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View Full Version : Another WG Newbie...(we should have a convention)



Walter Wolynsky
04-25-2010, 07:27 AM
HI! My name is Walter...57 year old divorced male...seff-employed gardener.

I had always considered myself in reasonably good shape being that I worked outdoors...did plenty of physical work...fresh air...etc. Allergies seemed to be a fact of life with me...the watering eyes...nasal congestion. I just accepted it. Several months ago I was dealing with what I thought was a stubborn cold or flu-like symptoms. In short, I ended up in the hospital ER after uncontrolled nose bleeds which progressed to coughing up alarming amounts of blood in sputum. After the bloodwork results and respirologist referral the evidence pointed to WG. I am going in for surgery on Wednesday, April 28th to confirm this as I cannot begin treatment until a firm diagnosis is made, therefore the anxiety about getting the ball rolling. I have no doubt about it being WG as my symptoms are all classic. If there are any other WG "clients" in the British Columbia, Canada...or even Vancouver lower mainland I could communicate with...compare notes...it would be appreciated. Thanks all!

Walter

pberggren1
04-25-2010, 08:14 AM
I know of 3 off the top of my head Walter.

Moyan in Vancouver

Jolanta in Mission

Germaine in Nanaimo

I hope you are doing OK right now and get an answer soon on this matter.

Take care,
Phil

Walter Wolynsky
04-25-2010, 08:18 AM
Thanks Phil.I'll let you know how things turn out!

Sangye
04-25-2010, 12:52 PM
Hi Walter, welcome to the group! I'm concerned that you have signs of pulmonary hemorrhage but no one is treating it yet. Has it subsided on its own? It can do that with Wegs. What kind of surgery are they doing (ie, which areas are they taking a biopsy?).

Walter Wolynsky
04-26-2010, 01:22 AM
Hi Sangye. Thank you for responding. The operation consists of 3 entries through my rib cage where cameras are inserted to assist. The biopsy specimen is to be removed from the upper part of my lung.. I believe in the pleural lining. I am anxious for some form of treatment however I am in the hands of the experts at this point and time cannot move quickly enough! As far as the pulmonary hemmorhage...I no longer cough up blood.

JanW
04-26-2010, 01:33 AM
Welcome, Walter, and good luck!

Walter Wolynsky
04-26-2010, 01:45 AM
Thank you JanW.

elephant
04-26-2010, 03:30 AM
Walter, it sound like you having a Video assisted Thoracic Surgery. I had that last year. It is painful, sorry but need to be honest. Stay on top of your pain medicines.

Walter Wolynsky
04-26-2010, 08:42 AM
Thanks Elephant...(I think)...well..."the truth shall free us"...right?

I appreciate you telling me, that I may be prepared.

Brooke
04-26-2010, 11:11 AM
Hi Walter, welcome to the group:) Lots of good information from people on here!

Sangye
04-26-2010, 11:32 AM
Pulmonary hemorrhage can stop and start without warning. When I had a major flare last summer, I started coughing up lots of blood. Non-Wegs specialists in the hospital were undecided if it was Wegs or an infection. The blood stopped within a few days, and they took that as proof that it was infection and sent me home. My Wegs doc hit the roof when he found out the next day. He said if there's blood--a little or a lot-- it's alveolar hemorrhage and must be treated right away. Sure enough, the blood came back. Thank goodness we had started treatment.

Walter Wolynsky
04-26-2010, 12:55 PM
Thanks Sangye for the info. Pre-treatment life is measured in minutes..feels like it anyway. Looking forward to some normalcy.

Walter Wolynsky
04-26-2010, 12:57 PM
Hi Brooke and thank you. The forum and nice group of people are indeed a great bunch!

jola57
04-26-2010, 04:25 PM
Hi Walter, I live in Mission, so not too far. I am sorry you are having the dreaded surgery. I assume its at
Surrey Memorial. Who is your doc?

