I'm Tired Of Coughing

The last few days I have been doing lots of coughing.  Okay, I always cough a lot but it's been noticeably worse the last few days.  My throat is so dry and scratchy.  I think it's the cold dry winter air.  I purchased a personal size humidifier for my desk at work.  At first I thought it was helping but now I'm not so sure.  The one I run at home during the night is a warm mist vaporizer.  I'm hoping this will pass, I'm tired of cough drops that don't help much.  Plus I'm tired of the sore throat it has caused.

So far my breathing is okay since the last dilation.  Not 100% but I'm able to keep walking on my treadmill so that's good.  Especially after all the Christmas snacks that I've been enjoying.

I hope everyone enjoyed their Christmas.  I know I did.  My family spoiled me with lots of nice presents.

Not sure if I posted since the surgeons office phoned.  He wants to see me in March and I get to have a ct scan with contrast beforehand.

I wish you all a Very Happy New Year!

Relieved And Confused

Just when you think you have a game plan - things change.

Yesterday I had my appointment for the surgeon to do the bronchoscope and dilation.  

I had to be there at 11:00 and the way I worry about traffic and crowded parking garages we arrived at 10:30.  Traffic wasn't bad but the garage was pretty full.  Once inside they took me right back to be prepped for surgery.  By 11:00 I was in and ready to go.  Then she said I wasn't scheduled for the OR until 1:00 so we waited and waited.  The whole time my blood pressure was being monitored every 10 minutes and I had an IV going.  Plus this surgeon requires the leg pressure sock things to prevent blood clots.  They said he always requires a shot of heparin.  Silly me thought they'd put that in my IV but I was wrong.  It went in my stomach!  It actually didn't hurt that bad but it sounded awful to me.   By 1:30 or 2:00 I was informed that the OR I was scheduled for had to be used for an emergency and I was on hold.  It was after 3:00 before they finally took me back.  The procedure and recovery took about an hour.  

While waiting to go back for the surgery the nurses were discussing the resection surgery and how major of an ordeal that is.  Saying maybe 10 days in hospital and very important to do exactly as told afterwards and a very long time off work.  I was asking lots of questions and preparing myself for the upcoming surgery.

Well, after the procedure the surgeon came in to see me and said at this time they're cancelling the resection surgery.  He doesn't feel it's worth the risk.  He says the narrowed area is short but just really too close to my vocal chords for comfort.  He doesn't want me to end up with a trach and/or lose my voice.  He said as long a I can come for these dilations as needed and they work enough to help me function through normal daily activities then we'll just stick with these procedures.  Wow... that's not what I thought I'd hear.  I'm very glad he went in and took a look so he would have a game plan for the surgery since he then found out he didn't think it was wise to continue. 

It's a relief and yet confusing.  I guess it's just something I will have to live with and just take it one day at a time.  Thankfully I have a wonderful family to help me through the bad days; when the narrowing worsens and I have no energy.  They take great care of me and I thank them for that!

Thanks for all the prayers, texts and messages.  Today I'm breathing good and relaxing at home.  Back to work tomorrow.

It Has Suddenly Become Real

I got the call today.  Actually I got two calls today.  First the surgeons nurse called to tell me the bronchoscope is scheduled for next Tuesday.  I have to be there at 11:00 AM.  The procedure will be around 1:00.  Okay, this is good. She said both surgeons will be involved.  They will dilate while in there so hopefully I'll be able to breathe easier until the resection surgery.

Then this afternoon she called back....and that's when things got REAL!  She said the resection date has been set for January 31st.  I'm glad to have a date set, that's what I've been wanting since I decided to go ahead with this.  But now it's real, it's going to happen.   I try to stay strong and I think I've been doing a good job of it so far.  My family and friends worry about me enough, they don't need to see me get upset.  But it sure would have been easy to break down today.  I'll admit I had a few tears when I got home and saw my family but it didn't last long at all and they were cheering me up and making sure I knew that things would be fine.

Not much else to tell at this point.  I'll let everyone know how I'm doing after the procedure on Tuesday.  Wish me luck and keep the prayers coming.

More Waiting....

I'm still going to have the resection surgery but now it's been delayed.  It won't be in the next few weeks like originally planned.

This morning I had to be at Barnes for a chest ct scan at 8:00 AM, thankfully we left plenty early because there was some freezing rain when we left and then traffic around St Louis was backed up.  After the scan I saw the surgeon at 10:00 AM.  He was very nice and I feel very comfortable with him.  He said he would like to go in and take a look before the surgery. He's scheduling this minor surgery for the next two weeks, they'll call to let me know when.  He will dilate while he's in there but not do the laser, as that seems to just make more scar tissue to build up. I asked when the resection would be and he said probably in January or February.  So now I wait.  I was disappointed because I want this over with.  I will try not to dwell on this and just be patient as I wait.

