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Hi Everyone
I am from South Africa and I would like to share my sons story with everyone because he lost the battle with Wegners.
Losing a child is the worst pain that anyone can experience and it should not be that way, it should be the children burying the parents, not the other way around.
My son Brandon was the second eldest of 5 children. He was a healthy 22 year old who had an absolute passion for cooking and was working for a catering company as a trainee chef. In the beginning of November 2012 he developed flu like symptoms but was also coughing up speks of blood. I took him to our doctor who diagnosed flu and said he most probably tore something in his stomach from the coughing and that is where the blood is coming from. The doctor prescribed antibiotics and I took him home.
The antibiotics started working and he started feeling alot better but the cough still persisted and there was still a bit of blood coming up. I said to Brandon that I need to take him back to the doctor for another check up, but Brandon was a very dedicated employee and told me that he was feeling ok and he would go to the doctor when he went on leave in December. He used to sometimes work very late at night and on the night of the 6th December 2012 he came home at 11:30pm and his mouth was covered in blood. I was sleeping at that time and my eldest son and daughter were waiting up for him. They asked Brrandon what is the matter and he said it was the blood he was coughing up but he was fine. My daughter told me about it as soon as I woke up the next morning and when I went into his room he was as white as a sheet. With all this he still wanted to go to work and I said to him Brandon you cant and I am taking you to the doctor now.
I took him back to our doctor and this time they took x-rays of his lungs as well as Urine tests and blood tests. The doctor took one look at his x-rays and said that it looks like a severe case of pnuemonia and he had protein and blood in his urine and his blood count was right down. The doctor told me that he has to be admitted into hospital straight away. Being a single mother with 5 kids medical aid has been out of the question so the doctor wrote a referrel to Johannesburg hospital who is suppose to have the best doctors and professors. I took him straight into casualty. Now it got very frustrating for me because I kept on getting kicked out because he was 22 so technically an adult but still my child.
The doctors at the hospital took one look at his x-rays and said that they don't correspond with his vital signs which were aall normal. Eventually at 10pm that night they admitted him to the observation ward. I remember driving home that night at about 11pm with my 17year old son thinking ok he is in hospital everything is going to be fine and he will be better. I went back to the hospital early the next morning to speak to the specialist in the respiratory departement. He informed me that they are going to start testing for TB and if the results are negative they will start investigating further but he needed a blood transfusion and that same day he was given 2 pints of blood. Then all the TB tests started, he was transfereed out of the observation ward and into the lung ward.
During the course of that week all kinds of TB tests were done and everything came back negative but they were given him antibiotics through a drip. Brandon was looking much better and was even exploring the hospital with some friends he had made. On the Friday, exactely a week after he had been admitted, they were going to discharge him but they did a CT scan in the morning and the results came back the same day showing a seriious problem at the bottom of his lungs and there was still blood lying there. Needless to say they did not discharge him because there was no infection anywhere but what he had was an auto immune condition. He was devaststed because he though he was coming home and the tears just ran down his cheeks. The specialist informed me that day that they are going to call in the kidney doctors as in most cases with auto immune condtions the kidneys are also infected. On the Saturday the Kidney doctors saww him for the first time and more tests started because now it had to be determined what auto immune condition he had.
From the time I heard auto immune my sister, Nikki and I started doing our own research. we googled all his symptoms under auto immune and came up with Goodpasture syndrome which is a pulmanary renal condition whereby his immune system is creating autobodies that are attacking his lungs and kidneys. This syndrome is so rare that it only affects 1 in a 1 000 000 people. The result is kidney failure and haemorraging in the lungs. On that Saturday 15th December 2012 his 4 brothers and I went to spend the afternoon with him in the hospital cafeteria and that was the day he started vomiting and from then it was just downhill. Brandon ordered fish and chips at the cafeteria because he loved fish, but that was to be his last proper meal. On the Tuesday he was transfered from the lung ward to the renal ward because I was told they were beter able to deal with auto immune conditions. A kidney biopsy was scheduled for the Wednesday so that they could determine exactely what it is. But in the meantime his kidney function was getting worse and he kept on saying to me "Mommy I wasnt this sick when I came into hospital, the hospital is making me sick" I begged with the doctors to please start treatement so long as they were telling me the results from the biopsy would take 3 weeks because of the holiday season. They said they couldnt because of the side effects of the treatement. On the Thursday his kidneys failed and they had no option but to start treatment.
