October 18 – 24, 2018

October 18 (TH)

Today is my 1^st outpatient day since I was discharged. It is a bit early because outpatient appointments are usually after 2 weeks. So I went to the hospital, my appointment was 15:00 JST, but I have to have my blood and urine test so I have to arrive an hour early.

The results were fine, it was just that I was advised that I can take up to 1,500ml of water, and I have to exercise.

My steroids too were decreased from 20mg per day to 17.5mg per day. It is a good sign! But the other medicines are all the same.

I requested the pharmacy that my medicines be grouped per morning and evening. This way it will be easier for me and I will not have mistakes.

October 19 (F)

Since yesterday after my outpatient appointment, I was having LBM. My stomach hurt so much that I took Ririka, (the ones that can make me sleep painkiller), but it was not that effective for my stomach pain. I took the stronger painkiller and a sleeping pill, I was able to fell asleep.

October 20 (S)

Thank God that my stomach pain got a little better but I was still having LBM. I don’t know but, at morning I am really having little pain but as the day goes and it becomes night, my stomach hurts. Today I only ate a small amount of food, and as much as possible I took tea.

October 21 (Su)

As I thought since I was eating a small amount of food and letting my intestines rest, I will not be having LBM today. But today I had up to 7 times LBM. I am starting to have weak legs again. Having only LBM is fine, but I am also having stomach aches and it bothers me.

October 22 (M)

I decided to go to the hospital and see my doctor. I was lucky enough that Nagatsuji Sensei came to attend to me quickly. He said that I can take the loperamide since there was no virus found in my stool examinations.  He also prescribed the strong painkillers so that I can drink it 2 times a day. And also the sleeping pills.

October 23 (T)

I got my SIM card delivered today. This took a little time, now I have a contact number here in Japan. It is hard to have transactions here if I am not having a contact number.

My stomach pain got a little better so I decided to take a walk to exercise my legs. But I think having them to work to fullest again will take time.

October 24 (W)

I received this medicine organizer from my friend. It is like a calendar. It is very convenient and I can easily see what medicines to take at what day and time.

Just I thought that my stomach is getting better, I am having my appetite back. I cooked the fish Saba for dinner, but at 23:45 JST, I was starting to vomit.

My new medicine dosage is:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 7.5mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement. Sleeping pills #1 & #2.

October 11-17, 2018

After my discharge from the hospital, I would like to have a quick story of what is happening about me.

October 11 (TH)

 I tried to go to my workplace for a change of mood. Visit and greet the people there. I forgot that there was a step in that place, I fell down. It was like my legs don’t have any strength, I just fell down like a vegetable. It was a good thing that I was not hurt or anything.

I also saw that my legs are starting to have bruises even if I didn’t bump to anything.

October 12 (F)

The mother of my boss came to my house and gave me congratulatory rice. It is a tradition here in Japan, when you are celebrating something, this kind of rice will be given out.

Since I was confined for over 4 months, I haven’t had any exercise. Because of that, I am having muscle pains.

But I can feel that my stomach is moving healthily. This is a good sign.

October 13 (Sat)

My hair is falling, to the extent that it looks so thin so I got a haircut.

I am starting to have UTI symptoms. When I urinate, it hurt. My lower left back also hurt. This lower left back pain is still the pain that I was complaining to the doctors. But I can still bear the pain, I didn’t take any painkiller.

My friends also came to visit me, I was so happy. My Indian friend made us lunch and she even brought cakes.

October 14 (Sun)

Once again I went to my workplace for observation and to learn about the work that I will do when I am fully recovered. Even though I am not moving that rigorously, I am feeling dizzy and nauseous.

I also got back the company phone. So that I can contact them in case of emergency.

October 15 (M)

I tried to ride my bicycle and go to my workplace. It was very difficult for me, my legs are still not working properly, and I really need practice and exercise. Even taking the stairs was very difficult.

October 16 (T)

When I took a bath, I saw that my skin was really transparent like that I can see my veins, and small veins like a spider web are developing. At first, when I was still in the hospital, these spider web-like veins were just developing in my legs, but now, it is developing at my back and my chest.

I also observed that since it is starting to get cold here, my throat is quick drying and it hurt.

Starting today, I didn’t take the sleeping pills, but I had a hard time falling asleep. I ended up not having enough sleep.

October 17 (W)

Since I told my friend that I was having a hard time standing up from the Japanese type bed (futon), he lent me a folding bed. It was easier to get up especially at night when I go to the toilet. My legs are not yet working properly.

My stomach is hurting and I am having LBM. I take a painkiller, luckily the pain was gone but I am still having LBM.

So this is a brief summary of what happened to me in the past week.

Still, my medicine dosage is the same.