I've read a lot about this surgery and what other people have gone through.  So needless to say I had lots of questions for the doctor today.  He took his time and answered them all in detail.  I took a few notes because I figured I'd forget something.

Here are a few of those questions:

Have you done this surgery before?   Yes, it's not a common procedure but I do at least five a year.
Of those have you had any problems?  No, all went as planned.
Has anyone had to return for further surgeries or dilations?  No
How long will I be in the hospital? Approximately one week.
How long will I have the chin stitch in? 4-5 days
How long before I can eat? Probably two days
How long is recovery time? 6-8 weeks is normal

He said the section of my trachea that is narrowed is short, which is good.  But, and this is a big BUT- it's very close to my vocal chords.  They will do the very best but I have to know there is a chance my voice could be effected.  Also due to the location there is a chance I could end up with a trach.  This is something I'm going to try and not think about.

After I saw the surgeon I had to go to pre-op dept.  That dept is always busy and takes forever.  It's never fun spending the day at the hospital/doctors office but at least everyone I had to deal with was very friendly.  It's amazing how nice they all are at Barnes Jewish.

I couldn't have made it through the day alone and thankfully I'm never alone.  My family is ALWAYS there for me.  Today Phil drove me there and sat by my side, as usual.  If you know Phil he hates waiting so this was really like a cruel punishment for him.  He didn't complain once!  If you know me then you know I hate riding in a car, especially in bad weather or traffic, but thankfully Phil drove extra cautious and never scared me once.

Now I wait for the call....

Stressed!

This time of year people should be excited about Christmas and busy shopping.  I'm not really feeling it, at least not yet.  My mind is so busy with so many different things.  My upcoming appointment with the surgeon tops that list.  I don't like waiting.  I want to know right now what they have decided and when surgery will be.

Who's happy about the threat of snow for Thursday?  Not me, we have to be in St Louis for my appt that day.  Plus my daughter Sarah and her new fiance will be flying back home that evening.

I'm feeling more and more tired and that annoys me.  I want to be Christmas shopping or even doing house chores but instead I sit in my recliner.  I planned a day off  to shop with Sarah next Monday, I hope I have enough energy to enjoy it.  I'd like to get things bought and wrapped before my surgery - whenever that might be.

My breathing is getting noisier and I feel like when I'm at work and have to take a call I should first explain why I sound like this.  It's a little embarrassing at times.  If it's a short call I can keep it under control - or at least I think I do?!?   But yesterday I had to talk to one of my bosses on the phone for awhile and I knew it was annoying/noisy.  I apologized and he laughed - it was no big deal but it got me thinking about what customers might think that don't know about my condition.

I'll update again after my appt on Thursday - hopefully with a date for this surgery.  I'm ready to get this over with already.

What is GERD?

Another cause could be GERD, here's a link that explains what that is...   http://www.mayoclinic.com/health/gerd/DS00967

I never knew I had acid reflux but after being diagnosed with tracheal stenosis they said it could be the cause or maybe just play a part in making it worse so I was tested.  I guess my symptoms are silent because I have it and didn't know it.  They had me do a barium swallow test (upper GI).  Here's a link to that test.  http://www.fmh.org/body.cfm?id=181   They put me on omeprazole for awhile and then changed me to Nexium, the purple pill.  I was sent to a specialist for this and they put me to sleep and went down and looked around to see if I would need surgery for this (upper endoscopy).  Apparently they didn't think it was too severe.  That doctor wasn't really that nice and I never followed up with him again.  I take my nexium per my current doctors orders and will continue on that as long as he says to.

Today's been a bad day - as far as breathing is concerned.  Thankfully I have a great family that takes good care of me.  I have pretty much just set in my recliner all day. Sarah drug out the humidifier and hopes that will help me some. Sarah also went to the store for me today and everyone is helping me with anything that needs done around here.  We usually put our tree up right after Thanksgiving but Sarah was busy packing for her trip to the Bahamas with Randy, and I wasn't up to it so we put it off until next weekend.  I'm so happy for her to get this vacation.  She spends so much time studying for exams that it will be nice for her to hit the beach and relax.

Until next time...  take a few deep breaths for me and stay tuned for another post.

What causes the narrowing?

