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andrew
05-18-2008, 12:43 PM
**Trev's story - relocated from the original site by Andrew**

Diagnosed February 2006

To introduce myself, my name is Trevor. I am now 16 years old. I never thought that I would make it to 16, but I am still here. I am an Aussie living in rural Queensland. I have been healthy and fit all of my life, until about September last year. I had limb pains, sort of like rheumatism, but the pain and swelling never really went away, just moved around from joint to joint, elbows, ankles, knees even my hands and shoulders. I also suffered from nose bleeds and didn't really take much notice of that. I went to a ENT specialist about my hearing as I was losing it. They put it down to a middle ear infection and that I should have a grommet put in. My family was organizing that, long waiting lists here in the Health system for any elective surgery. But my limb pain was getting worse, over the time my mum had taken my to quite a few different doctors, they all said it was growing pains, mum wasn't happy with that answer. Early this year (2006) I was bed ridden, with fever and pain. I can remember saying that 'if this is living with growing pains, I don't want to live.' In desperation my mum put me on a commercial flight and took me to Brisbane. After seeing doctors on arrival, I was diagnosed with Wegener's Granulomatosis. That was 9th February 2006.


The rest I don't remember all of it, but here is an outline of what happened.

February 2006 - Respiratory difficulty, bleeding from the lungs, high fever, swollen limbs and associated pain. Hospitalized, started treatment, which included a course of daily Plasmapheresis for 7 days.

March 2006 - still in hospital, developed blood clots in my leg which went to my lungs. So I was put on blood thinners. Kidney function started to deteriate, had a kidney biopsy. Finally got to go home. But on medication of course.

April 2006 - Flew back to Brisbane by Royal Flying Doctor Service with severe gut pain. Next day had surgery where they removed some of my small bowel, due to Wegener's had come back attacking my organs. Recovering from op, treatment started again.

May 2006 From nowhere, cerebral hemorrhage, immense headache, back to HDU. A week later, stroke. No use of arm or leg on left side. Not good. After that I don't remember much, except I was tubed (resporator) for a day or two, but remember having plasmapheresis each day. I also had nearly daily angiograms, to see what was happening and to inject something in there to open up the blood flow. They found another vein at risk of bleeding and after much discussion they gave me the option to have it clipped as it could go anytime or never. What a choice, damned if you do, damned if you don't. I had the nero surgery. Pretty risky stuff. I was worried that I would end up, well not right. But I regained movement and strength in my arm and leg. I eventually got out of ICU, HDU and after about another week, I was let out of hospital to see how I went.

June 2006 So I stayed in the hospital grounds at Ronald McDonald House. I had daily visits for appointments and treatment at the hospital, but I got out a bit in a wheelchair. Went to the movies, spend some money, what I hadn't done in months. After a couple of weeks I was able to go home. But only for 10 days as I had my oncology appointment for my monthly cyclophosmide dose, and doctors visits.

July 2006 Home, great, I needed to go back to work. So I did, I have the best boss, not that the doctors probably like it. But I got so bored, at least at work I see other people. I need to start living life again. Mind you at times I think I may have been better off dying. End of problem. Yes, I get frustrated with the whole thing. Why me? Anyway...

August 2006 Return to hospital oncology appointment for my monthly cyclophosmide dose, and doctors visits. Approx 3-4 days away from home. My mum comes with me of course. I can't remember where and when I have to be anywhere, she does all that. Actually she stayed with me all of the time. Back home, going to work again. I take each day as it comes. Apparently, I am in what they call 'remission'. Some days I get very tired. Next hospital visit mid September.


I have created a BLOG to keep things up to date

Previously I had this on a website, this is the link, but it does not seem to load properly at times, so I was recommended to use this free service. Thanks to Blogspot, this makes it easier for me to enter when I want to say something. I will no longer be updating there. Here is where I will when I can, or feel like. I feel like I am talking to myself. But maybe this will be a good thing to look back on, if not at least I left my footprint on the internet.


I don't know how long I will be around for, so it is easier for me.

Trev's new Blog is here (http://4trevsplace.blogspot.com/).

Cathy
09-26-2008, 11:02 AM
Thank you Andrew for posting my son's story here.

andrew
09-26-2008, 08:28 PM
Hi Cathy! How's Trev doing? I see the last post on his Blog was a while ago.

andrew
09-26-2008, 08:51 PM
S'ok...just read your other posts. I'ma bit tired at the moment :)

Trevor Roberts
11-05-2009, 10:11 PM
Wow i just joined :D ill have to update my blog more often :) nd get back into forum's n stuff .thanks for posting my story andrew :D

andrew
11-05-2009, 10:34 PM
TREV!!!! Long time no chat mate, how's the world treating you??

