Support and Help for Disabled Covid Nurse Mom

(Photo Christmas last year)

In January 2021, my daughter Katy, a Covid Nurse working on the frontlines of the pandemic, collapsed on the street. Her liver was failing. She was in a coma for over 40 days before she woke up. We found out later she has Wilson's Disease. The Covid that she got when the pandemic first started damaged her liver so badly that her doctors said she would need a new liver.

But this year, doctors told us she is no longer eligible for a liver transplant. Katy has outlasted the worst predictions, but we know that her time left is an unknown. The good news is that she is stable, despite a few infections that sent her to the hospital a few times this year.

January 5th, 2024

I am putting this update on here, to make it easier for readers to know what is happening today. Katy's full story is contained here, which you can read by scrolling. The boys did get bikes for Christmas, in part through donations, but mostly because my brother, her Uncle understood the immediate need. Katy had stomach surgery for adhesions the week leading to Christmas, and they celebrated on the 28th. This has happened during many holidays, but going into to year three, despite hospital visits and increasing weakness, she made it through. S

She is recovering now at home. I am going to keep this short today, but I want to with everyone who has helped and share her story a happy and healthy New Year.

Today I am asking you to help me buy the boys new bikes for Christmas. The boys are in middle school, and were using their bikes to run to the store for her prescriptions, go to school, or after-school events, basically everything, as Bryan does not have a "real" bus service like we have in cities. Now the bikes are broken down to the point of being unfixable, and at any rate too small for them anymore.

Katy cannot drive, and does not own a car. I have been adding my own extra money to her monthly budget, and have only been able to send her a little extra for Christmas, not enough for new bikes.

We have been trying to find a good used bike (or two which would be better) but since Bryan is a college town, used bikes are like gold, and the college students have a monopoly on used ones and trade in rebuilding ones. We have put out an ask but no students have responded.

If you can donate today, we hope to at least get enough for one the boys can share.

I want to thank the donors who helped us last year get the boys a new Xbox, which was all they wanted and they still love it. I also want to thank donors again who helped me get a power chair for my daughter. We are waiting till spring to get it to her, as the weather right now is not good for Katy to be out in it, and at any rate the shipping is really expensive, and a repair needs done. Medicaid still will not give her one under their rules.

So the issue for my family in Texas is still transportation. Will you chip in today and help me get them a new bike or bikes for Christmas? And please share her story and link.

*It is important for donors to know that the money collected from previous generous donors contributed over the past nearly-three years has been spent on the many expenses of Katy's journey from coma, from losing her home, then slowly putting her life and a new apartment back together.

Oct 23, 2023 Update: I have been hesitating for months to publish an update, because it is has been hard to face this bad news.

My daughter Katy's transplant team let us know that she will not be able to get a liver transplant. Her progressive condition has gotten to the point where she is now ineligible for a transplant, and her team has told us not to hope for it.

This is news we have been processing for a while, and it has been really hard to accept. And hard to talk about. With Katy's permission, we slowly shared the news with family and close friends. Katy recently gave me permission to share it here on her GoFundMe.

Just under three years ago her doctor gave her liver a about a year. That she has made it this far is a testament to her strength and determination. But we know the clock is running. She is doing fairly well, and I pray every day for her continued strength and more time.

But the Wilson's Disease has caused muscle wasting, and it has become harder and harder for her to try to push her manual wheelchair by herself. Now, most days, she cannot do it on her own.

So please, donate what you can, if you can, everything helps. Especially sharing her story and the link. We are looking for angels.

In hope, love, and gratitude

Claudia Wold

Katy's Mom

To donate, you can use your debit or credit card, or Venmo: @NurseKatyLiver or CashApp: $RNKatyLiver

Read her story here.

Katy is my daughter, a Registered Nurse who was working the Covid-19 front lines as a traveling ICU nurse since the Covid-19 pandemic began in March 2020. Katy is based in Texas. I live in Seattle. Katy has three children, my grandchildren. Katy is my only child. I am retired and living on a limited income.

I got a call in late January 2021 that my daughter was in a hospital in Waco, unresponsive and on full life support. I took the first flight out and went directly to the hospital, Baylor Scott & White, in Waco, Texas.

 

Katy got sick with Covid-19 on her first Covid assignment, recovered, and went right back to the front lines. After ten months working with critical Covid patients on the front lines, late one night after her shift, she left a restaurant and collapsed on the street.

She lay outside on the ground for over eight hours before a passerby discovered her in the morning. Even though it was January, it was a mild night, or she might have died as she lay on the ground. I still have nightmares about that.

She was taken to the Emergency Room in Baylor Scott & White Hillcrest in Waco, non-responsive, intubated and hypothermic. She was on full life support, fighting for her life. All told, she lay in a coma for 40 days. I spent days and nights by her side, taking hope in every little improvement and praying and crying at each setback.