He was put into an isolation ward because his immune systemn had to be suppressed completeley and plasma exchange started the next day. It was heartbreaking to see him with all those drips and big needles in his legs for the plasma exchange and dialysis had to also be done. This is a kid whosee last injection was when he was a baby and now he had to endure all this. On the Sunday when we went to see him he was complaining about shortness of breath. I told the sister about it before I left but that night I phoned Brandon as I did everynight to say goodnight and he said Mommy I cant breath. I asked him if he had called a nurse but none of his bells were working. I phoned the hospital and said to them that they must please go and check on him because he cant breathe. The next morning, the 24th December 2012 I spoke to his doctor and she said theshe is trying to get him into ICU but there are no beds available but she is monitoring him as he has taken a turn for the worse and is now on an oxygen mask as his lungs have started heamorraging. I will never forget that look on his face when Nikki andd I walked into his ward that day at visiting time, he was so scared. We tried to reassure him and kept on telling him he was going to be okay. All he could eat at that stage was Marie Biscuits because nothinnng else would stay down. On Christmas day the other children and I went up to see him and we still toldd him that we are waiting for him to come home before we have christmas.
On the 26th December 2012 at visiting time I walked in on them ventalating him. I freaked out because this was not suppose to happen there should of been improvement by now because this was now the 7th day of treatment. By now the Prelimanary biopsy results had come back to indicate that it was definateley a pulmanary renal condition but there are a few others besides Goodpasture syndrome that falls under that condition. They had sedated him and suddenly there was a bed open in ICU. I cannot describe the pain that I felt seeing my son like that.
The next day when we went to see him he was no longer sedated but they were giving him morphine because of the ventilator. So because he could not speak to Nikki and me he showed that he wanted to write. We got him a pen and paper and the first thing he wanted to know is why is he on the ventilator. We explained it to him as reassuring as we could because the doctors were not telling him. He wanted to know everything that was happenning to him and he looked so scared. His hands were tied to the bed because he had tried to remove the ventilator twice. He kept on asking "am I going to be okay" and those words ring in my hears permanently at the moment.
At this stage his brothers and sisters did not want to go into his room because they could not bear to see him like that. We continously wiped his face with a cloth because he was hot and eventually I bought a fan and took it to his room to try and keep him cool especially when we weren't there. His treatement carried on and he was still getting plasma exchange and dialysis but there was just no improvement and his lungs were still filling up with blood. The next day his two sisterss said that they want to see him. When my eldest daughter went in, Candice, he took her hand and wrote on his paper "please can I have a hug" The tears just filled her eyes and she had to leave the room. but she didn't know that would be the last time she would hug her brother.
When we went to the hospital on the 30th December it looked like he had been sedated. It had got to the stage where i was scared to go to the hospital beccause I was afraid of what I would see. I knew that he wasnt doing well because I had phoned the hospital in the morning and they had told me that. I asked to speak to the ICU doctor and asked if he had been sedated and he told me no that was the state he was in. He had slipped into a coma and he said I must prepare myself because it can go either way now. How do you prepare yourself for something like this and I told him I won't he will get better.
That night I did not sleep it was like I was waiting for the call from the hospital and I kept on phoning every hour. at about 12:30am my cell phone rang and it was Nikki. The hospital had called her, as they had Nikki and my contact no's, they told her we need to come to the hospital as he is getting worse. We got there at 1am and my mom, Nikki, my other sister Jenny and I sat at his bedside. I didn't wake his brothers and sisters up so they did not know that we were at the hospital. We decided to send someone to go and fetch them so that they would have a chance to say goodbye. Brandon's blood pressure was going up and down and we were still praying for a miracle. When the other children arrived at the hospital I went outside the ward and told them this is the chance to say goodbye to their brother. Candice, through her tears, said to me "Mommy just take him home" and I so wish I could of just pulled out all the tubes and needles and taken him home and everything would be back to normal. We sat at his bedside telling him how much we loved him and 4:45am on the 31st December 2012 Brandon passed away.
I have never felt so much pain in my life. In two months he had gone from being a healthy 22year old with so much ambition in life to being here no more.
I had a lot of questions that had not been answered by the doctors and I put in writing all the things I needed to know as to why my son passed away. The final diagnosis from the kidney biopsy only came back on the 12th January 2013 and it showed that it was not Goodpasture but Wegeners Granulomatosis, which is also a rare condition and is also irregular antibodies but they normally attack the upper respiratory tract first which did not happen with Brandon. When I queried this with the specialist he said it can happen that it will only attack some organs.
I am not sure how to carry on with life at the moment and I know that our lives will never be the same again. I am trying so hard to still be there for my other children but I do not know how to comfort them because I cannot tell them everything will be ok when I know that it never will be again.
Linda
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