Meet Patti: A Heartwarming Caretaker and Baby Whisperer in need of a Liver Transplant

September 7, 2024

07/06/2024 + 61 days.

It’s been two months since my mom’s liver transplant. Two months of healing and growing.

This whole experience has shown how weird time is. Some parts of this journey feel like parts we’ve walked for so long, while others feel like — how did we get here so fast?

My mom continues to receive feedback that she’s exceeding expectations. Our next doctors appointment with the liver transplant team should be the last biweekly appointment before they will shift to seeing her monthly. She’s continued to receive weekly (sometimes multiple times a week) physical therapy. She’s upgraded to a cane from a walker, and has increased her balance significantly. Prior to transplant, my mom had experienced a lot of muscle wasting (a symptom of liver disease), so gaining her strength back will take time. She sometimes wants things to be happening faster, but that’s when I have to remind her that it’s only been two months. Two months since every phone call was an electric shock to the system wondering if it’s “the call.” Two months since she could barely walk from one side of the house to the other. Two months since she could barely eat and I would have to battle her to have a full meal. It’s only been two months and all those things have changed. It’s only been two months since those things have changed. Time is weird.

I’ve returned to working full time with checking in with her throughout the day. In less than two weeks, Shauna will visit for the first time, and it will be nice to have her here. She was traveling previously and with how immunocompromised my mom has been we wanted to make sure everyone was safe.

We continue to be grateful for all the donations that continue to come in. The lifelong medications my mom needs to be on cost hundreds of dollars a month. I am grateful for her quality of insurance because one of the medications with GoodRX was $1300. My mom’s rate was about $100. I can’t imagine having to make the choice between getting life-saving drugs and bills for people without her quality of insurance. This has been an illuminating experience in many ways.

We continue to find opportunities to laugh and connect. Thank you to everyone who has been on this journey with us and continue to support us near and far.

August 26, 2024

07/06/2024 + 49 days.

It’s been a month since my mom has gotten home. During this time, she’s continued to work on healing and gaining back her strength. She has physical therapy come to the house currently and has been doing her exercises without them as well. Continuing her rock star status, she has taken it upon herself to make herself breakfast daily now and take her morning medicine.

We have enjoyed getting back into a rhythm. Monday mornings are lab days, Wednesdays we see the liver transplant team and physical therapy and other appointments during the week, and weekends are for resting. The liver transplant team are feeling like she’s pretty well managed, so have chosen to see her only biweekly instead. Last Wednesday morning was our first day “off.”

The week before last my cousin visited which allowed me to return to work with the ease of knowing she was monitored and loved. Last week was my first week fully working and caretaking alone. There are some days that I handle caretaking and the overwhelm better than others, and I’m thankful for my mom’s patience as I work to juggle it all.

It’s still a delight to have her back and to get back into our times of connection. To think that in five months we went from finding out she needed a transplant to being one month post-rehab is incredible. I was describing to a client the experience and named it as “world-blowing.” As opposed to earth-shattering when everything feels like it crumbles, I feel like my whole world got blown in a whole new direction incredibly quickly. I’m still gaining my grounding. We both are in different ways.

Thank you for continuing to donate! It’s helping so much during this time.

August 7, 2024

07/06/2024 + 30 days.

Today is the one month anniversary of my mom’s liver transplant.

I can still clearly remember the night before waiting to find out whether or not the liver was viable, the outpouring of gratitude I felt towards the medical staff, and the relief to know that she really had gotten a liver.

The reality of this reality is still being digested by both myself and my mom. We still feel activated every time her phone rings and then remember that we are on the other side. It’s going to take time to really feel that this is true.

Since my mom has been home, we’ve got a routine in the morning of me cooking her breakfast for her medicine, then we watch the Olympics, and I cook the other meals throughout the day. She continues to do some of her physical therapy at home and so far we have had a nurse, occupational therapist, and physical therapist come to the home. We have all agreed that physical therapy is the priority and she will have in home and virtual physical therapy weekly.

Each Wednesday, we go back to meet with the liver transplant team during the first month for them to review how she is doing and to make any medication changes necessary. Last week, the surgeon said that her wound looks like it is healing well and there are no signs of infection. He also gave me permission to drive to the store if needed, as I was unsure if I was allowed to leave my mom alone at all. I’ve only done this once so far, but it’s nice to have the option. We will see if she truly needs three months of 24/7 care. My mom has been healing much faster than anyone thought she would, so I believe they overestimated the care she would need and underestimated her strength.