 

 

What we didn't know until more than a year later was that Katy had an underlying condition -Wilson's Disease -an inability of the liver to process copper. The copper builds in the liver tissues and scars it. This disease often goes on for years, decades even, until it is detected or something impacts the liver to where barely any copper is eliminated.

 

That is what Covid-19 did to her liver. She knew she didn't feel well, but she put it down to the long nursing hours and the stress of caring for critically ill Covid patients and having to call families to say their final goodbyes.

 

Baylor Scott & White in Waco was not equipped for such intense care. Covid was raging all over the US, and ALL the ICU beds in Texas were full. They could not keep her stable. The nursing staff in Waco called hospitals all over Texas every day, sometimes three times a day, looking for a bed for her at a more advanced hospital. They told me Katy needed a liver transplant, but she was far too sick then to survive an emergency transplant.

Palliative Care came in, hinting that I might want to sign a Do Not Resuscitate, a DNR. But I knew my Katy. She is a fighter. Every time in her life that my girl got knocked down, she got up and kept fighting. I knew if she were awake, she would say, "Keep fighting."

My daughter NEVER stopped fighting for her patients.

*For Katy, she can have a partial liver donor. Although her transplant team has turned me down as past the age limit, and her kids are not a blood match, we are still hoping for someone to donate a partial liver. That donor and my Katy both grow a new, healthy liver afterward. The success rate for these operations is high.

Katy graduated from Mary Hardin Baylor School of Nursing in 2018, and I think it was because of this "family connection" they finally got a bed at Baylor Scott & White in Fort Worth. During this time in Baylor at Waco, she was losing ground, in gradual organ decline, on a ventilator, with her kidneys and liver not working and her lungs glassy and wet. She was very unstable, heart racing, her blood pressure frequently dropping, getting blood and tubes everywhere.  

After weeks of tense waiting and her nurses fighting for her, they found a bed. They flew her by helicopter to Baylor Scott & White in Fort Worth within the hour, still on life support. I took the 88-mile trip by Uber to join her.

 

At Baylor All Saints in Fort Worth, her team made gains. They got her kidneys working, pushed toxins through her system with medicine, and kept ventilating her. Finally, the more than sixty pounds of fluid started leaving her tissues. Her blood pressure, heart rate, and respiration all started stabilizing, little by little.

It was not a smooth process. My only daughter coded twice. Coded means she was about to die without intervention.

 

I was just outside her room one afternoon, talking to a social worker about aftercare, when a LOT of nurses and techs poured into her room. The social worker grabbed my hand to keep me still. In 30 seconds, her room looked like this:

 

I didn't take this picture; it is a stock photo. 

 

They could not tell me anything about her brain without her waking up. Palliative Care came in again and again I sent them away. I brought in the hospital pastors, and the nurses and her techs would pray with me the instant I asked. They didn't hesitate at all. Nobody in Texas would pause when I asked them to pray for her. Not Uber drivers, not waiters, not gas station clerks. I told everybody her story and asked them to pray.

But Katy got pneumonia, and the antibiotics were not clearing it. This scared me deeply. My mom was a nurse; my sister was a nurse; Katy is a nurse. I knew that pneumonia could kill her. I went "home" - the Inn I was staying at near the hospital, worrying about it. In the morning, I woke up with an idea.

I met with her infectious disease doctor and suggested she might have an antibiotic-resistant strain of pneumonia. He tested her, and that turned out to be the case. After about a week on different antibiotics, she improved and was on her way to recovery. But I knew that ventilator had to go. Ventilators can cause pneumonia and probably had.

I asked her charge nurse if it was possible to take her off the ventilator and put in a trachea tube. Yes, it was possible, and that horrible mask was finally removed, and they could begin to lower the sedation. I didn't want her getting further complications from being ventilated.

Then came days of suctioning her lungs. Her body was giving up the fluid it had gained, and her lungs bubbled like a teapot for days.

But she wasn't waking up, and she wasn't responding. Her arms, legs, fingers, and head were all limp. 

 

But one of her doctors, the oldest and the most experienced, decided to use a stimulant. I came in one morning to see her head moving side to side. Her eyes wouldn't open, but I could see her trying. She seemed to be turning her head toward my voice and the voices of doctors and nurses. It was hard to tell, as the stimulants caused a side-to-side tic. After five days, I asked them to try taking her off the stimulants. Finally, about five days after starting stimulants, then stopping them, it happened.

She opened her eyes. I took this picture.

 

This day was the happiest day of my life. There she was. 

I called her children. Because of Covid, they had only seen her once, and that once was when she was on full life support, and the doctors doubted she would survive.

