New Year, New Outlook

Happy New Year!  And what a 2010 it was!  Thank you for being there for me through such a difficult yet victorious year. 

It's been a little over six months since the surgery and within that time there have been no new developments as far as the kidney goes, which is great.  No news is good news now.  I'm feeling great, I have my energy back, life has returned to normal... well as normal as I could hope for.  I continue to take several medications and vitamins twice daily, but considering the alternative, bring it on.

Rob is doing very well.  After a little while after the surgery, he returned to normal as well.  He no longer feels any discomfort, the only things that are different are the scars that remind him of the surgery. 

Brooke understands that I still have what she calls an "owie".  And mommy's doctors are constantly taking care of my owie.  And they are, my doctor visits are becoming less frequent ( again a good sign), but I am still getting blood tests done and my doctors are monitoring me closely until the first year.  The first year is the highest risk for rejection. 

Next month, I'll be giong back to the hospital for a routine biopsy of the kidney.  This will give doctors a detailed picture of how the kidney is doing.  Blood tests can only tell so much and once any damage in the kidney is picked up in the blood tests, it would already be too late.  So next month, I'll be going in for a quick procedure, but I'll need to stay in the hospital for half a day.  They say I'll be sore for a couple of days, but then back to business once again.

I've not only been through some physical changes for obvious reasons, emotionally it was a journey as well.  Of course, I've shared with you the emotions I went through, the ups and downs before and during the surgery.  But I never bargained for having to go through more emotions after the surgery.

In the last six months, I've started to lose some relationships in my life, not only friends, but family as well.  All of a sudden those relationships changed drastically.  I couldn't understand why some people were mad at me.  But through conversations with mutual friends and family members, I found out they were upset  because when I initially asked for help in the form of an email.  They thought it was impersonal and downright rude. 

I didn't know how to react of course, but to be utterly shocked.  At first, I understood and remembered that I knew I might offend some people with the email, despite my true intention.  I thought the offense would be coming from the question, but not from the form the question was posed.  But I simply respected their opinion and let it go.  But that changed when I heard some were not only misjudging me, but misjudging Rob.  It's one thing to judge me and bad-mouth me, but it's another when they do that to someone I love and care about.  Mama Bear's claws come out and they don't retract!

So of course my natural instinct was to defend myself and him, but how do I do that when they didn't even call me to ask me or to talk about it in the first place nor will they now since they've cut me out of their lives.  I figured the only thing that'll make me feel better is to get it out on my blog and be done with it, but also realizing that maybe some of you at one point felt the same way they did, so I'm simply clarifying a couple of things... just in case.  I know now I can't make every one happy, but myself.

I'm pretty sure I've already covered it in my initial email, but asking for help first of all was not something I did easily.  I was reluctant and will continue to be if I have to revisit that ordeal in the next several decades.  And to be honest, yes I was selfish at the time, my only motivation for the email was to save my own life.  I didn't have the time to sit there and think how do I offend/insult a mass amount of people at once.  And trust me, time was of the essence.  I didn't have that luxury to come up with an evil plan of some sort.

Also, I was not and still am not strong enough emotionally to handle rejection after rejection.  Out of the 500 people I emailed, I couldn't imagine getting 500 "no's".  And the ultimate reason for asking for help via email was I didn't want to back anyone in a corner, I wanted to give every one a way out.  Imagine if I said, "Hey let's go to dinner!"  Then in the middle of our meal, I ask you for a kidney. 
As I had stated in the past, donating an organ had to be voluntary, the last thing I wanted to do was force someone into it out of obigation.  I thought I was clear about that, but obviously not enough.

And then beyond that, some people assumed that I had to ask other people for help because Rob wouldn't help me.  And that couldn't be further from the truth.  Since the beginning before any one else knew I was sick, Rob has been the first person to say he wanted to get tested.  My doctors told me to ask everyone I know in case he wasn't a match, again things were happening simultaneously because time was of the essence, so I didn't have time to see if Rob were a match and then ask people.  This judgment against Rob made me livid.  Not only was he there for me, he continues to be above and beyond anyone else!

