Navigating Recovery
How is Grandma?
Today hasn’t been the best day for Grandma. After being transferred from Navicent Hospital to Bleckley Rehab, we’ve had to start over with her medical information, and some things got lost in the transition.
I visited Grandma today and updated her care team on which medications she should be taking and which ones she shouldn’t. One important example is Hydrochlorothiazide, a medication that was still on her list but should have been discontinued. We recently learned that Hydrochlorothiazide was the main reason her sodium was so dangerously low.
Why is Hydrochlorothiazide a Problem?
Hydrochlorothiazide is a thiazide diuretic, which means it helps the body get rid of excess fluid by increasing urine output. However, it also flushes out sodium along with water, which can lead to low sodium levels (hyponatremia).
For Grandma, being elderly and having MDS (Myelodysplastic Syndromes) and Chronic Kidney Disease (CKD), this sodium loss can be extremely dangerous. The most shocking part? She’s been on Hydrochlorothiazide for over a year, and it was prescribed by her renal doctor, the one who treats her CKD.
This was devastating to learn. I’ve tried so hard to stay on top of her medications by researching them, checking for interactions, and making sure they’re safe for her health conditions. And yet, I missed this one. I didn’t even know there was a problem with her sodium until she was admitted to the hospital.
A Close Call
When she was admitted to Navicent, her sodium levels were 111. A nurse at Bleckley mentioned she should have been in the ICU with levels that low. In medical terms, 111 is life-threatening and considered severe hyponatremia.
- Normal sodium levels are 135-145.
- Anything below 120 is extremely dangerous and can lead to seizures, brain swelling, and even death.
Praise Jesus, because it’s clear that He was watching over her. As much as I hate that she fell, I’m grateful we discovered the sodium issue before it got worse.
- Her sodium was 132 at Navicent yesterday.
- It was 128 today at Bleckley.
Current Condition
Right now, Grandma has very low energy and can barely stay awake. Her body is jerking and jumping uncontrollably, and we don’t know why. This is not normal behavior for her. It could be due to the combination of low sodium and high potassium.
She also had another blood transfusion today because her hemoglobin is low (it was 8, and normal is 12-15).
- Grandma usually gets Aranesp injections at the Cancer Center to help her body make more red blood cells due to her MDS.
- She hasn’t had those injections because she’s been in the hospital, and she’s missed a couple of doses.
I mentioned this to her care teams at both Navicent and Bleckley, but they shrugged it off and gave her a blood transfusion instead. I even called her Cancer Center nurse, who confirmed that a blood transfusion alone isn’t enough—she needs the Aranesp injection.
I’ve made this clear to her care team, and if there’s no progress by tomorrow, I will escalate the issue until it’s addressed. It’s frustrating that neither hospital reached out to her Cancer Center for guidance.
What is MDS and How Does It Affect Grandma?
MDS stands for Myelodysplastic Syndromes. It’s a condition that affects the bone marrow, which is the spongy tissue inside our bones where blood cells are made.
In simple terms, MDS means Grandma’s bone marrow isn’t working properly. It doesn’t make enough healthy blood cells, and the ones it does make don’t live as long as they should. This affects three types of blood cells:
- Red Blood Cells – These carry oxygen throughout the body. When she doesn’t have enough, she feels tired, weak, and short of breath. This is called anemia.
- White Blood Cells – These fight infections. Low levels mean she’s more prone to getting sick.
- Platelets – These help her blood clot. If they’re low, she bruises easily and might bleed more than normal from a cut or injury.
For Grandma, the biggest issue has been low red blood cells (anemia), which makes her feel weak and tired all the time. She gets Aranesp injections to help her bone marrow make more red blood cells, but she’s been missing them while in the hospital.
Because of MDS, her body struggles to keep her hemoglobin levels up (that’s the part of the red blood cells that carries oxygen). This is why she’s needed blood transfusions recently.
MDS is a chronic condition, meaning it won’t go away, but with the right care and treatments, you wouldn't even know she has it. ❤️
Current Goals
Our current goals are:
- Get her medications sorted out, especially stopping the Hydrochlorothiazide.
- Make sure she receives the Aranesp injection to help her anemia.
- Figure out why her body is jerking uncontrollably.
- Get her health stabilized so she can start rehabilitation to walk again.
Prayer Requests and Gratitude
I kindly ask you all for continued prayers:
- Pray for her current medical/care team—we need knowledgeable people who will look at the whole picture. Grandma is complicated (we’ve known that for a while!), but she’s just getting to know her new care team, and we need them to catch up quickly.
- Pray for Grandma’s health and strength.
- Pray for me, that I can keep up with all the moving pieces and ensure her care is the best it can be. Right now, those pieces feel scattered.
Thank You to The Village
I also want to say a huge thank you to The Village—it truly takes a village to care for Grandma and Aunt Desiree (The Golden Girls!). The love and support from family and friends are incredible.
From Clint taking care of Grandma’s house and dog, Vonnie sacrificing her time, Cricket and Shelly being tech support, Faye being her taxi to Dr. appointments, to Dr. Roberts and his wife checking in, and so many others helping in ways big and small—you all are amazing.
I know there are so many more who have stepped in, shown love, and supported us through this journey. If I didn’t mention you by name, please know that your kindness and help have not gone unnoticed. Every prayer, visit, meal, errand, and message of encouragement means more to us than words can express.
Special thanks to my husband, my children, and my mom for keeping my household running in my absence. Thank you to the BramJam Team for keeping the business going in my absence. I couldn’t do this without all of you.
I am forever grateful for this incredible village of love and support. No wonder Grandma is going to outlive us all.
Thank you all for your continued prayers and love. I’ll keep you updated as we move forward. ❤️
