Just my thoughts...

Just my thoughts...
The randomness that is I

Friday, March 31, 2017

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

Tuesday, January 17, 2017

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!

Friday, April 22, 2016

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!

Sunday, January 24, 2016

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.

Thursday, August 27, 2015

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