I guess I find it ironic that the ones who cut me out of their lives are ones who never even bothered to call me to ask what was going on.  They simply made assumptions and harsh judgments and left it at that.  I guess my relationship wasn't important enough for them to salvage and now that feeling is mutual.

This emotional journey has changed me.  People have considered me to be naive in the past and I guess in some ways I was walking around with beer goggles on when it came to people.  I always saw the good in people, unfortunately now, this experience forced me to see the bad as well.  I'm angry about it because I could've coasted through life never needing to know some people's true colors. But I have and I can't change that reality now.

It's made me rethink my relationships, friends and family included.  I truly believe life is too short, so now I spend time and keep relationships with people I truly want to.  I'm pickier I guess.  So much so, I've recently cleaned out my Facebook friends list.  It felt really good. 

This blog has been therapeutic for me in many ways because again it allows me to express myself once and only once and I leave it up to other people to choose to read it or not.

All I ask is for you to keep an open mind and to try to consider what I was going through and I hope upon hope you will never find yourself in my shoes because no matter what you will never truly understand the scope of my actions.  You don't need to agree with me, but please respect my actions.

One of my friends reminded me of the good in some people, "Jenny, you could've asked me on a Post-It note and I would've helped you.  I didn't care how you asked me, just ask me."
(I removed the expletives...)  It did make me wonder if those who were offended, would've truly even helped.  I'll guess I'll never know.

Thank you again for reading and I hope you continue to find the value in our relationship as I do.

Jenny

Ode to My Husband

While I think about heading back to work soon and reminiscing about the life-altering event my family has been through, I can't help but realize life past me by so quickly the last few months. I know life goes on despite everything, but I've been reflecting on what I've missed this summer. Things we usually do.

For instance, we missed celebrating our wedding anniversary. It was eight days after our surgery. I missed my mom's birthday, it was three days after, and we missed Rob's birthday. And when I say missed, I mean I didn't celebrate them on time or how I would've wanted to. Of course, I have made up for all of it. I guess I kind of had an excuse.

But the reflecting continues. This is definitely a summer I will never forget. For one thing, it's been the longest stretch of time Rob and I have spent together without the normal stresses of life, work for one thing. Granted he gets this reprieve each summer being a high school math teacher. But to have the chance to share this special time with him has been invaluable.

I always view things as lessons in life. I can't begin to tell you the many lessons my disease has taught me. But the most prominent things have been how much I'm loved. I'm loved by all of you for one thing. I truly couldn't have been as strong as I have been without your love and support. Again... thank you.

I've learned I am truly, deeply, madly loved by my husband. I never doubted this, this isn't breaking news, but for him to volunteer to undergo surgery, to put his life at risk to save mine is the greatest gift he could ever give me. Before that it was Brooke, of course.

I didn't realize how profound his action was until I was back in the hospital three weeks after my surgery. It was a routine procedure, the doctor had to remove the stent in my bladder. Since the surgery and when I returned, the nurses kept saying how heroic my husband is and how lucky I am to have him. I kept thinking, "I know, I know. You're preaching to the choir. Tell me something I don't know." But each new nurse, doctor, surgeon, anesthesiologist who would come visit me, kept reiterating the message. Until finally, one nurse explained. She said they see transplants every day. Most of the time, unfortunately, recipients get dead donor kidneys. Live donors are rare. They are a rare breed. But even rarer are male donors, specifically husbands donating to wives. Wives tend to donate more than husbands, but for some reason husbands are not as willing. So when they see a husband donate so willingly to his wife, it is truly a gift. The nurse said this with tears in her eyes and held my hand and said, "This is why we think your husband is truly a gift and you are beyond blessed to have him."

I feel loved by his hugs, kisses, and daily reminders of how much he loves me, but not until that moment did I realize how much he truly meant it. How much he meant it when he vowed to love me in sickness and in health, how much he meant it when he said he couldn't do this thing called life without me. He would die for me and that was something so profound and moving, I felt compelled to shout it to the world.

I hope upon hope that each and every one of you reading this has or will find someone out there who loves you the way Rob loves me. I am truly honored to be his friend and wife. Thank you babe for everything. Thanks to you, I can say I know what love is.

