Tag: palliative care

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Endings

Hannah

After my current palliative care provider announced that they are dropping me as a patient I embarked on a search to find another group that would manage all the things that they had been for me. After many late night hours searching for providers, several interviews with prospects, countless phone calls, an amazing patient advocate, and a whole lot of rejection, I am left without the care that has carried me through these past few years. Palliative care is changing; they only want cancer patients because the reimbursement is better. They were managing my pain, my mental health, my nausea, and my breathing, and I do not know what or who is going to fill those holes.

Next I got a letter from my physical therapy company stating that they are shutting down at the end of this month. For three years I have had the most compassionate, talented physical therapist coming to the house twice a week to help calm my spastic muscles and loosen contractures through massage, stretching, and myofascial release. It has provided so much pain relief.

Two weeks ago I called to reorder my infusion supplies and had to leave a message. Nobody called me back, so I called them again this week. The voice at the other end of the phone said, “well it looks like it’s been too long since your last order, so we discharged you; you’ll have to ask your doctor for new orders.” The same doctor who will no longer see me.

I do not understand why everything that has been essential to my health is falling apart. We uprooted ourselves from Colorado to come here for better healthcare for me. Now all at once that is crumbling, and I am not sure what the next step is. I do not know if this is God saying He has something else for me, or it is time to stop fighting.

I am weary. I am frustrated, and I am confused. I am exhausted from trying to advocate for myself for all the things. I wrote down a list of each of my doctors, most of them specialists who only manage one particular issue like respiratory or GI. There were fifteen of them. I know for certain I do not have the strength to run around to fifteen different doctors every month to get my needs met.

This feels like standing in the middle of a tightrope where neither end can be seen. Unsure of whether to go backward or inch forward, not knowing what waits at the other side. Fortunately I know where to look; up. No matter how shaky my situation seems, or how far the drop is, I can count on my Heavenly Father to reach down and steady me with His tender assurance. He is the one who sees the bigger picture.

I greatly appreciate your prayers in these days ahead as we try to figure out the next steps. I know God will provide as He sees fit, and I am trying to focus on the quality of my moments with each of the people dear to my heart, and not stress about the rest. Easier said than done.

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Jesus Take the Wheel

Hannah

For the past four years, except for my time in hospice, I have been receiving treatment from a palliative care group here in Ohio. Palliative care is similar to hospice in that it is primarily focused on comfort care, but in palliative care many patients still seek curative treatments, whereas hospice centers on end of life. Prior to being in palliative care I had several different specialists managing different aspects of my disease, which meant frequent appointments with little collaboration between specialties, and it drained me to my core. Palliative care was a very welcomed change of pace with the benefit of multiple aspects of my care being managed under one roof.

The first time I met with one of the doctors it was unlike any experience I had before. He asked me what my goals were, how I was feeling, what I wanted to do. I had never felt so seen and understood by a doctor. My health improved in their care, and they also asked me to be one of the patients representing them in their new marketing. They made a commercial with my whole family, and I appeared in their printed and online advertising.

This palliative care group gave me hope for leading as normal a life as possible, and were very responsive to any needs that I had come up. Then slowly over the months I felt less and less listened to. It was harder to get an appointment or to get a call back if something came up. I assumed they must have an influx of patients from all their marketing, and just had less resources to go around.

Near the end of 2022 I was told by one of my palliative care physicians that they were closing at the end of the year and wanted to give me time to find a different care provider. We began the search looking for another group that would focus on comfort and manage as many aspects of my care as possible in one place. The first group we liked came out and did an assessment and shared with me the things they could provide for me. My follow up appointment was scheduled, and I was feeling really confident about the future with this new healthcare team.

Suddenly a few days later I got a call that this group could not take me on because the doctor was not comfortable managing the medications I am on. This seemed a little strange for a palliative/hospice organization, but I took their answer and started looking for a new group.

A Nurse Practitioner from the new palliative care group came out and did a similar assessment. She apologized for what happened with my current provider, and said something about rules changing about medications and how she hopes their medical director will be willing to look past how I look on paper and hear what she has learned from being with me in person. That’s when we learned my current palliative group is not closing like they told me; they’ve decided to change what type of patients they see. They want patients that are, and I quote, “a slam dunk” for palliative or hospice care, such as cancer patients. “As you know,” I was told, “your condition is more rare and you are so young.”

What I gathered was that I don’t meet the criteria for the ideal palliative care patient. You can’t see my disease like cancer, only it’s affects. I don’t know if laws changed about what treatments can be provided for different types of patients, or if my group made changes internally to what they want to provide, but either way I don’t understand why I was not just told this up front instead of being deceived into thinking something else.

The NP left my house telling me she would talk to their doctor about me that day, and would call me at the latest by tomorrow to let me know if they would accept me as a patient. After five tomorrows I called them back, and it was not a total surprise to hear that they also will not take me on as a patient. It was suggested that I seek out a pain clinic.