Following this month, my mom will likely be seen biweekly for some time before they space out her appointments more. Her liver transplant coordinator will continue to follow her for five years.

While she’s been home, I’ve had some meetings and seen a couple of clients. I will return to fully working and balancing caretaking next week, while my cousin comes to visit from New York. I am so incredibly grateful he will be coming. He has such a sweet and gentle personality and I think it will be a wonderful addition to our space for the week.

Yesterday, I submitted fund requests for about $2,500 worth of bills from Help Hope Live. Before funds are dispersed, Help Hope Live verifies the need and validity of the usage of funds. I’m so incredibly grateful for each person that has donated to having made this time a lot easier for us.

These last couple of days, my mom and I have been reflecting on all this month has held and how far she has come. It’s a surreal experience.

Tonight, we went for a drive to watch the sunset while listening to hip hop, a classic moment for us. It felt nice to get out and feel the fresh air.

There isn’t a day in this month that has passed that I haven’t found myself with tears in my eyes thinking and feeling how grateful I am that my mom will be here for a long time. Earlier this year, it was not known if she would make it more than a year according to the doctors. Now she will. It’s indescribable what that shift means and what it feels like.

Thank you for being here with us on this journey.

July 26, 2024

07/06/2024 + 19 days.

My mom is home! It feels even more wonderful than I knew it would to have her back.

I’m grateful to say that the team of home renovators and cleaners really worked with me to have everything done for my mom’s arrival home.

After her discharge, we met with her post-liver transplant coordinator, Kaitlyn. That meeting was such a relief! We both found out that the post-transplant side is a lot more chill than the pre-transplant side. We are still adjusting to this new reality that my mom has the ability to live. Not only physically but emotionally, mentally, and spiritually. She no longer has dietary restrictions, but the team wants her to just find balance. Once she has the ability to move independently safely and with ease and can do the daily activities on her own, she may no longer need supervisory care. That means the 24/7 care may not be necessary for the whole 3 months.

Dr. Soma, the lead surgeon, for her transplant also came to the appointment. He checked her wound and said that things are healing well. He has such a kind and gentle spirit, which only adds to the reasons I love him. Each time I see him my heart fills with glee. He’s a big part of why I get to have my mom. I don’t think this gratitude will ever go away.

I’m grateful to say my mom is a lot stronger physically than I knew. Getting up and down is still somewhat challenging, but she can stand for long periods of time and move with strength and balance with her walker. She continues to say she feels better than when she went in.

We are going to take some time now to reconnect and adapt to the new normal. I’m going to be updating less as I start to integrate this new reality that my body can soften, my heart can rest, and my spirit can remember ease.

Thank you for everyone who continues to support us.

July 25, 2024

07/06/2024 + 18 days.

Big news.

My mom is being discharged from physical rehabilitation tomorrow, earlier than we anticipated. She was hoping to stay longer to build her strength more, but they think she has progressed enough to be going home.

I can hardly believe that her transplant was less than three weeks ago. She will come home with some OT, PT and nursing support occasionally.

I got to visit her today and observe a PT session. She was able to walk quite a bit farther than I knew she could with a rollator and went up and down steps with a cane, instead of holding on to rails. This was to practice for home since there are not rails on the steps there.

It was helpful for me to see her progress and steadiness. Before the surgery, she was more unbalanced and wobbly. I was really scared she was still going to return that way, but my mom tells me that she feels more balanced than she has in a long time. The PT seemed to be encouraged by her progress as well. Although, they were also surprised by the quick notice of her going home.

I am still busy getting the house ready for her arrival and hope to be able to sleep well tonight before she returns. I have people coming at 8:30AM to clean and finish up home renovations.

At 12pm tomorrow, my mom will be officially discharged and then we will meet with the post-liver transplant coordinator to discuss what is to be expected.

Donations are greatly appreciated. My mom’s medications are hundreds of dollars with insurance. Any contribution matters.

Thank you so much for being with us on this journey.

July 24, 2024

07/06/2024 + 17 days.

The work continued today at home preparing the space for my mom’s return.

