Hello from Manitoba, Canada

[tmkd]

Hello everyone! I just found this support forum the other day and have found it very helpful so I thought I would talk a little about my experience with this disease so far.

I was diagnosed with Wegeners in April of this year 2 months after having my first child with my wonderful wife and 3 months after purchasing a new house (I don't suggest moving while your wife is very pregnant, lol). Started CYC and pregnisone immediately after and did not respond well to them. I was in the hospital for most of the summer April - September. I was switched from CYC to Rituximab in August which after 4 treatments put my Wegeners into remission; About this time I also started Dialysis. While in the hospital I went through several surgeries for PIC lines, ulcers, etc. 10 Plasma transfusions, several units of blood, gained a significant amount of weight, lost enough muscle mass so that I couldn't stand up and had to learn to walk again (oh the things I took for granted) with physiotherapy, was in ICU for 3 weeks, chest infections, pneumonia and a slue of side effects. Miserable. Through all of that I would say the worst was barely being able to see my wife and son as the hospital I was in was an hour away from home in another city and well, we had a newborn so visits were difficult.

I'm happy to say that I have a more positive outlook on life now and am very glad to be at home with my wife and son now though I am weary of what the future holds for me.

Thanks for reading my rambling. I hope you all have a great day.

[Dirty Don]

Welcome Thomas...glad you're already gleaning info from the site! Best place to be when in need of info, caring, support, etc. As for your experience, sounds very familiar...spent some time myself in ICU tho I was hardly conscious for most of it! LOL! I remember so well when rehab peeps made me try to stand up...couldn't do it...WHAT! I am very glad you and the family are doing well now! So cool to have a babe in the household! Do not be leery or weary of your future...it is bright, just gonna be a bit of an extra ride for you with WG now...but you can get it done...now it's all about your family - you can do it!!! Best of luck!

[Pete]

Welcome, Thomas!

As Don said, you've come to the best support forum on the web. You'll get good advice pretty quickly here.

Phil Berggren, one of the forum's gurus, will probably chime in shortly. He's from Swift Current, SK, and seems to have a really good handle on the best wegs docs.

About all I can say is that it's pretty likely you'll lead a near normal life with this dumb disease. I just follow my doctors' advice (and orders) to take my meds and live life to the fullest extent possible.

Good luck and better health!

[pberggren1]

Where are you located tmkd? Are you near Winnipeg?

[tmkd]

Thanks for the feedback! It was so weird not being able to stand up when the physiotherapist came by to see me. I think i scared everyone in the ICU because when she asked me to stand and I was having trouble just moving my legs she told me to just sit back and just relax and try again tomorrow. All i did was yell nope through the pain and I did stand up but that was enough activity for that day, lol.

Yes, I'm in Selkirk MB. My rheumatologist is at Health Sciences Centre and my kidney stuff is handled at Seven Oaks General Hospital.

[pberggren1]

Sounds like you are in good hands then. Is your Rheumy your quarterback? How many Weggies does your Rheumy have?

[tmkd]

She's ... ok. I honestly had no idea why I was assigned a rheumatologist until I left the hosipital; didn't know what they did! Learned a lot about the medical system and how expensive Retuximab is! Not sure about how many others she looks after but I have an appointment tomorrow and that's on my list of questions.

[pberggren1]

Just remember you are the boss and have to take charge. You have to learn about this disease and medical processes in the body and medical procedures in Canada and Manitoba and with medicine in general. At the end of the day you have to become your own best doctor. Keep your doc on her toes and always bring notes. Keep a journal, and write things down and questions and things you have for her right away. Keep it at your side at all times. The key thing is if your doc is a teaching doc and what her training and experience is. That is the main thing to ask her. If a doc has good training in a major center like Toronto and keeps teaching as well with a university those are the key things. And of course a good sized roster of Weggies. I would say at least 15 or 20 would be minimum to have.

[vdub]

If you have android device, either tablet or phone, then you can keep a journal on it. I use a free app called Diaro. Each evening I enter my BP and how I felt for the day -- both good and bad. I also enter any drug changes, etc. Nothing long -- each entry is very short.

Also, when I go on a doc visit I record it with a free app called SmartVoice. That way I can go back and review anything I missed.

[Alysia]

Hi Thomas,
welcome to the forum. It must have been so tough to be so sick while your wife had to also take care of your baby. but I hope you already compensated the 3 of you by just being present together.
as for info about wg, I can say that you are in good hands also here in the forum. this place helps me survive, in all ways. the friends here are amazing beyond expectations.
take care, continue to write and give kisses to your baby from me.

[annekat]

Welcome, Thomas, and congrats on the new little one! What a time to get diagnosed with Wegener's. You have been through a rougher go of it than many of us have, and I'm so glad you are now home and doing well and I hope you are now able to fully participate in bringing up your new family and what other activities are important to you. There will always be the possibility of relapses but the knowledge you will gain here on the forum will fully prepare you to recognize the signs and be prepared. It is likely you won't end up in the hospital again but may just need an adjustment in meds. You may have many years of remission, as some on here have! This forum has been a saving grace for me and many others on here. What a great group of people, and I don't know what I would have done without it. Keep us posted!