Doug
11-06-2009, 06:04 AM
Trev- Glad to see you aboard and thriving! I started reading your blog, was fascinated, see real value to it for new weggies (especially people diagnosed in their teens and early 20s), and will start up again after I get back from volunteer work at the local history museum, picking up my kitten at the vet's (spayed yesterday), and a visit to my mother at the care center. Talk about frustration! I need to go through today's other posts to see what I can add before I go to the museum, but I just want you to know how much I appreciate the honesty and thoroughness of your blog. It will help others with their WG. Good job! (...and I'm only up to prom night!) I do know that the one point most of us will pick up on is that you are the only weggie we know who took Prednisone and lost weight!

(I went back to read the blog, finding myself with a few extra minutes before I go, and found I was very nearly at the end! I finished it. I hope Trev choses to continue with it as it does have value beyond a simple blog! I copied the link over to another thread where two mothers with teen weggies are just learning what WG involves.)

Thanks for bringing Trev's blog to us, Andrew! Made my week.:)

katwoman
11-06-2009, 06:47 PM
Hey Trev, nice to hear another aussies story, I so can relate, made me smile at the point when i read 'damn if you do and damn if you don't' I too had some of those moments with WG.
Wishing you all the best for the future....

Cathy
09-06-2010, 01:22 AM
I guess it takes shock factor to come back. Oh yeah, I am Trev's mum. Trev has had a torrid time of late, I hope he will on day start updating his blog. Hard for him to focus on what he really wants to just go away.

We have just returned from Royal Brisbane Hospital, there for a few weeks. Sad fact is Trev's kidneys have given up the race. Biopsy in Nov last year told the story. As explained by docs, he had the kidneys of a 70 year old. But the sudden loss of the last 30% happened over a few weeks. One has to ask the question of whether it was stress, depression? No one will ever know for sure. The fact remains. Dialysis for the rest of his life. This is just another bum deck of cards as he sees it. Three days of every weeks lost. The nearest facility is 140 klms away, a regional hospital, so it an hour and a half drive (in best conditions) there and back. Plus todate half of the dialysis has not been plain sailing. This hospital has no idea of what they are dealing with. He is a complicated 20 year old, living for each day as it comes.

Jack
09-06-2010, 02:35 AM
Hi Cathy,
The sudden loss of remaining kidney function is pretty usual as far as I'm aware, it was what happened to me and was what I had been told to expect. I then went onto dialysis for 18 months which was not the best of times if I am to be honest. Some people react better than others and I never really felt well, I was using CAPD exchanges four times a day, but the same may well have been the case if I had been on Hemo. The dietary requirements were difficult for me too, but it is important that the whole process is handled correctly to get the best out of it and to avoid problems. I can see this being a potential source of trouble for a young person if they have not taken the whole situation on board.

I was then lucky enough to receive a cadaver transplant which must have been a good match because it is still going strong 20 years later. It was the best thing that ever happened to me and I am forever grateful to donor and family. Thank You whoever you are! :) The drugs required to keep the transplant in check are the same as those required to treat Wegener's so having the two together did not present too many difficulties.

Hope all goes well for Trev. Living each day as it comes is not a bad way to handle this situation. I call it living in the present although you always have to keep half an eye on the future.

pberggren1
09-06-2010, 02:40 AM
Oh Cathy. You must be feeling just hopeless right about now. I can't imagine how Trev feels. Tell him to come on the site and check us out. We are not that scarey. Are you guys on Facebook at all? Try and stay positive. I know that is very hard.

God Bless,
Phil Berggren

elephant
09-06-2010, 06:32 AM
I was 24 years old when I got my kidney. I know it is tough and scarey...plus not feeling good at all. I think I slept 20 hrs a day.

Sangye
09-06-2010, 12:38 PM
Cathy, I'm so sorry to hear Trev is not doing well. Like Phil said, it'd be great if he can come on the site and talk with us. Hugs to him and to you.

jola57
09-06-2010, 12:47 PM
Cathy, i am sorry as well about Trev. Please have him read Jack and Elephant and other sucess kidney transplant stories so that he can see that here is hope and thing will change for the better