My mom continues to work hard in PT and OT, she advanced to having the opportunity to move around her space without supervision for the first time today with her walker. She was really excited about this opportunity.

I surprised my mom after a long day at work with a visit. After the day of heavy emotions, I just wanted to see my mom at the end of the day.

July 23, 2024

07/06/2024 + 16 days.

Today, I was very busy with organizing preparations for my mom’s return home. A lot was done today… carpet cleaning, fresh air conditioning air filters, and continued home renovations. Then, I went to work until later this evening. I wasn’t able to visit her today. The hospital had visiting hours 24/7, but the rehab ends at 9pm, so it makes it difficult to visit after work.

She continues to do so well! We are very thankful for all of her progress. She did a lot of OT and PT today and had 48 staples removed from her surgery. She said that now it is just her and her scar! Her scar has already begun healing beautifully.

She spent her day in between movement listening to a meditative music station. She said many of the nurses who have come in and have commented on her peaceful music station and that they hadn’t seen it before. She said she loves it for helping with her calm and positive energy. One of them said that it might be helpful for some of her patients who have high anxiety. She said she loves how her choices may help others, too.

She continues to embrace her rock star status.

Thank you to all of you who continued to donate. We have some additional expenses preparing the house, so all of your help is greatly appreciated.

July 22, 2024

07/06/2024 + 15 days.

Today, I did some more preparing of the home (laundry, cleaning, etc) before coming to spend some time with my mom this evening. I brought her some more clothes and some love. We both really enjoyed seeing each other.

She did three hours of physical therapy and occupational therapy today. Some days, she feels like she is getting stronger, but some days, like today, she feels weaker. She did do more steps than ever today. Hooray!

Overall, we are so thankful for how well she’s doing. She needs to gain some more strength to return home comfortably, and each day is a new day.

July 21, 2024

07/06/2024 + 14 days.

It’s been two weeks of my mom having her new liver.

Two weeks of her healing.

Two weeks of her appetite returning.

Two weeks of her strength returning.

Two weeks of her brain getting clearer.

Two weeks of her peace expanding.

Two weeks of her joy expanding.

Two weeks of her gratitude expanding.

Two weeks more of my mom.

I am still beyond grateful that I get to have a long and joyous future with my mom.

To celebrate her progress (and also because that’s how they do it), my mom had a day of rest today.

We talked via FaceTime today as we made some of the final arrangements for the home. If she continues to strengthen and heal the way she has been, it’s likely she will be home next weekend.

Then it’s three months/thirteen weeks/92 days of 24/7 care. One day at a time.

July 20, 2024

07/06/2024 + 13 days.

Today was another day of working to prepare the home for my mom’s return. I found a cleaning company that will be coming weekly to make sure her space is clean and fresh for her compromised immune system. It took time to find the right fit for this role, but I found myself tearing up today, when I felt like I met a teammate in this journey rather than just being a customer.

My sister had organized some medical equipment to be delivered, so we got a bar for my mom’s bed and a shower bench for her to support her when she returns home. I will be having shower grab bars installed next week as well.

I then spent a few hours visiting with my mom. We talked and laughed and I got to see her eat her dinner. She finally is enjoying food again and it was so fun to see her “mmm-ing” and going back for more. Seeing her eat again really showed me that this is real - my mom is getting better.

I’m constantly moving, thinking, planning, organizing, and working right now that it’s hard to slow down enough to really feel the reality of it all. But there are moments where it hits me how things have changed and healing is truly happening. At remarkable speed.

I think my mom’s favorite part of today was the addition to the signs on her walls. The signs say “You are a rockstar and so very, very loved.” “Gratitude, peace, and love surround you and are within you.” “You have a beautiful and pristine liver.” “Never forget how far you’ve come (written by a staff member at the rehab hospital).”

July 19, 2024

07/06/2024 + 12 days.

Today, I spoke to the social worker about attending Family Training where the physical therapist and occupational therapist will train me on how to best support my mom when she gets discharged.

My mom continues to do well in rehab. She continues to share how amazed everyone is with how well she is doing. Today during physical therapy she said she walked a lot and went up and down some steps. Afterwards, she took a nap.

My mom also arranged with the case worker to get some in-home nursing arranged following her discharge as well as the medical equipment she will need. My sister had done a lot of the work on the backend to make sure insurance covered this so we could have more assistance in the home.

