Day 70, HOME

Joni went home home yesterday. Gone is the hospital bed and all the machines in the living room. Just a plain old couch, tv, and a new air purifier. Mo & Joni are officially home alone again together and all is right in the Price household. Thank you so much to everyone who showed their love, support, & strength during this crazy time. We are all truly lucky people, Joni perhaps the luckiest of all.

DAY 45, “Home”

SHE’S OUT! Address updated. (Lego lungs by Joni’s great nephew, Declan). What a gift today is!

DAY 44, PCU

“Hopefully going home on Thursday after almost 7 weeks being leashed to monitors and oxygen. I moved freely on my own yesterday and it was divine. I am so fortunate to have survived this disease and make it to lung transplantation. I have faced the imminent prospect of death and now look to the future with renewed hope. I could not have psychologically processed this without my beloved family and friends by my side every step of the way. The gratitude I feel for my donor is difficult to articulate but I plan on writing a letter to my donor family and you may share a card or letter if you would like to share your experience. My focus will be my health in the next few months with multiple appointments at UK. I am officially retired with my girls. Don’t know what they are going to do with me driving the golf cart!! Special thanks to Nathan & Allison for giving up time to spend with Mo & me. Those memories are priceless.”

“There are not enough words to describe the importance of having my sister Pam give up so much to care for me. I love you so much Nan. You are extraordinary!!  Thanks to everyone who texted called sent cards wrote on the website. Those positive thoughts and prayers mean the world to me. I am blessed and grateful for y’all. Wishing health and happiness to all” 💜Joni

DAY 37, PCU

Joni and her care team have officially started discharge planning! Most lung transplant patients are discharged between 2-3 weeks so the goal is to have her out the door sometime early next week which will put her at 2.5 weeks post op, right on track! She still needs her last 2 chest tubes removed. She’s getting food prep education, medicine schedules, insulin blood sugar testing info, outpatient pulmonary rehab set up, daily vital signs (BP HR Temp Weight) & lots of other items. Whenever Joni leaves the hospital she will be staying with Pam on Stephens farm just outside of Lexington for a few months to keep her close to her lifesaving care team at UK. I will update her contact page to her new address shortly.

“Mentally staying in day to day mode because things move on the rollercoaster 🎢 and it’s not stopping even when I go home! So blessed grateful and willing to do whatever it takes to optimize this gift of life! God bless the donor family 💜”

As her hospital stay is coming to an end, we would like to thank everyone again for all the visits, snacks, laughs, gifts & cards. Joni is one lucky gal!

Day 34, PCU

Yesterday was Derby Day and Joni was so grateful to be feeling well enough to FaceTime all day & bet from her hospital bed! “It was a glorious day spent with family & friends. I watched Derby with Mo and Deb Mark Kat Kev Gail Nathan Allison on the phone screaming just like together at home 🐎🌹‼️🎂💰❤️🏆it was spectacular”. Today she was moved from the ICU to the PCU, Progressive Care Unit, which is one step closer to going “home”. She then walked the whole hall OFF oxygen. We’re all very excited. I have updated her address on the contact page.

DAy 31, ICU

“Joni & her bodyguards getting ready to take a walk! She walked the entire floor!! She is doing great with her breathing, going higher every breath. High flow oxygen & feeding tube are taken out of  her nose (made her very happy). She is back on oxygen like at home. She's doing really well!!! I will let Joni reach out when she's ready to send info to all about sending letters of gratitude to the donor family. I read to her the info they brought. Heading home now, she wants to sleep!” -Kathy Thomas

DAY 29, ICU

Off the Ventilator, focusing on breathing today. Minimal talking, will be taking a walk at 2PM. Will be doing breathing exercises 10x per hour.  She wanted to ask all kinds of questions and Dr. Nandavarm said today is for breathing, but she did tell her she got very young lungs, younger than her child and to be thankful.  I have been to the chapel and prayed for the person and family that gave Joni this gift of life💝🫁

Day 28, ICU

Joni has had a rough night, difficulty breathing because she has fluid in her lungs so the team added meds & put her on BIPAP forcing air into her lungs. The bronchoscope is done, Joni is very comfortable & will sleep for awhile.  The lungs look good, will continue pulmonary medications, fluid removal, spirometry and BIPAP for now.  👍

Day 27, ICU

Joni will have a bronchoscope today and they will attempt to discontinue the ventilator.  They decreased vent settings last night and are continuing to keep her very comfortable.  The feeding tube is in place and they are using it for crushed meds. She is already moving all of her limbs really well and still trying to talk over the tube in her throat so we expect she will have a lot to say when it comes out! She may be feisty but she’s also getting plenty of quiet rest. Overall, Joni is progressing perfectly.