[marta]

Hey Thomas,

Welcome to this exclusive club. Sorry that you had to join and sorry for the insanity you've gone through this summer, but it sounds like now they've finally got a handle on the beast and things will definitely improve.

Here's a list of docs that are directly working with Vasculitis in Canada and belong to the CanVasc group....InformationCanVasc (http://canvasc.ca/InformationCanVasc.htm) you can tell your doc that many, if not all of them, are willing to consult if she's in unfamiliar territory with Wegeners, better yet, you can try and and get one of them to be your backup if you find your doctor is too much out of the comfort zone. I had an assigned rheumy after diagnosis but he was so oblivious and so 'proud' that he actually endangered my life when I had my first flare. I dumped him after that like a hot potato and since then have the best doc in the world (many here would say the same for their docs, but it's a good feeling to know that your doctor will do whatever is necessary to give you a good quality of life.)

Another interesting tidbit, you and your newborn son (a big fat congratulations by the way on that amazing event) have almost identical immune systems now.... the RTX kills all of your B-cells which are the ones that have the memory of what you've had through your life. Once the new ones are born in your bone marrow, they are the same as a brand new baby. So now you and your son can move forward in life on a blank slate and only get stronger and stronger.

All the best to you and your family.

Marta

[windchime]

Welcome and congratulations on the birth of your son. I'm happy to hear you're on the road to recovery, albeit it was a very rough road. The important thing is that you are healing. As I'm sure you've discovered there is a wealth of information on this site and the people here are wonderful and very supportive. Keep us posted on your recovery.

[tmkd]

Hey Thomas,

Welcome to this exclusive club. Sorry that you had to join and sorry for the insanity you've gone through this summer, but it sounds like now they've finally got a handle on the beast and things will definitely improve.

Here's a list of docs that are directly working with Vasculitis in Canada and belong to the CanVasc group....InformationCanVasc (http://canvasc.ca/InformationCanVasc.htm) you can tell your doc that many, if not all of them, are willing to consult if she's in unfamiliar territory with Wegeners, better yet, you can try and and get one of them to be your backup if you find your doctor is too much out of the comfort zone. I had an assigned rheumy after diagnosis but he was so oblivious and so 'proud' that he actually endangered my life when I had my first flare. I dumped him after that like a hot potato and since then have the best doc in the world (many here would say the same for their docs, but it's a good feeling to know that your doctor will do whatever is necessary to give you a good quality of life.)

Another interesting tidbit, you and your newborn son (a big fat congratulations by the way on that amazing event) have almost identical immune systems now.... the RTX kills all of your B-cells which are the ones that have the memory of what you've had through your life. Once the new ones are born in your bone marrow, they are the same as a brand new baby. So now you and your son can move forward in life on a blank slate and only get stronger and stronger.

All the best to you and your family.

Marta

Thanks for the response Marta. I was hoping you could elaborate on comparing my immune system to my sons? Are you saying that he doesn't have any chance of having Wegeners or are you just comparing my immune to that of a newborn? :biggrin1:

[mishb]

Hi there Thomas and welcome.

Good golly, I'm so glad you pulled through all of that and I look forward to your travels as you get off the roller coaster, of what has become your new day.
It does get better, and with an excellent medical team on your side, remission is (and will be) possible.

Congratulations on the birth of your baby boy.

Take care of yourself and your new family

[marta]

Thanks for the response Marta. I was hoping you could elaborate on comparing my immune system to my sons? Are you saying that he doesn't have any chance of having Wegeners or are you just comparing my immune to that of a newborn? :biggrin1:

Hi Thomas, The latter. Sorry if that created any panic whatsoever. I kept telling people after the RTX that I am now a newborn.

Have a fantastic day.

marta

[tmkd]

Thanks Michelle :)
Marta - no panic was caused just was having a discussion with my wife about your comment and we were trying to figure it out.

[marta]

Thanks Michelle :)
Marta - no panic was caused just was having a discussion with my wife about your comment and we were trying to figure it out.

I stumble over my words in life and on a keyboard, and am reading how my comment could be read with a tone, and I'm completely sincere when I say 'I'm a dolt' - when I try to be 'funny' and lighten a situation, I tend to say either the wrong thing or things wrong... but usually one of the two. Making funny is how I deal with this situation myself. I'm sorry if my comment sounded anything but heartfelt. I was attempting - poorly - to give you a nudge nudge, we're in on the same joke kinda comment, and I can totally see how it came across as snarky. My wholehearted apology if I crossed any line.

I hate how computer screens change tone, I just hope that you read the above in the spirit which it was penned. I'm just not good at the smileys.

If you need anything, I'm around.
Peace.