We have been busy with lots of preparations for when she gets home. We want to make sure everything is ready for her whenever she comes home, since her immune system is highly compromised for the next six months.

I was not able to visit my mom today due to working ten hours, but I was grateful to get to feel her spirit through the phone. She is such a light in this world.

Her internal strength and attitude are doing a lot to help her heal.

July 18, 2024

07/06/2024 + 11 days.

My mom said today that the physical therapist and occupational therapist were impressed by how well she is doing after a major surgery. She also has been grateful to have her appetite back.

Today, I spent the day working and was able to visit my mom after work. My sister and I had a phone call while with my mom where we worked together to find ways to help support her once she leaves the hospital. My mom is highly immunocompromised these next few months and so making sure she is safe and well cared for is a priority.

The main risks now are rejection and infection.

We are working on making sure the home is up the standards needed for her to thrive with healing which takes some funding, which is one of the many reasons we are so grateful for the donations. That and living expenses are the main focuses of the fundraising campaign.

Overall, when I asked my mom what she wanted people to know about her day, she answered that she is still feeling very hopeful for the future.

July 17, 2024

07/06/2024 + 10 days.

I started the day attending a Post-Liver Transplant Caregiver meeting where I learned about all of the necessary and upcoming changes that will be occurring as well as frequency of appointments, labs, and medications. It was in this meeting that I learned my mom no longer has a gallbladder, which I also relayed to her later. Apparently this is standard, but we both missed that part along the way.

When I visited my mom at rehab, she walked with a walker today, and stood for a moment on her own to wash her hands. The joy she felt to be able to balance and stand on her strong legs was beautiful to witness.

After I left, she had physical therapy. She told me they told her they were going to wear her out today, and she said they did.

Today was an emotion-filled day. There’s a lot of overwhelm with all the things, layers, and people I’m managing. I asked some dear friends to meet for dinner following work to feel held in some love, so that was a nice moment of today.

July 16, 2024

07/06/2024 + 9 days.

Today was an eventful day. My mom left the medical hospital and moved to the rehab hospital. They did some assessments today and will do more tomorrow. They are going to help her build her strength so that she can return home and be able to do more things herself.

The transition at first was hard for my mom, she had expected more of an ease in, but they told her about the transfer early this morning. I quickly brought her clothes before heading off to work.

After work, I was able to visit my mom in her new space. I will say this space leaves much to be desired. Hopefully, I’ll be able to help her give her space some joy soon.

It’s unknown how long she’ll be there, as is with much of this journey, but I’m glad she’s there. We both really wanted to make sure she was physically strong enough to come home before she did. As the main caregiver, and a single person, I can’t be responsible for picking her up or doing any weight bearing.

Time for her mental and emotional strength to get its match in the physical.

July 14, 2024

07/06/2024 + 8 days.

My mom woke up this morning with a shining heart feeling like all the heavy emotions she had been carrying for years had left with her liver and now she was filled with gratitude and love.

She spent the day sitting and feeling loved. She moved the farthest she has since her transplant going down the hall with her walker to see the paintings of horses on the walls near by. My mom has always been very connected to horses and when I saw them on the wall when I went to visit her the other night, I was very moved.

I spent the day managing things at the home. My aunt came to help continue to prepare for my mom’s return home. My mom is also getting a whole house water filtration system installed, so I was coordinating with the plumber how things were going. The fresh water will help make sure that her new pristine and beautiful liver won’t have to work harder than it needs to.

It was the first day since her transplant that we only FaceTimed. It may be like that some days as I continue to work and prepare the home.

This is such a time of adjustment and transition. I know it will continue to be that way for a while, but I also look forward to there being some semblance of rhythm. If I listen hard enough, I know I can find it.

July 14, 2024

07/06/2024 + 7 days.

One week with her new liver.

The day started with the reminder that sometimes things go backwards before they go forwards. My mom woke up really weak this morning. She said towards the beginning of the day she had a hard time standing. After doing some exercises, she said she was able to feel more of her strength throughout the day.

I spent the day with dear friends who came to help me get my mom’s room and bathroom ready for her return home. I feel so grateful to have created relationships where I can ask for this kind of help and support.

I then came to visit my mom. She told me that she didn’t realize how much she loves seeing me until I arrive. I love spending time with her. We played cards and watched a movie.

