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)...so 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

Positivity



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.)  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!)


Pumpkin-everything!

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.

Friday, September 25, 2015

A Honest Post



I am a saver. A part-time hoarder, if you will. I have a hard time letting go of things that once meant a lot to me. Which means we have a lot of stuff. Baby stuff, kid stuff, things from my own past that remind me of different times. I'm always saving things for a rainy day. Gift cards, candles, bottles of wine, you get the idea. I don't want to use/open them just now, just in case. I want to save them for a special occasion or to cheer me up on a day that I could be feeling down.

But now, more than ever, I am reminded that life is short. There have been rainy days but I didn't burn the candle. There have been days I felt down, but I didn't stop at Starbucks to use the giftcard. And I wonder, whatever am I waiting for?

The future is there in front of me, but life is so uncertain. I watch with sadness as a co-worker struggles with her chemo treatments. My heart breaks as a fellow twin mom prepares to bury her 10 year old son. I see my own face in the mirror, swollen from months of steroid use, and lament the fact I didn't do our family pictures sooner.  

People say they are praying for me - I wish they'd pray that I was miraculously healed. Because seriously, I don't want to do this anymore. This air of calm resolve you see on the outside is just a mask, hiding the chaos that circles in my soul. My to-do list rambles on with things I really should get to before I have life-changing surgery. But sheer exhaustion from kidney failure prohibits more items being checked done. What should I put off and what should I move to the top?

That candle I received years ago looms in my mind - why did I never burn it? The gift card sits in my wallet - why didn't I stop off and get a latte? Running, always running, from one thing to the next, with never a moment to slow down. Life speeds past as life is ought to do. And I find myself in a flurry of motion, hard-pressed for time because it's running out.

Friday, August 21, 2015

Routine Charts

The kids really like their before school charts. I've vamped them up a bit - they love their electronics but do not get them during the school week (other than the occasional TV show in the morning).  I also wanted something for after school, just as a reminder of what needs to be done.  It's very exhausting to me to come home after a full day of work, see the kitchen and living room in total disarray. We go right to supper, finishing up homework, baseball or gymnastic practice, 20 minutes of reading (per school request), and then shower/bedtime.  The kids leave their backpacks where they fall, shoes near the door, clothes all over (seriously why can't they change in their rooms???), etc. They rarely hang up their uniform pants, although many times I will find their dirty uniform shirts hanging up? How weird is that?

I created this chart for what they should be doing after school.  I may end up tweaking it after a couple of weeks.  The 7:30 p.m. bedtime really isn't that firm, but it's generally when we start getting them ready for bed.  

What would you add to an after school chart?

 

Tuesday, August 18, 2015

Back to School - Creating a Homework Station

School starts tomorrow. I am trying to get things organized in between working full-time. Ha!

We had already been using a shoe organizer in our closet off the kitchen for miscellaneous items, such as hats and gloves in the winter, and sunglasses and baseball hats in the summer.  By moving those things to a different spot, I had plenty of space for our homework supplies. The kids love the ease of being able to find what they want without having to dig through the closet or a drawer!

Full view
Close-up #1: The first three bags are the kids' markers for art.
The bottom two bags hold pencils, erasers, crayons and a glue stick for each twin
Close-up #2 Misc markers, rulers,
and art supplies for when homework is done
and they just want to create something!
Art supplies, extra markers (Keith got a great deal at Meijer!)
Stamps, envelopes, return address labels,
Connor's box with his school pencils and crayons.




* I had previously posted this on my other blog, but wanted to move it over here.  

Wednesday, August 12, 2015

Book Review: My Enchanting Hoyden


Julie Johnstone's newest novel, My Enchanting Hoyden, was just released last week. As usual, this is another one of her books that is just a delight to read! 

Jemma is a woman who has been duped by her first love. Intent on not wanting to ever make that mistake again, her goal is to earn enough money to be independent and have her own bakery, just like her mother. That's not easy when her grandfather has different plans. Lord Hawthorne, otherwise known as Philip, has a debt to fulfill and marriage to a wealthy woman is his only way out. But he feels he is too much of a gentleman to win a lady's heart, and is intent on changing his reputation to gain a wealthy wife.

