Recent content by kellysal

  1. K

    They gave me the tube with the 3 ports at the end. They say in 8 weeks I can swap it out for mic...

    They gave me the tube with the 3 ports at the end. They say in 8 weeks I can swap it out for mic key. What do use to secure it? Did you get yours changed yet? Did you get the Radicava?
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  2. K

    hi Lisa mine would not send either! I had the stitches/buttons removed on Thursday. That was...

    hi Lisa mine would not send either! I had the stitches/buttons removed on Thursday. That was apparently causing all the pain. I’m day 14 it still gets sore it’s very high so wearing a bra at this point irritates it. Think I have the feedings figured out
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  3. K

    Hi Lisa, Got the peg last Monday was not as easy as I thought 5 days on pain pills! So i started...

    Hi Lisa, Got the peg last Monday was not as easy as I thought 5 days on pain pills! So i started out feedings small 60ml Kate Farms 60 mil flush water before and after 3 x a day . Worked my way up to 180 ml . Today for lunch feed I started to cough with water flush them with the Kate Farms as...
  4. K

    Anyone else on AMX0035?

    I have been on AMX for about 1 year. Originally I was taken both separately. Then we sent the prescription to a compounding pharmacy. Dosage 10 pills a day. I can’t tolerate 10 gastrointestinal issues. I take 8 a day. I open the pills and put them in water at least 8 oz . Less gives me heartburn...
  5. K

    Oral Radicava

    I guess I was fortunate I still have private insurance. It took 3 weeks but I received mine yesterday. 70.00 out of pocket. I have not had infusions prior.
  6. K

    Peg tube

    Thank you!
  7. K

    Blender

    I need opinions on blenders. I am getting a peg soon. I have a Breville Blender now and it works fine for smoothies. I need to purchase a second blender. Is Vitamix the best option? Breville has a version that has a high power 1800 watt motor where Vitamix has 1500 watts. Both in the 400.00...
  8. K

    Peg tube

    Lisa funny we just had this conversation! I am getting ready to go down that road. And just had a new pool installed. And I have taken a bath everyday for 30 years! My Dr said no.,I’m confused. Button? Peg? Mic key? What one is best?
  9. K

    B-12 (methylcobalamin) injection trial

    My Dr Prescribed it. It’s cost 100.00 a month I have it filled at a compounding pharmacy . It comes in pre filled syringe’s. It’s hard to say with anything we take if it’s helping. My Dr said B12 and AMX
  10. K

    B-12 (methylcobalamin) injection trial

    I have been on B-12 Methylcobalamin injections 50mg 2x weekly for 8 months
  11. K

    Leg cramps

    Thank you Lisa and Nikki!
  12. K

    Leg cramps

    I have Bulbar. Speech is gone . Tongue is making it challenging to eat. Other than that my limbs have been ok just weakness in one arm. The past 2 days I have been having bad leg cramping. What do you take for cramping? Is this normal? Dehydration?
  13. K

    Donations

    We would like to Donate to a Charitable research organization. What is the best organization ?
  14. K

    AMX35

    Well the applesauce did nothing . After a few days I got it down to Hershey’s dark chocolate pudding! 2 pills at a time.. 1 full glass of water for 2 pills is doable. Just wanted to make sure diary didn’t effect it. Thank you!
  15. K

    AMX35

    Why non dairy pudding?
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