Tag: Anemia

1 Week in the Hospital

I’ve been in the hospital for over a week now, and am still unsure when I’ll be able to go home. 

I was treated with IV antibiotics for bacterial pneumonia. The cough, mucus, and shortness of breath have been steadily improving. Hospital protocol still has me on isolation, even though I came down with Covid symptoms 3 weeks ago… this means I can’t go for walks around the unit for a change of scenery or exercise, and everything is extra complicated for the staff in order to gown, mask, and goggle up just to come in my room. 

I came in to the ED with a hemoglobin of 5.4, and have since received 4 blood transfusions… my hemoglobin yesterday morning was only 7.6, however 🤯 While some fluctuation is normal, the continued slow but steady dropping of the Hgb is concerning for a bleed somewhere. The level drops, I get a unit of blood, and a day or 2 later, the level drops again and I need another transfusion 😞 I had to have an upper endoscopy yesterday to check for any sources of bleeding. Thankfully, no bleeding source was found, but we still don’t have answers. Just continued watching and potentially more invasive procedures to locate a cause. 

I’m also still requiring supplemental oxygen 24/7. We’ve been working to wean me down, but I’m still needing at least 2-2.5L/min. We’re hoping the steroids will bring down some of the lung inflammation and make breathing easier, but side effects and consequences of steroids aren’t negligible, especially in an individual as sensitive as I am 😵‍💫

I’m also dealing with a lot of edema and ascites again, so am on IV diuretics that keep me running to the toilet at least once every hour all day long… this is really tricky to balance with tachycardia, cardiomyopathy, and POTS. I’m having a severe pain flare-up from the lack of normal activity, and all the time on uncomfortable gurneys and hospital beds. The last couple nights I’ve literally barely been able to sleep despite every pain med they’ll offer me and every single self-management tool I have access to. Combined with narcotics, I’m usually too groggy to read, text, or do anything. 

Needless to say, I miss home and I’m sick of being miserable! Thankfully, the hospital isn’t too far from home, so I’ve been able to see the kids a few times, and Brandon is nearby to help while taking care of literally everything else and working. 

Hospital food and takeout are getting mighty old. I miss my bed and all the comforts of home. I miss the only noises and interruptions being the sweet sounds (or sometimes not so sweet 😏) of the kids. 

Please pray for continued healing, strength, and peace so that I might get back home with my family soon. I also apologize for all the unanswered messages this past week. Most of the time I’m just trying to make it through each moment 🫶 

Lots of Updates; In the ED Currently ❤️‍🩹

I know people have been anxious for an update, and I hope you’ll understand why it’s taken me so long to post one. 

Radiation to the large liver mass was, put simply, too much for my body. I ended up making it 3/8 of the way through the planned treatment before my radiation oncologist and I decided to call it quits. I was so unbelievably sick and in so much pain 24/7, I could literally barely function. Since the only other options I am being offered from Mayo and the U of M are systemic therapies, he felt that if I could only tolerate one thing, I should try to pivot to that. 

I made the very difficult decision at the end of November to quit radiation and take steps to begin systemic therapy. After weighing all of the (honestly, terrible) options, I have opted to try an oral targeted therapy called pazopanib. It isn’t a chemo, but carries many of the same awful risks. The biggest difference is that it is something I’d take on my own every day, and can therefore stop on my own, if needed/desired at any point. Would you believe I’m still waiting on the medication a month later?! Gotta love the world of prior authorizations, specialty pharmacies, and red tape 🙄

During the waiting period I’ve tried my best to recover from the chaos caused by radiation and continued tumor growth elsewhere. I FINALLY after may months found a pain doctor willing to work with me (thanks to connections through my amazing chiropractor… again, the lovely world of medicine). We’re in the process now of trying to figure out what I can tolerate and what works for me. 

Then, a few days prior to Christmas, our house got hit with COVID. We managed to avoid it for nearly 6 years, but it reared its ugly head and ruined our Christmases. I was honestly so sick I barely remember watching the kids open their stockings and gifts at home. I can also say that was the sickest and worst I’ve ever felt in my life: even more than when I nearly died from chemo several years ago. 

Thankfully, Brandon and the kids recovered well and quickly, but it’s been a different story for me. As I’m typing this, I’m in the emergency room. I’ve been watching my oxygen levels very closely at home the last couple weeks, and it’s been insanely difficult for me to do anything other than sit on the couch. Eating, talking, bathing, dressing, walking to the bathroom.. have all left me short of breath, coughing, heart pounding, and feeling like I could pass out. I was doing supplemental oxygen at home, but as of this morning, it was no longer enough. 

Here at the ED I found out I am severely anemic (hemoglobin of 5.6 🤯🤯🤯), and it looks like I have the start of a bacterial pneumonia in my left upper lung. There are a few other things that need to be watched, but for now, we’re addressing the anemia and pneumonia. 

So now I’m getting oxygen, IV antibiotics, fluids, as well as blood transfusions, while I find out which hospital has room to admit me 😖 The joys of a terrible cold/flu season. It sounds like it’s too soon to tell, but I may be stuck in the hospital for a few days, all depending on how well I’m tolerating things and improving. 

Especially now, we really really appreciate your prayers and positive thoughts sent our way. Still praying for a massive miracle, and the first step is getting well enough to get home soon! I absolutely despise being in the hospital and being away from the kids. I’m already looking forward to my own bed, being free from all these cords, and sitting on a comfortable couch surrounded by my family.