As the two of them work together, Jemma to foil her grandfather's plan, and Philip to turn himself into a rogue to be wanted by the ladies of the ton, the reader roots for the two of them to acknowledge their feelings for each other!

This is a really great story. The characters are very likeable from the beginning.  Ms. Johnstone's characters are always so full of life that you can imagine having tea and getting along famously with them.  While this is book 3 in her Once Upon a Rogue series, it can be read as a standalone. Or as the first book of many you pick up to read by this author. ;)

Want to check out the book? Buy it here:



Thursday, August 6, 2015

The Summer of Firsts...

I debated bringing this up, but decided it's my blog, I'll write if I want to. ;)

I had a kidney donor. She was approved as a tissue match and was set to come into the hospital for the final round of testing. Let's just say it didn't work out. I don't know the details, but she backed out. She has her reasons, which I am sure are valid, but she did not share them with me. I just hope and pray that they are not serious health reasons or something of that nature.

To say I was shocked is an understatement. A few dear co-workers offered to go beat her up, jokingly of course. Keith said it happened because it gives me more time with the kids this summer. I don't see it that way. Since my levels are up enough to push off surgery for a couple of months, I would have had that extra summer time anyway. A friend told me once that she doesn't believe things happen for a reason, that they just happen. 

I however, think things do happen for a reason. Not good reasons, perhaps. We had a second donor come forward, but due to an eye injury/surgery, she couldn't start testing. Donor #3 was disqualified by the hospital due to high blood pressure (from one doctor visit!), although she asked to have a 24 hours test to prove that reading was based on stress, not her overall health.  Still waiting to hear the results and if she will be approved to move forward. Either way, the chances of needing dialysis are looming.  Testing of a donor can take up to three months, which is plenty of time for levels to drop. 

I still wonder why this happened to me. Why the donor backed out. Why I was so close only to have it taken away. It's hard knowing there is an actual match out there that could save my life but I don't have access to it. 

Despite all that, I keep on going. There isn't anything else to do. I'm enjoying summer, enjoying the kids. Perhaps that is the reason this is all happening. As a mom, you tend to get so wrapped up in things that there is little chance to enjoy what is going on around you.  Summer gives us the time to step back, without the hustle and bustle of the school year. I can't say that I am looking forward to the kids going back to school in two weeks.  Homework will be a bigger constant in our lives. There are after-school activities to take them to.  And I still work full-time and have my house duties to take care of. The laundry doesn't wash itself. (Although I wish it would put itself away...)  I do all the things I did before, but with a nagging sense of exhaustion that haunts me night and day... one that can't be controlled with caffeine or extra sleep. 

And while this was the first summer of my new normal, there were also more fun "firsts" that happened as well:

First time riding bikes without training wheels (and not falling off!):
 


First Cubs game!!!


First time miniature-golfing! 
(Not the best picture, but it was black-light mini-golf!)


 First time meeting a far-away friend....
(And getting to see other special friends as well!)




First time meeting Batman...
(Who, I'm not going to lie, was pretty cute in person...)



There were other first as well that are not pictured here, since a more personal goal of mine was not to have my phone with me at all times.  Because not all moments need to be documented with technology. Rather they live in our hearts and minds...

I'm looking forward to more "firsts" as the year goes on.  That's the thing, after your children are out of the infant/toddler stage, we tend to forget that there are many other firsts that are to come. My goal for the rest of the year is to find more "firsts" and enjoy them all.

Wednesday, July 29, 2015

Book Review: Between the Lines






Jane Charles' new book, Between the Lines, was just released. The book centers around Gabe and Ellen,  and the Baxter School of the Arts.  It's told from both Gabe and Ellen's first person perspectives, which is great because the reader is able to see both sides of the story as it develops. 

