When I noticed my hallejuahs were getting somewhat raspy and the mucous worse, I did not worry. I cranked up the usual cures: water pik, seltzer water, extra humidity and steam in face with towel on head to no avail.
Starting Friday night it got so bad that I would choke and then have great difficulty breathing. By. Sunday night I was wheezing all the time despite having moved out to the couch to sleep at 90degree angle. My caregiver wife Bev's patience with my customary swimming in the existential River of Denial (my phrasing of the Nile is not just a river in Egypt) disappeared that night when I briefly turned purple and then struggled to breathe.
when I broke down and agreed to a Tuesday emergency ENT call, my ENT refused to see me but instead insisted I go to the emergency room but not my closest usual one, only the CCC one. After a Lombardi cancer center ENT scoped me, and I turned purple, My ENT had me admitted .. The tentative diagnosis is radiation induced CPOD (chronic pulmonary obstructive disease ) exacerbated by dysphasia (swallowing problem)

This is day 2 in hospital (my wife brought over iPad this morning as I did not expect emergency admission so packed nothing . ) Treatment is steroids, benadryl , prevacid, oxygen, Nebulizer and suction machine. Really has made a difference for the better.

Hope to be discharged once a Nebulizer and suction machine get delivered to my home since I can get prescrip steroids

Keep you posted
Charm

Charm
Sorry to hear of your ongoing after effects from radiation hope the steroids return you to your normal its amazing what your body can endure yet you still maintain your humour in your posts,
You are one tough cookie
Hope to learn more from your posts and knowledge as I continue this journey

Wow, Charm, that is one scary story. So glad you are getting medical attention and that it is helping you to breathe better. Sending you prayers and healthy thoughts. Thank God you have Bev! Take care of yourself.

Anita

Glad you went to the hospital in a situation like that. Feel better!

Dang Charm. Are you trying to win the prize for the most horrifying experience we oral cancer patients/survivors have. If so, you're doing a good job. I'd say I had sympathy for you, but I really have sympathy for your wonderful Bev. I haven't been on the Forum for a while, but it seems when I do check back in, you're pulling another stunt. STOP IT! Okay? Our troubles just keep on popping up. I know I still have problems and it's been FIVE years. You and Bev do have my prayers and hopefully you'll have some good news soon. Keep us updated.
julieann

Oh Charm! I am so sorry!!!

Please do what they tell you and get well soon.

(((HUGS))) to you and your lovely wife Bev. She is such an angel!

Oh my goodness, Charm! You've had a rough few days, that's for sure. Glad you're a little better. And so glad you have Bev. She really is an Angel! Now do what she tells you and get better soon!

I knew you had been awfully quiet...actually wondered if something might be wrong.

So so sorry Charm..what a major PIA. Glad you feel like they might be on the right track with the COPD dx and that the meds are helping.

Deb

Purple is never a good color for skin!! Thanks for listening to Bev. You guys are so stinking stubborn.
Get well soon. Enjoy the Nubulizer jitters!!
Kathy

OMG - that sounds so......scary!!! I'm so glad to hear that the hospital admitted you (sorry that is where you needed to be at the time) and that the meds are working and you are feeling a little better. Hope you get out of there and home soon. Listen to your doctors and Bev! Give her a hug from me and thank her for taking such good care of you. As a caregiver our worry never seems to end. Big Hugs to you also!

Hugs dude you have STAMINA and are my hero. Hopefully they will get it under control. You no doubt feel the same.

Charm,

Your stubborn nature reminds me of...well...me. So glad we have our better halves looking out for us. I know Allison would have done the same as Bev as she does threaten me often with hospitalization should I not do what she say's to do.

Might want to try and act on Bev's advice sooner in the future in recognition of your stubborn nature. At this stage in your recovery, time can be your enemy if you spend it in the wrong place. Acting quickly to even perceived problems should be your action plan for at least the next month.

By the way: in recognition of her meritorious service in the name of my health and care, I gave Allison a one week all-expense paid stay at a health spa in Arizona for a Christmas gift this year. She leaves next week and the timing couldn�t be better as we are currently under a blizzard warning up here in cold Michigan. Just can�t thank that girl enough for all she does. Your Bev looks to be cut from a very similar mold. I think we would both be looking at the grass from the wrong side without our personal saviors.

Great to hear from you all. I escaped from the hospital late yesterday, the major delay being a requirement to have a working nebulizer delivered and set up at home, plus the DuoNeb medication prescription filled. and a working suction machine prior to discharge. Suffice it to say that in order to do this, I had to harass, chide, and threaten multiple parties. although in the end, my harmonious relationship that I have carefully cultivated to be free of any of the above tactics, with one pharmacist turned out to be the key to success. but then she has always been reasonable and responsive to that approach which others apparently see as permission to put my requests on the back burner or ignore.
Not out of the woods yet, still very weak, heavily congested, and treatments every four hours for about the next 20 days looks like my immediate future, but nothing I can't handle.
Especially since the alternative was to have a permanent tracheotomy tube as was their initial recommendation.
Hate to skip my gym workout today, but that's the price I pay for not acting earlier on this.
Slept wonderfully in my own bed last night.
Oh, I did not mention that one of the negotiated issues with the doctors at the hospital for my release was to see my cardiologist to verify that my insanely high readings on blood pressure and heart rate the entire hospital stay were in fact just objective evidence of my anger over rigid hospital requirements like being kept on a 24 hour IV drip, a 24 hour EKG monitor, etc etc that were never necessary for me yet non negotiable as an admitted patient. I know I should just let it flow off my back and accept it with zen patience, but on a visceral level, I see that as giving into bureaucratic evil, so it shows up in those readings. The heart issues predate the cancer although both were discovered within the same month.
Still loving life though. Thanks again for all the support
Charm

