Monday, November 2, 2015

After the Transplant - Part 2

The surgery began around 2:25 and lasted until 6:45.  They woke me up and told me the time was 7:15, so that was the point that I was in the recovery room.  After monitoring my vitals for some time, I was able to be taken back to my room.  There was little pain at that point since I was pretty numb, but my arms hurt from the various IVs I had in them. I had a total of 3 in me, and had had the initial one replaced before surgery.  That one had hurt the most.  My arm was pretty tore up for about two weeks after the surgery.  Other than that, I had 36 staples in my abdomen and a JP drain in my side for fluid in me to drain out.

The thing about a kidney transplant is that they don't actually remove either of my bad kidneys.  The new kidney is actually placed in my abdomen, and hooked up to an artery in my groin that comes from the leg (Or something like that) technically at this time I have three kidneys.  One that works great, and two that are craptastic.  Eventually they will shrivel up and do nothing.  The only thing that currently protects my new kidney is my stomach fat.  Which doesn't give me anxiety at all about being hit in the stomach.  Although the only restrictions after 6 weeks is that I can't play soccer, football, or pro-sports.  Which will be no problem at all for this girl.

Thursday night was uneventful, Keith stayed the night at the hospital and around 8:30 or so, my parents headed home.  I began my first immunosuppresent medication that night (not counting the large dose of steroids that I was given on the way to surgery to prepare my body for the foreign organ being placed in it.  I received 500 mg of prednisone presurgery, 250 mg on Friday, and 125 mg on Saturday before I went home.  I'm currently on the 5 mg pill that I was on before surgery, and can hopefully be weaned off of them totally in the next few weeks to months. Yay!)

Actually the rest of my stay was pretty uneventful, except for the constant nausea we realized was from the pain med I was on.  So they switched it to a pill - which lessened the nausea some, but I still couldn't eat until I changed to plain tylenol on Sunday after the surgery.  Pro - no more nausea. Con - doesn't completely help with pain.  I also had high blood sugar from the steroids, so I had to get a shot of insulin on Friday night.  Thankfully that issue seems to have resolved itself, however, I do need to watch my sugars for awhile.  Sadly I have other food restictions - no delis or buffets where food sits out in the open and are more susceptible to germs.  I also have to avoid large crowds and germy people (aka the kids' school) for a few weeks as my body adjusts to the immunosuppresents.  I'm currently on 8 medications, for a total of 12 pills and one liquid antibiotic in the morning, and 8 pills in the evening.  Some will only last for a few months to a year, and others I will be on forever.  The liquid is in place of a pill (bacctrum) which I am allergic to.  It tastes awful and costs hundreds of dollars pre-insurance, but thankfully I only have to take it for 12 months.  

On Wednesday I will finally have my staples and JP drain removed.  I still go for labs three times a week, but after next week, I get to switch to twice a week.  My hemoglobin is really low, so I tire easily, and I had nerve damage from the surgery in my right thigh, so it's numb. That would be fine, but as the nerves are starting to wake up, I am pretty much in constant nerve pain.  

I don't leave the house except for labs and doctors' appointments, but last Friday on our 11th wedding anniversary, Keith was able to get off work a little early and we snuck away to the movies.  You have no idea how great that felt to get out of the house for a non-medical reason!  Walking is getting easier and I can walk without assistance, even with the numb leg.  

I feel very blessed to have been given this kidney, and I pray for the family of the donor.

Saturday, October 24, 2015

After the Transplant: Post 1

Was it just last week that I posted I was on alert for a kidney? Seems like months ago at this point.  The night after I was put on alert, I still wondered if I would get a call.  I received another call in the afternoon stating that I was still in the running.  There was one person ahead of me, and he/she was a multi-organ recepient, and that took presedence over me.  The other two times I had received the alert call, I felt sick to my stomach. I prayed that it wasn't the time.  I wasn't too concerned about being called back.  This time, I was strangely calm.  I didn't go crazy trying to clean the house or get things done, rather I played Uno with the kids. We all laid in my bed at bedtime, reciting prayers and just being together.  Keith and I watched some DVR.  At 9:30 p.m. on Wednesday, October 14, the phone rang.  It was the nurse coordinator, stating that the kidney was mine, and that I needed to be into Chicago by midnight.  I was already packed, so I took a quick shower while we waited for my mother in law to come and be with the kids.  The hardest part was saying a silent goodbye to my children.  They knew that I could leave in the night.

