Stephanie’s Story

Site created on September 9, 2023

As most of you know Stephanie has had heart issues for many years. The root cause of her heart issues is from the chemo drug they used on her as a child when she had cancer. Heart problems is a known side effect of that drug. In fact, they still use the same drug today and haven't found anything better for some types of childhood cancer. Over the years she has had ups and downs, she was diagnosed with congestive heart failure in 2010 here at the Mayo Clinic. We do normal check-ups here anywhere from 1-3 times a year. In March during her normal check-up, we were surprised when her Dr mentioned that they wanted to re-evaluate her for a heart transplant again. ( 2 other times she was evaluated and we were told she did not qualify). But being evaluated again was a big shock to us because from what she was feeling she was doing really well. However, the Dr looked at some other numbers that we haven't been monitoring and said they have been going downhill. As most of you know we went through that process again and she was listed as a Status 6 in early August. 

Friday, September 1st was a nice cool cloudy day in Las Vegas so Stephanie and went for a bike ride. We had recently purchased a used E-bike from a friend and that was Stephanie's first time to ride it as I rode my mountain bike. We did about 7 miles that day and all seemed fine. Later Steph mentioned that she felt some heart palpitations, which isn't unusual. However, they normally go away fairly quickly but this time they hadn't stopped. She used her watch to do an EKG and it showed A Fib. With that information, we contacted the Mayo Clinic and they advised her to go somewhere and get that checked out. So we slowly got ready, packed a bag and went to a small ER by the house with the thought that they would just take a real EKG and some blood work. Once there they didn't like what they saw and we were able to get them to call the Mayo Dr. After the Drs talked they decided she should be admitted. So they took her via ambulance to the hospital where her local Cardiologist has privileges. Without boring you with details they did not really seem to know how to treat a heart failure patient and did a few things that were just making her feel worse. They didn't seem to listen to us about her history, why she was on certain drugs, and why her blood pressure was so low (normal for her). They also did not consult with Mayo as we had asked them to. 

Eventually, Stephanie felt bad enough in that hospital that about midnight on Labor Day morning, we called the Emergency number to talk to a Mayo Dr. He didn't like what he was hearing so he put in a transfer request for them to bring her down to Phoenix so they could care for her. Once here they still could not get her out of A Fib, and saw other signs that things were bad. Eventually, they decided she needed to be on a manual pump to help her heart (balloon pump), and she would be forced to lay flat in bed and remain in the ICU until a new heart was found for her and they could give her a heart transplant.



Stephanie remains in good spirits when the pain and nausea are gone. So now we will wait until God provides a heart. For those of you who are interested please follow our journey here. I will try and post daily updates or more than daily if important things happen

Newest Update

Journal entry by Justin Jordan

Thank you all for listening and tuning in as we've reached episode 55. Let's take a moment to reflect on this journey and acknowledge what God has done for Stephanie throughout. Also stay tuned in after the update for some bonus information.

September 1st: Stephanie felt some arrhythmias in her heart, prompting a visit to the ER and subsequent hospital admission.

September 5th: We were transferred from the Las Vegas hospital to Mayo Clinic in Phoenix.

September 10th: Stephanie had the balloon pump installed and was required to remain in bed with her leg straight until she received a new heart.

September 17th: Stephanie was moved to status 1 on the heart transplant list, indicating the severity of her condition. Despite outward appearances, her situation was far more critical than we realized. Status 1 implies a limited time to live without intervention.

September 17th #2: Shortly after Stephanie was listed as status 1, we received word that a heart was available for her. Our focus shifted to the upcoming surgery, and fervent prayers were offered for its success, including concerns about post-surgery pain.

September 18th: The big day arrived, and Stephanie underwent surgery at Mayo Clinic, receiving a new heart through the skilled hands of both medical professionals and the grace of God.

September 18th #2: Late that night or early the next day, Debi and I visited Stephanie in her room, learning that the procedure had gone well. Seeing her surrounded by wires, tubes, and monitors was difficult, and as Debi went home to rest I remained by her side through the night so that I would be next to her when she awoke.

September 19th-21: Stephanie's recovery progressed rapidly initially, but setbacks occurred, necessitating adjustments to her medication regimen and additional rest.

September 22nd-October 4th: This period was marked by both progress and setbacks, with challenges such as prolonged chest tube placement and difficulty eating. However, steady progress was evident, thanks to God's provision.

October 5th: Stephanie's last chest tube was removed, a significant milestone that brought her immense relief and gratitude.

October 7th: The day we had eagerly awaited arrived, and Stephanie was discharged from the hospital, moving into a rental home with the assistance of generous donations from you all, thank you!s

October 8th-December 16th: This period was filled with appointments, adjustments to caregiving routines, and increasing independence for Stephanie. Celebrating our 40th birthdays was a particularly poignant moment, considering the uncertainty we had faced.

Since then, we've made regular trips to Phoenix for appointments, grateful for the support of friends and the progress Stephanie has made.

Our most recent appointment was on February 22nd, and while our plans to socialize were thwarted by the illness of our friends we decided last minute to head home for the weekend.  We remain optimistic and grateful for the journey we've undertaken together.