Walter Wolynsky
04-26-2010, 06:48 PM
Hi Jola. I'm having the surgery at The Vancouver General...with Dr. Kenneth Evans. My referring Respirologist is Dr. Rita Wittmann from Langley.

renidrag
04-27-2010, 01:26 AM
Good luck Walter and welcome. The old line, sorry you have to be here.
Dale

cathy2330
04-27-2010, 04:41 AM
Hi Walter I live in Maple Ridge and spent 5 weeks at VGH under Dr. Kenneth Evans care and he is a fantastic doctor and man. Very kind and very good thoracic surgeon. He did everything he could for me and I am still seeing him regularly for balloon dialations. I have posted my story on New Member. My resporologist is Dr. Sheila Webster and my rheumatologist is Dr. Marguerite Stolar in New west. Take Care.

Walter Wolynsky
04-27-2010, 06:55 AM
Thanks Dale.

Walter Wolynsky
04-27-2010, 06:56 AM
Hi Walter I live in Maple Ridge and spent 5 weeks at VGH under Dr. Kenneth Evans care and he is a fantastic doctor and man. Very kind and very good thoracic surgeon. He did everything he could for me and I am still seeing him regularly for balloon dialations. I have posted my story on New Member. My resporologist is Dr. Sheila Webster and my rheumatologist is Dr. Marguerite Stolar in New west. Take Care.

Thanks Cathy. I'll read your story.

Col 23
04-28-2010, 01:20 AM
Welcome Walter.
Good luck with your biopsy. Hope all goes well for you. Sounds like Phil has got the locals sorted for you.
cheers col 23

Walter Wolynsky
04-28-2010, 10:40 AM
Thanks col 23...yeah, Phil's been helpful with local contacts...I will be getting in touch with them after my surgery. Cheers!

Sangye
04-28-2010, 11:42 PM
Walter, is your surgery today? Good luck-- I hope it goes well and you recover quickly. :)

Doug
04-29-2010, 01:05 AM
Thanks col 23...yeah, Phil's been helpful with local contacts...I will be getting in touch with them after my surgery. Cheers!

I had this surgery as part of the process of verifying my pulmonologist's diagnosis of WG. Though I didn't have any issues with pain, I did have a long haul on wound healing. The biopsy was taken in late December 2003, but the largest of the wounds took until April 2004 to complete healing. For most of the time the last incision was healing (up till maybe two weeks before the "job" was done), I had seepage, which was a nuisance and required regular care. I presume the nature of WG and the severe form I have contributed to the long healing process. Once I achieved remission in April 2005 or so, recovery from cuts and bruises returned to a more normal schedule, which is to say fast. I am a fast healer as a rule.

Sangye
04-29-2010, 01:14 AM
Pred slows down wound healing. My docs tell me to be very careful, especially protect legs from injury.

Doug
04-29-2010, 01:16 AM
Pred slows down wound healing. My docs tell me to be very careful, especially protect legs from injury.

Yet another wonderful characteristic of this drug. Whew! Thanks for the clarification, though, Sangye.

elephant
04-29-2010, 02:13 AM
Doug when I had this surgery( video assisted thoracic surgerg) they actually took a chunck out of my lung... last March. At that time I was on 60 mg of prednisone, 2000 mg of cellcept and 200 mg of cyclosporine ( all of them immunosuppressant drugs) and other drugs. Yea, I am still not healed 100% still feel scar tissue in my chest and will probably have it for the rest of my life...and also nerve damage too.

Doug
04-29-2010, 02:35 AM
Doug when I had this surgery( video assisted thoracic surgerg) they actually took a chunck out of my lung... last March. At that time I was on 60 mg of prednisone, 2000 mg of cellcept and 200 mg of cyclosporine ( all of them immunosuppressant drugs) and other drugs. Yea, I am still not healed 100% still feel scar tissue in my chest and will probably have it for the rest of my life...and also nerve damage too.

Mine was a biopsy, too. I'm am fortunate, it seems, not to have any scarring of the sort you deal with- or I just don't associate a specific sensation with that scarring.

