glad i speak a little german

[ian anderson]

hi my weggie friends well balloon dilation went well mon 5th july for my ts but by the 12th july it started coming back ah well das ist leben(thats life) anyway im seeing my ent surgeon tomorrow fri 23rd july however just last week just 2 weeks after balloon dilation i recieved letter from a german specialist in wg and respiritory diseases from the hospital i get treatment from dr hans hartung i wonder what this is about says i so anyway yesterday weds 21st july off we go to see him my wife came too anyway we spent the most facinating time with this german specialist it seems after reading my medical notes (took him almost a week to take notes he says) he informed me that iv"e been given the right meds but at the wrong times and not as much as i should have are you kidding says i iv"e had thousands of pills and treatments over 15yrs yes says he but i noticed that you initially were on preds and imuran and cyclophosphomide all at same time that is not the answer says he with wg the right way to admin drug treatment is thus preds with cyclo then stop cyclo say after 3 months heavy dose then still on preds add imuran (azathioprine) immumosuppressive to meds and stay on the course oh dear says i indeed says he not only that thats why your having a tough time and no rest from wg over those yrs and sorry to say we (his team of gathered specialists unknown to me at this time) have decided that my wg is now out of control and they have decided to in his words stop me from seccumbing to this nasty disease SOON oh oh anyway it seams im going into specialist clinic to start new program of tests and meds to try and make sure i see a 48th birthday as you can imagine my wife was pretty upset so in my best german (my wife doesnt speak it) i asked him my chances of success he said 50/50 with my wife already upset no further english was needed so my friends ill if i can keep you up to date with how im doing or more importantly what they are doing if the worst should happen let me say this im glad i came to the forum ive enjoyed albeit my short time here someone who loves me will let you know your scottish friend Ian xxxx

[JanW]

Hope you have great success with your new German specialist, Ian, and I'm sorry to hear about the stenosis coming back so quickly. What did they say that they can do about that?

[elephant]

Ian your wonderful spirit will get you through this, love your positive attitude. I am too glad you are seeing a good specialist. Your in good hands Ian.

[DEE]

Hang in there DEEx

[Jack]

Ian,
Glad you have found someone who seems to know what they are talking about. The treatment regimen he describes sounds very similar to the one I was on.

[Lightwarrior]

Ian,
I wish you the best. Your German specialist sounds like he knows what he is doing. Usually the cyclo and preds can help to back off Wegs from the critical point. I am wishing you a Happy 48th Birthday early and hope to wish Happy Birthday again on your 48th Birthday. Hang in there and know that we are thinking of you.

[Lola]

Happy happy birthday, Ian!

[Sangye]

Ian, I'm sure glad you're getting care from someone who knows what he's doing. At last!

Now enough of that 50/50 talk. Many of us have been at Death's door so many times we can give tours, and we're still here. You will be, too. Your new doc is going to find the right combo of drugs that works for you, and it'll work fast enough.

I'm not wishing you an early Happy Birthday. If you wanna hear it from me, you're just gonna have to show up on the right day. Hugs to you, my friend. :D

[pberggren1]

Ditto to what Sangye said Ian. I'm glad to hear that you have a good new doc on your team. That can make a huge difference.

[DEE]

Ian im still trying to get to some kind of remission change drugs as often as socks ! recovering still from blood clots in lung but the one thing that keeps me going is one day at a time and looking forward to my birthday bq this week and listening to these guys on here ,
glad you found a new doctor look forward to wishing you a happy birthday hold on in there DEEx

[ian anderson]

Hope you have great success with your new German specialist, Ian, and I'm sorry to hear about the stenosis coming back so quickly. What did they say that they can do about that?
tnx jan im sure they want to keep things as simple as possible and he said more balloon dilation ah well just have to go with that take care jan Ian xx

[ian anderson]

Ian your wonderful spirit will get you through this, love your positive attitude. I am too glad you are seeing a good specialist. Your in good hands Ian. tnx elephant im ready for this anytime my scottish spirit is ready to war with it hope im not too rough with old weggie lol take care Ian

[ian anderson]

Hang in there DEEx tnx dee im looking forward to their new approach take care Ian xx

[ian anderson]

