Life Update 3: She Started Her Cyclophosphamide Treatment

"Healing is not linear."

Hello guys!

It has been more than a week since my last update and I honestly can't recount everything that happened. As I snapped in the previous days, I have been very busy in the past week. My work is now piling on me after two weeks of not focusing on it, I have been contacting a lot of people and processing her documents for government assistance, and I felt like my body's now starting to give up after more than two weeks of no proper eating time and lack of sleep. I was trying to check the Worldmappin community last Tuesday as part of my duties, but I fell asleep as I was setting my laptop.

I will still reply on the comments on my previous post. I feel like I still have a lot of things to do and I'm so confused on where to start. One thing is for sure, I have to get back to curating for @worldmappin.

Before the update about her current situation, I would like to express my deepest gratitude to those who helped. Her life is already an extension of you all because of all the help, prayers, and encouragement, including those from the whole Hive community. I don't how to repay you all, but maybe I'll just pay it forward. I just wanted her to live her life to the fullest, even with all the restrictions and medications, knowing that a lot of people helped her recover.

Thankfully she was out of ICU on November 18 and that was after 12 harrowing days of uncertainty. I'm actually still afraid of her condition even after the assurances of her doctors. That's because I saw her so okay one day and then suddenly had difficulty in breathing the next day. But we're waiting for the discharge order of her nephrologist and she'll be out in the hospital, probably tomorrow. It was supposed to be last Saturday, but they're still treating her edema and bloating. She was also transfused with albumin in the past four days.

The most important update is her cyclophosphamide treatment last November 19. It's a monthly IV treatment for six months to suppress her immune system and to prevent it from attacking her organs. It's like chemotherapy because cyclophosphamide is also used to treat cancer. Together with cyclophosphamide, she's taking her daily prednisone tablet. It's a steroid to also suppress the immune system and reduce the inflammation in her body. To help her kidney, she's taking three ketoanalogue tablets every after meal. Her blood pressure medication is now changed to telmisartan on top of the usual clonidine and Amlodipine. She's also taking levetiracetam to prevent her from having seizures.

According to her neurologist, her brain has been affected by the lupus, hence the seizures. That was based on the results of her MRI scan. But the treatment is still the same. Hopefully, the damage will be reversed.

Her infectious disease specialist changed her antibiotics from IV to oral since the other day. So far, there's no sign of an active infection, so hopefully that will always be the case, but the doctor don't want to be complacent.

There's still a hazy part on her lungs, but overall it's so much clearer than the previous days, so her pulmonologist continued to give her fluimucil to remove the remaining phlegm in her lungs. She's not having any cough or difficulty breathing anymore. I have to update from her cardiologist, but I think she's still taking beta blockers for her heart.

She's taking about 16 tablets every after breakfast, 4 tablets after lunch, 2 tablets at 3 PM, and about 7 or 8 tablets after dinner. That's about PHP 3,000 or $50 per day. Together with her human albumin transfusion, I paid about PHP 7,000 or $120 per day. She has laboratory tests like CBC, Creatinine, Potassium, Sodium, and Urine Creatinine/Protein Ratio. I paid around PHP 5,000 or $85 for that. Our current hospital bill is already at PHP 511,000 or $8,700 after our partial payment of more than PHP 200,000 or $3,400.

So for those who are asking if I still need financial help, yes I still very much do, but I believe that there's a limit to help. I don't want to keep on asking for help. A simple upvote on my posts is enough. I'll still find another way do deal with the financial burden anyway.

Those mentioned above are just the immediate needs. We are also reeling for the upcoming follow up check ups. She's already scheduled to have another lab tests this coming December 11 and her second month of cyclophosphamide treatment this December 19. Her neurologist also scheduled a follow up check up on December 20. All of that entails cost. She's also scheduled for another MRI scan maybe in the next three or four months. And MRI scan is not cheap. My estimate is at around PHP 30,000 or $500 based on the increase of her hospital bill during the day of her MRI scan.

So yeah, that's the new reality that we have to face. I don't know if I'll be able to travel again. I might as well post all my previous travels that I shelved since 2020. Anyway, I guess that's all for this update. I think this will be the second to the last update. I'll provide the last update after her discharge.

Again, thank you all for all the help!