After thinking it over, I figured maybe sharing a little bit of background about myself would be good. I sometimes find it difficult to open up and speak completely free of myself. Which is ironic since that’s one of the main reasons I wanted to start a blog. An outlet for feelings, sharing my life experiences good and bad in hopes of some self discovery and connecting with others who may relate in some way. Our life journey is all about self discovery and sharing. Answering all of those questions in life as we go along. With me being the classic Virgo type A personality, I am forever trying to figure things out and put answers to all of those ‘why’ questions. Quite the big feat. I know. Wish me luck with that.
I’ve mentioned a bizillion times already that I’m divorced. I make no secret about that.
So that automatically places me in the ever popular ‘dating after divorce‘ category which is oh so fun. To make things just a tad more fun, I’m also in the over 40 category. Awesome.
Anddd, for good measure I should throw in the fact that I also have health issues. Chronic serious health issues.
Well, doesn’t that sound just peachy?
So today I thought I’d share a bit about my life changing medical journey. If my sharing helps even one person out there in even the tiniest way, to know they’re not alone in their experience, then I am a happy girl. No one should feel like they’re the only one going through a challenging time.
I had renal failure aka kidney failure (kidney disease) at the young age of 27. I was completely healthy and it was completely unexpected (aren’t most diseases unexpected?)
Even after I had been to my doctor 3xs in a 10 day span, had also seen a kidney nephrologist regularly for a year straight for kidney stones, neither of them found a thing wrong with me. What’s ironic is when I finally couldn’t take one more day feeling as awful as I was, I had zero strength left, my urine was pure red and I was now vomiting blood, the Dr’s still never diagnosed me. Instead they sent me on my way with a smile and a prescription for iron pills. Said I was anemic.
I don’t know, is it only me that finds that weird?
But…you know … Doctor knows best right?
Okay, allow me to just insert here… always, always, always get a 2nd (or in my case a 3rd) opinion when you feel somethings not right. Always trust your gut. You know you like nobody’s business.
At that point just the thought of walking just a few feet and thinking about the energy it would require made my eyes well up with tears. I knew something was terribly wrong. With my husband working out of town I called my parents to come and care for my kids and had my sister take me to the Emergency.
The first ER Doctor that night told my sister she could pick me up in the morning saying, ‘She’s only anemic, we’ll give her some iron and fluids and she’ll be good as new in the morning and you can pick her up and take her home.‘
Alrighty then, I thought. Give me the damn iron and fluids and let’s get this show on the road already. He made it sound so simple and easy that I almost felt guilty for taking up a bed.
Well, for some reason during shift change in the middle of the night, one of the new Dr’s went over my file and decided to run a few more tests. That’s when he discovered it wasn’t a simple case of lack of iron and fluids, instead it was a complicated case of barely being alive, my kidneys had 5% function left.
Doctors said at that time I was the youngest and the sickest they’ve seen come into the hospital in that condition. Repeatedly the doctors commented on how rare that was. Being told I was rare sorta became a commonality. I learnt pretty fast that if my doctors were stumped by a medical complication they would be like, ‘Well, this doesn’t happen very often, its extremely rare.’ Oh yes, I am a lucky one.
I think when they finally diagnosed me accurately in the ER that night the Dr. said something like, ‘In approximately 4 more days undiagnosed you would’ve dropped dead.’
Well, I don’t think he used the words ‘dropped dead‘ exactly, instead he muddled out long multi syllable medical terms. I’m sorry but at some point I went into shock and wasn’t able to make sense of a bloody word he was saying.
Doesn’t matter how it’s worded to you, the only thought you have running wild in your head in that moment is ‘Am I going to die?’ On continuous rotation in my brain. ‘Am I going to die?’ Over and over.
He ordered me a valium stat.
He must’ve observed I was looking at him but my mind had already checked into crazy town.
I was immediately transported to a better equipped hospital 30 minutes away. I was admitted and then settled in for an unpredicted 4 month stay. I actually thought I’d only be in for a couple of days, get some medicine, feel better, get cured and be on my merry way. I should’ve known I was going to be in for the long haul when they flew my husband home that day and said he better make plans to be close to home and the hospital.
My kidneys had been failing for some time (undiagnosed) and we had to start planning our course of action. First they tried consistently to reach the Nephrologist that was caring for me for the past year to get my medical charts forwarded.
