How do I get an order for a suction machine?

Linda C.
Linda C. Member Posts: 107 Member
in Head and Neck Cancer #1

Mornings are the hardest.  I know I have to eat something but I'm not hungry.  First off I have to brush my teeth and scrape all the mucous out of my mouth.  Then I go downstairs and put 4 oz of water down my PEG tube.  Now it's time to decide what I am going to try to eat.  Today I took a few bites of scrambled eggs and drank some chocolate milk.  I should have had a protein drink but they taste so bad I just keep putting it off.

 

For lunch I had broth and 4 more ounces of water down my tube.  I was feeling weak so I decided to go to Smoothie King and try one of their high calorie and high protein drinks.  Got a small one, 20 ounces, 964 calories, and 25 g of protein.  I tried to eat a few bites but it was grainy as it had strawberries in it and it hurt my throat.  So I may try another one without berries.  Just when I though I had found something I could tolerate I realized it had 125 g of sugar.  There are some smoothies with less that that so I'll just have to try some different ones.  I did feel a bit more energetic after about 30 minutes.  

 

Went to the center and had my treatment.  Today was the day I see the Oncologist.  He asked about my PEG tube leak and I said no more problems with that.  This is week 4 and he informed me that it was time to start using my PEG tube for feedings.  

 

I told him I was not in any pain and he said if I needed something for pain to get something over the counter.  I let that slide for today.

 

I told him my biggest discomfort was the Mucositis.  I explained that I gargled every hour and still had to dig in my throat with my finger and a paper towel to clear it out and that was barbaric.  I asked for a suction machine.  He said he had not ordered a suction machine in over 20 years and for me to ask my ENT doctor.  He then looked at my throat and admitted that there was a lot of mucous in my throat.  

 

In fact, I actually coughed while in treatment on the machine where you are supposed to remain still.  I told him that I had asked my family doctor for an order but he said that it would be up to my Oncologist.  Now my Oncologist is passing the buck to my ENT doctor.  If they weren't so expensive I would buy one myself.  He could have at least recommended Mucinex 1200 liquid.

 

I just wanted to leave his office and go home.  Didn't even ask for a liquid nausea medicine as the one he gave me makes me gag while it melts on my tongue.  Why give a person who is nauseous something that tastes awful and which takes an hour to dissolve on their tongue?  It makes no sense.

Comments

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited July 2017 #2
    I bought my own suction pump.

    I bought my own suction pump.

    https://mfimedical.com/products/schuco-s330a-aspirator?utm_source=google&utm_medium=cse&utm_term=19994594691&gclid=EAIaIQobChMI0Mr_rqyy1QIVxTLTCh0yOACmEAkYByABEgJ6p_D_BwE

    But after I bought mine, my oncols were so impressed with the results that they started making them a prescribed item thru Apria.  $11 per month co-pay.  The Apria model is battery powered, and portable, so I could travel with it.  I used mine at night because it was much quieter.

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited July 2017 #3
    AnotherSurvivor said:

    I bought my own suction pump.

    I bought my own suction pump.

    https://mfimedical.com/products/schuco-s330a-aspirator?utm_source=google&utm_medium=cse&utm_term=19994594691&gclid=EAIaIQobChMI0Mr_rqyy1QIVxTLTCh0yOACmEAkYByABEgJ6p_D_BwE

    But after I bought mine, my oncols were so impressed with the results that they started making them a prescribed item thru Apria.  $11 per month co-pay.  The Apria model is battery powered, and portable, so I could travel with it.  I used mine at night because it was much quieter.

    I finally did get a script

    I finally did get a script from my ENT for the suction machine and my insurance covered it.  Like the idea of a portable one.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #4
    Have a little care with the

    Have a little care with the usage.  I probably made my mouth drier than was good, but I was so desperate.  Also, go slowly, early on I vacummed up some major sized scumballs that conked out the machine.  The mucus is from the radiation damaged throat tissue, it is not coming up from your lungs.  The mucus perversely has a health purpose, it is a bio shield to protect the damaged tissue.  I went from abundant moisture from the mucus to drymouth and the transition period was fairly short.

  • Linda C.
    Linda C. Member Posts: 107 Member
    #5
    I don't have a problem with

    I don't have a problem with dry mouth.  Just had my 22nd of 35 treatments and my mouth is always wet with mucous.  It often chokes me and I gag a lot.  Gargling helps as well as a suction a couple of times a day.  However, the mucous is right back within minutes.  It is especially bad right after tube feedings and water flushings.  It causes me lots of nausea which is just awful.  It is my biggest discomfort as I am not in any pain as yet.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #6
    I never had pain, took no

    I never had pain, took no pain meds.  If you are only suctioning on anything less than a minute by minute schedule you are doing better than I did, I practically lived with it in my mouth.  It continued for about two months post, but the volume dropped.  By three months post it was over, it depends on how fast the tissue heals.  Calories=recovery.    So when you start feeling better, you start feeling better in lots of ways; know that it does come, but on its own pace.  

    My drymouth is now improving, at 7 months post, there are entire days when I'm 'normal', then it comes back.  From what I read here that's likely to be part of new normal, probably was there all along, certainly I had a dry mouth sometimes before cancer treatment, but I notice it now.   It becomes something you manage with technique, and there are many products to assist.  Sorting that out seems ongoing.  That plus a tendency to sunburn on my neck are my lastings.  You will get there, it will happen.

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