Big ask, Big give.

 

A lot of people have asked me when my transplant is taking place. If I'm on a list yet. If I have possible donors. Therefore I want to explain the long process. 

 

When is your transplant scheduled?

I do not have a donor yet. It could take a year before I get a transplant surgery.

 

Are you on a list?

No, I am not on a list yet. I will have to be checked out by multiple doctors to make sure I have no infections, cancer, or other diseases that could affect or reject my transplant. My first clinical was set up a month after my education class. And my last appointment is in October to get me on the list. 

 

What do I do if I'm interested in donating a kidney?

Anyone interested in donating will also have to go through rigorous testing with doctors. I am A+ blood type so a match for me would be A or O. But if you are interested in donating and are NOT a match for me, they have an exchange program. In that case your kidney would go to someone and a match would come back to me. 

 

How will I pay for it? Will I get any assistance financially?

Did you know?

The National Living Donor Assistance Center provides financial support for travel to the Transplant Center for eligible living donors!


 

Learn more by clicking each picture below. 


 

Thank you for anyone who has supported me and shared my journey. If you are seriously interested in donating a kidney to me; feel free to fill out this form and I will contact you. 

Date *
Date
Name *
Name
 

And check out the Big Ask, Big Give website to learn more about being a donor! 

A diamond in the rough



I was given a chest catheter to begin Hemo-Dialysis March 31st, 2017, the day after being admitted to ICU. They numbed my chest so I didn't feel a thing, gratefully. My first treatment is where I met Gene, Davita tech, and Hang, Dialysis nurse. I will remember these two the rest of my life. They really helped me through the hardest time in my life. I'm a strange case and my body doesn't withhold water like most dialysis patients. Therefore my blood pressure didn't want to stay stable. I was quite sick after my first couple dialysis treatments. Hang was wonderful about understanding and informing me why my body was doing what it was doing. I can't thank him enough for keeping me alive.

I had a lot of time to think those 9 days in the hospital. I was mad that this happened to me. I was sad that I had to quit working. I was imagining what the next year or so of my life would be like on dialysis leading up to a transplant. Wondering how many transplants will I get in my lifetime. Thought about the physical scars I would be left with. Thought about giving up my beloved potatoes because of the amount of potassium in them. It just wasn't fair. Life isn't fair. And me pouting wasn't helping the situation. 

If you know me, you know I'm a busy-bee. So being stuck in a bed 24/7 getting poked every couple hours is depressing. I asked my nurse if I could go on an anti-depressant to help me deal with everything. My mom and her boyfriend came to see me everyday. I had a friend, Mrva, surprise me with beautiful flowers (That I wasn't able to see until I left the ICU.) And Tisha, my best friend, found me in the ICU the day after I was admitted; even after I ignored her texts because I was too overwhelmed. I love her. Also, it's amazing how much a little mild flirting can make a girl feel better. There were lot's of male nurses, techs, transporters, and doctors. I was a hot mess. A gross hot mess. But being a younger female in the dialysis wing was like a diamond in the rough. I felt the attention. And I didn't mind.

I had to quit 2 different films when admitted. They sent me flowers in the hospital. This was really dissapointing to me because work had just picked up. I love to work. I started seeing snapchats and facebook posts from set on these films. My friends having fun, working long hours, living life. It killed me. And all I could do was watch Netflix, walk the hospital hallway, and steal chocolate ice cream from the community fridge. I started having dreams about working.  In one of these dreams a film took over my house without my consent. I was yelling for Locations and I punched the Director in the dick. I believe I had taken Xanax that night.

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This is how it began..

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"Is this normal?"

She told me to show, Carmen, a medic on set that day.

I had weird bruising all over my thighs. I didn't run into anything. I didn't play rough with the dogs. I justified it in my head as me being slightly anemic. Just add it to my other weird problems like being an overactive puker, headaches, and having a tingling sensation every now and again. It kept progressing and so I confided in my friend Angela for her opinion. I showed her a picture and asked, "Is this normal?". She told me to show, Carmen, a medic on set that day. He advised right away for me to get checked out by the ER. 

I got a job as the main actress in a music video for the band, Starset, filming the day after Carmen advised me to go to the ER. It was in town, paid, and a one day acting gig. I figured I've waited this long to go to the doctor, I could wait one more day. I noticed my eyes were pretty puffy when I woke up. I put some firming eye cream on and finished the day. Tired, but none the less, I finished the day. 

The next day I leisurely woke up. Since work finally picked up, it was my only time off for the next week. I eventually remembered what Carmen had said and showed my mom my bruised thighs. She was the final push to go to the ER. She said "We are going now." I'm the type of person to put pain on the back burner. I like to keep up. To justify why something is wrong instead of asking for help and succombing to my ill body. So, I needed my mom to make me go or else I probably wouldn't have gone.

It was around 4pm March 30th, 2017 when we arrived at Mount Carmel St. Ann's Hospital ER. They take blood pressure as you check in at the front desk. Mine was in the 200's, therefore they admitted me to ICU within the hour for blood work. The tests came back as my creatine was at 12 which it should be around 1. My postassium was super high which is dangerous because that could cause your heart to stop. These symtoms and even my overactive puking and puffy eyes are all from kidney's that are not working properly. They did not have a reason for it yet but I was diagnosed with End Stage Renal Disease that night. 

 

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Introduction..

Hi there! My name is Johanna (silent H). I figured I should make an introduction. 

 
  • an actress
  • a filmmaker
  • a dogmom
  • a friend
  • a lover
  • a navigator
  • a networker
  • an adventurer
    • single
  • determined
  • energetic
  • optimistic
  • confident (some days)
  • silly
  • sexy (not many days)
  • kind, patient, & persistent
 

I work in film, I'm 29 years old and Im on dialysis. 

The whole dialysis thing is still new to me. I was diagnosed end of March this year (2017). I haven't been able to work since because of the ups and downs my body has been going through. I've also been switching from Hemodialysis to Peritoneal Dialysis (Click the link to learn about each dialysis.) which Ill explain more in depth in a later post. Took me a couple months to pull the trigger but I decided to film a documentary on my journey from dialysis to kidney transplant. I had no idea how many people go through this and I want to create some more awareness. I also just want to keep myself busy creating film. And there IN A DIALYSIS DAIZE the documentary was born. I started hash tagging #InaDialysisDaize while I was first diagnosed and decided it would be the perfect title. Considering the doc won't be released until after I get a transplant and finish the film; I've decided to make this blog in an effort to keep people in the loop with my health, the transplant process, and again to keep my mind busy. I will try to keep it updated MONDAYS AT 9AM.

 
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Rocky & Rufus

These are my fur babies. The most appealing baggage I have. Just look at that face!

 

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