I never let the kids see my periods of doubt. I told them there was doubt but to trust their mom to fight for her own life, even in her deep sleep. About three days after she woke up and could focus her eyes a bit, I made a little joke, and she smiled. I had to leave the room to cry.

The day she got annoyed with me was also a happy day for me. I knew her brain was probably going to be okay. She was returning to normal.

She had trouble focusing at first, but soon she could focus her eyes better. Soon she could respond. She couldn't speak for a couple of weeks and used a board with pictures to communicate. Then they placed a speaking tube in her trachea ventilator, and she could whisper. I couldn't know for sure, but her brain seemed like it was okay or would be okay over time.

That turned out to be true, kind of. Katy's ability to handle daily tasks gets worse as her liver worsens.

There is leftover damage from the weeks on the ventilator, and she still has limb neuropathy. Her left arm and left leg were still limp. But little by little, she recovered movement, more over the months after she was fully discharged from hospital care. Her limbs still don't fully move, but they are much better.

She wants to work again. But she is too sick. We need help.

Her kids, my grandkids, are scared but looking forward in faith and hope.

My grandchildren, like me, are military kids. Their dad was in the Army, a veteran of Afghanistan. "Born ready" -resilient and strong despite their fears.

 

This is what Katy looked like going to nursing school in 2018.

 

It had been about three months when Katy was finally discharged from the hospital. She went to a care home, but they took her in without really being able to understand her care needs. There were a couple of emergency visits, and she decided to leave that care home. Care homes were also at capacity. We took what we could get.

 

Finally, in September last year, we moved her into her own apartment for the first time in eight months. The move was hard on her, and we fought to get nursing care and support in her home. She had three emergency visits to the hospital in her new home before we got a liver doctor to oversee her case and to understand what it took to keep her stable enough to avoid emergency visits. This is the same doctor that diagnosed her with Wilson's Disease, the first doctor who even had time, because of Covid, to run the tests.

At last, we knew.

2021 was rough. Katy had over six hospital stays, to flush toxins and clear infections. She had three emergency hospital stays - Halloween, Thanksgiving and Christmas in the hospital. (During Christmas, we all got the Omicron virus, which was filling emergency rooms with elderly and vulnerable patients.) We carried on and did our holidays late. Then in January, moving into 2022, she fell and broke her hip. Back to the Emergency Room. The hip has healed but gives her pain still.

This January, when the calendar takes us to 2023, it will be two years. While we are still praying and waiting for that donor, this is a happy milestone for us. Katy has shown her fighting spirit and resiliency.

For those that have never considered organ donation, please sign up through your driver's license or I.D. You can save a life.

Thank you

The months from the first call to today have been tremendously expensive. Once she couldn't work, everything stopped, her insurance, her income, the ability to predict the future. Getting Medicaid meant she had to spend down the $15,000 she had saved for her and the kids' future.

Every decision, every day, every prayer, everything was a day-to-day challenge, and I want to thank everyone again who has shared her story and donated and every person who has stepped in to help, and those that continue to help.

I cannot say enough about her Baylor Scott & White support. Covid was killing people in ICUs everywhere, and I was well aware that once a patient is on a ventilator, the chances of them living through it go way down. When she woke up, it took her about another five days to start responding to her name and instructions to try to move her hands and legs and arms and feet. I noticed that once she woke up, each time a team came into the room, they seemed to have extra people. Her nurses, the respiratory teams, the doctors, all came in with other people from their teams. 

She became a win for the medical staff that had so many losses over the year. I remember getting a call at midnight from one of her nurses, who hurried to tell me she had good news. Katy was definitely responding to her name. I knew it, but I suspected the five days coming out of the coma discouraged some of her medical team. She was so happy for Katy, she had to call me. God bless her.

 

Approved for transplant, current goal

 

Katy got approved for a liver transplant this April (2022). It has been neary two years since this all started. But we are nearing the end of our journey. Her liver doctor gave a rough estimate of the life of her liver back in September 2021. It was 2022. Nothing like that is set in stone, but we must be prepared to drop everything and go when the time comes. Now, this December, the last month of this year, she has had fewer emergency visits, has gained some strength, and she continues to be the fighter she has always been. But she still needs a new liver, and that liver cannot heal while it continues to build copper.

 

That is our current goal, to raise the money to cover the costs. Flights, lodging for 8 weeks, transportation, meals, and follow-up home help.

The Baylor Liver Transplant Progam success rate is great.

 

We need your support now more than ever. Time is getting short, and the funds are too low. There has been thousands spent to get here, and we need help for this journey of hope and healing.

 

 

Katy saying goodbye to the kids before another deployment after Christmas 2020. You can see in this picture how pale she is; how she is getting sick. 

 

Will you donate today and share her story and her link?