The Reality of It

 Hello friends. 

It's been a minute. 

I'm now 16 months post kidney transplant. And my donor kidney affords me so many benefits. I continue to have less water retention, more energy and clearer thinking. 

I was able to see a concert last month. That in itself was a miracle. 

I am thankful every single day I open my eyes. Thankful for a second chance for as long as it can last. 

There is something I've been dealing with for about 4 months now. A new diagnosis. Something I feel I need to share because ultimately it will impact social interactions and family traditions. 

I've been diagnosed with diabetes-related gastroparesis. 

This is a condition that affects the stomach muscles and prevents proper stomach functions like emptying and digestion. 

The reality is, 25 years of blood sugar swings have damaged my vagus nerve.

Symptoms include nausea, stomach pain, vomiting and an extreme feeling of fullness after food is eaten.

Treatments are limited but can include Reglan, a surgically implanted stomach stimulator and a few drugs used off label.

I'm feeling a bit isolated again with this turn of events as my diet currently consists of white bread, plain grits, cream of wheat and eggs. 

I've had a few "flare ups" which almost sent me to the hospital. It is a hard condition to explain to anyone.

I know it will change the way I celebrate holidays, birthdays and simply going out to eat. It already has.  

So if you are with me, keep this in mind. It's pretty miserable and some days I just can't handle the pain. So if I cancel on you or can't eat what is served at parties; please don't take it to heart. 

In other news, I will have my kidney function tested on Thursday. Hope to get good news there. 

Thanks for reading! Be kind to each other. 

Xoxo. 

A Collection of Miracles

The tiredness filled my body like a flu. Every nerve ending studded with numbness. My head was spinning with each word that sloppily found my lips. 

But I had to do it. 

I reached down just below my belly button. I focused just long enough to feel a rough, scratchy line. It was longer than I expected and also deeper. I had just woken from a 4 hour surgery to receive a new kidney. 

Fast forward a month. 

These days are filled with eating what I want again. I slice ripe avocados daily. A little sea salt and crushed pepper, and I am a happy girl. 

These days I wake up with no bloat in my body. I have no bags under my eyes or edema in my feet. I feel light ... maybe airy. 

I catch myself staring at a picture that one of the surgeons took of my donor's kidney, which is now mine. When I look at it, my heart starts to quicken its beat. It is such a beautiful specimen, all pink and red. Aglow with oxygenated blood and tissue. I look at this, and I say thank you aloud. I look at this, and I know despite the difficulties that have littered my life, that I was chosen for this miracle. 

So many miracles that came together to form this fantastic web of healing. My donor had the biggest heart to get tested. Not only were we a match, but we were a 5 out of 6 match. Basically, we matched like siblings would. 

We both got through our surgeries and were trying to walk the next day. 

Today, we are learning more about each other. We chat a couple times a week. I hope we are forming a foundation for friendship for a lifetime. 

This morning I sat in the quiet reading some of my favorite essays. I made my own latte with extra milk foam. I stroked my baby bunny's fur as he warmed my feet. 

I was in awe. 

I catch myself in wonderment of normal daily activities. Each breath I am given is absolutely precious. It is so easy to dismiss life when it is easy. It's been so long since my life was easy, it is hard to remember it. My new kidney is making it "easier."

I think the biggest miracle of them all is knowing with all of my being that I will never forget how miserable life was with a failing kidney. Each day I woke with a sadness so heavy, it hurt. I treasure my new kidney like finding a lost friend.

So MANY lessons to observe here. I am letting them sink in. I can feel them in my bones. They are filling me up and patching holes. Slowly, slowly rebuilding me. 

Deadlines, demands and uncertainty

 How do you feel about disappointment?

I thought I fully understood disappointment. I felt I had embraced it throughout my adult life as I navigated diabetes, kidney disease and neuropathy. As I was forced to accept all that those chronic diseases took from me. 

But when your life is on the line, disappointment means something totally different. Something so painful and frustrating, it cannot be fully or functionally explained. 

And that is where my kidney transplant lands me currently. 

I was waiting to give an update with the hope of good transplant news. 