Ian,
Glad you have found someone who seems to know what they are talking about. The treatment regimen he describes sounds very similar to the one I was on. well lets hope so im sure he knows what to do after all he is german lol tnx jack take care Ian

[ian anderson]

Ian,
I wish you the best. Your German specialist sounds like he knows what he is doing. Usually the cyclo and preds can help to back off Wegs from the critical point. I am wishing you a Happy 48th Birthday early and hope to wish Happy Birthday again on your 48th Birthday. Hang in there and know that we are thinking of you.tnxs lightwarrior and for early birthday wishes well appreciated even though i dont celebrate birthdays lol you have a drink on me ill send you some real scottish ale i will i promise and you can have a drink on me take care Ian

[ian anderson]

Happy happy birthday, Ian! lol tnxs lola xx

[ian anderson]

Ian, I'm sure glad you're getting care from someone who knows what he's doing. At last!

Now enough of that 50/50 talk. Many of us have been at Death's door so many times we can give tours, and we're still here. You will be, too. Your new doc is going to find the right combo of drugs that works for you, and it'll work fast enough.

I'm not wishing you an early Happy Birthday. If you wanna hear it from me, you're just gonna have to show up on the right day. Hugs to you, my friend. :D tnxs sangye your an inspiration you really are are you sure you dont have any scottish roots lol take care buddy Ian

[ian anderson]

Ditto to what Sangye said Ian. I'm glad to hear that you have a good new doc on your team. That can make a huge difference.tnxs pberggren yes he seams well into his work he just decided one day to have a look into my notes and found some inconsistincies and decided to see me hope it was some kind of spiritual help he got i know youll appreciate that pberggren tnxs agn for your kind words Ian

[ian anderson]

Ian im still trying to get to some kind of remission change drugs as often as socks ! recovering still from blood clots in lung but the one thing that keeps me going is one day at a time and looking forward to my birthday bq this week and listening to these guys on here ,
glad you found a new doctor look forward to wishing you a happy birthday hold on in there DEExtnxs agn dee i hope you have a lovely day for bbq and ill keep you posted on any news take care Ian xx

[Jack]

I thought that the "50/50" comment was rather pessimistic unless he was talking about achieving full remission. There are some pretty sick members on the Forum and we have only lost the odd one or two over the years mainly due to poor diagnosis or treatment. If you are in the right hands, most people's prognosis is good these days even if they are quite ill to begin with.

[JanW]

Yes, I feel quite confident based on what I've read and seen on this forum that the people who are still dying from the disease really aren't getting the proper treatment, full stop. Hang in there Ian, and, if possible, try to find out if there are any more options for your stenosis. I'm not sure if yours was subglottic or tracheal (or both) but frankly, I've read about people getting balloons every month or so and it just seems to me that there has to be a better way (meaning, I know for a fact there is a better way, but there has to be some way that people in your part of the world can access that better way, no). If nothing else, it's not great for you to keep going under anesthesia so frequently. My ENT says that if he can even save me one surgery, by operating at the very last moment (right when it starts to affect my life, as opposed to recurring stenosis, which he can now see when he scopes me, but I can't yet feel), it will be worth it. As he says, as only a New Yorker can "hey, it's not nothing, it's surgery and the biggest risk to this type of surgery will always be death, no matter how skilled the hands."

[ian anderson]

I thought that the "50/50" comment was rather pessimistic unless he was talking about achieving full remission. There are some pretty sick members on the Forum and we have only lost the odd one or two over the years mainly due to poor diagnosis or treatment. If you are in the right hands, most people's prognosis is good these days even if they are quite ill to begin with. yes ur right jack i think thats what he was saying i was at hospital today fri 23 july to see ent surgeon who dilated me he said much the same but warned too that team must act quickly as ts is moving toward lungs thats not good ill get further dilation next month aug 2010 thnx jack all th best Ian

[ian anderson]