The Surgery

I know I said I would provide updates on my progress via this blog while I was in the hospital, obviously I've underestimated how much the surgery kicked my butt! Only now (3 weeks later) I'm feeling like my old self and I can sit down with a clear head and put my thoughts down.

*Disclaimer* I am on a lot of medications, so if what I'm saying is a bit loopy, please forgive me :)

The big day finally arrived. Rob and I have been anticipating it for months. Even though we've been through meetings after meetings with our transplant coordinators, we still didn't know what to expect. Neither one of us have been through minor surgery let alone major surgery... well Rob did have his tonsils out when he was younger. So needless to say I was terrified. I can admit that now. But I was never able to say it out loud. I needed to be strong for myself... for everyone. Only now do I know that other people around me were terrified too, but they didn't let it show.

We checked in to the OR at 5:30am. Rob went in first. He was wheeled up to the OR first and then I was to follow around 10am. I went into the prep area and this was where I was to be given the anesthesia. Before that happened, there was still some waiting that needed to be done. While I waited, there was a young man who was laying next to me, he was only 26 years old and he was there for a brain biopsy. It made me feel guilty for being worried about my own surgery when he was about to have his head sliced open. It gave me yet another perspective. Throughout this process, I've learned many lessons along the way. This was another one.

I met my anesthesiologist. He asked if I drink. I said a few sips of wine would take me out. He laughed and said, "Well this will be like a full glass for you." And that's all I remembered.

The surgeries took about 4-6 hours. When I woke up, I heard a woman's voice and a gentle hand on my shoulder saying, "Jenny, Jenny, you're surgery is done. We're finished." I remember thinking, "Really?!" I was groggy and my memory at this point is very fuzzy. At this point, Rob had woken up and was recovering in his room. His surgery went successfully.

I was immediately told that they had to do an emergency procedure. I woke up with an IV in my hand and in my neck. The one in my neck had a tube that was probably about a foot long inside the vein in my neck. They said it was dangerously close to touching my heart. If it did, well I may not be here writing this today. So they placed a cloth over my eyes and the surgeon was yelling at people and I'm assuming now it was pretty frantic. I can remember her screaming at people to get things, do things, etc. She said it wasn't going to hurt, but all I could remember was that it was in my neck! AGH!!! I felt pressure, pulling, tugging, taping and it was over. Little did I know, she had to remove the sutures and resuture it after she pulled the tube out a few inches away from my heart. These surgeons are amazing!!!

During this time, my parents and my brother and mother-in-law were getting worried because they told them I would be in my room, but four hours later, they were given no new information except to say that I had to undergo an emergency procedure.

Finally, my family came in to see me, I woke up with this weird film over my eyes that has now crusted over. I was so groggy and weak. I remember asking how Rob was and that was it.

Rob who had just undergone a major procedure, had to walk over to my room to see me. I don't remember him doing that at all, I must've fallen asleep again.

The first night was the worst. I was given Vicodin so honestly the pain I would've felt was suppressed. But I couldn't sleep the first night, my nurse would come into the room to check my vitals every hour on the hour.

The next morning, my nurse made me get out of bed and walk. WOW!!! It hurt so badly. Basically my incision is about 6-8 inches across my abdomen from below my belly button to my right hip. The muscles were sliced open and the nerves have been jolted and pushed around, so getting out of bed was the most excruciating experience. And yes, I delivered Brooke the traditional way, so I know what pain is. My nurse promised me the next time wouldn't hurt as badly. I looked at her as though she just spat on my grandmother's grave. But she was right.

I walked gingerly around the recovery unit and walked into Rob's room and visited him. He was up as well. It was nice to see him smiling back at me and I was relieved to know he was recovering the way he should be.

The funny thing is I was so scared going into the surgery that the day of surgery, so much was happening so fast that I had no time to really get scared.

Waking up to see flowers after flowers and cards after cards being sent to my room filled me with so much love from all of you. Flowers to some of you may seem like a cliche, but take it from someone who was the recipient of those flowers, it means the world to know you were thinking of me. Again, it reminded me, I was not alone.

Take that Chuck Norris!

