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View Full Version : Crazy Week after Stenosis Surgery



jtausan
04-15-2011, 01:47 PM
Hello all,

I have had a crazy week and wanted to share with everyone. I had my surgery last Wed April 6th. We came home the next day and everything was good. I felt good friday and Saturday and on Sunday I started having a hard time breathing again. I was worried I did too much to soon or I had a lot of swelling etc. So I got up monday morning and went to work, I got to work and was really struggling to breath so my friend and coworker told me to go to the ER. I went the the nearest ER which is the Indian Health Service Hospital. (I am able to go there because I am 1/4 Oglala Lakota Sioux) Anyway, I go there and I explain that I recently had throat surgery etc, they gave me a neb treatment, 2 steroid shots and uped my prednisone to 30 mg. I called the surgeon at Mayo and let them know and they also thought that would help. I went home to rest, and hope the breathing would get better. I woke up the next morning with the same breathing, no improvement. Meanwhile, I was drinking lots of liquids, gargling with warm water etc to help my throat. I called the Mayo nurse back and she said that its very unusual to breath this way after the surgery, she said that it would be best if an ENT could look down my throat to see what was going on. I called my local ENT whom I have seen before and he was not in that day, his colleague was also not in that day. Really, are you kidding me. I called Mayo back and I asked if they could get me in the next morning and she said yes. I decided to just make the trip back to Mayo since I knew something was wrong. My husband and I were making our arrangements with work, kids, packing etc and as we were heading out we decided to call the Indian Health Hospital and ask if we could get an oxygen tank to take just in case I would need it. They said yes but the Dr wanted to see me first, so we went in and he was concerned something was lodged in my throat but didnt have the (scope) to look down my throat so he wanted me to be transferred to the Regional Hospital in town, reluctantly I agreed, this hospital's ER is notorious for making you wait for hours and not giving good care. The other catch was they had to send me by ambulance across town, the paramedics were very nice and took great care of me. We get to the ER and it is very busy, so busy I have to start out in the hallway, a nurse takes my BP and puts a pulse ox on me, my pulse ox is a 94, so I am getting enough oxygen in, its just really difficult to get it in. So after about an hour in the hallway, another nurse puts me in a room and takes vitals and makes me put on a gown. That is it, for the next 2 hours I see no one! By this time its 3 in the afternoon and I have an appt at Mayo at 8 am the next morning and we live 10 hours from Rochester, this is not looking good. I call for a nurse and ask her when the Dr will be in and she said it still may be a while, we explained the situation about us getting to Mayo and we asked if we could just check ourselves out and get on the road. She said that would be against medical advice but she understood and she said she would do the same. She explained to the Dr (whom never did come see me) and he said it wouldn't actually be against medical advice because he never saw me to give me any medical advice! The reason this may be a concern is because I guess insurance doesn't have to pay if you leave without getting help, well they didn't do a damn thing anyway! So we left right away and were on the road to Rochester, we get to Rochester at 2 am. Got to our hotel and were up ready for my appt at 8 am. I got in the shower and while in the shower I had to cough and panicked because I really couldn't breath, I could tell that something was lodged and I stayed calm and tried to cough it up. After about thirty seconds of trying and thinking to myself, run out and get Bret to help you, I coughed up a large piece of bloody phlegm. It was about 1/2 inch long and was pretty congeled. Oddly, after I got it out I could breath just fine! I went out of the bathroom and showed my husband and he couldnt beleive how well I could breath. We went off to my appt and within two minutes of going into the room at Mayo the Dr had the scope with camera down my throat. My throat looked great, the peice I coughed up had been lodged in my airway for 3 days and now it was gone and it looked great, with just a little inflammation left. We were done with my appt in 20 mins and were done at Mayo. So the moral of my story is this: if my local hospital would have just taken the time to look down my throat I would never had to take a flying trip to Mayo. Altho, that is why we go to large specialty clinics because that's where we get the best care.
It has been quite a week and I had all kinds of thoughts running through my mind, like do I need to go back to surgery, did it not work will I need a trach now etc. It was stressful but Im glad to be home and breathing well. Jodi :tongue1:

Psyborg
04-15-2011, 09:43 PM
Oh...that had to be scary. Glad to hear it turned out ok in the end. Scares me a bit too...mine is the 27th :)

ArlaMo
04-15-2011, 11:00 PM
Holy cow - very scary. And so true about being seen by specialists. Glad you are ok!

Brooke
04-15-2011, 11:10 PM
Wow! How very scary and how annoying with the docs! Jodi, maybe you could try to get an appointment here in Sioux Falls with ENT. I go to a good doctor and Midwest ENT, his name is Dr. Todd. Maybe if your ENT is out you could come here next time? Still about a 5 or 6 hour drive? I am glad everything is ok with you.

Jack
04-15-2011, 11:11 PM
Difficulty with breathing like that must be very scary. I'm so glad that it has turned out well and hope that you have no more trouble.

DEE
04-16-2011, 12:56 AM
Glad things turned out ok Jodi :thumbsup:

Sangye
04-16-2011, 01:19 AM
Yikes, very scary. I'm relieved you're okay!

