So this is my medical history, It is not complete and i will be adding as we go because there is still ALOT more to add.
Ok so I have wondered greatly how to present this section of my personal history, I have tried to put it in a story form, point form, include intros and backstories. In the end I feel that this is a medical history article so I will try keep out as little non medical info as i can so here goes.
When is was quite young i would estimate between 10 and 12, Every now and then I would go to the bathroom and I would pass really dark urine. I didn’t think much of this, however after school one day my mother picked up my brother and I and took us to see the family GP, I don’t remember the reason for this, but while we were there my mother asked what symptoms to look out for, for an illness that was gong around at the time, this was something along the lines of encephalitis or hepatitis, I honestly just don’t remember.
The GP asked my mother if our urine was dark, the color of coca-cola, as this was the first indication of this disease, whatever it was.
The answer to this question was NO. this made me realize that my urine was dark and almost the color of coca-cola but it was a long time since my urine had been dark and i didn’t feel sick so I thought that i would keep quite, after all this only happened once or twice and of course i was a young and naive so i didn’t want anyone to think that i was sick.
After this day I was well aware that every now and then I would go to the bathroom and dark urine would emerge, but I was determined not to say anything and things carried on normally for awhile.
One sunday morning, at the age of 13, I woke up with a slight pain in my ear, I was not new to ear aches as from a child I had quite a few problems with my ears, tonsils and sinuses. I had already had my tonsils removed and maybe 3 or 4 sets of grommets by then. throughout the day however the ear ache got worse to the point that eventually, at about 10 o’clock that night we went to the emergency doctors up the road to get my ear checked. The doctor did all the check ups and prescribed medication for my ear. While the doctor went out to get the medication, I decided to tell my Father about the dark urine that appeared now and then and had been there for the past two or three days. Calmly my Father said we will ask the doctor now.
Once the doctor came back my father explained that i was experiencing day urine that was light brown in colour. the doctor asked me to please go to the bathroom and produce a sample for them to check. We waited a few minutes and the doctor came in and proceeded to give us the results for the urine.
He stated that the urine had excessive amounts of blood and protein in it, somewhere along the lines of 4+ for the blood and 3 for creatinine, I don’t really remember what the results were but essentially there was a lot of blood in the urine and that amount of creatinine is indicative of kidney problems, this could just be from strain or from a disease or infection that causes the kidneys to work harder, He also checked my blood pressure and saw that it was sitting over 150 for the systolic and over 100 for the diastolic, this is not normal for a child of 13.
The doctor said to my father, you need to take you son to the family GP tomorrow, to which my father replied, “ok, we will take him right after school, as my son is writing an exam tomorrow.”
The doctors reply was concise and assertive, “No Mr. Theodorou you must take him first thing in the morning, these results are worrying and your sun needs a proper checkup right away.”
The next morning we went directly to our GP and again i had to produce a sample of urine, this was the second time I ever had to do this in my life and it was also the second day in a row I had to do so. I was not impressed. After checking my blood pressure and my urine sample, our GP expressly stated that there is something wrong with my kidneys but he was unsure what was wrong, or what to do. He then told us that we had to do a few more tests and go directly to a pediatrician, and that he would be making an emergency appointment and sending the results of the tests to the pediatrician while we made our way there.
Listening to our GP we did what we were told and I went with my mother to see this pediatrician. the pediatrician once again took my blood pressure, he did this 3 times over 10 minutes and poked at the results of my blood and urine test’s, he stated that the results of these tests showed kidney issues, consistent with streptococcal viruses and that my blood pressure was extremely high (this was about 200/120). He then told us about a pediatrics nephrologist that he knew of and that he would have to get hold of to get more information about what to do with this type of problem. He then called Prof. Thompson at the Johannesburg General Hospital in Johannesburg town. they spoke for a few minutes and then the pediatrician told us he was admitting me directly in to hospital at the LinMed hospital in Benoni while they did more test and so that they could try get my blood pressure under control.