I’m excited for her to continue her journey. She keeps talking about a “new lease on life” but I think of it more as a continuation of the amazing life she’s had and opening and expanding the directions it can go.

It’s been a week and it still is taking some adjusting to the reality that I’ll get to have my mom for many more weeks, months, and years. I was really scared, and I don’t need to be anymore.

July 13, 2024

07/06/2024 + 6 days.

Almost a week since my mom’s transplant she continues to do really well.

It was confirmed today that she will be headed to residential physical rehab sometime next week. Her body has gone through a lot and the main need now is feeling strong. She often gets lightheaded when moving now, which the doctors think is normal and will get better with time and movement.

It was fun today when I visited that I got to order her dinner and breakfast for her. She finally gets real food! And she’s enjoying eating! Prior to her transplant, my mom lost a lot of weight and became pretty malnourished due to the symptoms of her liver disease. It became a source of stress in our relationship trying to help her maintain nourishment. It was such a joy to see her actively eating today without prompting.

My mom was full of joy today talking about her cute new scar and the excitement she has to keep living her life.

July 12, 2024

07/06/2024 + 5 days.

Today was a great day! My mom got moved out of the ICU and onto the main floor. She got her referral for Residential Physical Rehab which is what we were hoping for.

My sister and aunt worked hard today to help set in place a plan to make sure the home is sanitized for my mom’s arrival home. This will make sure her compromised immune system will be able to breathe in the love and nothing more.

My mom’s spirit continues to be extraordinary. Some of the texts I received today include:

“I love each of you very much and Thank You again for all of the love and care! You mean so much to me.”

“Thank you from my overflowing heart of love and new happy liver. All of your help  and love means so much to me.”

“Yay! I’m so happy and thankful for everything!”

“My heart is so filled with love.”

“I can hardly believe how loved and happy I feel! What a wonderful time to soak it in!”

“My life is forever changed in a wonderful way!”

We continue to take one day at a time. I worked 10 hours today and then came to be with my mom. I wanted to take a moment to be with her in her gratitude-filled space.

July 11, 2024

07/06/2024 + 4 days.

Things for my mom seem to be stabilizing some. The doctors continue to be encouraged by her progress.

Today, she once again sat up for several hours and took some steps with some breaks to sit.

There are talks of moving her out of ICU soon and to the main floor. It’s hard to believe it’s been so short since her transplant given she’s back to singing and laughing.

One of the doctors said that he believes a lot of her progress was due to my support. That was very kind and a nice shift from a previous interaction we had had.

My favorite part of today was watching my mom’s expressions when she took her medicine. Even though she said this particular medicine didn’t taste very bad, the psychological impact made her face do all sorts of things. I couldn’t stop laughing. It’s the little things.

July 10, 2024

07/06/2024 + 3 days.

Today is a reminder that healing is not linear.

As a therapist, I know this well.

My mom continues to heal but there are some difficulties within her body. To honor her, I’m going to not go into extreme detail, but the nurses and doctors are working together to help her body adjust to the new liver.

She continues to receive breathing treatments, PT/OT, and other treatments to help her body flow and heal.

Today, she sat in a chair for several hours to allow her lungs to expand and help her body strengthen.

It’s been challenging for me to have to continue to work when I just want to be with my mom, especially as I see her struggle at times. Today after work, I let Ellie out and then came right back to be with her. I missed her.

When I asked her what her favorite part of today was, she said the surprise visit from me this evening and the videos she received from loved little ones.

July 9, 2024

07/06/2024 + 2 days.

When I arrived this morning, my mom let me know that her nighttime nurse had recognized she had been in more pain than she realized due to her high pain tolerance. He started giving her more pain medicine as her blood pressure kept raising.

My mom then started her day getting the second part of her surgery completed. This is when the doctors go in to check on the liver and then close her completely. The surgeon came out, Dr. Zarrinpar, and told me that everything looks good and the liver looks good.

After the surgery, the pain started to intensify and she was placed on more pain medicine. This was the first time in this process that I really saw my mom in pain.

Throughout the day, her pain eased some and seemed to be manageable by the time I had to leave for work.

