Embracing Life

I wanted to write a moving and inspirational post about celebrating my two-year post-transplant milestone. (I also wanted to post a nice family picture, where everyone was looking at the camera, the twins did not have to be separated because they were hitting each other, the shorter boy on the right was not squeezing his brother's stomach too tightly, and I did not have a glowing bulb of sunlight shining brightly on my lady parts, but well... you know... that's life.) Instead I will share one of my favorite pictures of this day. We had wanted to do an outdoor autumn photo shoot with my family (grandparents included). It was scheduled for the end of September in Chicago. So of course, I bought (matching) long-sleeved shirts for the boys, had a pretty (color-coordinating) sweater picked out for my girl, Keith was going to wear his grey pullover, and I lovingly pulled out my tights and boots for what I thought was going to be a cool and beautiful fall day. It was 88 degrees...

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. ...

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, b...

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 th...

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 reason...

per·spec·tive /pərˈspektiv / a particular attitude toward or way of regarding something; a point of view. Last week, I called my mom with a medical question. I had kneeled down on Colin's bed as I was tucking him in and was met with a sharp pain in my knee.  I looked down and my knee had begun to turn purple and swell.  We decided it was just a broken blood vessel (a really big one apparently). I said "What are the odds of me getting a broken blood vessel from just kneeling down?" She replied, "What are the odds of you getting kidney failure?"   Haha, good point. I laughed at her comment.  Because it's true - I don't seem to have good odds. I've always said that weird things happen to me . I can't help it, I attract weirdness.  And I am ok with it. Sometimes I enjoy it, other times, I wonder why me?  The 2nd opinion doctor told me I had bad luck.  Not only do I have a normally benign hereditary disease that only progresse...

This week started off great! Monday morning, I was on time for work - excited that this was the first week since the end of February where I did not need to use sick time for lab work or doctor's appointments. I treated myself to a Dunkin Donuts iced decaf coffee, half cream in celebration. Before work, I sent off a quick email to my kidney doc with my recent blood pressure readings.  (My bp is running high due to the steroids I'm on.)  I was super excited to share that my numbers had been down!  And then the week went downhill from there. I was paying so much attention to the top number, I didn't realize that the bottom number still wasn't in the correct range. Which meant an email back from Dr. A stating that I needed to immediately start a super restricted low sodium diet. I had already changed my diet quite a bit when all of this started, so all my fun happy foods are gone.  Now there isn't much left.  The biggest decisions I've made this week are whether ...

After I received my kidney failure news, my doctor reached out to a colleague at Rush University in Chicago.  This was a specialist in the field of nephrology.  The doctor advised to not use steroids, just go straight to the transplant process.  My doctor seemed disappointed at this, as he thought steroids could help.  I asked if we could try a low dose anyway.  "Low dose" in this case is 40 mg/day.  That's a lot more than you get if your regular doc gives you a steroid script for a sinus infection or inflammation.  It's been a little over a month on predinisone.  Life is tough on it. Don't get me wrong, I am super thankful for the little white pills I take each morning.  They've made some inflammation go down, and my lab work go up. I will take it. But the side effects are a PIA.   Sleep, or lack thereof I don't sleep. In fact, I haven't slept in 3 days.  Well, ok I am being a little over-dramatic. I've had roughly 8 hours of...

31 one days ago, I read my test results on my phone app. Then I stood in my kitchen and cried soft tears as my brain registered "GFR = 12".  Under 15 is bad, bad, bad.  12 gets you a call from a specialist at big-name Chicago hospital whose brash bedside manner may not be the best fit for most people. "Shit, you are still a kid," he said when I told him my age. "Get in and get a transplant now." His next piece of advice was softer. "Be pro-active. Call the hospital now, and then call back to follow-up. Don't wait for them."  He even gave me his personal email if I had additional questions.  So I did as he advised.  I called. When they told me they couldn't see me until May 22, I asked to be put on a wait list if someone cancelled.  The man was surprised - they don't do that sort of thing. But I didn't let that stop me. I received all the paperwork in the mail. I found my possible donors.  A few of them fax...