A friend posted this recently on her Facebook status, "I never wanted an easy life. I pray for the strength to endure a difficult one." - Bruce Lee

After our pre-operative evaluation yesterday at UC Davis, I'm finally at peace with my kidney disease. I never thought I would be and if you had asked me a year ago, the answer would've been a definitive NO! For months, I've been plagued with anxiety, fear really. I was terrified by the unknown. I'd ask, "What's happening to me? What's going to happen to me?" All the information I was getting from the experts seemed unreal. I would hear them, but the information was garbled, like in a dream, they were talking to me, explaining my situation, but the only thing that came in clearly were my own angry thoughts, "Why me? Why now? What lesson am I supposed to learn from this?"

It call came clear yesterday. The pre-operative evaluation was nothing more than another last-minute evaluation, a check-up before the big day Monday. The messages were the same, the risks, the explanations, the doctors, the surgeons, the nurses, the counselors. But for some reason, this time, it was different. Maybe the fact that I shook the hand of the man who was going to play a big part in saving my life, could've had something to do with it. It's crazy to want to thank a stranger profusely for something he has yet to do.

I've never believed in signs. But there were two yesterday that I couldn't ignore. I have been more nervous than anxious about my surgery. I have never had major surgery before let alone a minor one. The signs were in the form of a mother and daughter. The mother had donated her kidney to her daughter just two months ago. We bumped into them as we were leaving UC Davis. They were back for their check-up, they were beaming. They gave us some insight into what we're about to endure. They said the recovery is going to be a difficult one, it's going to hurt and it's going to be slow. Despite what they said, it gave me a sense of comfort. I can't explain why, but it did. My nervousness seemed to float away.

And it was at that moment, Bruce Lee's quote became clear. I realized the lesson I was meant to learn. All this time, up until yesterday, I would have never have categorized my life as an easy one. But my health has given me a new perspective. All this time, my life had been easy... a breeze really. I have never had to endure real loss, never had to go hungry, never had to deal with violence, never had to deal with abuse. I will be living a difficult life now, one that will be plagued with medications, the strictest of diets and numerous check-ups. I learned the things I've "never had" were things I've always wanted... to avoid loss, avoid going hungry, avoid abuse, etc.

Bruce Lee was a wise man :)

Now on to the logistics...

Many of you have been asking about the surgery and visitation. Rob and I will be reporting to surgery at 5:30am. We will both be prepped, but he will go in first. His surgery will take about 4-5 hours. I will go in 2 hours after him. Once they remove his kidney, they'll place it in me in an adjoining room. My surgery will take about 4 hours. The doctors expect us to be done around 3pm. The remainder of the time will be taken up by prep and recovery time.

Doctors say visitors are welcome. But there are restrictions, ONLY healthy people are allowed into the recovery wing. If you have a trace of a sniffle, they will not allow you to come inside for obvious reasons. My immune system is severely compromised by the surgery and from the medications. Another restriction is monitoring my rest. The nurses have strict orders to keep me well-rested so they told me to let all of you know to not be surprised if they turn you away if they feel that I need more rest.

But if you still want to make the trip, here's the info:

UC Davis Medical Center - 2315 Stockton Blvd.Sacramento, CA 95817

I want to thank you all as best I know how, even though I don't know how to truly thank you properly for the love and support I've gotten from you. Thank you for all the support via phone calls, texts, emails, hugs, wall posts, and oatmeal raisin cookies :) I could not have gotten through this difficult journey without each and every one of you.

Thank you for riding shotgun with me on this bumpy ride.

I think I shall name my new kidney Bruce... take that Chuck Norris!

The Way of the Sword

Kendo... the Way of the Sword. I never thought that something I have never experienced nor watched live would teach me something so profound.

Today is my first day working from home. It was not by choice, it was encouraged by my doctor, mandated by my boss. My surgery is scheduled in a mere two weeks. For now, I need to stay as healthy as possible. Well... as healthy as it can be possible for me. Even a little cold could send me to the ER and delay my surgery.

The option of working from home was always there. Thankfully, I work for a company that has been beyond accomodating. But I always saw it as defeat... to say I can't handle it and thus needing to work from home. I took for granted the mundane motions of getting ready for work. When you had no choice, it was seen as a chore, something you'd dread when the alarm clock goes off early Monday morning. But when I'm not allowed to go to work, as you can imagine, all I wanted to do this morning was... go to work.