We'll provide updates on Stephanie's progress soon, but for now, know that we are doing well and deeply appreciate each and every one of you.

Praise:

  • We are grateful for all that has transpired and for God's guidance throughout.
  • Reflecting on Stephanie's remarkably low post-surgery pain, we recognize God's hand in her healing journey and they way he answered our specific prayers.

Prayer Request:

  • We ask for prayers regarding Stephanie's hair loss, praying for restoration and minimal noticeable change.

Thank you for your continued support and prayers.

 

Before we conclude, I thought some of you might appreciate the following insight.

The passage you've just read was initially drafted by me. However, I decided to experiment with an AI program to refine my post. I copied and pasted my rough draft into the AI tool and requested it to polish the text. Remarkably, the AI made significant improvements with only two minor adjustments from my end. This striking difference highlights the capabilities of AI in enhancing written content.

You can read the original rough draft below for comparisons if you would like.

 

Well, we have reached episode 55 and I wanted to say thank you all for "listening" and tuning in. Why don't we take some time to reflect back on this journey and recall what God has done for Stephanie through this journey?

September 1st- Stephanie felt some arrhythmias in her heart we went to the ER to get it checked out and she was admitted to the hospital.

September 5th- We were transferred from the Las Vegas hospital to Mayo Clinic in PHX

September 10th- Stephanie had the balloon pump installed and was required to stay in bed with her leg straight until she got a new heart.

September 17th- Stephanie was moved to status 1 on the heart transplant list. This alone should tell us how serious her condition was! She seemed to be doing "good" from what we could see in the way she looked and interacted with us. But the fact is that things were much worse than I realized. Status 1 means that without intervention there isn't long to live on your native heart. She was much closer to death than we realized.

September 17th- #2- Shortly after I published she was status 1 we got word that God had a heart for her. Our focus now moved to the surgery. Steph, Debi and I prayed fervently for her surgery, that it would go well, and that her body would accept the heart, and what was my biggest concern was the pain that she would experience after surgery from having her chest cut open and forced apart.

September 18th- THE BIG DAY. Stephanie went into surgery and through the hands of God and the medical team at Mayo she was given a new heart. This means the old heart she had lived with just shy of 39 years was removed from her body, and in it's place came a heart from another human that had lost their life.

September 18th #2- Late in the night or early the next day Debi and I were able to see Stephanie in her room. We were told that the procedure went very well. Seeing Stephanie with all the wires, tubes, medicines, monitors, intubation etc was hard! Debi had to take a break as I remained overnight next to her bed holding her hand.

September 19th-21- Stephanies recovery was moving RAPIDLY. She was up walking, playing cards, visiting, washing her face etc. She was setting speed records for recovery. Then she took several steps back. The honeymoon was over. A few problems popped up and she was told to rest and recover don't push it. Medications needed to be changed to get the heart back in it's groove and get the extra fluid off her heart.

Setember 22nd-October 4th- This time period was filled with a lot of small wins and getting things disconnected from her. But there was also a lot of set backs as well. Chest tubes staying in longer than anyone thought, Steph not being able to eat or swallow, a very swollen throat, sickness, gagging, weakness but through all that even with the set backs God always provided steady progress. 

October 5th- Stephanie's last chest tube was removed! This was such a relief it brought her to tears when the medical team mentioned it. She felt so much better getting that removed and gaining some additional freedom.

October 7th- The day we had all been praying for, Stephanie was released from the hospital!! We then moved her into or rental that a lot of you helped pay for with your donations, THANK YOU ALL!

October 8th- December 16th- Lots of appointments, learning to be a caregiver at home and change bandages and dressings, help with medications etc. As the days went by she was more independent each day. We celebrated our 40th birthdays. Stephanie is proud of her age as she wasn't sure she would make it to 40. Then on the 16th of December we moved back to our home in Las Vegas. Man it felt good to be home!

Since then we have driven to PHX about 2 times a month for appointments. Some trips we were able to get with friends down there and others were just quick turnarounds. 

Our last appointment was Feb 22nd and we had planned to stay that weekend to hang out with friends but unfortunately, all the people we planned to meet with had someone in their household that was sick or felt like they were coming down with something. So last minute we decided to just come home after our last appointment on Friday. Our next trip down will be March 22nd.

Well that is it for today's episode We will try to get out a post soon about her last check up but I think this one is long enough. Just know that we are doing well and we are thankful for each and everyone of you!

Praise 
For all that has happened and that God has brought us though all of this.

I am ashamed to admit that it took me a few months to realize how GOD really answered our prayers. We specifically prayed about the pain Steph would be in after surgery as that was my/our biggest fear. Looking back on it now GOD delivered!! She only rarely felt pain from her chest being split open. When talking to the DRs they say that is unheard of. So that leaves GOD as the only explanation. Praise Him for this answer to prayer!

That life is pretty much back to normal.

Pray
Her hair loss continues pray that God will allow her body to stop loosing hair and start to grow her thick head of hair back. (Very few people would notice the difference in her hair and I pray it stays that way)

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