Happy birthday to me!

It`s my 7<sup>th</sup> week and I`m back at the Nephrology ward. From now on, I will be recovering here. I can still feel the aftereffect of lung surgery. Even though the pneumothorax tubes were taken out, the doctors put a gauze to apply pressure to the wound so there will be no bleeding. It will be stuck to my side for a while. I must exercise my arms and walk to exercise my lungs. I got strength enough to go to the hospital garden. 😺The weather is getting nice, and the flowers are blooming. Technically it is spring here in Japan, but the temperature is like summer. I can even go to the garden wearing short sleeves.

I was starting to have edema again, and it was so bad that I gained 3 kilos. 😟My feet swelled as well as my legs. My skin was so stretched that it hurts.😢 I was advised by my dermatologists, Doctor Kusutani and Doctor Arai to put on tights supporters to my leg because my skin became thin and it is prone to wounds. I have IV of water pill so that I can urinate more. But it seems that it was not working fast so the doctors increased the dosage.

Many tests were done, and it seems that my lungs are recovering fast. 😏They are observing if there are holes still left, but there seems to be none. Based on the blood test, my white blood cell levels were decreasing, maybe because of the antibiotics are working effectively that it also kills the white blood cells. Also, LDH, Lactate Dehydrogenase, was high. When cells are damaged or destroyed, this enzyme is released into the fluid portion of blood. In addition, the infection level was high. These are not good. 😥My doctors told me that these may be due to the operation.

I was complaining that my lower right back abdomen was aching. An echo test was done, and the doctors found out that the tract of my right kidney is slightly swelling. Maybe I am urinating more than the usual, so it has led to this they said. 😡Lastly, the protein level that is found in my urine too was high and it is alarming. As a result, I will be under further observation.

My doctors are very apologetic, we thought that I can go home before my birthday, but I still can`t. 😖 I am confined for almost 2 months now. As of now, the edema is almost gone and I am feeling better without taking pain killers frequently. Tomorrow, I will have a blood and urine test and a CT scan. If the results are good, maybe we can plan the discharge.  

Today is my birthday!🎆🎉🎈

I am very thankful because I even though there are tough times, I am blessed that I was able to overcome it. Thank God!💕 I would also like to thank all the people who support me, especially my family, doctors, friends, co-workers, and group co-members.🙇

Another year and more challenges ahead, but still getting stronger.💜

Everything happened fast that I was not able to keep up.

It is the start of the Golden Week here in Japan. 🙌

I am in my 5^th week now and hoping that the virus will go away so I can go home. I am getting better and it has been 4-5 days that I am not taking pain killers.😊 But the edema was still occurring so I have albumin drips and additional medicine so I can urinate more.

One day I woke up, it seems everything was fine and I was feeling good. But, I suddenly felt back pains, pain in my lower right rib, and gradually difficulty in breathing. CT scan was taken and the doctors found out that one of my lungs was ruptured.😱 It was like a balloon that was out of air. The air that I am inhaling is not getting out of my body which caused the difficulty of breathing. They said that it could be due to the bacteria that damaged the lungs. Although the bacteria is cured, and the lungs got better unfortunately it is still swelling so it is vulnerable to tearing. Also, it may be the side effect of the current treatment.

*By the way, in some other cases, when a woman`s menstruation is coming the possibility of ruptures is high.

Because of the rupture, I must have a pneumothorax. The air must be taken out so that my lungs will be back to its normal shape and will naturally heal. 😥Even though they used anesthesia during the process, I still felt the pain when the tube entered my body. It was placed on my right rib side. The tube is connected to a machine that sucks up the air from my lungs. There is an indicator that air was sucked out, the sound was like blowing bubbles in glass of water. The doctors said that if the machine is making that sound, the ruptures are bad. There was also some water from my lungs extracted.

But hours after the procedure, my breathing is almost back to normal. 😹All the air is not yet sucked out so it will be a while that I will be having this. Also, I am using oxygen because there is still difficulty in breathing.