Hi, Charm
glad you are home. I am really glad you were able to negotiate your way out of the trach tube.
Very best wishes,
Maria

Charm, I�m glad to hear you are home and doing better. You know Valentine�s Day is coming up � I think Bev deserves and extra special gift this year! Take care of yourself and listen to Bev.

Charm,

Glad to see you back at home. I am sorry to missed the post initially but so relieved you are not an alien from planetC.

I love your spirit but maybe you let this one get a bit beyond what's reasonable. :-) don

You scared me. Not nice. I am away getting some much needed heat from the sun, so I missed the whole thing. Glad you are at home and that Bev WON a disagreement. She is now a hero of mine as well .

I will be home on Tuesday and will check in again then. Until then - Behave

Hugs Donna

Charm,

Remind yourself that your principles are not worth your life, or the stress on your wife.

Bev, you're a good woman. I'd have kicked his ass myself!

Thanks everybody

Hey Kick a man when he's down why don't you?
I'm hoping the cardiologist gives me a clean bill of health. He was able to avoid me getting stents 5 years ago and just using statins so I could get the radiation TX and later surgery. On the male side of my family, heart disease rules and it was only thru working out that i had already developed "micro vascularization" around the blocked arteries that showed on on a coronary calcium scan for plaque. so I had good flow..
Interesting description and explanation in the South Beach Heart Book . Reading the product insert, turns out that the nebulizer medicine revs up heart beat and blood pressure.
Then I can focus on this radiation effect.
I am very lucky to have Bev
Charm

You are lucky to have Bev, and what I love is that you show it to her everyday. I miss you guys! Keep swinging brother.

Charm,
So glad that you are home and still out there. You are truly one of my heroes!

So sorry to hear about your new "complications". What are you using in the nebulizer? The reason I ask is you should be using Mucamist, aka Acetylcysteine. It issued for things such as getting the thick goo from around the lungs as well as the entire airway. It then bonds to the DNA and literally converts the mucous to a salt. 3-4 times a day would do wonders for the breathing although it may not feel like it while you are nebulizing. Cough up what you can while doing the nebulizing and after. Have you thought of a consult with a neurological pulmonologist? The main reason I ask is that some of the issues we face relate to neurological/nerve denervation from radiation and surgery to the neck and most doctors don't get it. Sometimes oxygen is good but if your problems are related to nerve or neuromuscular issues, oxygen can force the CO2 down to accumulate to the bottom of the lungs while you feel refreshed from the oxygen and oxygenated blood. An FCV will be done to measure your lung capacity if they have not done one. With breathing issues developing, you might want to check that won't. They also specialize more with what some of us may be dealing with and they understand much more about assistive devices to help your breathing such as an IPPB, cough assist, BPAP for relief breathing or even an ambu bag to help expand the chest from the inside. Second opinions are often good anyway. I was sent to a regular pulmonologist and he said I had diminishing capacity but really just needed to try harder to breath.

Many of us that get the thick goo coming back years later battle trying to find the right doctors because we fall outside of true cancer world. It can coat the airways as well as the digestive track and that is what often kills cystic fibrosis patients. I started coughing up post nasal drip plugs as the constrictors atrophied and choke on them if I lie on my back. When it gets so bad I am coming up a pint a day, I drink a half a bottle of Acetylcysteine, approx 5 ml, and within 12 hours I have some gut wrenching dry heaves with goo pouring out my mouth and nose. It actually clears out my entire digestive track and the result is improved nutrient absorption. Warning, though, drinking it is not for the faint of heart. Isis like rotten eggs. I just pinch my nose and down the hatch. The last one lasted over 2 months as our weather changed to warmer. Doing some nebulizing as we speak and we had a bad storm front roll through Friday and 85% humidity which made it tough with the mountain cedar pollen making the goo flow.

Keep an eye on barometric pressure and relative humidity. Sometimes quick drops in pressure and high humidity make breathing nearly impossible. Others can be affected just the opposite. I hope this helps in some way. Hang In there!

Be well but be vigilant!


Ed

You did read my sigature line right?

Kickin' ass and taking names is what I do for a living!

Sometimes it simply must be done, 'cuz really, we'd miss you!

Uptown

Thanks. I am noticing that the late recurrence of "goo", choking mucous, etc does seem to fall into a twilight zone outside the standard cancer zone. Certainly, the posts on OCF concerning mucous and choking indicate that it is a problem. This third round of radiation really triggered it worse than any of the prior 5 years.. My nebulizer is the basic home version so just compressed air, no oxygen.
I;m using the generic version of DuoNeb duoneb insert
I will see about getting a pulmonologist referral and a FCV
Appreciate the extra input
Charm.