Col 23
04-29-2010, 03:24 AM
Good luck and a speedy recovery from your surgery.
col 23

elephant
04-29-2010, 06:00 AM
My thoracic surgeon told me that is was going to be painful and that some people take 6 months to a year to heal. But most of them heal quicker than that, but of course ...I have to be different! He really took a wedge out ( lung nodule) and they confirmed it was WG not cancer. I really wanted to wait a couple of months but I had pressure from my local Rheumy and other doctors that they really needed to get in there and find out what is was, so they could treat it properly. At that time I did not have a WG specialist, but I assume she would of agreed to have that lung nodule out. So glad Doug you healed beautifully!

Walter Wolynsky
05-05-2010, 07:46 AM
Had my Thoracic Surgery on April 28th and was discharged today, Tuesday May 4th. The biopsy indeed concluded Wegeners and I am now hopeful to proceed within the week, to therapy through my respirologist. I cannot say enough good things about everyone involved in my care from the surgeon, to the nurses and support staff at Vancouver General Hospital. Now...I need some rest!

cathy2330
05-05-2010, 08:33 AM
Hi walter,

I am glad everyone was really good to you. I too stayed at the VGH Hospital for over a month on the 12th floor, had a room with a beautiful view overlooking Vancouver. Apparently people pay large dollars to have that view. Dr. Ken Evans was my doc and he was wonderful and so were all the nurses. At least you now have a definite answer and can proceed from there. Get some rest and take Care.

Cathy

elephant
05-05-2010, 09:41 AM
Hi Walter, so glad you made it. How are you feeling? Let me know if you have any questions, I went throught this last March 09'. Have a good rest!

Sangye
05-05-2010, 11:13 AM
I'm happy to hear your surgery went well! Get some rest and heal well. :)

jola57
05-06-2010, 10:51 AM
I am glad you are \ok and the surgery went well. VGH has a good reputation for outstanding care. Now just take it easy and recuperate to the fullest.

DEE
05-06-2010, 03:55 PM
glad it went well Walter take care of you DEEx

Col 23
05-08-2010, 02:29 AM
Hi Walter
Hope your getting the the rest, just read this thread, pleased that it went okay for you.
cheers Col 23

Walter Wolynsky
07-30-2010, 12:25 PM
Hi Cathy. I have been away from the website for some time and just noticed other info in your message. I keep hearing about the need for seeing a rheumatologist...not relying solely on a respirologist for treatment and care. What are your thoughts on this? My doctor is fantastic but this is my life...just wanting to be satisfied that the treatment protocol I'm under is the right way to go. Thanks Cathy.

Walter Wolynsky
07-30-2010, 12:29 PM
Geez Cathy...sounds like we had the same room...overlooking the helicopter pad??

cathy2330
07-30-2010, 01:07 PM
Yes, I was overlooking the helicopter pad, Great room with beautiful view. While I was in the hospital, spent 5 weeks there, Dr. Evans brought in a rheumatolgist to help diagnose me. I didn't get along with him, so moved to a new rheumatologist, Dr. Marguerite Stolar in New West. She is the one that primarily looks after me. I have done 3 months of cytoxan IV therapy and prednisone. I have one more cytoxan (chemo) treatment left and then will be going on a maintenance drug, possibly cellcept or methomextrate. My issues were primarily initially in my broncial tubes, stenosis narrowing but when I was admitted in Jan. had moved to my trachea, both bronchis and lungs. I also see an ENT in Vancouver, Dr. Javer as I have sinus issues, scarring and crusting that he looks after. Dr. Stolar (rheumy) will be referring me back to Dr. Evans to do another Bronchoscopy to see how the stenosis is now after treatment. I know my breathing is better. The big question for me is once treatment stopped not sure how long until narrowing occurs again. I had at least 7 balloon dialations from Jan. To May to keep it open until I started treatment. I am also going to see about putting stents in again (although Dr. Evans is not big on stents, they did try on me before but it was just too narrow and small to get the stents in. I really only see Dr. Evans for any of the thoracic type area, which is trachea, lungs etc. Ent takes care of above trachea and rheumatologist really should be your primary caregiver for the Wegeners. Either Dr. evans or even family doc should refer you to a rheumatoligist and I know everyone on this website believes it should be specifically a Wegs Specialist but not sure if you can find those in the lower mainland. My rheumy definetily has patients with Wegs. and honestly I learn about alot of stuff on google and on this website that we talk about together. I have never officially been diagnosed with my problem, have done anca tests , negative, had deep tissue sinus biopsy , negative but this is the only conclusion they could come up with and I need to try a treatment quickly as my breathing was so bad. I could not even have a shower without being short of breath. It is being called atypical Wegs. , and the treatment seemed to work so far. Hope you are doing okay and I do suggest you get a rheumatologist. Are you on any medications now, who is treating you. Let me know if you have any other questions.
Take Care. Cathy