Yes, I feel quite confident based on what I've read and seen on this forum that the people who are still dying from the disease really aren't getting the proper treatment, full stop. Hang in there Ian, and, if possible, try to find out if there are any more options for your stenosis. I'm not sure if yours was subglottic or tracheal (or both) but frankly, I've read about people getting balloons every month or so and it just seems to me that there has to be a better way (meaning, I know for a fact there is a better way, but there has to be some way that people in your part of the world can access that better way, no). If nothing else, it's not great for you to keep going under anesthesia so frequently. My ENT says that if he can even save me one surgery, by operating at the very last moment (right when it starts to affect my life, as opposed to recurring stenosis, which he can now see when he scopes me, but I can't yet feel), it will be worth it. As he says, as only a New Yorker can "hey, it's not nothing, it's surgery and the biggest risk to this type of surgery will always be death, no matter how skilled the hands." tnx jan yes there are other options there is stenting but according to my german friend the sructure of those type of stents are unpredictable then theres resection thats where they cut away the trachea thats got problems but in their eyes what happens when it comes back and in another spot of the trachea so big problems the trachea is not as long as you think so what else is there tnx Ian xx

[JanW]

I think stents are also really problematic because granulomas can grow around those foreign bodies. I've not read recently of doctors suggesting this method, at least in the U.S.

Is there no way that they can cut into the tissue -- not a resection where they take out a bit and then tie the two ends together, but rather cut through the scar tissue to make the actual opening larger? That's what they did with my subglottis, but obviously the anatomy is different than the trachea.

[Doug]

Dear Ian - On the third anniversary of my diagnosis of having WG, I reminded the doctor who made the diagnoses that on that occasion he had told me, "There are three autoimmune diseases you may have. Until we do some biopsies to verify which one you have, I believe you have Wegener's granulomatosis [which he briefly described and explained], and you will be dead within two years." May you be blessed with a bad prediction, too!

[ian anderson]

Dear Ian - On the third anniversary of my diagnosis of having WG, I reminded the doctor who made the diagnoses that on that occasion he had told me, "There are three autoimmune diseases you may have. Until we do some biopsies to verify which one you have, I believe you have Wegener's granulomatosis [which he briefly described and explained], and you will be dead within two years." May you be blessed with a bad prediction, too! lol tnx doug i hope ur right i do know that ive got wg and lived with it for many yrs 15 altogether so im very optimistic tnx a lot Ian

[drz]

I thought that the "50/50" comment was rather pessimistic unless he was talking about achieving full remission. There are some pretty sick members on the Forum and we have only lost the odd one or two over the years mainly due to poor diagnosis or treatment. If you are in the right hands, most people's prognosis is good these days even if they are quite ill to begin with.


Are the people on this forum though typical of most people with WG disease?

There is a strong emphasis here on people seeking care from physicians experienced in treating WG, plus members seem very actively involved in their care and treatment.

Could these things contribute to a better prognosis for our members here?

[elephant]

You pretty much have to be persistent and active in getting this awful disease into remission. One way is to go to a Wegeners specialist who has seen hundreds of WG patients. I would not want a heart surgeon operating on me ( heart surgery) if he only did 5 patients in one year.
I now ask my doctors how many patients have you treated or did surgery on.

[pberggren1]

drz, you have to be your own best doctor and do lots of research and ask questions on the forum.

No one else, not even a good doctor, is going to do that for you.

[JanW]

drz - I've often thought that our members are the best educated patients with this disease out there (at least out of people who use internet forums at all). That having been said, I think our members are also likely sicker than the average patient and less likely to be in remission at the time that they are most active on the board. If your disease is discovered and you are treated rapidly and successfully, it stands to reason that you don't need the support that internet forums provide.

[Jack]

I think quite a few are on here primarily because of the input they feel they can make rather than for the support element although we all need that at times.

[elephant]

I will probably stay on this forum as long it is here. I feel I can contribute because of my long history of WG and all the surgeries I had. I do love the support too. :)

[pberggren1]

Ditto to what you said Jack. That is mostly why I am on here now. But I do find this Forum to be a good stress reliever. I find all of you on here just an extension of my family.

[Doug]

Me, too, m,though I feel I have less and less to offer and more to learn because of significant changes in WG therapy. That brings me back, then, full circle~382

[Hammy8241]

Me? As a newbie, it’s a thirst for information & support from like minded/inflicted people. I don’t have enough WG experience to join in and answer many peoples questions/queries but will/would do if/when I have the knowledge.

[pberggren1]

If your a Weggie then you alreay have the knowledge.