A few months ago, my transplant team told me I could not proceed with a surgery (even with a donor) until I brought my a1c (3 month blood sugar average) down to what they wanted. 

A huge challenge indeed. 

But I was up for it. 

For those three months I fought to lower my average. I tracked my sugar hourly. I NEVER slipped up on my food choices. Basically I was perfect. (A very unattainable and unhappy way to live). 

And though I didn't get my sugars to the exact number requested...I was within range. 

YEAHHHHHH! I WAS SO FREAKIN' PROUD OF MYSELF!!!!

I gave my transplant nurse the great news. She called me a week later to tell me that unfortunately they STILL cannot clear me for surgery because I now have to receive two chicken pox vaccines. 

I have already had chicken pox, but as luck would have it, somehow my body has lost all immunity. 

Now I'm frustrated. As these vaccines add an additional 8 weeks onto my wait time to be listed as active on the deceased transplant list or cleared for surgery. 

Fast forward 8 weeks. I diligently attained both vaccines. I sent my paperwork into my nurses' office. 

Again--yeah!!!! 

Again--I'm sorry Ms. Zopfi but after talking in committee Dr.XXX has decided she wants you to see a gynecologist for your uterine fibroid prior to be listed. 

Beyond disappointed. 

I actually burst into tears. Sobbing wildly to my nurse about unfairness and exhaustion. 

Ending the phone call between confusion, anger and training my mind to trust the process. 

I need a kidney to live a healthy life. 

I need a kidney sooner than later so that I don't risk the strain of dialysis on my heart muscle. 

I need a kidney to find MYSELF again. 

So now I have an appointment scheduled with my OB/GYN next week. If they clear me despite my fibroid, I should be listed as active. (Meaning I can receive a transplant when one becomes available.) 

In the meantime, I continue 3.5 hours of dialysis 3 times a week. 

I plan on decorating for Fall this weekend. I've got more pumpkins than is acceptable or healthy. And I can't wait to put them all over my house! Lol! 

I've also been bestowed a hard working husband and fantastic kid. Both of which pull me out of the darkness time and time again. My absolute everything. 

Keep your fingers crossed!! 

Extra tight. ❤️

Settling In/Awaiting A Miracle

 I'm in a weird place, man. 

I'm in between a life of agony and possibly receiving my second miracle (the first miracle being the adoption of my son). 

I just spent a day at UK getting my heart tested three different ways and a neck to toe CT scan. 

The findings are yet to be evaluated by a doctor but should be on Wednesday when my transplant committee meets again. 

When I was in dialysis on Friday I was updating my nurse Tiffany on my transplant tests. She said: "Well at least you care enough to get a transplant. For a lot of these folks, this is the last stop."

The last stop? 

I can't accept that.  I'm 41 years old. 

I have an 11 year old son who still very much needs me. I have a husband who would feel lost without my love. I have a family who enjoys my company. 

So I sat looking over everyone in the dialysis unit. I imagined what each of their lives were like. I overhear them FaceTime-ing their nephews, sons and mothers. I listen to the older folks tell stories to the nurses. I chuckle when the older men flirt. 

I think a lot about each of them. I ponder the wonder of new life when I see my nurse's belly swollen with baby. 

And I can't shake the feeling of shock when I hear two of the folks on my unit passed away between our last treatments. Poof. Gone. 

No. I'm not ready for a last stop. 

The folks at UK transplant tell me someone is in testing to be my match. I don't know who it is. 

So, I wait. I wait for a miracle. For someone's kidney to match mine. What an astonishing thought. 

Maybe God, the universe...planned us that way. To share ourselves to give each other more time. 

To keep the train moving until the last stop  

The Big D.

I'm two weeks into hemodialysis, and it's not getting better. 

The nurses are nice. The people are friendly. But it is a sad, lonely process. 

I'd like to paint a picture for you. I will add as much detail as I can so that I can educate my readers on how dialysis works. 

As I walk into the clinic, I am greeted at the door by a technician. She holds my bags for me while I step on a giant scale. 

My weight is taken and the results print out on a tiny piece of paper. 