Gabe is a teacher at the Baxter School of the Arts. Ellen is a reporter who feels that there is a story that needs to be told about Baxter. Both of them are dead set with keeping their secrets to themselves, but as their relationship grows, it becomes harder for them to not trust each other.

I really liked this book, even though it's not what I normally read. Ellen is trying to keep her past a secret, but as she falls for Gabe, she begins to trust him and share her secrets. Gabe continues to protect the school and it's secrets, but not because they are bad. It's his job to protect the students he cares about. As Ellen gets closer to the truth, she begins to understand the Baxter story. I really enjoyed the scene where she met with some of the students and heard their perspectives and stories. Without going into detail to ruin the story, the stories are what truly convinces Ellen that there is nothing shady going on at Baxter.

The ending wraps up the story nicely. I hope there are more books in this series as I'd enjoy reading about some of the other characters. 

**I received an advanced copy of this book in exchange for an honest review.**

Monday, July 20, 2015

Book Review: The Art of Sinning


Mark your calendar - tomorrow is the release of the newest Sabrina Jeffries' book! The Art of Sinning is the delightful first novel in her new series, called the Sinful Suitors. This book does not disappoint!  

Jeremy Keane, an artist not wanting to be tied down to his father's business back in America, meets Lady Yvette Barlow, a woman who has taken it upon herself to solve a family mystery.  Jeremy wants to use Yvette as his muse, but she won't agree unless he helps her. Yvette's brother won't agree to the arrangement, so the two of them concoct a plan to work together - she will be his muse, and he will help her find the woman she is looking for.

As a reader, I am never bored with a Sabrina Jeffries' story. The two main characters are great together - lots of chemistry in both conversation and in the bedroom. They are very witty, which makes them more likeable characters, in my own opinion. The secondary characters are great too, and you want to read more about them as well. 

Check out her book tomorrow - available in paper and e-reader! 

Friday, July 10, 2015

Book Review: A Body to Spare


I was lucky enough to receive an ARC of Sue Ann Jaffarian's new book, A Body to Spare.

I have to say, this was my favorite Odelia Grey book yet! The twists and turns were great! The story begins with a body found in Odelia's trunk at the car wash.  Again, Odelia's luck as the corpse magnet has not run out.  As the mystery begins to unfold, Odelia gets help from old and new friends. Out of the blue, she receives a surprise phone call, and that was one of my favorite parts! I can't say anymore about it because it would spoil the surprise for you, but I was so excited when the caller announced their name.  

As usual, there was a lot of action, with poor Odelia trying to clear her name, deal with a friend moving away, and bodies piling up. Ms. Jaffarian does a fantastic job, keeping the story funny and action-packed at the same time. You don't want to put this one down.

The book will be released in November, so I highly recommend you put it on your to be read list!
 
***I received a copy of this book from Netgalley in exchange for an honest review.

Friday, July 3, 2015

Summer Fun, Part 2

I was able to take a few days off work - one of those days being the twins' 7th birthday!  
So far, we are making great progress on our summer bucket list!

On the twins' birthday, after we opened presents and went to swim lessons, 
we headed out to the lake with my parents, my uncle, my sister, and her two kids 
for some fishing, picnicking, and s'mores!



Here is Keira, sitting nicely and fishing.


Here is Keira, 10 minutes later, after she fell off the dock and almost drowned.
Seriously, we have no idea how she fell in. 
I heard her scream, and then saw her falling into the water.  
She went under because it was too deep to stand, 
but my dad was right there and jumped in after her. (The water came to his chest.)  
There is never a dull moment around these parts.





Later that day, we went to dinner at IHOP (the twins' choice) 
and back to our house for cake (which they didn't eat) 
and ice cream (which they did) and presents. 
They wanted to stay up late to catch fireflies,
 but I had had enough excitement for one day. ;)




The weekend was busy too - Connor had a double-header, 
and we visited the splash pad and had ice cream.



On Wednesday night, we packed up the van with blankets and popcorn and headed to the drive-in movie theater. It was the first time for the kids... we saw Inside Out.  We all had a great time!