"...wE mUst bE thE chAnGe wE wiSh tO sEE iN thE wOrld..." K.G.



I am finally in a place emotionally and physically where I feel well enough to post, and for those who worried and prayed for me, I thank you with all of my heart, because I know that’s what got me through. I could feel it. I really don’t think there is anything more powerful than prayer, to bestow on someone you care about when they are in need is an act itself of pure love.
I am still somewhat in shock at what I just lived through. I am still processing things as they happened so quickly, it almost feels like I was just a bystander watching someone else in my place.
I went to work on Friday, 4/27. I’d been having chest pain since I woke up that morning, and took some nitro but it didn’t resolve it. By the time I got to work, it was so painful I asked my boss to take me to the ER. I was having a heart attack.
After many tests and another heart cath, I was told I needed a triple bypass with an aortic valve replacement. However, I was very anemic and had to receive blood prior. I also had a bone marrow biopsy to determine any blood disorders that could be causing the anemia, for the safety purpose of the surgery, but it came back normal. They said they were ruling out leukemia’s, cancers, various blood factors, etc… and that scared the crap out of me. I had never thought about having anything like that, wrong with me.

The night before surgery, I developed cellulitis in my feet, which delayed surgery for 4 days. Once the cellulitis cleared up with mega doses of antibiotics, in I went. I was told I was on the table for 14 hours as the first aortic valve was too big, so the doc had to redo the surgery with the correct size, so it was really like 2 back to back surgeries. They put a mechanical valve in, for my situation.
I awoke in the ICU unit, still intubated. Apparently, right after surgery I had a massive bleed in my chest. My blood pressure crashed so they couldn’t sedate me. My kidneys shut down and I was on continuous dialysis for 3 days, whilst still being intubated, wide awake, alert and oriented and all that shit. I remember everything. E.V.E.R.Y.T.H.I.N.G. Every agonizing moment of being on the vent, with my hands tied down so I wouldn’t pull out my tube, helpless, unable to convey anything to anyone. I had an intrajugular line in my right neck for dialysis, and an arterial line in the left for everything else. Apparently I received 23 units of blood and platelets as I bled out just as quickly as it was infused. I heard people say a few times it was 50/50. My family was taking turns a few minutes at a time, at my bedside. My youngest son, Christophe, couldn’t bring himself to see me in such critical condition. Honestly, being intubated while awake was the worst thing I have ever experienced in my whole life.

Eventually, I was weaned off the vent and needed to relearn how to swallow without choking. When I choked, I coughed. When I coughed, it felt like my chest was being ripped open.
The dialysis went from continuous to scheduled intervals. I wasn’t producing any urine on my own, and hardly any on dialysis. I was told I may have permanent kidney damage, only time would tell.
When stable, I went to the cardiac floor. To be honest with you, the chest incision was a little painful, but the majority of my pain was the freaking fibromyalgia. 14 hours on an OR table, then spending a lot of time in bed, left me in such pain, I couldn’t get past it. No amount of meds or ice paks or heat could ease my pain.

I went into A-Fib. That’s where the top of the heart quivers rather than beats in normal sinus rhythm, and can cause problems. I was lucky and it didn’t. It took about 2 days to snap out of that. I was still having great difficulty breathing, even without exertion. After some tests, they determined I had a build up of fluid in my left lung, and ended up draining 1300 mls of fluid from it. It was uncomfortable but not too painful.

I have always had an on going little list in the back of my mind with scary, unimaginable medical procedures I swore I would never allow to be done to me, like a frightened child frozen in the fear of the unknown. Well, my list is gone now. I have just lived through all the things that frightened me the most, and it wasn’t as painful, or bad as I imagined it to be. The bottom line for me is when I am ill like I was, I was willing to do whatever it took to get through each problem I encountered, and I did it without fear. Or maybe I should say I did it due to fear that if I didn’t, I wouldn’t recover. The only way I can explain it is that it was some kind of spiritual force, greater than me, pulling me through.

My kids will never let me live it down that they chose my nursing home. They think it’s funny, I on the other hand, chuckle along with them but inside it scares me that I could end up spending the rest of my years in one. It is no place for me to be even if I have to be here right now to recover. As a nurse, I see so many inappropriate things that are done either half-assed, or totally wrong altogether. I have been left in my wheel chair with the wheels unlocked several times, no call light within my reach, half assed vital signs where the LPN’s ‘pretend’ to be listening to my heart when I know damn well their touch is so light and misplaced, there is no way they could be. Blood sugars where the alcohol pad wipes one finger then they poke another. I’m supposed to be on a cardiac diet which is a farce because they still place butter, salt, and other things I no longer eat, on my tray. However, it is letting me begin the change in my eating habits, as when I see a pat of butter on my tray, all I can do is picture it clogging my arteries, it gags me, and makes it easier to make good choices. These things may sound trivial to some, but I am not in a dive facility and my expectations were just a bit higher than the actual reality.

I work very hard here in rehab to strengthen my deconditioned body so I can get back to my life… and I don’t know how long it will take. When I left the hospital, I still had some fluid in my right lung, however not enough to tap it. Consequently I am always short of breath, even without exertion. The doc said it would absorb in my body, but I’m still waiting. She also said it is due to chronic anemia, and iron deficiency. I have to go to the infusion center for blood and iron infusions on Monday.
I saw the kidney doc today, rode to the med center in one of those medi-vans like I have seen so many times when I was out and about. Only this time it was me inside. There’s something weird about that.