The next day, I had an X-ray taken. My lungs did improve a little bit, but still far from the normal shape. So there is no choice but to put this on for a little while. The next day, the Pulmonologist, Doctor Sumitani, checked my condition and said that the rupture is worse, that with this machine only, it will not be healed naturally. Then, he consulted with my family of doctors. Before lunchtime, Doctor Sumitani and my family of doctors together with two surgeons came to see me. They told me about my situation and the only way to be healed is to have surgery.😨😟

WHAT???!!! A surgery? 😭I was so shocked that I don’t know how to react, I only laughed. It didn’t sink-into me easily but I got a hold of myself, and said, I have to do this, this is the only way. They said that it is urgent. Then I said, can we do this today?! And they were all surprised. They looked at each other and seems to have a conclusion. They said that I have to contact my family, but my family of doctors said, your family is in the Philippines ☹, do you have someone to contact? A! your colleague, Matsumoto san. Then my attending physician, Nagatsuji Sensei, contacted Matsumoto san and said that he is needed for the explanation about the surgery procedure and his signature is needed as an agreement. Later that day, Matsumoto san came. It has been over a month since I last saw him. Due to the covid19, the visitation here in the hospital is prohibited, but there are some other cases that we can have visitors, just like my case. I even received cookies. Lucky me! 😼He said to eat it as a reward after the surgery.

The procedure was explained. As a summary, the goal of the surgery is to patch the hole in my right lung. My tissue will be used for patching. Tei Sensei said that even if the patching will be successful there is a chance of reoccurrence. If will happen, the affected area will be taken. What?! Taken? And if it will be cut, it will not grow again. Oh my God!!

Unfortunately, the operating rooms were not available that day. I was scheduled the next day, May 9, 2020 at 10:45 am. I was thinking that after this everything will be back to normal and will be okay. I was not nervous or anything, in fact I was excited, even though it was my first surgery.

So the moment arrived. 😰I was observing the room at that time and there are so many doctors and I don’t know why and what are their parts. The new nephrologist in charge of me, Miyamoto sensei, was there too. I felt relieved seeing a familiar face and cheered for me. The whole body anesthesia was administered while I am still awake. It was such a good thing that I am used to pain that it was no problem for me. It took about 15 minutes or so. After that process they put me to sleep. I don’t know how but I just blacked out.

I heard someone was calling me and when I opened my eyes, the surgery was over. And the patching was successful! They need not cut my lungs. It was 14:00, it took 3 hours. I was brought to my room. The doctors told me to breath using my nose and as deeply as I can. I realized that many things were attached to my body. There were drips, a machine that monitors my oxygen levels, oxygen, 2 pneumothorax tubes, and catheter. I was feeling over drugged and my body was aching especially my right side. Every time I inhale, I can feel my lungs expand, as in literally I can feel it expand. Even though it hurts I need to do this. I was not able to sleep that night. I think of the things I want to eat the next day (I was granted permission from my doctors that I can eat anything I want after the surgery 😊)

The next day, the doctors told me that the catheter and the machine that monitors my oxygen levels will be removed.😕 I was worried because I am taking the water pill and I have to go to the toilet often. But the doctors told me that I have to walk so that my lungs will be exercised and will heal faster. I tried to walk even though it is painful. I went to the toilet, I had the trouble of getting up, but the nurse was always there to help me. I felt so sorry for myself that I wanted to cry. Because I can`t do the normal things I can do and I felt pathetic. I tried hard and walk around as the doctors advised.

The next day, they told me that the recovery is doing good, 😲and one of the pneumothorax tubes will be removed. Tei sensei removed it for me. It was painful but relieving. On the third day, even though it was still painful, it was like nothing happened. I was brought back to the nephrology ward. Tei sensei and Kanou sensei was checking my condition so every day (for 3 or 4 days) I have to take an x-ray. Since there was no problem, the last tube was taken out. it took a week from the surgery to the taking out of the last tube. I have 3 scars. It was so fast. Now I can feel the pain from the wound, I think it still swells but I am trying my best to exercise it. I can`t sneeze or cough hard because I am afraid that my lungs will be torn again (but the doctors said it's okay).  🙋

It was the golden week here in Japan and for me it was a golden week after all. 😜

I thought it was just an ordinary house mold

Hi once again and I’m back. I was so busy at work and cannot update my blog. It has really been a long time.

It was then August last year that I started to lose my sense of taste and I observed that my tongue is getting white. I looked up on the internet and I found out that it is an indicator that something is wrong with your body. My doctor referred me to tongue specialist and he said that it was oral candidiasis Oral thrush produces slightly raised, creamy white, sore patches in the mouth or tongue. He gave me medicines for it but it was not improving my conditions, so he eventually stopped the medicines.

