2016/07/04 – ISO wish my timing were better

2016/007/04 – ISO wish my timing were better

This tube feeding is a VERY frustrating business. The tube sticks out of my upper abdomen about a foot and a half. It has a plastic clamp to seal it off, and an adapter at the end, which will receive the business end of either a regular syringe, or a big 60mL syringe with a big nozzle. Neither of them has any provision to lock the syringe to the tube. Friction only.  Are they that stupid?  Really??  To add insult to injury, they automatically included with my liquid food, a box of hang bags like IV bags, with LOCKING CONNECTORS!  In order to fit the joke I have hanging from my side, it requires an adaptor (see photo) and it tightens my jaw every time I use it.  I have had several very messy and stressful malfunctions, getting not only food, but stomach acid, all over myself.  There is an entire system designed, built, and sold and used, to connect the bag to a tiny button on the abdomen, locking it in place during the feeding, and then toss the dirty stuff, leaving just the button on the surface of the abdomen.  https://youtu.be/8WKgKJ66mk8 Why the HELL don’t I have THAT instead of THIS kludge?  This business hanging off my side and hurting and flopping around is nothing but a hasty lash-up.  We’ve had the technology to do it right for decades.  I’m disgusted and angry.  www.safeenteralconnections.com

Now that I have the tube I have, I am not eager to go back in for anesthesia and endoscopy and such, but I am really upset about the impracticality of what they installed.

If only ISO happened on schedule!
If only ISO happened on schedule!

The system they sent with the bags has a locking connector and – believe it or not – an adapter, to fit my outdated tube.  Turns out that I got my tube just a little too soon. The old system is supposed to have been phased out and unavailable as of January, 2016, but of course, things are running behind. http://www.medline.com/pages/enfit Instead I get the kludge.

At least I have discovered products that will flow through the narrow tubing, yet give me lots of calories.  I now put a cup of whole milk into a shaker, with an ounce of fiber, and add a cup of Jevity 1.5, to make the main mix. First I pour two ounces of coconut oil down the tube, and then follow it with the mix.  No more gagging and choking on the thick stuff I used to mix up.  That is a definite improvement. I have managed to obtain many of my meds in liquid form, allowing me to add them to the mix, but then there are the pills.  I was using a plastic pill crusher I bought at the pharmacy, but it was not much use.  I bought a coffee mill (a real grinder, with ceramic mill parts) and it does an admirable job. Now I strain out the shards of enteric coatings with a tea strainer, and down it all goes.

Another item of very encouraging news: no more Cetuximab or the other two chemo drugs I was getting… because they didn’t work.  Instead now I will get a new drug beginning Tuesday (2016/07/05) which works differently.  It is considered an immunotherapy, because it aids the immune system instead of suppressing it.  Hallelujah!  The new drug is called Pembrolizumab (Brand name Keytruda) and it binds to a site on cancer cells that triggers them to self-destruct (apoptose) as they should have done the moment they became zombies.  I have a lot of hope for this one, especially since it is not poison.  Maybe this brand-new drug (only barely approved by the FDA) will be the key.  Goodness knows I could use a key.


One thought on “2016/07/04 – ISO wish my timing were better”

  1. We are so sorry you are going thru these trials. What can CB and I do to help. We are serious please call us at435-4850 Loveto you and Char

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