A few days go by and what happens..? Nothing! The Nephrologist has gone MIA and my file is no where to be found? Uhhh, yes, that is rare. Although I prefer to call it suspicious and odd. Can you say ‘law suit?’ Apparently we didn’t and it really didn’t cross our minds at all admist all of the chaos. In hindsight we were told constantly that we should’ve, could’ve, perhaps we would’ve under different circumstances. But we didn’t have the time to waste and frankly I was too damn ill and fighting for my life to even realize the implications of any of it.
Sooooo….we forge ahead and the plan becomes:
a) first and foremost…keep me alive (obvious yes)
b) get me healthy and stable
c) start me on dialysis when strong enough
d) get me on the transplant waiting list asap, but can’t be put on list until health is stable…so back to (a) and repeat.
Each week that passed I’d be hoping that would be my last.
Staying in the hospital 4 months is a long damn time. That’s like 16 weeks. Just imagine that in hours. In hospital time thats like a zillion hours. I’m not even kidding.
This was no club med. And you have to remember that’s back when there were no laptops, ipods, or internet. Nothing. I had books, crosswords and magazines for the times I was well enough to even open my eyes long enough to read. My parents paid top dollar to rent a barely there television with cable to help aid in me not going completely stir crazy whilst fighting for my life. God I love my parents to the moon and back for so, so, so many reasons, and having that wee little tv was at times a life saver. Well, let’s not get crazy with words here, no tv was gonna save my life.
So began the actual process of saving my life. They needed to start dialysis which involved a tube injected through my neck/chest. This was a temporary system to do the job that my kidneys were no longer doing until I became healthy and stable enough to choose my preferred dialysis method. This was basically a choice of tubes in my arm or in my abdomen. Neither sounded appealing to me but apparently neither wasn’t an option when the main goal is to survive.
This temporary IV in the neck method would always get infected and was extremely sensitive while I was hooked up to the dialysis machine causing the machine to beep. A nurse had to constantly come and adjust the tube or the way I was laying which in turn created more stress on me which made the damn machine continue to beep even more. I can’t tell you how much I dreaded getting wheeled down to the dialysis ward every two days and dealing with that whole process.
If dealing with that wasn’t quite enough I was also struggling with extreme uncontrollable hypertension and unexplained fevers. Dr’s were constantly experimenting with numerous meds to stabilize both with little to no luck. They would say how ‘rare’ it was that I wasn’t responding to any of the med cocktails they tried. So as they struggled to find the ‘rare girl‘ something that worked I continued to get excruciating migraines caused by it. The kind where you think your head might possibly explode. It was like health dominos, one thing lead to another.
I lost count of how many times they had to shoot me up with heavy doses of morphine or demoral. Went from excruciating head pain to amazing instant relief. Can you say awesomeness! I was immediately transported and floating way up high onto a big, soft, dreamy, fluffy, heavenly cloud. Sa-weeet-ness. Now I don’t want to promote drug use here, but let me just say, drugs were awwwe-some.
To add to my growing list of health mysteries and weirdness that seemed to surround me while I was trapped living in the hospital, I also experienced strange random undiagnosed viruses. Sure why not? Bring it on.
A couple of times my hospital room had to be quarantined off and only Dr’s of Rare Infectious Diseases were allowed in. They entered my room wearing heavy duty masks and protective suits which in itself is very, very odd to see. At times I was heavily drugged up from procedures and it was the strangest thing seeing them standing there talking to me all dressed in their gear. Felt like I was in a movie or maybe an episode of Breaking Bad. Don’t you think our lives are like movies and we’ve got starring roles in them? I guess we do, don’t we? Each of us are living our own reality television show. My brain somehow always includes some version of fantasy into reality. Complete in my mind with wicked soundtrack music.
I was onto them doctors and their terms for me… ‘Special one’= Rare = Virus = No explanation = Got nothin. Yes, my doctors started referring to me as ‘the special one’. I knew it was because I was a difficult medical mystery but to make myself feel better, I decided to take it as flattery. Like I am special. Ha. Hey, if it helps to get me through some of my most challenging days, then a girl’s gotta do what girl’s gotta do.
Of course any kind of flattery will get me every time. Even in my darkest days. It could be the reason I had some motivation during some of my best bad days to at least put some mascara on. You just never know when Dr. McDreamy might stroll into my room, our eyes meet, the world stops, birds sing and we fall madly, deeply in love. Run away and live happily ever after. The end.