The winter was harsh, and it really brought damage to my health. I was suffering from severe edema and rheumatoid arthritis. There are times that I woke up due to pain and times when strong pain killer wont effect. I tried using opioids, but the side effects were not good.

December, some wounds were coming out of my skin. It started with the redness of the skin. Then it became a rash but was not itchy or nothing. The wounds on my arms and legs started to increase in numbers. It will swell until pus came out. I was referred to a dermatologist since I am taking much medicine, the treatment was through ointments. Due to edema when the wounded skin was stretched the pain will be worsened. So, every time I move, walk or sit, it really hurts. The dermatologist needs to take out the pus with a syringe so that I can move my hands and feet again.  

March came and still my cough is getting worse and I am having flu especially in the mornings. I have difficulty taking a bath because the wounds really hurt, and my fever was nonstop. My wounds were so severe that I must clean and tend it for 1 hour. My condition was not getting better and I must receive help from home visit nurses to dress my wounds. The edema was worsening, I even gained 6 kilos and was not able to walk. Mid-March my phlegm was mixed with blood. I knew it was not an ordinary cough and colds. I consulted my doctor and she advised me to be hospitalized for treatment.

It was such an April fool's day! I was admitted to the hospital. My edema was severe that my veins cannot be seen. Taking blood samples was exceedingly difficult. The only way to administer Intravenous drips (IV) was through my neck. Many tests were done. They saw spots/fungus/molds on my lungs. My doctors told me that it was a Non-tuberculosis disease, so I was relived. They said that ordinary house molds too can be the cause. As I looked back, because it is winter, I must use a heater and air humidifier. It was so cold that I cannot open the windows. As a result, the air inside the house caused the growth of molds. So, it was just NOT an ordinary house mold, don’t underestimate it! It can be extremely dangerous.

What are the exact bacteria? Was the question, until answered right medicine can not be prescribed. So, my doctors planned to do intensive general antibiotic treatment until the bacteria will be discovered. Some of my medicines were stopped because it will have bad effects with the anti-biotic treatment. I must take a general check up to see the current status of my organs because the treatment might have severe side effects. These tests were necessary to track the side effects if any. Fortunately, my eyes, ears, and other organs are well.

In the first week of the treatment, my edema was gone, and my wounds were starting to heal. But I still cannot walk, my legs were still weak, and my body feels so heavy.

I continued to gain the progress of healing until the second week. The treatment continued but the bacteria was extremely hard to identify. The bio (culturing the bacteria) failed twice. And the next way was to use molecular detection. It took time because it must be done in another laboratory.  

The third week, the test showed that the spots on my lungs have increased, still, the high fever never stops and blood coming out with my phlegm. My doctors thought that the infection is getting worse and it maybe an infection from the needle on my neck, so the only choice was to take it off. IV was transferred in my arms. Finally, the bacteria were identified!

It is Mycobacterium haemophilum. Never heard because it is rare. These bacteria causes mainly ulcerating skin infections (upper and lower extremities) and arthritis in persons who are severely immunocompromised. Disseminated and pulmonary infections occasionally occur. If worsened, the eyes will also be damaged. It seems that taking immunosuppressant medicines like steroids and other medicine for lupus made me vulnerable to the bacteria.

Entering the fourth week, the antibiotics were lessened, and prescription of oral medicine for the bacteria was done. The test results said that the spots on my lungs were slowly diminishing. Coughing became rare and blood with the phlegm was also gone. But the Cytomegalovirus (CMV) in my intestine had remission. The virus is one of the causes of the swelling of my intestines. Sometimes when it attacks, my stomach feels so bloated and it is extremely hard to move because my back and hips hurt. So, I must continue the treatment. But from this time, a lessened dosage of antibiotics.

June 23 - 29,2019

Last week was shocking,but as they say,there is always a rainbow after the rain,this week was good.

So instead of the doctor’s plan of   Friday discharge,I got out of the hospital Tuesday,June 25. The Monday blood test result was good so all my medicines will be reverted back to tablets and capsules,the doctors said that I should be under observation under 3 days but I insisted that I will go home and have self observation. We had a deal but I need to go for the out patient consultation on Friday,June 28. I was thankful that I was able to go home earlier than what have they planned. 

Business as usual,the next day I went to work already. I am so happy to see everybody,though I was sorry to made them worry. But as the saw me I got better and they were happy too. 