I was glad I could be there today to be an advocate for her. There’s a lot of complicated things going on in the hospital with different voices and opinions. I continue to notice and acknowledge the people working there that still see my mom as human. It’s painful to witness this is not always the case, but the majority of the time it is, fortunately.

When I spoke to her tonight, she seemed to still be in good spirits yet is still in some pain.

The highlight of the day for her was ice chips. She savored each time she got one and when she eventually was moved to a clear liquid diet and was allowed to have as many as she wanted the celebration commenced.

July 8, 2024

07/06/2024. + 1 day.

My mom continues to do amazingly.

Yesterday after my post, she had her breathing tube and feeding tube removed. She also started singing and talking. This is all under 6 hours after her transplant.

They have been incredibly encouraged by how well she is adapting to her new liver.

Today, I was able to be there for the rounds and the critical care team said things were going well and blood was moving to the liver (they said this in much more complicated terms but that was what I gathered after asking them to break down things again and again). They said they are going to recheck her ultrasound after the second part of her surgery.

Then, I saw Dr. Soma this morning and he was big smiles with how well my mom is doing. The timeline of her coming home has condensed and they believe she may be discharged from the hospital at the end of next week. He hopes to be able to do the finalization of the surgery tomorrow.

She was joined by PT/OT and was able to sit up, tap her toes, and stand up for a moment with support. While standing, she took two small steps to the left.

I spoke with her team today about making sure she goes to physical rehab following her time in the hospital. My mom entered into this process physically weak, and I want to make sure her strong spirit has a strong body to hold her. Because of her strong spirit, sometimes doctors can think she’s physically more capable than she is, so I wanted to make sure to be clear on her needs. I was grateful to be met with a receptive team.

I think it’s important to note that all of this incredible progress has been made with hardly any pain medicine. She only got a little bit before moving some with PT/OT. Other than that, she says the pain has been manageable mostly on her own.

Tonight, she has been coughing some to clear out her lungs after having the breathing tube, all normal, and to be expected but it is slightly painful and uncomfortable, so the nurse and I encouraged her to have a little pain medicine to make her body comfortable to heal.

She continues to talk and smile, bringing joy to the people she sees.

Today, she told me “you’re going to have me for a lot more time, so you don’t need to worry about that anymore.” I do not know if there’s anything more heart-filling and soul lifting that I could’ve heard today.

July 6, 2024

07/06/2024.

The date of my mother’s liver transplant.

Early yesterday morning, at around 8am, my mom received a call that a liver was potentially available for her and for us to arrive at the hospital at 2pm. We arrived at 1:59pm and were brought back to pre-op. We found out there was a potential donor that her surgery was scheduled for midnight. They warned us that sometimes people go through the prep process only to need to go home because the liver isn’t a viable option. After 11 and a half hours, we found out that the liver was a good candidate and my mom would be receiving a liver. Two hours later, she was brought back to the operating room with the #1 Liver Transplant Team in the US. I went home to rest while she got her procedure. At 4:43am, I received a call from Travis, the RN, that my mom’s surgery had began, hanging up at 4:44am. At 5:54am, I received a call from Travis that the new liver was going in right then, hanging up again at 5:55am. At around 7:20am, I received a call from Dr. De Faria that my mom’s surgery was a success. He said the new liver was connected and working. He told me it was a “beautiful liver” and that he felt “good” about the surgery. He let me know that Dr. Soma was finishing up the surgery. I feel immense gratitude to Dr. Soma, Dr. De Faria, and Travis from the liver transplant team; Dr. Lopez and his nurse from anesthesiology; and all the other doctors, nurses, and medical staff present for her.

My mom is now resting in ICU. She has already opened her eyes, wiggled her toes, squeezed hands, and nodded at me.

Dr. Soma just came in and said that the liver that they got was in “pristine” condition and they expect another 30 years of life for my mom.

In a couple of days, they will once again go in and make sure everything is healing well. Then my mom will remain in recovery until it’s time to come home.

This will be a lifelong journey for her but the first three months will require the most care.

I’ve never known gratitude like this. To the donor and her family, I thank them for their generosity. To the medical staff, I thank them for their care. To my loved ones, I thank them for being there for me yesterday, today, and tomorrow.

May we continue to feel peace and move through this time with ease. May the ones that are grieving feel the outpouring of love from our hearts. May each day become a little brighter as my mom’s life continues to bloom.