pberggren1
07-30-2010, 02:22 PM
Walter and Cathy, I hope you guys have good docs. It is important to have docs that are quite experienced with wegs. Actually besides the docs at the Vasculitis Clinic at Mount Sinai Hospital in Toronto there are possibly no other Wegs Specialists in the rest of Canada. I lucked out a month ago and found my Wegs Specialist right here in Swift Current, SK. He is originally from the UK and just moved here a couple of years ago. But I would think with the population of Vancouver and surrounding area that there must be some doc with some wegs experience there. I wish you both the best of luck. Have either of you met one another in person or met Jolanta from Mission or Germaine from Nanaimo?

God Bless,
Phil

Sangye
07-30-2010, 10:41 PM
Cathy, why are they calling it "atypical Wegs?"

When I was hospitalized in Flagstaff, AZ I was often in a room overlooking the helicopter pad. That hospital is a regional trauma center where they get patients flown in from all over Arizona, New Mexico, Colorado and Utah. Helicopters land every 15 minutes round the clock!

cathy2330
07-31-2010, 12:34 AM
That is what the doc is calling it as I have never had anything officially confirm it. The biopsies have either been negative or inconclusive, my bloodwork is all normal and typically I only have the stenosis and some sinus issues. No one knows if its officially Wegs but as my situation was so dire and I had been tested for everything under the sun it was decided to treat as Wegs. The only other possibility was sclerederma which has the same treatment as Wegs. The cytoxan and pred has seem to have helped with the stenosis which is apparently unusual but everything about my case is unusual. I will be going for a bronchcoscopy in about a month to actually measure the differenece in the openings. The question will be will it stay open after the cytoxan stops. I really want to get off all meds and see if it will stay open but my doc seems to think I should either go on Cellcept or Methomextrate for maintenace but she is willing to try to wean off the prednisone. I hate the prednisone! We shall see what happens....Cathy

Sangye
07-31-2010, 09:11 AM
I wish you could see a Wegs specialist. Have you asked your docs to consult with a VF doc for free? I don't think it's that unusual to have a (-) biopsy and normal bloodwork.

JanW
08-01-2010, 10:54 PM
Cathy I have stenosis as well and if you go into that section in the site you will see the name of my doc Robert lebovics who is internationally recognized and conducted workshops at the VF conference where I am right now. This is definitely an area that requires an wg expert. They brought in a guy from LA because the conference is here and he seemed like an excellent doc but it was clear when questions were being asked he didn't know the unique effects of vasculitides that effect the airway. Closest wg center to you is university of Utah which is just being established but keep in mind stenosis itself is a rare complication of a rare disease. I have every confidence that lebovics would be willing to talk to your doc. He gave a lot of time to patients here.

