Steps To Take

Whew. 

That's how I feel after a nearly four hour meeting talking about my kidneys! 

Actually, I feel well informed, excited, exhausted and cautious all at once. 

This next paragraph is important...IF YOU WANT TO BE CONSIDERED AS A LIVING DONOR FOR ME, this is the number to call: (859)-323-2467. 

You will speak with a donation coordinator who can begin testing for you and answer any questions you may have. 

I am O blood type. 

I can only receive an O kidney donation. 

BUT!! 

Even if you aren't O blood type, you can still be listed as a live donor in the kidney exchange program at UK. 

How this works:

1) You get your blood tested. 

2) You are matched with a stranger who needs your type of kidney. 

3) You donate a kidney to this individual once the match is made. 

4) I get a kidney at the same time if my match is made. If not, I receive a "voucher" for a kidney which moves me to the top of the waiting list for live donation. 

The one thing that was stressed to me over and over throughout my meeting with the transplant team was stay off of dialysis if I can help it. 

The only way to do that is to receive a live donation. 

A new kidney for me would mean better health. But it would also allow me to see Holden grow up into a young man. 

It would allow me more memories with my aging parents and brother and in-laws. 

It would allow me the freedom to make those memories in a way that has been stolen from me for so long. 

If you have it on your heart to donate call that number above. 

If you have any questions  shoot me a text (502)-807-2399. Or email me: szopfi@gmail.com. 

Thank you for reading!! 

I'm excited about new possibilities. 

Still Looking For The Good

I'm so tired.  

Like deep into the cells of my bones tired. 

The fatigue lies over me like a weighted blanket. I lift my limbs to climb out of bed and it feels like I'm rising through mud. 

I don't know how I'll move through my day. 

When you're feeling like this day after day, you lower your expectations of yourself. Not in a bad way, but in a "I'm gonna show up, but that might be all" way. 

And when you're feeling this way, the good things become extra exquisite. The bad things become extra rancid and ugly. 

Despite my situation, I continue to look for the good. 

This past week brought a few "exquisite" moments my way. Ones for which I am thankful for (in many different ways). 

First, I received a gift in the mail from a person I've known since college. We worked together at the college newspaper. We even dated the same guy, around the same time. And that is probably why we were never close back in our younger days. 

But over the years, we've connected here and there. She married and lost her first husband tragically. And I remember watching her (through social media) navigate her way through heartbreaking things...challenging times. She remarried and has a beautiful little family. 

When I opened her gift today, I teared up. 

I could feel the human connection. From one person who experienced heartache to another. 

Thank you, Amanda. 

Second, I received a phone call from my Uncle Steve. 

We don't often talk or see each other because he lives in another state. 

It meant the world that he took the time to call me. Not only did he want to check on me, he asked genuine questions about my health and kidney donation. 

Thank you, Uncle Steve. 

Third, a day long visit from my dear friend (my OG), Emily. She found care for her two babies, and drove from Louisville to hang. No one makes me laugh like her. A visit that left me full in a way only good friends can leave you. 

Thank you, Emily. 

Good things these days come in unique shapes and new sizes. 

And I'm open to receiving them with an appreciative heart.

When Prayers and Good Vibes Aren't Enough

I was thinking about words to adequately describe my current state of mind. 

A few that popped up were: 

Overwhelmed. Brain fog. Fight or flight. 

But the word that stood out the most was:

ACTION. 

As in what needs to happen for me to live. 

The steps I must take to advertise my life. 

Because that is what I'm doing. I am advertising to you (the reader) about me (the sick individual) in an effort to have someone take action. 

While I appreciate positive thoughts, prayers and good vibes only...they don't always result in action. 

I read a great article the other day written by a fellow chronically ill warrior. And she had some really good things to say about action in motion when a friend or loved one is very sick. 

Here are a few tangible things that you can do if you are so inclined to help me (and my family) in this challenging time:

1) Cook a meal- I am often too fatigued to cook and my family still loves to eat! Frozen casseroles or other dishes are such a help to have on hand. I have many dietary restrictions now I can discuss with you. 

2) Volunteer your time! Sometimes I need a ride to an appointment or a ride home depending upon my husband's work schedule. It's a real challenge to juggle it all.  

3) Mail a card or letter! I spend most of my days at home sleeping or just watching TV or reading these days. I'd love to hear from you!! 

4) Send a little something to my kid or husband. They both work so hard to take care of me. I know they'd love a little surprise in the mail too. 

5) Finally, don't let my situation make you feel scared of your own mortality.  

I need a kidney. I need a lifesaving donation. 

If you have any questions about living donation (if you're even vaguely considering it) ask me. Donating a kidney is actual a pretty simple surgery and the down time is only about one week. 

You can reach me at szopfi@gmail.com 

Big Ask, Big Give

 Some of you may know that I have kidney disease. Over time, my kidney disease has gotten worse causing my kidneys not to work well enough to keep me alive. This is what I am facing now, and my treatment options are limited to dialysis treatments or a kidney transplant.

Getting regular dialysis treatments, usually three times a week for four hours at a time, will help my kidneys do their job and keep me alive, but a transplant would offer me more freedom and the ability to live a longer, healthier, more normal life. A transplant would also give me more time to do the one thing I enjoy most, raising my 11 year old son.  

Being an active and present Mom isn't something I can do efficiently right now.

 

Finding a kidney for a transplant is not easy. Just ask the 100,000+ people on the waiting list for a deceased donor kidney like me. Some wait for years; many die while waiting. The average wait time is five years or more for a kidney from a deceased donor.  However, there is ANOTHER option: receiving a kidney from a living donor.

Asking people to consider donating a kidney isn't easy, but it greatly improves my chances of getting a transplant.

You might not know a lot about living donation. Understandably, some people are afraid about the surgery and what living with one kidney will mean for them. Here’s some basic information about kidney donation:

You only need one kidney to live a healthy, long life.

Most donor surgery is done laparoscopically, meaning through tiny incisions.

The recuperation period is usually fairly quick, generally one week. 

The cost of your evaluation and surgery will be covered by my insurance. You will have a separate team of healthcare professionals to evaluate you as a living donor. Their job is to help you understand the risks and benefits. You can also learn more about living donation on the National Kidney Foundation (NKF) website: www.kidney.org/livingdonation

Thank you for taking the time to read my story. If donating a kidney to me is something you would like to consider, I would be happy to tell you more about my story and explore the process of determining if you are a match for me. You can email me at szopfi@gmail.com or by phone 502-807-2399 if interested or if you have questions.

If you don't think living donation is right for you, please share my story and contact info with everyone you know and on social media! 

 At the very least I want to bring awareness to kidney disease and living donation. I am hopeful my efforts will help me receive a kidney sooner and encourage others to give the gift of a lifetime!

Love,

Sarah