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[Al]

I can tell you I just got done with a two week snowmobile trip 6 weeks after chemo and fatigue was inevitable, 2000 mg of mycophenolate mofetil (cellcept), and 5mg of prednisone a day and I can feel the lungs getting stronger every week.

A question, Marcus: If you are down to 5 mg prednisone four months after diagnosis, what was your initial dose?

Al

[Marcus]

I was intubated when I was first put in the hospital, but my wife said the gave me a thousand mg the first day, she isn't sure if it was prednisone but it was a steroid. Than it was 100 mg a day until I got the tubes out. Then it was 80 mg while I was on cytoxan.

[drz]

I was intubated when I was first put in the hospital, but my wife said the gave me a thousand mg the first day, she isn't sure if it was prednisone but it was a steroid. Than it was 100 mg a day until I got the tubes out. Then it was 80 mg while I was on cytoxan.

Wow that is a fast taper. Usually they 1000 mg of solumedrol which equates to about 1650 mg of pred for initial dosage when you are intubated. How are your lungs and kidneys now? Great recovery--congratuations. You must be young strong and very physically fit and now ready to enjoy life again.

[Marcus]

At Drz, my lungs were back to normal after 30 days of my intubation, and my kidneys are what took the longest and they are now back to normal as of feb. 19th. I am 39 years old but have always had a very physically active life and I had never been sick up until Weggies hit me and I set goals that my doctors said would never happen. I have reached all my goals but one, the last one is that I will be off my preventive medications by my one year anniversary! Nov. 1st 2012!

[drz]

At Drz, my lungs were back to normal after 30 days of my intubation, and my kidneys are what took the longest and they are now back to normal as of feb. 19th. I am 39 years old but have always had a very physically active life and I had never been sick up until Weggies hit me and I set goals that my doctors said would never happen. I have reached all my goals but one, the last one is that I will be off my preventive medications by my one year anniversary! Nov. 1st 2012!

You sound like a walking miracle that they should study extensively and try to clone. Have any of the doctors mentioned writing up your case history as a study for medical journals? Could you ask your treating doctor about this. Such great results certainly need to be studied and hopefully replicated for others in the future. Are you in the GPA longitudinal study at present?

[Marcus]

I don't know that any of them are writing about my case yet, but I will the next time I see them. I am not currently involved in any study at this time. I have been taking a lot of vacations and living life.

[Al]

I don't know that any of them are writing about my case yet, but I will the next time I see them. I am not currently involved in any study at this time. I have been taking a lot of vacations and living life.

Vacations and living life are great things to do, Marcus. But there are many unusual things about your case, and I think a case study would be beneficial for a lot of clinicians. To begin with, there is the ultra-rapid diagnosis, which, while great for saving major organs, is exceedingly rare. Kaiser is, to its detractors, just factory medicine. But what it does have going for it is salaried doctors--just like at the Mayo Clinic. So doctors can go at a problem as a true team. This, I think, is desirable when there are a lot of widely spread dots to connect: Parallel views on a common set of dots method produces better results than serial views. Then there is the aggressive treatment plan, and your ability to handle it. It is an amazing story that should have have a wider hearing.

Al

[germaine]

Hi Skipper, I sent you a long reply to your enquiry about doctors and contacts in the Toronto area. I hope you got it. Germaine

[skipper]

No Germaine, I didn't get that response. Perhaps I am not looking in the right place.

[onatreetop]

Hi skipper! just reading up on you and your story. As many have said already you are not alone in this rare view of life that we come to share. My first 3 monthes all the docs had me scared sick. lol.....But the path and roller coaster of the giant speed bumb in life we know is weggies gets much better when we are armoured with eachothers understanding of eachother and the beast of weggie. We are all very different yet the same. i was in that horrible dark tunnel of doom then found this special place here. Gathered info and knowledge and became much more sure and in control of the understanding without being scared out of my skin every doc visit. Everyone here, no matter how near or far have saved my sanity and life. Everyday is different and the way i see things is very different. It does change your life and others around you. But everyday I wakeup and standup without falling on my face or behind and i am ready and willing to take on whatever challange or truck that hits me....only because i know tomarrow is another day. Because I am 44 yrs old with 3 teenagers and a 9 year old i wasnt able to enjoy my time with them when i was in the dark. now i look at everyday as a gift and challange. i decided early on after the shock that instead of crying and letting the pain and changes i had to except bring me down i started laughing instead. yes some people think i am crazy but i have never been whatever normal is? that least i dont think so nor my offspring

I also want to thank you for your support when things get to much and i trip and begin to stumble astray. We are all here for eachother. thank you Andrew! in so many ways!


Treetop