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement.

x

October 10, 2018 (Wednesday) Today is my discharge day!!!

🎆🎇Today is my discharge day!!!🎆🎇

Greetings!🙆

I got up early and changed my clothes so I can finalize my packing. It was a good thing because Nagatsuji Sensei came in very early to check on me if really I can be discharged today!💞

Today was very busy, I requested an English version of my medical certificate and billing statement, 📄and did the process for my discharge.😵

I made my greetings to everyone in the ward👧, the nurses, caregivers, helpers, and doctors. I was so lucky that some doctors, even they are not really in charge of me, they came in to see and said goodbye to me.😻

I had my name band cut off. As expected from 4 months of stay, the color has changed from white to gray.😂 Then my nurse gave me my hospital card,💳 medicines, 💊and outpatient appointment📃. It was very sad to say goodbye to her because we got really close to each other.

I was lucky to have a picture together with some of the nephrologists.📷💖

I paid my bill and went on my way home. I went home alone because everyone is at work.

So having these bags I arrived home. I was so lucky that the taxi driver carried my bags for me. He was surprised that I stayed in the hospital for 4 months.😁

So, from today onwards, I am back to reality.💪 I cleaned my house, did the laundry, did the cooking and dishes. From now onwards, everything will be on me. 🙆It was tiring but, I did it very slowly. Because there are too many medicines, 👀I really took my time to organize it. I don’t want to have a mistake in taking them.

Thank you for your love and prayers,🙇 after 4 months and 11 days, I finally got home. Let’s continue to pray🙏 that from here onwards, my body will not act up and that I will always be feeling good. 

October 9, 2018 (Tuesday)

Good morning! I am feeling good! 💪

Today I had my blood test and Nagatsuji Sensei said that there were no problems with the result and since my LBM is getting better,🙆 he said that I can go out of the hospital whenever I like, even tomorrow! 😲😂 So I said that I want to go home tomorrow, October 10!💟😇

I once again took an appointment with the nutritionist,😏 because Nagatsuji Sensei is very worried that I might get LBM again and come back to the hospital. So, the lecture was about the foods that I should avoid and proper preparation of food. 🍱It was indeed a nice lecture. I have to avoid many foods that are harmful to my stomach.

The pharmacist also came in to discuss the medicines💊 that will be issued to me and I got my personal medicine notebook.📔 So I have to have a copy of this even in my cell phone so that in case of emergency, doctors from other hospitals will know the medicines that I am taking.

Nagatsuji Sensei keeps on talking about the things that I should avoid. He was also very kind to discuss in detail the outpatient procedure and how to get the medicines. It is my first time here in Japan to do this so I appreciate it very much.💕 He also reminded me that I need to get a cell phone 📱so that in case of an emergency, I can contact the hospital🏥 and I will not wait for too long in the emergency receiving area.

I packed my things again.👕👛👜 Never ending packing! So many things, but I have only limited space.

Since, I want to greet and thank everyone, nurses and doctors, I started the greetings today. Every one is so happy to hear that I can go home, but also sad because I have been in their care for over 4 months. They said that they will miss me, me too I will miss them. But it is better to see them in some other occasion, like if I will be having outpatient consultations.

I am praying that this will be the last night scenery that I will see here from this room. 🙏

My medicine dosage is still:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement, and Ririka. I am still taking sleeping pills #1 & #2.

October 7-8, 2018

Good morning! 🌅I am feeling a little better than yesterday. 💪Even though I had LBM almost 4 times each day, there was little pain so I think there is an improvement.😆 As long as there is no pain, I think I can handle it👌. I am only afraid if my stomach will hurt so much that I cannot move. Sometimes if it comes to that level, the painkillers are not taking effect,😰 so I must also consider the level of pain when it comes to taking the painkillers.

I got my IV taken out today! I am free again!👏 I talked to Nagatsuji Sensei and he said that as my family of doctors said, it is ok not to do the stomach and large intestine camera test.🙆 😌Also, the LBM was not an allergic reaction from the medicine because I have been taking the medicine ever since the treatment, and during the time I was fasting I am taking the same medicine and everything was fine. So he said that there is no other way but to try to experience daily life and live with the symptoms of SLE.😅  Starting on the evening of October 8, from rice porridge, I will start to eat rice! 🍚Good sign!

Feeling good and with good weather,👧 I went to the garden to some stretching and walking. Sure that summer is over; I can feel the cold autumn breeze. Time went by so easily⌛, I spent my summer days under the comfort of the hospital roof🏥. If some animals go hibernating during winter, I, in reverse hibernated and restarted during the summer.