Day 26, ICU

Saturday 8:30 AM Joni is awakening on her own, trying to communicate with her hands and trying to talk over the vent tube. She lets us know if she is having pain and getting pain meds every 3-4 hours. Her vital signs are stable, labs look good, & great results all around. They are trying to get a feeding tube in her stomach but there was a problem last night advancing the tube. Overall very happy with her progress. They said yesterday that she will stay intubated for 24-72 hours but we should know more when the Transplant MD stops by hopefully today or tomorrow. Keep you posted with any changes!

Day 25, OR (UPDATED)

THIRD TIMES A CHARM! Turns out, this match was her perfect match. Joni has been in surgery since around midnight.

“New left lung has been placed.  Doctors now working on removal of old right lung.  Proceeding well.  Will provide next update ASAP”. (UPDATED 8am)

“We are starting to close the chest. We should be in the operating room another 1.5 to 2 hours.” (UPDATED 10am)

SHE IS OUT OF SURGERY! Surgeon said her new lungs are “close to pristine” and her body handled surgery well. The next 48 hours are critical as rejection is common but we all know that Joni is a fighter with the love of our support behind her so she can do this! (UPDATED 1pm)

Day 24, ICU (UPDATED)

“Buckle up bitches 🎢 the rollercoaster is taking off ‼️ we got a match🫁”-Joni

Here we go again y’all. By now you know the drill. We are still awaiting a confirmation but she is being prepped for her 12 hour surgery just in case these lungs end up being the perfect match. Mo, Meagan, Pam, Jan, Tony & more have been stopping in constantly these last few days keeping Joni sane. All the comments and support from friends & family are more valued than you can imagine. Stand by for updates!

UPDATE: Sounds like it’s a match! We will update when the surgery is over.

DAY 23, ICU (UPDATED)

Another Match! Still waiting on confirmation but very excited about the possibility of being that much closer to the goal. All the visits, gifts, and encouraging conversations with friends and family have made her strong and ready. IF this donor gets confirmed, she might be going into surgery as early as 4pm! We promise we will keep everybody updated here as much as possible.

UPDATE: it was close but the second match also got rejected. This is still positive motion for Joni, she’s feeling good and ready for the next chance. “Let’s do it again tomorrow” she says.

DAY 22, ICU

Swing and a miss unfortunately. The match wasn't quite right, but we know that better lungs will come soon. Amazing how fast this process has already moved. She says, “This has been exciting and made me feel more optimistic not really disappointed. It feels real now that I will get the transplant 💜love to all”

Day 21, ICU

She got a match today! The lungs are the right size and type. Still waiting for 100% confirmation from the doctors. If there are not any unexpected issues, Joni will be entering the OR possibly as soon as tomorrow morning. Getting to move forward will be as sweet as one of Deb’s oatmeal raisin cookies.

Day 19, ICU

This week has been an emotional rollercoaster for Joni. She feels stuck to a chair and really misses her home. This is a long waiting game but we all know there’s a rainbow on the other side. In the meantime, she’s got her fingers crossed for some “Derby lungs”. She could not be more grateful for all of the love from her support group. Tuesday was so fun with Kathy and Marsha. They brought one of her old favorites, potato soup and a brand new favorite, mango pie. Laughing with friends is always the best medicine. Brian sent puzzles, Gail & Deb brought chili & cookies, Pam brought donuts, Barrett showed up with an arm full of goodies and some beautiful art work came in the mail all the way from Emmy & Ruby in Arizona! Keep the love coming y’all!

Day 14, ICU

“Off antibiotics and back on immunosuppressant medications.

Janice brought me flowers for my last day of work. No live flowers in ICU so she sent this beautiful artificial arrangement. So tickled to have flowers back in my life 🌷🌺🌸

Delicious lasagna delivery from Sarino thanks to Meagan & Carmelo 🍝 and a great visit with my brother Stephen & his fiancé Tammy”

Day 11, ICU

Joni has moved up the list this week so hopefully she will find her perfect match soon! She is loving all the comments on the website from all of you in her support group. She got a special visit and gift today with a sweet note. Thank you everyone for showing your love.

“In the wild, elephants are known as fierce protectors. And when one of their sisters is suffering, they circle up around her. They close in tight, watch guard, and even kick dust around her to mask her vulnerable scent from predators.

And yet, we are the same. This is who we are, and who we are meant to be for each other. Sometimes we’re the ones in the middle. Sometimes we’re the ones kicking up dust with fierce fierce love. But the circle remains.

Thank you all for being my elephant.”

Day 7, ICU

Joni has had a lot of visitors already showing their love.

Her doctor is more determined and positive than ever to get her some new lungs as soon as possible.

Day 3, ICU

Joni is up in a recliner on High Flo O2 25L, she is frustrated that she cannot move freely around her room. Her nurse has to unattach her from the monitor, disconnect her IV and disconnect High Flo O2 and switch to regular O2. She hates asking for help to be able to go to the restroom. No new plans from her transplant MD, stay the course. Even though she is frustrated, her spirits are good and she is focusing on one day at a time🫁