I wish I knew what caused my narrowing.   There is a slight chance it was caused from being intubated when I had surgery when I was only ten. I kept having kidney infections and extremely high fevers.  They found out that one of my ureters was narrow and not draining which caused the infection.  At that time I was sent to Barnes Jewish Childrens Hospital (part of same hospital I'm going to now).  That was quite an ordeal and I believe I was in the hospital for two weeks.  I have a six inch scar around my side but it worked and I never had anymore trouble with that.  My hopes are that I can say the same after I have this next surgery.  I may have a four inch scar across my throat afterwards but if it works and I can breathe... it's all good.

So that's one possibility - being intubated.  They say that is one of the most common reasons but since mine was so long ago, and I don't remember having any trouble breathing as a child it's probably going to remain a mystery.

Another cause is Wegeners Disease -  http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833  I had not yet been tested for this so I asked the doctor last week if that is something I should be concerned with.  He didn't think so but decided to go ahead and do the blood work (C-ANCA) .
When I spoke to the nurse yesterday I asked her about the blood test results and she said no news is good news.  Then she checked and said it was within the normal range.

Other causes are trauma, infections, congenital, and a few others that are listed in the attached link. (top right under links; what is this illness)

I guess I'll never know the cause but that really doesn't matter; as long as I find a treatment/surgery that works to help me breathe.

Oh to be young again....

The cold dry air is not my friend

As I await my appointment with the surgeon I'm noticing a rapid decline in my breathing.  The cold and dry air really make it worse on me.  I know a lot of ladies that are part of my online support groups say the humidity is bad but that's not true for me.  During the summer when it was hot and humid I would enjoy any chance I got to just sit outside in the shade and breathe - while reading a good book.

Today I received a call from Barnes asking if I had another number for my insurance carrier as they had tried for two days to get approval for my ct scan next week but kept getting a busy signal the whole time.  She was going to keep trying but was worried with the holiday that she might not reach anyone in time.  I hope it gets approved before I show up and then they have to tell me no go.

 I also received an email back from the current surgeon answering my questions on finding a surgeon who specializes in this exact field.  He wrote "Many places do lots of this kind of work, but haven’t given themselves the title of being an “airway center.” There is no formal committee that offers this designation to institutions that meet certain criteria."

I'm very anxious for my appointment on Dec 5th to get here so I can maybe find out what time frame I'm looking at to get this over with.  The actual name of the surgery I'm told that I need is cricotracheal resection.  There is a very good chance it will mess up my voice.  I may never sing again - okay, I don't really sing but I might sound really different when I talk.  Yes, it sounds pretty scary to get my throat cut and maybe lose my voice but when you can't breath that stuff really doesn't matter.

The stridor (noisy breathing) is coming back now too.  Between that and all the coughing I'm lucky the girls at work don't kick me out of the office.  Just kidding - they are very supportive and always concerned when I have a bad coughing fit.

In future posts I may posts pictures and details that some people may not be comfortable with.  But I want to describe everything in detail.

Thanks to all my family for being so supportive and all my friends for your kind words.  Keep the prayers coming.

Take a deep breath for me and don't ever take it for granted.

Second laser/balloon dilation surgery

At my 6 month checkup in January he did the scope again, and it didn't look too bad but sometime around March I realized it was closing up again.  On May 21, 2013 I had the same procedure done.  It wasn't the same instant relief that I felt the first time.  The improvement was noticed more by the fact that I could go up stairs again and carry things without huffing and puffing.

I had my hopes up that this was maybe the final surgery needed.  They said sometimes they  just have to stretch it a little more and then it would stay open.

My hopes were deflated just a few months after that procedure.  Stairs began giving me problems again and the coughing  was getting worse. This second procedure didn't last near as long as the first.   I was able to keep up with daily routines so I ignored this as best I could.  I knew my 6 month checkup was coming up and I decided to just wait it out.

On November 20th I went for that checkup.  What a shock....  I knew it was narrowing but wasn't prepared for him to say it was 75% closed again!  No wonder I have no energy!  I was so glad that Phil (my husband) was with me.  The doctor took his time to answer all our questions and said we had three options.  One, wait until I can't take it much longer and do something; Two, have the same procedure done again and hope it lasts longer but probably wouldn't; or Three, go ahead with the resection which is a major surgery.  I don't want to keep going back for the same procedure.  It doesn't last long enough.  I said I want to get the resection and so he  scheduled an appointment with the original surgeon that I saw at Barnes, and I go on December 5th to see him.

I have no idea when the surgery will be?  Over the holidays?  Wait until next year?  Being 75% narrowed I sort of think we better just get it over with.  I guess we'll see what their schedule says.  I'm also considering seeking another opinion from someone who specializes in this exact type of surgery.  How do you know when to trust your doctor completely and when to keep looking?

Where Shall I Begin...

