lisa g

lisa g

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  • K
    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 soon as I started the feed coughing and choking. I stopped .Did you have any issues when you started?

    Kelly
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    K
    kellysal
    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
    K
    kellysal
    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?
    lisa g
    lisa g
    Wow, sounds like yours is alot more complicated than mine. I didn't have any stitches. I had mine placed by a gastroenterologist and he placed it by an endoscopy. Mine has 2 ports one for nutrition and one for medication. I'm going to ask moderators to give you my email so I can talk this site tells me I'm limited to number of words. Email me when you get it.
    lisa g
    Other
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    lisa g
    lisa g
    Hello,
    I'm sorry you had a bad experience at UA Miami. I was there in July and had an in-person appointment with Dr Benatar. He spent 2 hours with me doing a thorough examination and then sat down with me to hear my concerns and offer some advice. Due to covid the multidisciplinary clinic was not doing in house visits so they scheduled me for a telehealth. Who were you seen by?


    Lisa
    K
    kellysal
    I saw Dr. Verma. He spent about 30 mins examining me then talked for about 10 mins and said see in three months for an EMG. I asked him if I should be doing anything said No. The office called today to set it up and they don't have anything till March for EMG and nothing for Telehealth till December . Wondered if you had been to any others here in FL . Thank you for the reply!
    lisa g
    lisa g
    I was at Cleveland Clinic in Weston but unfortunately they don't have a ALS Clinic.
    That's strange UA called me today for an in person multidisciplinary visit for 11/6. I had to decline since I'm out of state until mid December. Try calling back and speak to Roberto Fernandez to reschedule since they're doing in person visits again.
    blitzc
    Hi Lisa,
    As I recall you are here from Florida staying in Canton for a time. I currently live in Minerva which is just 35 minutes southeast of Canton. I would love to meet you before you head back to Florida. I am in Canton every Wednesday for PT at Mercy hospital. Let me know if you would like to meet up sometime.
    Cathy
    lisa g
    lisa g
    That would be nice. What time would be good for you? We could meet in the cafeteria at Mercy for a cup of coffee if that would work for you . If not this Wednesday we could do it next week . We plan on heading back to Florida around the 20th . I have an appointment on the 27th for a second opinion at Cleveland Clinic in Florida .
    blitzc
    blitzc
    I think meeting at Mercy this week would be great! Let me check with my friend who drives me to appointments. Here is my personal email: [email protected]
    blitzc
    blitzc
    Wednesday, June 5th about 3:30 ia good. :)
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