And what Sangye said is true - I think one if the experts said that 20% of us have negative bloodwork and neg biopsies aren't uncommon at all (I have one).

elephant
08-02-2010, 05:39 AM
When they went in to take a chunk out of my lung they confirmed it was WG, not cancer. Had four maxillary surgeries all neg for WG just a possibility.

pberggren1
08-02-2010, 05:56 AM
What do you mean by maxillary surgeries elephant? Do you mean the Caldwell Luc procedure?

elephant
08-02-2010, 09:05 AM
I had that too the Caldwell Luc procedure. They maxillary sinuses cover your cheek bones, I had all four surgeries on the left. The left maxillary hole kept closing so I would get infections and the ENT had to go back in and clean it out and open it up. The final surgery that removed some bone , but you can't tell that I have bone missing from my face. It was a big surgery, I stayed overnight. It seems to be doing good.

pberggren1
08-02-2010, 11:34 AM
All ENTs I have seen said surgery is a last resort. And most of them said that Wegs complicates things with any type of nose or sinus surgery. They said that it can trigger the Wegs out of remission.

JanW
08-02-2010, 11:39 AM
Most American surgeons don't even do Caldwell Luc anymore according to the speakers at the conference. They described it as being very gruesome (which for an ENT is saying a lot). The problem with surgery in WG is that you are potentially stirring up inflammatory tissue without realizing it, and that you would do something that alter anatomy that could stop the blood flow to the area -- that's how a saddle nose develops for instance, and there's no way to get that blood source back. One woman described her son who had a tumor around the ear -- but still retained nerve function -- and the advice from both ENTs was to keep the tumor in place and just wear hearing aids. They were very big on not altering anatomy -- that got repeated several times.

Lola
08-02-2010, 12:09 PM
Jan, thank you so much for the firsthand information!

I have a question for you. My nose is often very, very cold - summer and winter. The cold area sometimes includes my upper cheeks and the area between my eyelashes. I would think this is due to decreased blood flow in the area. Did you ever have this symptom prior to your saddle nose? if not, what symptoms DID you have?

Thanks again for keeping us informed.

Kunka123
08-02-2010, 12:29 PM
Hey Walter.
Good luck, I have been down the same road your going down. Especially with the nosebleeds and the surgeries. Hope everything turns out well for you.

elephant
08-02-2010, 09:39 PM
Lola I had that before being diagnosed too, "cold nose." How is your thyroid? It could be WG?
A low thyroid would show dry skin, lower metablolism , slow heart rate, cold fingers and toes and sometimes nose. There are othere symptoms too.

JanW
08-03-2010, 01:28 AM
Lola -- I got that question from someone at the conference. People find it hard (impossible) to believe that you nose could collaspe and do so with no pain. But it does, and it's not like it felt different or you could feel the cartilage getting weaker. I had some pain (no more than sinus pressure), but nothing that would suggest this kind of collaspe. It seems to run together with stenosis, but believe me, we saddle noses even at a large convention of weggies are few and far between. It's not a common symptom.

Lola
08-03-2010, 03:36 AM
Thank you, Jan. I just keep wondering. Elephant, my thyroid is within normal limits. That is, of course, the first thing I thought of, too.

I have a nose warmer that I pull out in the winter. It's charming, I must say. It just looks too ridiculous in the summer, however.

elephant
08-03-2010, 03:48 AM
Lola hopefully your nose will be warmer soon. I know what you mean, mine is gone now. It was cold for at least 15 years.

Sangye
08-03-2010, 04:38 AM
I have the same thing in cold weather. My nose started doing weird things last year. The cartilage started to feel softer and softer, and when I wiggle my nose it goes way further to the side. Everything below the bony bridge turns bright red in heat or cold. And in very cold air, it really hurts. I don't have overt nose symptoms (eg crusting) but I know my nose is involved. It's like the skin and cartilage are not getting proper circulation. The cartilage feels softer whenever any Wegs symptoms kick up, too.

Lola
08-03-2010, 08:26 AM
Aren't we strange?

My nose gets cold even when I'm out in the hot sun in the summer - especially when out in the sun!

Fifteen years, Elephant! I don't know if i have that long.