I was diagnosed as IgA Nephropathy(IgAN) after kidney biopsy on late August.
I’m not sure whether it is good or bad.
I don’t feel anything.
IgAN is a kind of hidden disease.
I found an article, « Overshadowed, Kidney Disease Takes a Growing Toll« ,
which says ‘chronic kidney disease is often asymptomatic
until its later stages’.
This is the same as me.
According to « http://health.nytimes.com/health/guides/disease/iga-nephropathy-bergers-disease/« , this disease’s symptoms are as follows.
(1-1) Bloody urine that starts during or soon after a respiratory infection.
(1-2) Repeated episodes of dark or bloody urine.
(1-3) Swelling of the hands and feet.
(1-4) Symptoms of chronic kidney disease.
And Accorindg to « http://www.mayoclinic.com/health/iga-nephropathy/DS00856/DSECTION=symptoms« , this disease’s symptoms are as follows.
(2-1) Cola- or tea-colored urine(caused by red blood cells in the urine.)
(2-2) Repeated episodes of cola- or tea-colored urine, sometimes even visible blood in your urine, usually during or after an upper respiratory or other type of infection.
(2-3) Foam in the toilet water from protein in your urine.
(2-4) Swelling (edema) in your hands and feet.
(2-5) High blood pressure.
(1-1), (2-2), (2-5) symptoms are true in my case.
But, who notices?
Regular health checkup is the best way to find out.
Proteinuria and hematuria were found in my urine 6 years ago, 2007.
I was handed down a medical referral letter at that time.
After then, I regularly go to see my doctor every 3-4 month.
My doctor kept to recommend I take kidney biopsy.
I kept to turn it down but I finally made up my mind to do.
First of all, I’m already 40 years old.
Second of all, I’m afraid of dialysis in the future.
On top of everything else, some cylinders are found in my urine sediment.
I cannot accept more deterioration in my kidney function.
With the present-day medicine,
we don’t know what is the cause of IgAN.
But, there is a hypothesis.
IgA(immunoglobulin A) is known as a kind of antibody.
IgA protects your body from foreign substance like viruses.
In my case, I produce much IgAs as usual.
Excessive IgAs attack my kidney.
The most troublesome issue about IgAN is incurable disease.
There is no proven treatment.
But, in Japan, there were investigation results that combination treatment of tonsillectomy and steroid pulse might be effective.
My doctor recommended this combination treatment.
I made up my mind to take tonsillectomy as my first treatment.
Day 0 – Oct 20th(Sun), 2013
On that day, I was hospitalized. I had nothing special to do.
I was there just because my doctor easily make sure
I properly spent a day prior to the operation on the next day.
I finished my dinner around 6:30PM.
After then, I was not allow to have any food and drinks
besides 2 bottles of isotonic drink.
This is because my stomach has to be empty for the operation.
Day 1 – Oct 21th(Mon), 2013
I didn’t get nervous about the operation.
I’ve already read lots of support group sites and blogs: « Yet Another Bitter Infertile« , « Tonsillectomy Recovery Journal« .
I knew what would be going on.
I was called to go to an operation room at 10:30AM.
I changed my clothes to a patient gown and lay down on an operation bed.
My nurses set up intravenous drips for general anesthesia.
When my doctor set up electrocardiogram apparatus, I said to him.
Me: « I’m ticklish. »
Dr: « I’m going to tickle you more. »
My doctor recklessly put a bunch of ends of electrocardiogram apparatus on me.
Me: « Tickle. Tickle. »
I twisted my body.
Dr: « Are you getting sleepy? »
Me: « No, not yet. »
A few more minutes later, my doctor asked again.
But, I didn’t feel anything.
I closed my eyes to pretend to be sleepy.
My doctor called my name.
It seemed the operation was already done.
I asked the time. It was around 1:00PM.
I slept well for about 2 hours.
The operation was done for a fleeting moment for me.
I felt pain in my throat like getting a cough.
I swallowed my spit to ease hurt.
Dr: « Don’t swallow, or you feel nausea. »
I wondered « Give that advise first. »
Shortly after, I felt vomiting but managed not to do.
My nose were stuffy due to inflammation after surgery.
There was no other way to breathe with my mouth which stimulated saliva gland tissue.
I kept to cover my mouth with tissue and spit bloody saliva in it.
My nurse asked me that I needed pain relievers.
I didn’t ask even just 1 pill.
I felt this pain was so much less than the pain after kidney biopsy.
I was not allowed to get any food until the next morning.