Not only have my past experiences with pain management clinics been downright agonizing, but that means also needing to find someone to manage my breathing, someone to manage my nausea and weight loss, someone to manage my fluid infusions, and someone to manage my mental health. I literally do not have the strength, will, or stamina to go back to having eight different specialists that do not communicate with each other, and spending my days running back and forth to appointments day after day. I simply do not have it in me.

The way forward that I can see right now is to wean myself off of my medications, discontinue my tube feedings and fluids, and let my chariot come whisk me away. I am broken by the dysfunction of the healthcare system that once seemed to offer so much hope and assurance. I’m crushed to know there will be many others out there unable to advocate for themselves, unable to stand up and survive a system that wants to just exhaust you to death in a swirl of confusion and misinformation. I’m just sad and empty, and I cannot run on empty.

I know that this does not come as a surprise to God. He knew all along. I am confident He will meet me, whatever the road forward looks like. I do not like walking into what I cannot see, but I trust I have a Savior who sees all and will keep me in the palm of his hand.

What drew me to this group…

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Hope and Healing?

Hannah

Several weeks ago I had surgery to correct a problem with my VP shunt. A small handful of days before surgery my hospice company had been working on my recertification; that is getting everything in place for me to receive another 6 months of care. I was very anxious about surgery, but confident in knowing when I came home I would be in the good care of my hospice team. They have been so supportive and able to meet my needs no matter the hour.

Two days before surgery I got some very surprising news. My care team had collaborated, and they believed I have more like a year or two to live, rather than a number of months. On the day of my surgery, hospice would be pulling out of the picture and I would be transferring to palliative care, another aspect of comfort care.

At first we celebrated what that meant. The doctors seeing my condition stabilize and giving me a greater expectation of life was something to worship over! We had been seeking out some more natural ways of healing, and with the help of some friends also going before the Courts of Heaven to take ownership over healing for myself. This news seemed to be a nod that God in fact wasn’t done with me yet, and we had much to celebrate.

I am trusting God’s plan, but the transition has not been easy. When I came home from the hospital after surgery there was no one to come check in on me at home, and no one we could call at any hour if we needed more support. When my pain rises to unbearable levels we have to wait on a doctor appointment to address it instead of having immediate intervention from home. When I’m dry-heaving for hours on end and unable to keep my medicines down, we are on our own to fight through until relief is found. Instead of a phone call or home visit every week from one doctor who manages everything, I’m finding my schedule filling up with appointments I have to get to in order to see each doctor that handles each problem individually. That alone is exhausting.

I am dealing with infection from one of my incisions from my recent shunt surgery. Unfortunately because of where it is there is a risk of the infection traveling to my brain. It has taken many days and a slew of phone calls and my need to start IV antibiotics has still remained unresolved. These were the things that were easy when we had the hospice team at our fingertips.

While we celebrate that no more hospice means the anticipation of more days with my tribe, and perhaps even a complete healing of my body if that’s what God wihu, it has also been a bit of a challenge to adjust to. I did not magically feel better when I was given this news; instead I have continued to fight hard daily battles, only without the support I had grown comfortable with. I have had to fight harder with less support, and my capacity to do so taps out so quickly. It has meant long stretches with no relief from pain Sleepless night upon sleepless night. Indescribable fatigue having to make phone call after phone call to set things up or to get myself out in my wheelchair to see doctors in person.

I pray this will settle down; that we will eventually find a rhythm in which my needs are met and we can go longer stretches between doctor visits. I pray my focus can remain on living my days well and embracing the moments that will last. Right now I feel like there’s not enough left of me for my family at the end of the day, and I hate that feeling. I know God has a plan in this. Will you please pray that members of my palliative care team will rise up to take some of the burden from us? That I will find rest and restoration at home, and be able to extend myself further to my family?

I’m thankful for you, dear reader, and the support and encouragement you have graciously continued to extend to me. Please tell me how I can pray for and support you as well!

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Life Expectancy

Hannah

My 6 year old climbed into bed with me and let out a deep sigh as he laid his head on my shoulder.  His babyish fingers fiddled with the green beads on the bracelet I had given him when he asked for something to “remember me.” When I asked him what he was thinking about, the fears came spilling out.  “I don’t want to miss you mama, I want you to stay.” He echoed what my heart whispers every time I look into the eyes of my little people.  We all want more time.

My condition has a life expectancy of 5-15 years.  My symptoms started 6 years ago. I guess many would say I’m living on borrowed time.  It’s a heavy thought when you think of it that way. That’s the thing though; every one of my days  are already perfectly appointed, however many that may be.

It’s easy to get caught up in fear when you have something that has put an expiration date over your head.  I’m not going to lie and say my mind doesn’t wander there, wondering sometimes over how long I have.  The more I have moved and leaned into this season though, the more I am filled with an overwhelming peace that I will be here the perfect number of days.  It’s a painful belief we have that people are taken from us too soon.  “She was too young.” “He died too soon.” “She was taken from us much too early.”  Can any of us point to someone who died right on time?  I choose to believe that God allows each of us to die at the perfect time, regardless of the circumstances.  This gives me so much freedom.