Nagatsuji Sensei said that I can go out anytime I wanted as long as I am feeling good! ✨🎉

So I am praying that this good feeling will continue so I can go out faster!🙏🙇

My medicine dosage is still:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement, and Ririka. I am still taking sleeping pills #1 & #2.

October 5-6, 2018

Good morning!✨

A gloomy day but I am hoping for a positive result.✌ Today is my blood test, if the results are good I can eat starting from lunch today.😋

Nagatsuji Sensei came in early. 😀He said that even though all of the test results are not out yet, it seems that the results are good and he said that I can eat starting lunch! 👏I will be starting with a soft diet 🍲, as expected from 1 week of not eating anything. I just ate a small amount of rice porridge and I was very careful with the volume of my intakes, I am afraid that my stomach will hurt again. 😖Nagatsuji Sensei was so kind to make a phone call to my nurse to check, and then he also came in to check if my stomach hurts after I ate my lunch.😻 Thank God that my stomach didn’t hurt.🙆  But as the night falls my stomach hurts, 😰that is why Nagatsuji Sensei said that I can take painkiller at the time I feel pain.

As I thought that my arms and legs are getting healed and clean, I got a busted vein from the IV again.😞 Since I am able to eat again, my IV was stopped 😊 but the needle will be kept in place just in case I need shots of painkillers and anti-vomit medicines. And as expected, I used it for painkiller on the night of October  6. Ririka didn’t go well so I have to use another painkiller. 😰

For these 2 days, I didn't have LBM, thank God!🙇 I hope this will continue. I don't know what to do if I will have LBM again. I don't want to have a long extension here in the hospital.😵😂

My new medicine dosage is:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement, and Ririka. I am still taking sleeping pills #1 & #2.

October 1-4, 2018

Hello! long time no post. Sorry about that.🙇

October 1 was the date of my discharge but I wasn’t able to go home😥. My doctors advised me to extend and go out once my LBM is gone. They said that it is safer to extend in the hospital🏥 than, going home then if things got worse, I will be admitted again. Nagatsuji Sensei also asked me to stay and give him peace of mind. 😂

So I decided to extend😳. I had my CT scan. There is accumulated water in my stomach.😱 Please see the yellow circle in the picture. Nagatusji Sensei said that the accumulation of water is due to the imbalance of nutrients in my body that is caused by SLE / lupus; which leads to LBM.  😿

The treatment my doctors suggested is that I will be under fasting again😰 so that I can let my digestive system rest. I said it is okay for me because I haven’t eaten since Saturday, September 29. I have my IV for the nutrients, and for 3 days, October 1-3, I will be receiving 2 bins of albumin per day.💬Albumin helps reduce the edema (water retention) by drawing fluid from the body into the blood vessels.

Since I am not eating my LBM is slowly fading away.😌 I am just losing strength in my legs. I am not allowed to go and walk outside since I am not eating anything and I have IV, it is dangerous that I may fall down again.

I am just allowed to drink water or tea. But every time I have intake, my stomach is hurting.😫 I have to endure the pain every time I drink my medicine. Not eating and with stomach hurting I have no energy, I just spent most of my time lying down and sleeping💤. I also started to take Ririka, the painkiller that has a sleeping pill like effect, which is why I am always drowsy.💫

Nagatsuji Sensei told me that if the blood test result will be good I can eat starting lunch on Friday, October 5.👌 But I have to start with rice porridge again.😑

I am praying that tomorrow will be a brighter day than today.🙏

My new medicine dosage is:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement, and Ririka. I am still taking sleeping pills #1 & #2.

September 28-30, 2018

Sorry for this very late post. I was not feeling really well these past few days. 

Today is Saturday and my blood and urine samples were taken for my last regular laboratory check. 😊Every laboratory test needed before the discharge is done. 👌Nagatsuji Sensei said that my Iron level is low so he needed to add another supplement for that.😐

Yesterday, the bandage from the renal biopsy wound was removed and now this is what it looks like.😅

This is my new view! I have moved to another room again.😂 I was thinking why they moved me when I will be discharged soon.😕 Oh well, cost-cutting maybe. 🙊Maybe because I will be alone again in my previous room so they put me to another room.

I am feeling fine already and I have packed all my things. 👍There are so many books that it took a lot of space in my standard hand carry luggage. 😱

The wound from the renal biopsy is like this. It heals so fast.😸

I thought everything was going smooth and that I can go home as scheduled but September 30, 2018, the day before my discharge, I am starting to have a very bad LBM again.😰😨 It so bad, that every after hour, I am going to the toilet. I have no strength left and my stomach really hurt. It was to the point that I can’t take out anything more. 😵If this continues, I can’t be discharged tomorrow I think.😥

My new medicine dosage is:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, anti-cholesterol medicine, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday. 

🌜Evening: 10mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, and the new zinc supplement.