And another blessing came! After almost 3 months of waiting,the immigration office finally answered my petition for the extension of my visa. I got extended! So I went immediately to the immigration office to get my new Identification card. 

Friday,I went to see my doctor and the results were fine. Though my medicines increased,the laboratory test results were improving. The self injection of Benlysta still continuous. 

By the way,the medicine representative of Benlysta gave me something. Better late that never! I got this tote bag,insulated bag (because the medicine should be refrigerated),    Yellow disposal bag (used injections should be disposed in the hospital)and another set of pamphlets. 

I was able to maintain my weight this week so that means there was no edema for now though my muscles aches. I am taking pain killers so I can manage. Because of the steroid pulse I am having difficulty in sleeping even though I am taking sleeping pills. 

My new medicine dosage:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, furosemide (to make urination easier) and additional medicine for infection every Monday only. 

Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: from 7.5mg to 10mg of Predonine, 2.5 to 3 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

June 16 - 22, 2019 A week vacation?

After being free from the hospital  for about 7 months who would have thought that I had to be hospitalized again. This last 7 months as much as possible I endured and bared the pain so that I will not be admitted. But I this time last Thursday,June 20,I was rushed to the hospital. 

It started last week when I woke up in the morning I am feeling pain in my feet especially when I walk. My fingers too are swelling. But last Tuesday, even though I took pain killers,it was like it didn’t worked. The whole day my feet hurt. I felt really tired and sleepy. But I still managed to go to work.

Then Wednesday, I felt better but I am experiencing muscle cramps especially on my fingers. 

Thursday, when I woke up at around 5:00 am,  I wanted to go to the toilet but I can’t move my body. I tried hard for about 10 minutes and I was able to sit. I tried standing up but as I step my feet it really hurt I was really crying. It really felt a long way to the toilet and I had a hard time bending my knees it took me about 30 minutes for that trip to the toilet. Even though I took pain killers it didn’t work and my whole body ached. I also had fever. 

I called my friend to help me and we decided to go to the nearby clinic. But the doctor there is not my attending physician,so the clinic just called an ambulance for me and we went to the hospital to see my doctor. 

Nagatsuji Sensei welcomed me at the Emergency Room and I don’t know if we will be happy to see each other. The last time I went to the hospital I went to greet him and we were just joking about me admitted,and we didn’t expect that we will be meeting in the ER. He ordered that I have to under go blood test, ECG, X-ray, and CT scan. 

As the results came,Nagatsuji sensei decided that I have to be confined. Because according to the findings,my albumin level,body nutrition,went bad that my intestines are a little swollen which cause the edema to worsen. There is also possibility of infection in my intestines. 

As treatment my team of doctors decided that I have to receive 250mg pulse steroid,albumin and 2 shots of laysix (to make urination easier)via IV for 3 days from Thursday to Saturday. The doctors said that if the medicines are in IV,the body can absorb it quickly and the effects are greater and faster. 

I am feeling better now, the edema is almost gone and I am able to walk since Friday. I exercised in the garden. It has been a while, I missed the view.

As planned,starting Sunday,the 20mg steroids and a shot of lay six will administered via IV. Then if the blood test on Monday will have a good result,my medicines will be back to the normal tablets. I hope I can be discharged as early as Monday but Nagatsuji Sensei told me that Tuesday will be a little tight. 

I guess I will be staying here in this "hotel" until next week.

June 2 - 8, 2019

After cramming,  I finally finished reading the half part of these books and I am able to finish the midterm exam. The exam is due on June 4,but I will mail it today June 2.

It was a long time since I had the chance to eat Kentucky Fried Chicken. As expected,the menu here and in the Philippines is not the same. They are not selling rice here,but biscuit instead. It was a good thing that even though I ate this oily fried chicken,my stomach didn’t hurt. 

I got this cute towel as a belated birthday gift from my coworker. The color is really fit for the summer season.

So it is Friday and I will be self injecting my treatment, benlysta. I am a little nervous. I already took it out of the refrigerator 30 minutes before injecting. If the medicine is cold,it will hurt more when it enters the body. I injected it on my right thigh. The needle was thick so it was painful. The liquid took 15 seconds to enter my body then I waited for 3 seconds then I took the needle out.  So it just totaled 18 seconds and it was done.