Yes, yes I was married then, but this is my life story. I can write it the way I want.
Wouldn’t that be sweet? Change the outcome of your life depending on how you write your own story? Oh wait a second. We do write our own story with the choices we make everyday. Well then…
During my extended hospital stay I lost tons of weight, which would typically delight me any other time.
The Dr’s finally stopped trying to force me to eat that awesome hospital food and started giving me protein shakes. Don’t get excited, they tasted like complete shit for real. I vomited daily after drinking them. Eventually I couldn’t stomach one more shake. One day I sent a note along with the daily menu to the kitchen explaining that they should stop sending any shakes or heavy food to my room as I couldn’t bear it going to waste. I asked if it wouldn’t be a bother could they please send me a little bit of fruit and juice instead.
Every single day after that the kitchen would send me fruit and juices along with little notes of encouragement.
I became pen pals with the hospital kitchen staff replying daily with thank you’s and my appreciation..always signing off with my trademark smiley face.
Everyday I’d look forward to receiving their notes. It’s funny how the little things can mean so much in times of despair. I try to remember that now in everyday life. We seem to take for granted the littlest things, yet when taken away from us they are all we dream about.
I eventually became so weak from malnutrition, medication complications, and the fact I was basically dying a little bit everyday from the kidney disease.
I ended up receiving 8 blood transfusions at different times during my stay. The craziest experience ever. I went from literally feeling like I was on my death bed (well, I guess I kinda was) to having a transfusion and feeling myself come back to life. Does that sound weird because it sounds weird to say it?
My parents were with me and at one point they said it looked like they could literally see the colour reappearing in my face and a sparkle return in my eyes. Like how fricking amazing is that?
So remember people, blood… it’s in you to give. It saves lives.
The neck dialysis method probably gave me the most challenges and was the biggest pain in my neck.
Okay, that was lame. But seriously, it really sucked big time. Besides the dozens of problems and complications it created it was not very efficient. At one point I almost drowned. Part of the job of doing dialysis is to take off some of the fluid that gets accumulated. Well, you guessed it, something ‘rare’ happened and my lungs filled up with an overload of fluid and I was struggling to breath. And I’m putting it mildly. Let’s just say my family was called to the hospital immediately. I ended up in ICU for a few days for that little mishap but it all turned out okay. It seemed that my health would take one step forward and two or ten steps back. It seemed to go on and on and on. Always the struggle. Always the fight. I remember people saying to me ‘You’re so strong! How do you do it?’ I would say you just do. Period. Anyone put in a critical situation to fight for their life, fights. There’s no magic. It’s all within. Believe. And I’m not even religious, it’s just human spirit and will power. Funny thing was I don’t know if I was incredibly naive or infinitely positive or both but I never thought about losing this battle to live. Be here for my kids. Raise them and watch them grow. Share their lives. I stay positive. That doesn’t mean I never shed a tear or never get scared. I’ve cried buckets and I’ve been more scared then I could handle.
Having been in the hospital for that duration I witnessed plenty of pain, suffering and death. I realized people were experiencing much bigger challenges then I and people were dying from diseases. It puts you into reality mode real quick. Puts everything into perspective big time. I had hope for a future, a second chance at living. I held onto to that hope every single day. Anyone who has experienced a medical challenge knows what I’m saying, it changes your life forever. You get what’s important in life, and what’s not.
When I was finally discharged I had to go on dialysis. That is a whole other topic. But after a long 2 years everyone in my family was tested as a possible kidney donation match. The most amazing rare thing happened. My mother ended up being a match. What’s really rare is she was a good match. Typically parents don’t match well, so in this case I was thrilled to hear the word rare. My mother and I went in for our kidney transplant on September 25, 1995. So ultimately she gave life to me twice. I am here solely because of her in every way. There are no words to describe how that feels. How much love I have for her. Beyond anything verbal.
Having gone through this experience has forever changed me. I still have so many unanswered questions in life that I’m trying to answer. I still have plenty of health challenges even with a kidney transplant. But one thing is for certain, I am grateful for each and everyday I have been given. So let’s not sweat the small stuff for real, and truly appreciate the little things. Life is short, all the more reason to live the life you truly desire.
Oh and guess what? Rare is a good thing.
Til next time