In the past 4 weeks I have completely lost my ability to swallow. I ended up in the hospital with aspiration pneumonia and 9 days later, they are giving me a PEG tube and nothing more by mouth, even water, the rest of my life. I'm still in shock.

Oh Ed!!!! I am so sorry!!!!


Having a feeding tube for life is awful. If I can be of any assistance dont hesitate to contact me. I have lots of tips I can pass along if you need help with it.

Please take good care of yourself.

(((HUGS)))

Dear Uptown,

I'm so sorry this has happened to you. I suppose you have had a swallow test to confirm that you are indeed aspirating. This is, in my opinion, the worst side effect of radiation for head and neck cancer patients. Silent aspiration is insidious and hence extremely dangerous. John had it and he kept getting bacteria that normally are not found in the respiratory system in his lungs. He literally was on antibiotics non-stop. It is way safer not to swallow even sips of water because they can go down the wrong way and you wouldn't even know.

John and I struggled with that continuously and it is very hard to know that another member of the forum has fallen victim to it too. I hope you will find a way to come to terms with it eventually. I wish you all the very best.

I am sorry that becoming a "tubie" is a part of your new normal. I too am on a permanent PEG, five years this month. I hope that, once the shock and disappointment you feel at having your world turned upside-down have abated, you will find that living with a PEG is not so bad. I enjoy preparing food for myself ~ the textures, smells, chemistry of blending. I still relish having meals with friends and family, whether at home or in a restaurant. I do use a syringe and bolus feed, which allows for ease of movement and travel.

I note your dx of COPD: I have the chronic, progressive lung disease Bronchiectasis. Aspiration for those of us with lung disease, as you know, can be deadly. Let's keep on living! A PEG introduces a new challenge, as much emotional as physical. As I have followed your posts I have come to know a guy who can continue to "live life LARGE."

The Inspire website has a great online support community for those of us with feeding tubes, and there is plenty of good information elsewhere on the web. Let me know if I can he of help.

Ed, I am so sorry.
I do think that once you get your head around this, as Zenda says, it won't be too bad. We are all creatures of adaptation. You have had to make so many adaptations and adjustments to how you live your life already. Think of this as just 1 more. Life is worth it, I know that you know this.
Think how creative you will be with your Vitamix!
Think how much easier breathing will be. Life without infections and all that goo!
I know that there is no quit in you.
Tammy

Ed,
I believe you and my husband started into all of this about the same time.
He is facing the same issue as you....feeding tube only for life.
He is currently on a NG tube and anxious for a PEG tube to be installed this Friday (he had a PEG tube 2 years previous, but it became embedded, aspiration pneumonia (yet again) followed, and thus the NG tube while waiting for stomach to heal for a new PEG tube.
Amazing to me how perspectives can change. Now he is anxious for his PEG tube, since he hates the NG tube.
Anyway, just wanted to let you know that you are not alone.....misery loves company, right?

Anita

Uptown, that's bad news and my heart goes out to you. I know you will get used to the peg in time but what a huge disappointment for you.

Best wishes
Maureen

Ed, I have been looking for an update from you, of course, hoping for better news.

This is all so difficult... I hope it helps a little that we understand the trauma of trying to adapt to so many changes.

Lottie

Uptown, I will be having you in my thoughts and prayers for sure. I hope the transition goes better than expected and it just becomes a new normal as many of the past issues. It is so terrible that the long term survivors have to face such horrid effects.

Thank you, everyone. Ironically, 3 days with not even water by mouth and the lungs have more secretions than ever. I'm back on the suction machine. The pulmonologist says it is due to fibrotic tissue damage to the left lung, some during treatment, some from the neuromuscular breathing issues, some from the lungs being swollen all the time and some from the constant cycle of aspiration from COPD and breathing problems from aspiration.

Baylor Hospital Dallas is beginning a new swallowing boot camp with MD Anderson so I'm going to try. The throat muscles just stopped, the epiglottis on the left is now paralyzed and the left false vocal cord is paralyzed. I'm back home, alien in hand with constant feeding and hydration over 19 1/2 hours a day. I can honestly say, this is much easier to handle without the chemo and radiation.

A gentle reminder to everyone...live life large today. Tomorrow has way too many question marks! Thanks, again, and remember, because this happend to me, doesn't mean it will happen to everyone.

Love You Brother. You are always learning and teaching. And yes today needs to be "Large!" enjoy it.....

just catching up and so very disheartening to hear the news but thank you for sharing here. I wish there is something more to help other than some gentle words. I can say you have been and remain in my thoughts every day. Take care Ed.

I missed all this love! I owe y'all an update. 7 months in and except for 1 trauma incident with a little child running by me and getting caught on the tube and 2 little stoma sores, it's been going fine. I am having a little motivational deficiency with my gym activities but it's going good about once a week. I climbed back to 18 mph a couple weeks ago, even. I have also consulted with a voice specialist ENT and he thinks some filler injections on the left vocal cord would bring it back to center which will stop the constant aspirating and he is pretty confident I will regain all of my voice back. Plus, he thinks with all the weakened and atrophied throat muscles, he can stretch the upper esophageal sphincter and allow me to increase comfort eating. I went through 14 weeks of swalow therapy from an SLP that was part of the boot camp program from MDA.

I took a trip to Colorado and ended up in cardiac ICU with pulmonary edema, sodium depletion and aspiration pneumonia. We were going camping and at 8,000 ft all hell broke loose. My O2 sat tanked and dropped all the wat to 52% but we made it to the ER just as the fever shot up.

Uptown,

Thanks for the update. Good to,know that there is a possibility that some of the issues can be resolved. KEep well, friend.