This is what the spot looks like day after I injected Benlysta. It is just like a mosquito bite. I prefer this than the IV hemorrhages.

As I took the 1st injection last week in the hospital,thinking  about this week,I was feeling energized and there were no new edema that showed up. But some accumulated fats under my arms formed. It is still little but I think it will be big. It is not painful or anything it is just a lump and it is some kind of hard. 

My medicine dosage:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, furosemide (to make urination easier) and additional medicine for infection every Monday only. 

Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

May 26 - Jun 1, 2019 Happy birthday to me!

  It is my birthday and I am busy from early in the morning. I went to the immigration office to follow up my visa extension. Still there was no news and the officer only told me that the regular waiting time for now is 3-4 months. This is due to the influx of foreign workers here in Japan starting this April.

At work,I and the kids made this cake and pasta for my birthday. 

At home I ate this cake for my birthday it was delicious! 

And as a gift to myself I bought this dress and rubber shoes. I chose the shoes because the front part has a lot of room even if my foot has edema it will not be tight. It’s light and cheap. 

My coworker went to Vietnam and she gave me this beautiful pouch. This is so cute that I don’t want to use it.

I went to the hospital for my monthly check up. The statistics were not that good. The values for c3 and c4 , the score for my immune system, which supposed to gobe up went down. The albumin, body's nutrition level, went down. And the DNA, which measure the lupus activity, went up instead of going down. Well, mama doctor told me that there is nothing to worry for now. She dimished my high blood pressure medicine since my blood pressure is already stable.  I also asked mama doctor to let me take pain reliver only as need. I got my benlysta treatment changed from IV to self injection. So every friday I will have to inject my self. We will see if this will have a new effect because when I am receiving it via IV, 2 weeks after I am feeling not that  good. I was thinking that the medicine's effect is wearing off. So we will try this weekly injection. A nurse taught me how to use it. We even used a practice kit. It was so fun.

I planned to change my diet to all vegetable diet and as much as possible I don’t want to eat meat, but as a birthday treat my friend feed me Sashimi, raw tuna fish, it is one of my favorite and I can’t help but to eat. He said make my birthday a cheat day. 

There were edema in my hands and feet. I had a hard time walking some days but I managed it though.  

My new medicine dosage:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, furosemide (to make urination easier) and additional medicine for infection every Monday only. 

☀　Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

May 19 - 25, 2019

I received a gift from my co-worker. It is a cute pair of ankle socks. 

Today I got my birthday package sent by my parents from the Philippines. They sent me the LTO certification that is needed for the conversion of my driver’s license. They also sent me my favorite foods. I’m so happy.  But last week I started to try the no meat diet, but I think I will break that diet because the sardines and the corned beef look very delicious.

I had a check up with the dermatologist as referred by mama doctor.  I had my accumulated fat checked if it is really accumulated fat. Well, the doctor said that it is caused by the skin symptoms of lupus and also it may be the side effect of steroids. The dermatologist only gave me an ointment since I am taking so many medicines already. He also said that if I want I can have a biopsy, but he said that let’s wait if the ointment will have a good effect.

I got my mini face shaver which I ordered online. I will try if this will be effective. 

Since it is my rest day and I completed the requirements needed for the conversion of my driver’s license, I went to the testing center. But it was very disappointing because since my visa has already lapsed, I need to present the new ID card with the new visa. But since many foreign workers are coming to Japan, the visa process is taking a long time. I have to wait until July for the result of my application. Until then, I cannot convert my driver’s license.

Then after that, I went to an agriculture expo together with my friends. It was very amazing seeing new technology for farming. Comparing to the old ways of growing crops, nowadays it is very high end and very convenient. There are drones, computer programs which control the water system, temperature, and everything. Everyone can easily use this technology. Agriculture has become very POSH, I wish younger generations can see the beauty in agriculture.

I received these samples. These are mini tomatoes and basil seedlings that will be planted only on water. I am excited to try these if it will work.

I was so busy this week, but thankfully my body was feeling good. the edema is not that but, there are still some on my feet but it was not as bad as the past months.

My medicine dosage:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, pain killer + intestinal medicine, furosemide (to make urination easier) and additional medicine for infection every Monday only. 

☀　Noon: furosemide (to make urination easier).

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, f 1 tablet of a blood pressure medicine, pain killer + intestinal medicine, and sleeping pills #1 & #2.