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