Chris G
04-16-2011, 01:24 AM
Oh my gosh, how scary and frustrating that must have been for you! Thank goodness for the specialists who really do know what they're doing.

drz
04-16-2011, 11:03 AM
Wow! I can feel your anxiety when you couldn't get air. Sorry you had to go through that but very glad it worked out for you.

Years ago I had a similar experience after ear surgery and ear drum busted and yucky stuff came out. Local ENT doctor who had referred me to Mayo didn't have time to see me, probably late for golf date or something, so I called Mayo and they said how soon can you get here. I always found it amusing that the local clinic didn't have time to see me but the World Famous Mayo could find time to see me right away. It is very reassuring that they offer such great service.

gwenllian111
05-09-2011, 12:33 AM
Your experience about that hospital, where you had to wait for hours in ER and no one saw you - is exactly what the NHS is like in the UK!

So glad you are better too. I have terrible pain and inflammation after surgery now. If it wasn't for bottles of oral morphine to take home with me after surgery, I don't know how i'd cope!

Sangye
05-09-2011, 07:10 AM
Your experience about that hospital, where you had to wait for hours in ER and no one saw you - is exactly what the NHS is like in the UK!!
And exactly what it's like in the US! I've lost count of how many times I've been in the ER since being dx'ed. For the first 2.5 years it was several times a month, sometimes several times a week. The Flagstaff hospital was smaller and the ER people knew me, so I usually got in quicker. But at my local hospital here and at JHU I've never been seen in less than 6 hours. Wish I were kidding about that. :glare:

drz
05-09-2011, 09:25 AM
And exactly what it's like in the US! I've lost count of how many times I've been in the ER since being dx'ed. For the first 2.5 years it was several times a month, sometimes several times a week. The Flagstaff hospital was smaller and the ER people knew me, so I usually got in quicker. But at my local hospital here and at JHU I've never been seen in less than 6 hours. Wish I were kidding about that. :glare:

I guess we are spoiled then in our area cause I have never waited an hour in an ER or urgent care clinic. When I went into a local hospital the first time with WG/GPA my daughter from NYC brought me to urgent care. They ran about four or five different tests and I was complaining that i had to wait an hour to get into my hospital bed. My daughter told me that in NYC I would still be waiting in a hall way for the first test to be completed. She could not believe how quickly they did all the x-rays, CT scans, heart monitoring, blood work, urine tests etc. before admitting me to inpatient care. To me it seemed a long time since I was very ill at the time but it was probably only three or four hours from when I showed up at urgent care to being in my hospital bed. Of course not being WGs experts they had no clue what my illness was so they started treating me me for pneumonia, bladder infection, and sprained arm, none of which I had.

Sangye
05-09-2011, 11:04 AM
Every time I've gone to JHU's ER, I've known I had to be admitted. Even so, I've never gotten out of the ER in less than 12 hours!

Geoff
05-09-2011, 09:06 PM
I almost feel embarrased to say that my experience with my hospital, Addenbrookes, is first class. As its only just over an hour away by car, it is my 'go-to' if I have a problem, although there are closer hospitals.

If my blood work throws up a problem then they give me a call and I am straight in, likewise if I feel something is wrong within myself, I only have to give them a call and I can go straight in.

I visited the ward the other day where I spent 2 weeks when first diagnosed. I handed them a plate full of freshly made doughnuts from our village bakery.

How I made the car journey with that lovely smell without tearing open the bag, I'll never know!!

mama2005
07-09-2013, 12:58 PM
my story sounds so much like yours. I had a dialation and a mucus plug was in my air way. I actually was unable to move it and passed out they had to put me on a vent until they figured out what had happened but I felt as if something was stuck earlier in the day. supper scary. glad it worked out for you.

Barbara N
07-09-2013, 02:15 PM
Well done, what a scarey three days. You always worry that they left something in there during the operation- I am so glad you are feeling better. Let's hope this fixes the problem for good.

Barry Forshaw
07-09-2013, 08:55 PM
What a nightmare! I'm thankful you got sorted in the end.

My wife suffers with tracheal stenosis and has to have dilation every 5 to 6 months. If she has medical problems in the meantime, and she's had the Wegener's so long that she knows if that's the cause, she contacts the wards at the local hospital directly. She's previously had major problems waiting four or five hours to be assessed when she probably knew more about the problem that the emergency doctors who were supposed to be treating her! So the doctors who treated her Wegener's gave them their direct numbers for the wards and if the Wegener's flares she can get admitted right away and be dealt with by people who understand the disease.

Good luck in the future.

annekat
07-10-2013, 04:54 AM
I am thankful I have not had any problems with tracheal or bronchial stenosis. I'm sorry for those of you who have, and always glad to hear of a story where there was improvement, a successful procedure, or a crisis was averted.

Meredith
07-13-2013, 12:10 AM
Had the same thing happen to me after my second one - unable to breath and my husband was piling me in the car to take me to the ER and I coughed and it came up. Made sure that my doctor knew so they would make sure I am cleared out well after surgery next time. I know how scared you were.

daystarr8
10-08-2014, 07:22 AM
I too get those stuck in my throat but I have never had dilation. I think I'm due for one. I just need to go to the best place to get it done. It seems to me what I've read the best place is the mayo clinic?