As I prepare for my tracheal resection surgery my daughter has encouraged me to start a blog.  She said that since we have been reading other blogs online and they have helped me to understand my illness that maybe I could also help someone in the same way.  So in hopes that this will help I will try to tell my story.  She also thought it would be a good way to keep family and friends informed as we go forward. 

I guess I should first tell you about myself then explain the illness.  I'm a 50 year old woman who has struggled to breathe for many years.  I can't say for sure what year I first noticed this but I can remember a few times when it really effected me.  I just kept thinking I was out of shape and making excuses about my heavy breathing, constant coughing and clearing of my throat.  Thinking back I know I really struggled when I went as a school chaperon for my daughter's Spanish class to Mexico in 2004.  We were doing a home stay, and the home I was at was up on the side of a huge hill.  I had to go up many sets of steps to get to the home I was assigned to.  After one try I knew I couldn't do it.  I had to pay a taxi to take me every time that whole week.

Over the years as I would complain about not being able to breathe I would see the physician's assistant, and I was always diagnosed with a sinus infection.  I was so trusting that I didn't even think about questioning the diagnosis.  At one point I was sent for a sinus x-ray that was clear.  I would always be given a prescription for an antibiotic and prednisone. (The prednisone would actually be a temporary help with the real issue, therefore I'd feel better for awhile)

After I complained enough they tested me for asthma (which most people with this illness are misdiagnosed with at first) but they decided that wasn't it.  I'm not sure how many years this went on but finally in March of 2012 I couldn't stand it any longer.  Being short of breath was one thing, but it had gotten to a point where I couldn't function in day to day tasks.  My breathing had become very noisy (stridor) and the coughing was worse.  I couldn't go up a set of steps without being totally out of breath.  That's always been the worst for me - stairs!  I called and insisted they send me to a specialist.  First off I saw someone locally that checked me for allergies.  Both my arms were stuck with all those tiny pins and the red bumps never got any larger - no allergies....so then he listened to my breathing and said it was coming from my voice box area and thought it was vocal cord dysfunction.  Never having heard of this I quickly googled it and found out what I could about this illness.  

Next they sent me to an ENT  and silly me I went all alone.  I thought it was this vocal cord thing and wasn't worried. That was a big mistake.  He didn't explain what he was doing, and when he hurt me  I made a noise. He told me very sternly to SIT STILL. That happened at least twice. The procedure was a flexible laryngoscopy.  After he finished he very quickly said there will be no simple fix, you need to see a chest surgeon.  Wow, did he just say what I thought he said?  By the time I could even comprehend what he said I was in the hall making an appointment to see the next doctor.

That brought me to Barnes Jewish Hospital in St. Louis where I saw a very kind and professional surgeon. Of course first I had to have some more x-rays, ct scans, etc.  This new doctor took his time to explain how my trachea was narrowed and advised I would probably need a surgery to fix this.  He wanted to schedule it with another surgeon there.  Well, instead of them calling to tell me when my surgery would be they made me an appointment with this second surgeon because he wanted to see me first.  He was is as nice as the first guy there.  He explained that I had other options.  He said the area of my trachea that is narrowed was a small section, and said we could try a laser/balloon dilation procedure.  They put you to sleep and go down your throat.  The laser is used to cut into the swollen area and then stretched with the balloon.  He said sometimes this helps, and sometimes it needs to be done a few times.  We agreed that this is what I should do.  So on July 9th, 2012 I went to Barnes for this surgery.  

Let me say that at this point I couldn't go up a flight of stairs without stopping on each and every step to catch my breath.  I couldn't carry out the trash, I couldn't blow dry my hair, I couldn't carry in my groceries.  Besides all this when you can't breathe you don't have much energy.
I was really starting to know my limitations, but at times I 'd forget.  Once someone knocked on the door, and I was alone in my nightgown so I ran to get my robe before going to the door....that had me gasping for air for several minutes.  One day I was helping my husband unload the racecar and move it to the garage.  I made sure no cars were in the area then ran to the garage to make sure he knew how close to pull up. I almost collapsed because I could run but once I stopped at the garage I couldn't catch my breath.  It was scary and after that I pretty much remained sitting in my recliner whenever I could.

On July 9th I was a little nervous for this surgical procedure but knew I had to do something.  Not being able to breathe is no fun at all.   After the surgery I was able to take a deep breath.  Something that most people take for granted.  It was the most awesome feeling.  I just kept taking deep breaths. When I got home I raced my son across the yard.  The difference was amazing.  I was so very happy and I just kept telling my family "watch this" and then I'd take a deep breath.

I enjoyed clear breathing for several months.  

To be continued....