JanW's surgery went well!

[JanW]

I'm here at St. Luke's Roosevelt and just wanted to let all of my Weggie friends know that my surgery went really well. Dr. Lebovics said it was a textbook case. I've got some pain relief on board as well as steroids, antibiotics and regular saline, and am feeling pretty well. Sore throat is really minimal but the breathing relief is unbelievable. Thank you all for your support, and for those of you who are trached or waiting for this surgery -- it's so worth it and I hope that you get it soon.

In my role as SS nag, I will also say that if you are having trouble breathing, have WG and have been diagnosed as having asthma, please, please, please make sure with your docs (you'll need an ENT for this) that asthma is the true diagnosis. I understand now why the doctor says that people break down crying when they realized how compromised they were before. Even eating is different for me now, because I am not struggling for breath (and remember, I really wasn't aware I was doing that, until I wasn't doing it any more). The aesthesiologist who has worked with Dr. L on over 400 of the cases said that he is one of the three surgeons in the country that do this dilation in this way. Definitely worth seeking out. When I asked the doc what other docs do he simply said "they'll put in a trach and let the rheumo deal with it on the medical side, and hope for the best. And lots of people end up permanently trached."

[Sangye]

Jan, SO happy to hear everything went well!! I had shivers of joy reading how well you're doing and how well you can breathe.

If you can, please ask the names/locations of the other 3 surgeons who do the dilation that way. It would help to have that info for our members.

Heartbreaking to hear about those who just trach routinely. It makes sense that if no one goes in and opens the scar tissue the Weggie would wind up permanently trached. Because of you, we are armed with this info now. Hopefully none of our members will ever go through unnecessary trachs. Thank you and take care of yourself.

[pberggren1]

Yee Ha!!!!!! That is AWESOME Jan!!!!

[elephant]

Great news Jan! Thanks so much, like Sangye said, you are helping everyone here who needs this surgery. Someday I might need one. Glad you are breathing better! Yahoo!

[snooz23]

Great news Jan...you have provided some great perspective and helpful information to everyone out there. I hope your recovery is quick and easy.

[JudyJ]

JanW
I am new to this siite and am so excited to hear how well your surgery went it sure encourages the rest of us. Best Wishes
Judy

[jola57]

JanW, how wonderful you are getting better and can now enjoy your food : )

[DEE]

happy everything went well wishing u a speedy recovery DEEx

[Jack]

So pleased for you Jan and useful information should I ever need it.

[JanW]

Thanks, Jack. I'm back home and cannot recommend my doctor or my hospital stay more highly. I now understand why people would do this procedure even if they have to have it done several times. Totally worth it and it's simply not arduous at all. When I think that many (most) Weggies are getting trached (sometimes permanently) at windpipe circumferences that are greater than mine was when I went in, it makes me so angry that I want to cry. All because maybe their doctors don't even know that this procedure exists. I am sure that my doc is trying to share the information with others -- he has got several papers in the works -- but what good does that do if some small town doc (or big town doc for that matter) who has no experience with us thinks that he's got to get the patient restored to full breath at any cost without looking into options that are not disfiguring or life changing. I have no restrictions on activity right now, only 24 hours after the surgery and am on nothing stronger than Tylenol. I am going to open up another thread on this topic.