Keith, my mom and I drove into the city.  There wasn't much traffic, so it didn't take the usual hour and a half as it does during the day.  We checked into the ER, and waited to be taken upstairs to 11 East, the transplant floor.  My room was soon ready and we got in. They did the usual vitals check, then stuck me with an IV. Not well I might add - it was placed in my elbow area and was painful, (So much so they had to re do it the next day.) My left arm is still torn up from three different IVs as I have small veins.  My mom and Keith fell asleep, but my arm pain and the nervousness kept me up most of the night.  I couldn't eat or drink, which really sucked, especially when I found out that surgery would not be until 2 pm the next day.

My dad drove in the next morning after getting my niece and nephew off to school (my sister just started her new job  and needed to be in early that day.  We basically just hung out while we waited for them to come take me.

Around 1:30/2 pm, they wheeled me to the pre-op room. The nurse was nice enough to let my parents and Keith come in with us (usually it's just 2 people allowed in).  After another 30 minutes or so, after speaking with the anesthesiologist and a doctor or two, it was time.  My family said our "see you laters" (family superstition) and I went into the operating room.  It was super bright with probably 15 people in there at the time.  There was someone sitting at a table, with his back to me, working on something. I wondered if it was the kidney? I didn't ask though.

To be continued...

Wednesday, October 14, 2015

Waiting for a call...

About this time last year, I wrote this post: Enjoy the little things....  I quote one of my favorite songs - Simple Man by Lynyrd Skynyrd.  I talk about the time I drove home from my grandpa's funeral, all alone, and this song came on the radio. 

But from time to time, this song will magically appear on the radio when I need it most. Like today while I was driving. I debated bringing this up as I don't want to hear people say - "I hope it works out for you" or "I'm sorry" when/if it doesn't. I will begin this by saying, there is no right thing to say to me when I share this news.  Perhaps just a like on my FB post will be enough to know someone read it.

But here's the thing.... I am #2 in line for a cadaver kidney today. I found out last night. This is the third call I've received since the end of August putting me on alert. (Because it doesn't really happen like it does on t.v.). First they call and say, hey we have a kidney, but you aren't first in line. So I wait and wait and wait (wondering what I can get marked off the to do list in record time yet still trying to spend time with the kids - does a family laundry folding session count? Because they need clean socks!) Then they call back to say, sorry it went to someone else. And I breathe a sigh of relief that I have more time.

I debated sharing because I don't want to hear, oh I'm so sorry, or it will happen, etc. Not because I don't want support, but because I am truly ok with it going to someone else. Because that someone is in a greater need than me. However, people can't seem to understand that and tend to make me feel guilty for not wanting it more for myself than I do for the person who actually received the kidney.

I sit here, waiting for a call that will only come if the person who is #1 on the list gets prepped for the surgery and right before placing multiple organs into him/her, the surgeon discovers that one of them is not suitable for transplant. They will cancel that surgery, that person will wake up only to discover he/she did not get the organs. And a kidney will be flown to Chicago for me.

Everyone is so excited for this cadaver kidney to come to me - but what about the family of the one who lost his/her life? Or the person ahead of me on this list, who is probably in greater need of this than me. There are many reasons why I wanted to go the living donor route - and those are two big ones for me. 

My surgery will only happen when the time is right. That may not be today, and I am ok with that.

Tuesday, October 6, 2015


So here's the thing - I have a really sucky disease.  Well, sort of. I mean, it's not that bad in the grand scheme of things. (Despite what my mom thinks.)  I know a person who had his jaw sawed through to get out a tumor. A co-worker is getting chemo for cancer that spread like wildfire in her body in less than two months. A little girl I follow on FB just had a liver transplant, and they think the new liver is failing. Don't even get me started on all the gun violence in the world... especially Chicago and my hometown. Life could be worse.

Strangely enough, I seem to be the only person in my family with such a positive outlook. I say that loudly and proudly on my blog - 1, because most of my family doesn't read this, and 2, because I say it to their faces as well.  But do you know what sucks about being positive, even with a life-threatening disease? People think you're cray cray. It's true. They don't know what to do with me. Apparently I am not your typical kidney failure person.  I'm always out and about, I work full-time, and I am not on dialysis. Well not yet anyway.  T-minus one day until I go for the blood work that determines if I will have a port-thingy installed in my stomach for peritoneal dialysis (I really need to learn the correct medical terminology ;) )  Anyway, it appears from here on out, I will have blood work done every 2 weeks to check my kidney function. My GFR (you don't have to know what that means) is at 12.  One point lower means the port goes in. 12 or above - yay! no port!

Sure I have my off days, as anyone does, but I see no reason to let this disease define me. Do I want to have dialysis? No.
Can I do anything about it? Apparently not.
So it is what it is.
And I go on.
With a smile on my face.

