me.

Diabetes and Kidneys

When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).

- See more at: http://www.diabetes.org/living-with-diabetes/complications/kidney-disease-nephropathy.html#sthash.JSznBYNn.dpuf

Don't Eat Your Vegetables!!

So in addition to the post a couple days ago, for those of us on blood thinners, leafy greens in large quantities (including plain ol lettuce) are out of the question. Grapefruit too. So no smoothie cleanses for us.

But Potassium is Good, Right?

High potassium, also known as hyperkalemia, is a condition that occurs when your blood contains too much potassium. According to the Mayo Clinic, a normal range for potassium is between 3.6 and 5.2 millimoles per liter of blood or milliequivalents per liter (mEq/L) (Mayo).

Potassium is a type of electrolyte (minerals that your body needs in order to function correctly). Potassium is specifically important to your nerves and muscles. All your muscles need potassium, including your heart.

The most common cause of high potassium is kidney failure. When your kidneys fail, they can’t perform their job of removing extra potassium from the body. This can lead to potassium build-up.

Another possible cause is heavy alcohol or drug use. If you are a heavy alcohol drinker or drug user, your muscles may begin to break down. This breakdown can release a high amount of potassium into your blood from within muscle cells.

You can also raise the levels of potassium in your body above the normal range by overusing potassium supplements or by taking chemotherapy drugs.

Certain kinds of trauma—like being burned—can raise your potassium levels as well.

The symptoms of high potassium depend on the level of the mineral in your blood. You may not experience any symptoms at all. If your potassium levels are high enough to cause symptoms, you may experience:

fatigue or weakness
a feeling of numbness or tingling
nausea or vomiting
problems breathing
palpitations or skipped heartbeats


In the extreme cases, high potassium can cause paralysis and heart problems. If your potassium levels are too high, your heartbeat can become irregular. If left untreated, high potassium levels can even cause your heart to stop.

Because of this, it’s important that you see your doctor promptly if you start experiencing any of these symptoms. Extremely high potassium levels will require you to be hospitalized until your levels are back to normal.

Doctors routinely perform blood tests during your annual checkup, or if you have recently started a new medication. Any abnormalities in your potassium levels would show up on these tests. Because of this, it’s likely that your doctor will catch high levels of potassium early on.

However, if you skip regular checkups, you may not be aware of high potassium levels until you start developing symptoms.

Usually, treatment for high potassium levels has two goals—to help your body get rid of the excess potassium and to stabilize your heart.

Medical Treatment

If you have high potassium due to kidney failure, hemodialysis is your best treatment option. Hemodialysis uses a machine to remove waste from your blood because your kidneys cannot filter your blood effectively.

Drugs may also be used to treat your high potassium levels. Gluconate might be given to reduce the effect that potassium has on your heart.

Your doctor might also prescribe diuretics (pills that cause you to urinate more) to help your kidneys get rid of excess potassium. In some cases, you might be given a resin by mouth. Resin binds with the potassium, allowing it to be removed from your body during your bowel movements.

At-Home Treatment

In addition to medical treatments, you can do to some things at home to help alleviate the symptoms of high potassium levels.

One of the easiest ways to naturally lower your potassium levels is to reduce the amount of potassium in your diet. This means limiting foods and supplements that are high in potassium. Some foods that are potassium-rich include:

bananas
nuts and beans
milk
apricots
salmon
Some salt substitutes are also high in potassium. When you buy a salt substitute, make sure to avoid any that list KCI (potassium chloride) as an ingredient. Foods that are high in additives—such as manufactured baked goods and sports drinks—are also usually high in potassium.

It may also help if you eat less red or processed meat. Try to drink more water and exercise regularly, too.

You may like to take herbs as a way to treat your ailments. However, there are a few herbs that you should not take when you have high potassium levels. Alfalfa, nettle, and dandelion can actually increase your potassium levels and should be avoided.

Nothing Like a Balanced Diet to Stay Healthy, Right?

Dieting while on a renal (kidney) diet is unreal! Everything you have been taught to eat is not good for you! Add bring on blood thinners and it makes you not even want to eat!

About Over The Counter Meds

I Can't Have What?!?!?

Things Dialysis patients/people with kidney failure must avoid or have very little of. Pick up 5 random packaged foods/drinks in your house right now and see how many have these ingredients.

Acute Renal Failure

Causes of Acute Renal Failure

What causes Kidney Disease?

Do your best to get/keep these under control

Signs of Kidney Disease

Kidney disease is pretty silent unless you know what the signs are. Getting tested is as simple as peeing in a cup.