There have been numerous lessons I've learned on this journey. I call it a journey because it's temporary. Like a coat I'm wearing for a little while. It changes how I look, how I feel, sometimes it can be heavy on my shoulders, but in the end, I will take it off and it will hang in my closet as a simple reminder...

Right when I feel defeated... I am once again smacked in the face with another lesson. Kendo... the way of the sword. Much like all Japanese traditions, honor and humility permeate in everything they do... even in defeat. In Kendo, the winner and the loser don't celebrate nor get angry when they win or lose.

They're measured not by how they fall but how they've carried themselves... by how they get up. And that is how I plan to measure myself through this journey.

We've Turned A Corner

It has been years, more than a decade in fact since I've started counting down the days till summer vacation. Back then, it was the start of no more homework, mid-terms, study groups, finals, and research papers to write... at least for three months. As of lately, the longing for the start of summer vacation has been because Rob will be off and I got to spend more time with him. Now, I long for summer vacation to start because with fingers crossed, I will be getting a new kidney at the start of this summer vacation...

Now that we have the surgery scheduled, I just have to stay as healthy as I can till then. Otherwise, a peritoneal dialysis surgeon is waiting on the wings to place a catheter in me so I can start my dialysis. No fun... anything you can't pronounce easily is no fun... trust me.

It's day 5 of getting the good news and I'm already sick. Caught a cold my daughter had last week. The joys of motherhood. So I guess you could consider this a health pact - FAIL. I'm trying but those pesky germs are allusive.

So along with thousands of other school children and teachers out there, I too am looking forward to summer vacation to begin! That will mark the start of me feeling better again, getting back to my old self. My recent trip to the ER a couple of weeks ago was no fun. I've lost some weight because my appetite has gone down significantly. I've grown more tired as each day passes. I try my best to keep up with my two-year-old. So June 21st is where all of that will turn a corner.

Click Clack

Click clack, click clack. To most of you, that's the sound a keyboard makes when you type or the sound of women's high-heeled shoes. For me, it's the sound my pills make when I pick them up every day.

I never thought that at my age I would be picking up a daily pill counter from Target. The kind that most of our grandparents use because they're having to deal with various types of ailments. It comes with old age, it's normal. I'm reminded at least twice a day, once in the morning before breakfast and once right before dinner, my life is nothing but normal.

At first, it was daunting to have to remember when to take them, and which ones. Who ever invented this was a genius, it seems like such a simple concept but someone had to come up with it first. If it weren't for a frustrated pill taker who had the where-with-all to invent such a thing, I'd be forced to look at a bunch of bottles everyday and hoping I got the right pill.

This is just a glimpse at what my life has become. Brooke sees me gag and eventually down these pills each morning. I call them "mommy's vitamins". She must think I'm super strong with all these vitamins I take every day. And some of them are doozies. The fish oil ones you see there are like horse pills, yuck!

So to continue my update... after my initial email asking family and friends for a kidney, I received a number of emails and phone calls from people. Some wanted to simply say they were sorry, others wanted to help. I'd like to take a moment to thank all of you for being my friend. I was fortunate enough to have met and made some really great people in my life. I was fortunate to have the ability to email more than 300.

But I'd especially like to thank the ones who stood up when many others couldn't nor wanted to. (I know some of the things I say here in my blog will offend some people. But this is my journey and most of the time, it hasn't been pretty.) 38 people came forward, half wanted to help right away, the other half wanted some information. All friends, none were family except my brother and my husband's family.

While they were getting informed, so was I. I had to go through an evaluation which was made up meetings with a social worker, nephrologist, and case worker. Once I was deemed a good candidate for transplant, my case would be evaluated by a committee who would then place me on a kidney donor list.

Like many things, this took time. In the meantime, if there were any potential living donors, they needed to get screened right away. Out of the group of 38, ten people came forward. Out of the ten, 3 people were screened first and they were all a match! My husband is one of them.

He has since gotten his final work up done and unless they find something glaringly wrong in the results, I can expect to have surgery this summer! Not since high school was I ever this excited for the school year to end...

But for now, click clack goes my pills.