I was distraught, I was to be admitted in to hospital, i was being told i was very sick and that they were going to be doing more tests on me. This was my greatest fear and the whole reason why I didn’t want to tell anyone about the dark urine in the first place. I felt lost and didn’t know what to do.
So I was admitted in to hospital, they came and gave me a drip, this was another extremely scary prospect. They had to come take my blood pressure even hour. I was also told that I was not allowed out of bed for any reason, and not to sit up at all unless the nurses lifted the bed slightly, even going to the bathroom I had to buzz for the nurses so that they could take me to the bathroom with a wheel chair. The bathroom was across the hall and they would not let the walk there, all because of m extremely high blog pressure.
On a side note this reminds me of one of the days about 5 days later that i decided i would just got to the bathroom myself, I made it there very easily and all I could think was that the nurses were being funny. I started passing urine and next thing i knew i was being woken up from the floor, I had passed out. I didn’t try go to the bathroom by myself for the rest of my hospital stay…
I was in hospital for about 8 days until they managed to get my blood pressure under control. During this time they did sonar tests, blood tests, X-rays and urine tests. Eventually they allowed me to go home for a day and then I was to be admitted to the johannesburg General hospital for a kidney biopsy. This hospital experience is still one of my worst, not in terms of the operation but because of the actual facility and because of the other pediatric patients that were there with kidney disease, most of these patients were born with kidney disease, little Kabosi was the most worrying of all these children. I was only in this hospital over night as they did the biopsy the next day and allowed me to go home.
From there there was a wild flurry of events, this all happened so fast that I can not give you specifics, but here is as close to a run down as i can give you.
I ended up finally visiting Prof. Thompson, he was a nice old man with very ind mannerisms, we found out in later years that this man was THE best pediatric nephrologist in south africa.
Prof. Thompson explained to us that i had full blown kidney disease, and that this was not a normal type of kidney disease, like the streptococcal kidney disease they were oping i had. Essencally streptococcal viruses are throughout or ear infections that cause your kidneys to take tremendous strain, and this is normally treatable, although if not treated correctly it can cause permanent kidney disease. Prof. Thomson then continued t explain that the disease I had was called Membranoproliferative glomerulonephritis (MPGN) Type 3. This is a rare kidney disease that doctors can not tell where it comes from, It is also a type of kidney disease that is not curable. Prof. thomson went on to explain to me as simply as he could so that we I understand, that I would eventually need to have a transplant, but that we could try and make my kidney’s last as long as possible. He also explained that the longest known case of MPGN to be diagnosed to be suppressed before kidney transplant was 18 months from the general time of the diagnosis. So at the age of 13 I was told that I would have to have a transplant within the next 2 years and that was nothing I could do to fix the problem I had.
throughout the years we have learnt more and more about kidneys. so here is a but more information we got from people like Prof. Thompson.
Kidneys regulate the temperature in your body, they also help regulate your blood pressure. when your kidneys do not function correctly, it raises your blood pressure. the higher your blood pressure the less your kidney is able to heal itself and the faster your kidney can deteriorate, which then causes your kidneys to push your blood pressure higher, and so on and so forth. Therefore it is quite a vicious cycle. We were told that the only other solution to transplant was to be put on dialysis until such time as we could get a kidney for transplant. Prof. Thompson did not stress too much on these points, instead he focused on helping us prolong the use of my kidneys for as long as possible. in order to do this he explained how important it was to try control my blood pressure, he spent some time explaining to us the importance of the medication they were going to put me on, And this was a lot of medication, he also explained how the medication effects your body and what some specific side effects were. It was explained to us that i would have to go under a diluted form of chemo, this treatment would be administered intra-venously, over a 3 month period once a month. My father asked if it was not possible to kill off the disease completely with a stronger form of this treatment, the answer to this was yes but not without damaging the rest of my body in much worse ways. It was explained further what the blood and urine tests were for and how they reflected my kidney function.
Ok so there is still more to go, please bear with me.