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Two Year Check In
Hi all,

have not been on the site for such a very long time. It is two years since my husband had IL surgery to remove esophagus and perform gastric pull up.

There have been good times and there have been bad. Recovery does not get your old self back and you learn to love the new you. We are a lot more casual about eating now and have learned to trust that there just are days when food is easier than others. This helps to keep the enjoyment in eating.

He has had two episodes of aspiration pneumonia which resulted in hospitalization. They were actually more concerning to us due to sudden onset and severity of symptoms. The second episode was much shorter than the first as the doctors were much more aggressive in treatment.

Thank you to this site and the wonderful members who provide so much support and care!

CaregiverCAL
Catherine
5 Replies
Brighty
8442 Posts
CaregiverCAL‍ than you for coming back to update us. Always great to hear how members are doing down the road. I'm sorry about the pnemonia but glad the doctors were on top of things with treatment. I wish you and your husband good health and happiness. Keep in touch!
HW123
6 Posts
Glad to hear things are progressing. It's not exactly a quick process.
Over the past 8 1/2 years since my IL esophagectomy, I've aspirated a number of times, but never close to needing hospitalization. It always happens while I'm asleep, and only once I've ended up lying flat. Of course the burning sensation, and ooky taste, wake me immediately. But after a couple of Tums plus water, and a lot of coughing while sitting up, the sensation subsides somewhere between half an hour and an hour later. I'm sure this is hardly news to you.
I live alone, however. So I have overcome the problem almost completely by not sleeping in bed. I used pillows and propped the head of the bed up, but it seems I like sleeping flat, so eventually I'd be up coughing and chewing Tums.
I looked at the beds that have the adjustable frames/mattresses, but they just didn't feel comfortable.
My solution was to just sleep in my recliner. I wedge myself in with two pillows and partially recline to keep my head higher than my feet for the night. It seems to work.
But like I said - I live alone. This arrangement could be more troublesome for couples.
Sorry to ramble on. I've just found this to be the best way to avoid aspirating in the middle of the night.
Good luck to your husband, and kudos to you for being there.
Hi CaregiverCAL

Thanks for sharing your two year update. I'm so happy to see you're back on the discussion. I'm sorry to hear about your husband's episodes of aspiration pneumonia, this must have been extremely frightening and unsettling. I agree with your observation that "recovery does not mean you get your old self back". Also your comment on FWP‍ 's post that the "challenge is finding a balance between managing energy and expectations". From my perspective I am still the same person; however, the treatment and surgery did significantly change daily eating, planning routines, energy levels, and activity levels. And, as importantly, required significant emotional and psychological adjustment. Having and recovering from EC does affect every aspect of one's life from the long and gradual recovery period, the altered physiology, and the emotional and psychological processes brought about by the surgery.

On the positive side, the possibility of a cure makes these adjustments worth it. I really liked your description "things we used to do on a weekend we now get done in a week". Oh well, we're retired now and can't go anywhere at the moment because of covid, so a slower pace is okay!


Thanks again for all your contributions and helpful suggestions over the past two years. Best wishes in his continued recovery.

Warm Regards,
CDN Traveller
So nice to hear from you CaregiverCAL‍ Catherine.

As mentioned by CDN Traveller‍ , your contributions and updates are so helpful to others who are just starting or are on a similar path.

Hugs
Lianne
Wow, 8 1/2 years since your surgery - you are an inspiration! We do have the lifestyle bed that raises the head. Took some getting used to but it works for us. For me, sleeping flat now feels like I am sleeping head down.

Keep well and thank you for your thoughts - they are much appreciated.

caregiverCAL
Catherine
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