The room is full of loud beeps and alarming sounds. They constantly go off. Some for low blood pressure. So for clogged arterial lines. 

Right now, I am placed in the "Covid" room even though I do not have the virus. The clinic is currently too full, so I take the only place they have open. 

As I make my way to the closed off room, I pass by an elderly man. He always says good morning to me. I smile and say hello. He wears a winter hat, sweatshirt and a white blanket. I know how cold he is because the A/C is set to a brisk 68 degrees everyday. And when you have your blood drained out of your body for 3 hours, that's too damn cold. 

I open the door to my closed off room. I sit down in my chair and nurse Tiffany gets to work. 

Every session she does the following:

-takes off my old gauze bandage from my central venous line in my neck. 

-cleans my healing wound with alcohol. 

-cleans all of my line tubing 

-pushes saline into my entrance and exit line

-takes my blood pressure

-hooks my lines up to the machine and starts my treatment 

As I watch a cup and a half of blood leave my body within seconds, I cringe. 

It's terrifying to know how quickly I could bleed out should something go wrong. 

For the next three hours I sit as a machine drains my blood, cleans it, removes some fluid and returns it back. 

For about an hour I read or text. And then the loneliness sets in. 

There's a TV but the volume doesn't work. Around this time I start to shiver. Even with a hat and heavy blanket, it's freezing. 

Around hour 2.5 I start to cramp up. My feet contort into strange shapes and hold there while my muscles seize. It fucking hurts. 

This is also when my blood pressure drops. Too much. 

It makes me feel woozy and nauseous. Nurse Tiffany comes in when my machine alarms her. Unfortunately she has to return some fluid (saline) back to my body. It's the only way to bring my blood pressure back up. 

It defeats the purpose though because I'm trying to lose fluid. Then I remember: this machine is NOT a kidney. 

My kidneys don't work. 

And I NEED A NEW ONE. 

At the end of 3 hours, Tiffany flushes out my lines, re-bandages my neck and checks my bp again. 

I'm usually very hungry, thirsty and tired. 

This is where the real fun begins. 

Since I'm only allowed 32 ounces of fluid, I haven't drank anything. But since I'm dying of thirst, 8 oz feels like nothing. 

I drink it slowly, but it doesn't help. When a person is really thirsty, it becomes an primal need. 

Let me say this: IT IS SO HARD NOT TO DRINK WHEN YOUR BODY SAYS ITS THIRSTY. 

I cannot express this enough. And it breaks my heart that all of my dialysis friends have to experience this. It is by far one of the hardest things to do. It's almost breaking me. 

After I get home and eat, I usually fall asleep sitting up. I try fighting the fatigue but end of losing the battle. 

I wake up feeling lost and disoriented. It's late in the afternoon, and my day is almost over. 

I do this routine every M-W-F now. And to be perfectly honest--it sucks. Big time. 

My friend Kelly is getting tested to see if she's a match for me. However, it's early in the process and there are not guarantees she's the one. So, I'm still looking for potential donors who would step up in the event she doesn't match me. 

If you are interested in donating to me, and have type O blood, call 859-323-2467. 

Forward

 It's been a couple of weeks since I have posted. 

Mostly, I've been sleeping a lot and trying to find the needed energy to rally day to day. 

A few generous and amazing people have stepped up to see if they're a donor for me. Unfortunately, none of them match my blood type. 

I need 🅾️Blood type. 

I did have one potential donor who has my exact blood type, but they backed out of donation after the initial steps. 

As you can imagine, I was crushed. Absolutely heartbroken. 

As I type this blog post, tears keep welling up in my eyes. 

This is as real as it gets: and I need help. 

I have to find the courage to move forward. The right person is out there. I'm calling on your common humanity.

Here are the facts:

✅you only need one kidney to live a healthy life 

✅surgery and doctor appointments are covered by my insurance 

✅time off of work for surgery is minimal (1-3 days on average) 

 (source https://ukhealthcare.uky.edu/transplant-center/programs/living-kidney-donor-program)

Every morning I open my eyes and see the sun coming through my window is another chance. 

It's another opportunity to find my donor. 

Thank you for reading and please share my information. 

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.