Instead of focusing on my life expectancy, I’m choosing to live expectantly; expecting joy, daily graces, and the perfect number of days to do life here with my people.  I’m soaking up the snuggles, rolling with the grumpy mornings, and pledging to be present for the big and small moments of every day without fear over my future. What if you decided to believe that everyone is here for the perfect number of days? Who would you be?

Please leave me a comment, it lets me know you’re listening!

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Missing…

Hannah

“They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad…”

I am still going to bed having filled out my gratitude journal. I’m still whispering thanks for my multitude of blessings. I know tomorrow is a new day with new promise… but tonight, tonight it just doesn’t feel fair.

“I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.”

-Mercy Me “Even If”

Please leave me a comment, it lets me know you’re listening!

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Hard Doctor Day

Hannah

Yesterday began at the office of my tender hearted hospice doctors. Despite my anxiety, I am always soothed by the kind hands and gentle eyes that meet me. Hearts that truly want to help; to listen and find the thing that will make my days the most bearable. I always end these visits knowing that I matter, that my needs are important, and that I have a team in my corner.

My heart thumped more uncomfortable as I had to brave the pulmonary office later. There is not the same gentle atmosphere, but one of facts, hustle and bustle. I knew by my panting for air and the bluish of my fingernails that I was fighting harder. There was no tenderness in the hard words; my days could be changing, my lungs needing more support. My positivity deflated as I considered my days tethered to these machines that help me suck in and out the air of living.

Immensely sad is what I know I felt, but it came out as anger. I didn’t even know where to direct it, and my sweet little loves ended up getting the brunt of my frustration as I reeled with how to reconcile my thoughts and fears. I finally removed myself, tucking early into bed so as to not keep expressing my frustration to the people I love so dearly. Some days you just have to put it all to bed; pick it up again when your courage is renewed.

The facts are the same today, and my heart is still sad, but I am renewed in my hope for these coming days. There is nothing I won’t do to fight for more beautiful days with my people. Expectations laid aside, for I know that the true meaning of my days is not found in my misguided expectations, but it’s found in the great gift of deeply loving and being deeply loved by my people. That’s where you’ll find me; wrestling another hard bit of my story, but drinking deep in the grace found all around me.

Please leave me a comment, it lets me know you’re listening!

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Four Faves

Hannah

I’m away from home in a strange bed tonight, and I thought I would do something a little different on my blog to pass the time. As I grabbed a few “necessities” and threw them in my bag on the way out, I thought about how some of the best things are discovered from other people’s suggestions, so I’m going to share with you a few of my favorite things!

5 gum in Strawberry Flood. It’s no secret that the peppermint 5 gum is my absolute favorite, but not too long ago I tried the strawberry on a whim when I came across it. Just like the mint, it keeps its flavor long after most gums fade. The strawberry is a perfect blend of tart and not-too-sweet. It’s juicy and fruity and just the best pick me up on a hot day of running around.

Double stuff is my jam, but an Oreo completely encased in fudge? That is perfection! These tiny bites have the perfect ratio of cookie to chocolate, and they come in pre-measured portions so you don’t go overboard! They also come in flavors like mint and coconut if you’re looking to switch things up.

BiC Gelocity pens. Not only do these come in a bunch of vibrant, fun, as well as practical colors, but they glide so smoothly you’ll never want to stop writing! I use these for jotting down notes and writing letters, as well as doodling or drawing in my journal and sketch pads. The creamy inks are a pleasure to work with! I keep a variety of pens tossed in my bag for when opportunities arise.

Ecolips lip balm from Whole Foods. This organic lippy is divine, and I find myself reaching for it time and again. It moisturizes exceptionally well, and never feels thick or sticky. Yumberry is my favorite flavor, but they have many delicious flavors to choose from, like vanilla honey, blood orange, and pomegranate.

Black paper sketch pad. I got some great new markers and pens for my birthday, and I picked up this sketchbook at Michaels to practice with them. Not only are the pages super smooth and thick enough to prevent bleeding through, but I absolutely love how it makes the colors pop!

There you have it, a few of my favorite things. I hope you find something new you enjoy!

Please leave me a comment, it lets me know you’re listening!

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The Grumps

Hannah

After a sleepless night, I’m curled under my favorite blanket watching a cloudy gray sky. I’m dealing with some nagging pain following a procedure yesterday, and it’s got me feeling down. Well, maybe just sorry for myself. There were other things I wanted to do with my day today. Thinking how to be grateful anyway… there are so many with larger struggles than I. I can lie here and save my energy for my little people who will come bounding in from the bus and find me with love to share. That’s where the gift is found; in strength that’s beyond my own, and that’s meant to be given away. Tell me, where are you loving beyond your strength today?

Please leave me a comment, it lets me know you’re listening!