In short, I didn’t take any food for an one and half day.
It was too painful to eat.
I wouldn’t do, if allowed.
It was hard to drink water as well.
Intravenous drips for nutrition were set up.
I’m not sure, but I didn’t felt empty nor thirsty.
The most bothering on that day is to call my nurse
to get on a wheelchair for toilet.
I kept to say, « I’m OK. No need wheelchair. »
But, they didn’t give me permission until the next morning.
Day 2 – Oct 22th(Tue), 2013
On that day, I was first allowed to have some food after surgery.
I wondered all foods might be fluid diet.
But, unexpectedly all foods was solid diet except rice.
I had look-alike foods everyday util out of hospital as follows.
- Simmered chicken, carrots and onions with ketchup
- Boiled Chinese cabbage
Some blogs says it hurts more when eat and someone might have taste disorder.
So, I was afraid. But, it was over-worried for me.
It was not so much painful.
Plus I could feel taste.
I put a bit of food into my mouth and swallowed slowly after well bite.
It took around 35 minutes to finish.
I was pleased to be unlinked with an intravenous drips wheeler after breakfast. I felt free, even though an intravenous drips catheter was still inside me for antibiotic which is necessary 2 times in a day.
- Simmered pork, carrots, green peas and potatoes
- Boiled Chinese cabbages
- Japanese broth
- Orange sherbet
It took around 30 minutes to finish.
- Fish broiled with soy sauce with green beans
- Boiled spinach
- Miso soup
It took around 25 minutes to finish.
I was getting much easier to eat.
Plus I made a breath through my nose, as long as I stood up.
Day 3 – Oct 23rd(Wed), 2013
I found scars on the both edges of my mouth and 5 blood blisters on my tongue in the mirror on the previous day.
According to my doctor, my mouth is small as usual, so my mouth was opened beyond limit.
Plus my tongue is bigger for my mouth, so operation apparatuses hurt mine.
My throat was much more painful than my mouth and tongue, so I didn’t notice how painful util the previous day.
But, I surely noticed these pain on that day.
This mean my throat got more healed.
I had been longing for this evening.
This is because I was supposed to be released from intravenous drips.
But, my expectation was ruined.
My doctor said to me that I was prone to be infected, so 2 days more antibiotic was necessary for my safety.
I could make a breath through my nose, when I lay on my shoulder.
The rest of my breath trouble was that I had to make a breath through my mouth, when I lay on my back.
Day 4 – Oct 24th(Thu), 2013
I got the knack of how to control the flow of intravenous drips.
They fall down slowly when I bend my arm,
while they fall down quickly when I stretch my arm.
The quickest way is that you stand up and leave your arm to the gravity.
Day 5 – Oct 25th(Fri), 2013
My scars on edges of my mouth and blood blisters were perfectly healed.
As for taking time to have meals,
I was back to normal on that day.
But, I intentionally ate slowly.
This is because meal is one of my few fun in hospital.
I asked my doctor I could be out of hospital on Saturday or Sunday.
But, my doctor told me that I had to be in hospital until Monday.
I was very disappointed.
I pumped my fist in the evening.
I was totally released from intravenous drips.
Day 6 – Oct 26th(Sat), 2013
I challenged to gargle and gulp water.
It still hurt but was almost OK.
Day 7 – Oct 27th(Sun), 2013
Nothing special happened about my symptom.
Day 8 – Oct 28th(Mon), 2013
I was out of hospital.
The total cost of hospitalization was 87,440 yen.
It’s almost the same as the cost of hospitalization for kidney biopsy which is 85,460 yen.
Day 9 – Oct 29th(Tue), 2013
I changed fluid diet to solid diet.
Day 10 – Oct 30th(Wed), 2013
I tried hot meal.
My respiration was back to normal.
I could make a breath when I lay on my back.
Day 21 – Nov 10th(Sun), 2013
It still hurt when yawn.
But, it’s just a matter of time.
I rank my pain on a scale 0 to 100.
|1||100||Tissues are must-have item for bloody spit.
I couldn’t make a breath through my nose.
|2||30||I could make a breath through my nose, when I stood up.|
|3||20||I felt scars on my mouth and blood blisters on my tongue were more painful than my throat.
I could make a breath through my nose, when I lay on my shoulder.
|5||10||I could eat fluid diet as quick as usual.|
|6||5||I could gargle and gulp water.|
|10||3||I could eat hot diet.
I could make a breath, when I lay on my back.
|21||1||It still hurt when I yawn. But, I can say I’m almost healed.|
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