There were moments in the ICU unit when I didn’t think I could take another breath, and it scared the shit out of me. There was no call light within my reach, and I remember having to rattle the side rails to get some one to come see what I wanted. Jo said I started spelling words in her palm to try to convey my needs.

I still haven’t regained my appetite since the surgery. I can only eat about ½ cup of food or drink at a time. Nothing tastes good to me, not even my fave foods the kids bring me when I ask. And speaking of food, here in rehab, it should be illegal to call what they serve, “food.” In the morning, the toast they serve is dripping with some kind of greasy spread representing butter… it gags me. The only thing I can tolerate is the oatmeal. They do have egg beaters scrambled eggs and with lots of pepper, I can eat that. But the rest of the meals leave much to be desired.
OT and PT are coming along slowly, but I can’t believe how weak I have become. It sure doesn’t take long for muscles to atrophy.


There are all kinds of people in here, long term residents, short term, disabled, some with mental deficits. Each with their own stories. I look around in the dining room and think about how each person was a newborn baby once, and how much joy they must have brought to their parents. Who knows the stories they could tell and the wisdom they could share. I have always enjoyed hearing people’s life stories. Just when I think I have had it rough, I hear about something some one lives through that humbles me, reminding me to count my blessings and that no matter what I am facing, there are always people worse off, or facing things I know I could not handle.

Today, some of the residents went on a day trip to the zoo. You would of thought they won a million dollars, it pleased them so. Will I be like that one day? Treasuring the crumbs of a life left over that I once lived? I don’t want to end up in a place like this. I don’t want my kids to feel obligated to visit me for 5 minutes and think they have done their duty. It’s lonely here, I cry a lot, I think too much, and I just want to go home to my little apt. that awaits me. I am making some major life changes and it’s hard but I have no choice, if I wanna live. I am the one who did the damage to my body, I am the only one who can fix it.

One majorly good thing that has happened throughout this whole medical crisis, is that it has helped me put many things into perspective, mostly with Diane. I realize how much energy, time, and heart break I have allowed myself to go through, over her… over who I wanted her to be. It was more the illusion of love and romance that I was in love with, and I am now able to look at her picture and wonder what I ever saw in her. I feel NOTHING towards her, no pain, no longing, no missing, no loss. I feel NOTHING one way or the other. That’s what I have wanted to feel all along, ever since the break up. And I am finally there. It feels so freeing, so clean and I’m ready for my new life. Being with another person is the very last thing on my mind, I am going to spend my time building myself up, getting stronger, doing well in my job, and making the most of each day. It’s MY life to live, and no one is going to dictate how I should do it.
With that said, it’s bedtime for this chickie. I’m gonna get in bed and watch Family Guy until I fall asleep.

Please take care and be patient with me, I am coming back slowly but surely.

And don’t call me Shirley.



otin said...

I have no doubt that you'll come back 110%. That's what fighters do!!

DysFUNctional Mom said...

I am so sorry that you have had to go through such a miserable time!
But so glad that you're on the road to recovery. If anyone can fight & recover from this, YOU can!!!! xoxo

greg said...

It was hard to read what you went through and I can't imagine how scary it was to actually live through that.

I absolutely love this determination you have to turn your life into the life you want. You have so many good times ahead of you. Look forward.

Thank you for sharing your story with us, you have been on my mind. xoxo

Busy Bee Suz said...

Oh Shirley! I am so happy to hear from you.
I was so worried......
YOU have been through hell. I'm sure you aren't even sharing it all with us, but that is ok.
I am really glad that you are on the mend and with the right freakin' attitude too. YOU are strong and you will heal. I just know it.
Now, I am secretly going to put a curse on all the half assed nurses. If you see one coming towards you with a huge cold sore, tell her to go away because you can see her curse. !

ChiTown Girl said...

Sweet pea!!!! It's about God damn time you posted something. You act like you've been busy or something. Shit!!

Ok, seriously, you have NO idea how happy I was to see that you posted something. I've been keeping up on your recovery through Jo, but I'm so happy to see you're feeling well enough to type a bit.

I'm sorry you've had to put up with incompetent staff members. I wish you lived here in Chicago, cuz I'm gonna have ALL kinds of free time, and could be coming over and taking care of you. I'll be sending you good vibes and happy thoughts, though.

Heal quickly, my friend!!! I miss your snark!


kristi said...

Praying for you. I am looking for a new job right now, two layoffs in less than 3 years= not fun!

jo.irish.rose said...

thats my sissy....shes a fighter....and she wont quit. she may fall, she may bang her face up, but she wont quit. lol

Technodoll said...

Your post has moved me deeply, Chris... When you say you have faced and overcome all your fears, I don't know if I would ever have the strength or the courage to live through half of what you've been through lately. holy shitballs.

I'm posting this blog entry on my FB wall because I want to share you with the world - I am so damn proud to call you my friend. Wow.

Keep your spirit alive and kicking, mon amie. It is who you are.