Because hey check out these three awesome beings that I made. 

They are reason enough to stay positive.

Monday, October 5, 2015

The Beginning...

So I've got this friend. And she wrote a book. I'm only half-way through it, but it's amazing. I'm super jealous and all, because she actually did what she said she would do, while I just sit here and say, "I should write more."

So I'd like to say to her, "Thank you for the inspiration!"

The early morning sun was cresting above the ocean, setting off a wave of pale colors throughout the sky to the east. Kate stood on her porch, the steam from her coffee mug wafting gently through the air as she breathed in the strong aroma. It was like being in one of those coffee commercials, she laughed quietly to herself. This was her favorite part of living right on the water – the silence and solitude that came every morning. It wouldn’t last long. Despite the coolness of October, the beach was close enough to town that a steady stream of people would visit during the day – joggers choosing to run along the water instead of a sidewalk, stay-at-home moms breaking from park routines to watch their children play in the sand, and those careless souls who loved to walk along and watch the fishing boats in the distance.

The last throngs of tourists had finished their vacations and headed back home after Labor Day weekend, leaving her sleepy little lake town quiet again. It wouldn’t pick up again until the Harvest Festival in two weeks.  She wouldn’t need to hurry to her shop by 6 a.m. every day for the morning rush. She was thankful when Christine had offered to take the early shift for the month. Kate was in need of a break as she prepared for the upcoming busy season – the Harvest Festival was a big draw and had grown larger and larger with each passing year. What was once a simple town parade and sidewalk fair had turned into a celebration of grand proportions.  The beach was just one of the draws to the town – nearby farms blossomed with pumpkins and hay bales that would soon line Main Street in anticipation of the festival. The leaves on the trees would shine with their bright colors of gold, orange and crimson. The crispness of fall perfumes the air and the blustery wind sweeps through, rustling the soon-to-be barren branches. The storefronts would be ablaze of autumn décor – colorful lights, spooky skulls and bright orange jack-o-lanterns would fill the windows, each one carefully set up to entice those passing by to come in for a spell.

Thursday, October 1, 2015

Hello October!

It's here! My favorite time of year! For fun, I'm going to list just a few of my favorite October things. :)

Spooky stories:

When I was in grade school, I found this book (yes I tended to read things that I probably shouldn't have at certain ages). It was the best, spookiest book I'd ever seen at that time. Every year, when the leaves began to change colors and fall from the trees, I would check this book out from the library.  I'd sit in our darkened living room in the evenings after supper and treat myself to one scary story after another. Once I went to college, I lost the tradition. It wasn't until a few years ago that I found the book on Amazon. It was even scarier than I remembered - especially the story called "Eyes" by Charles L. Grant. In fact, as a mother (it's about the death of a child and the guilt the father endures) I can't read the story anymore. But all the other ones are super good!

Devilish Decor:

Here is a link to how I usually decorate. I do wait until October officially starts to get out my Halloween decor, so this weekend it's on!

I am going to be brave and get out a few things I haven't had out since the kids were born. Every year, I try to take out one new thing (the skeleton bride/groom was a big scary thing for a couple of years!). This time, I am going to put out some of my Living Dead Dolls. I collected these long before the kids came into the picture. They aren't actually little kid appropriate, and they live in coffins... I did promise not to bring out the super scary ones though.  A few that will grace the mantel include:

Just kidding - I won't put the bloody bride and groom out!
(Unless Keira gives her approval!)


Seriously I can't help it. I love it all.

Do you celebrate Halloween? Do you decorate for it?

Tuesday, September 29, 2015

Book Review: One More Haunted Evening

It's a dreary fall day - just the kind of day that makes you want to curl up with a cozy blanket and a warm drink... and this book! One More Haunted Evening is a fantastically spooky story just right for the season. This book was written by three authors (Jane Charles, Jerrica Knight-Catania, and Ava Stone) - which some people may find odd, however, all three authors pulled it off again with great results!

This is a follow-up book to One Haunted Evening, although you don't need to have read the first one to pick this one up.

Lord Quentin Post and his two rakish friends are back at Marisdùn Castle for a Samhain masquerade. In fact, Quentin hopes that by having a masquerade just like last year's, his mysterious angel will reappear. The other two gentlemen, Thorn and Garrick, are also on the search for something, one for his missing artist, and the other for, well you will see when you read the book. ;) 

Quentin's three sisters - triplets, Hope, Patience, and Grace, are also along for adventure. They were certainly entertaining to read about as well!  It's hard to say too much without giving things away, which I hate to do. But I highly recommend this book (and the first one as well!) especially this close to Halloween. I gave this book 5 stars on Goodreads.