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Gent perfusion

Discussion in 'Your Living Room' started by Saera, Jul 11, 2019.

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  1. Jul 19, 2019 #41
    Saera

    Saera Active Member

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    Supposed to say “I totally know it’s the gentamicin “ ☝️
     
  2. Jul 20, 2019 #42
    AnneT

    AnneT Well-Known Member

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    Autocorrect while being wobbly! I figured you meant something like that. :) Yay that the gentamicin is doing something. Hang in there.
     
  3. Jul 20, 2019 #43
    Saera

    Saera Active Member

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    I can literally hardly walk. Showering takes everything I have. Double vision when I wake up. I still have these drops to do until Thursday. I know she says they are low dose so that’s why we are maintaining a constant level to do the ablation but I’m beginning to fear I won’t recover. I’m going to go read your thread again and see if we are similar. Looking for hope.
     
  4. Jul 20, 2019 #44
    redwing1951

    redwing1951 Well-Known Member

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    You will recover!! The gent has kicked in and will kick your ass for a few days and then things will start calming down. It's like climbing a mountain you have reached the top and you will start the descent soon. Just try to stay calm and get plenty of rest. I know you don't want to hear this again but start walking as soon as you are able to. Sending you good strong vibes. Hang on!!
     
  5. Jul 20, 2019 #45
    Saera

    Saera Active Member

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    Thank you. I did take Valium today and zofran as it was pretty gross. But now I’m forcing myself to walk around a bit and not hold onto walls and to allow myself to turn my head. Even if very slowly. My neck and shoulder muscles are so tight from being so stiff.

    I want the barrage of gentamicin to stop so I can work on recovery but alas, 6 more days of this. Then I can hopefully stop and get onto the getting better.

    Tomorrow I may go to baseball but it’s all day long and I’m not sure how well I’ll do. Guess I could always sleep in car if needed. ‍♀️
     
  6. Jul 20, 2019 #46
    redwing1951

    redwing1951 Well-Known Member

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    I think you are doing great. Keep trying to live a normal life and when you need a break take it. You have the right attitude and you will get through this!!
     
  7. Jul 20, 2019 #47
    Saera

    Saera Active Member

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    Thank you!!! Sure hope Anne is out there living life and feeling less affected this go round than last!!
     
  8. Jul 21, 2019 #48
    AnneT

    AnneT Well-Known Member

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    Hi saera
    Yes showers were challenging- I think I had 2-3 days when I just didn’t bother! And the stiff neck for sure. My worst days were around days 15 and 16. That’s when the physio told me over the phone to decrease my activity even more, and take more drugs for a few days.

    My double vision etc was also worse upon waking.

    Just when I thought “I don’t know how much more of this I can take”, Day 17 saw tiny improvements. The world would be still if I did a sitting meditation. Turning my head slowly left and right wasn’t so nauseating.

    And yes, I was out driving yesterday and today! A long walk by the river... left me exhausted but happy.

    I would suggest skipping outings, baseball etc for a few days. Consider yourself concussed - your brain needs rest right now to cope with the loss of a balance centre. You don’t sound like the kind of person who is at risk of turning into a vestibular couch potato! Keep yourself comfortable for now.

    (Not yet, but once you turn the corner... and you will... here’s one more tidbit...) By 3 weeks after the injection, once I’d had a week of improvements, I was ready to take Clare’s advice: Don’t avoid any position or movement now. If it’s uncomfortable, don’t do it longer than 10 seconds. Then just get back to a comfortable spot and let the sensation recover.
     
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  9. Jul 21, 2019 #49
    Saera

    Saera Active Member

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    Yay for being out driving and such!!! I can’t wait to feel normal again.

    Drops end on Thursday and then I’m hoping to see the doctor to get a head thrust test to make sure it worked and then get on with life.
     
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  10. Jul 21, 2019 #50
    Saera

    Saera Active Member

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    Went to baseball. Barely survived the walk from the car to the ball field. Had to explain my condition more than I wanted to. But saw my step son pitch an 8 inning no hitter. I ugly cried and was so glad I went.

    Came home and sat with the fiancé on the deck in the sun and talked about whatever came to mind. (I shouldn’t be in the sun as I had melanoma last year and am under close watch but I can only deal with one “M” asshole disease at a time.


    Now inside on the bed doing a cross stitch and ready for bed. Feeling like I’m going to sleep well tonight!

    Just want to add that I’m grateful to be starting a blog but this group. Specifically redwing, Anne and Clare. You have helped me so much. To conquer so much fear. Thank you. I can’t repay you for the hand holding and pep talks. But am damn glad I came here before making my choice to take the next step in fighting the beast.

    Much love.
     
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  11. Jul 21, 2019 #51
    Onedayatatime

    Onedayatatime Active Member

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    Saera,
    "I can only deal with one “M” asshole disease at a time."
    I heartily agree. :):):):):):):) LMAO.
     
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  12. Jul 22, 2019 #52
    redwing1951

    redwing1951 Well-Known Member

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    Saera believe it or not....I have had 5 "M" removed!! So I know what you mean. I am a "frequent flyer" at the dermatologist office :)
     
  13. Jul 22, 2019 #53
    AnneT

    AnneT Well-Known Member

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    I’m glad you made it! I was just scared for you. I had one day where it made me nauseated just to sit on my back porch because the gentle breeze was making the leaves move! What a great game for you to attend.

    Using a cane helped me (besides helping the balance of course) socially. I felt less embarrassed that neighbors etc might just think I’m day drunk.

    And I’m glad to pay forward the immeasurable help I received here. That may be one of the few good things that comes from suffering - the ability to help others in the same boat.
     
  14. Jul 22, 2019 #54
    Saera

    Saera Active Member

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    I don’t want to like this post because M sucks. But I get it!! Isn’t it crazy? They have come out with a study saying that dyazide is linked to melanoma. Hmmmm
     
  15. Jul 22, 2019 #55
    Saera

    Saera Active Member

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    I survived. But barely. Bouncy vision. Unlevel ground. Dizzy 24/7 with any head movement. But I will beat this!!
     
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  16. Jul 22, 2019 #56
    Saera

    Saera Active Member

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    Just spoke with doc. They are adding another 7 days of drops onto my plan. So that’s one 40 mg injection and three weeks of daily drops of gentamicin. She will have me schedule surgery in case this fails but I’ll see her 8/7 to make the decision. Guess she wants to slay the best huh? Damn.
     
    • Optimistic Optimistic x 1
  17. Jul 22, 2019 #57
    RedBird11

    RedBird11 Member

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    Congrats to your step son! That is an amazing accomplishment! I am so glad that you were able to go see it. :)
     
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  18. Jul 22, 2019 #58
    AnneT

    AnneT Well-Known Member

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    Weird about dyazide and melanoma.

    Great to have a doctor as determined as you to slay the beast!
     
  19. Jul 22, 2019 #59
    Saera

    Saera Active Member

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    It’s great but feels a tad overwhelming. She says you can “overdo” gentamicin when basically aiming for a Chemical Labyrinthectomy so I’m going to trust that and do as she wants.

    Cross stitch keeping me busy and trash TV. Housewives galore!
     
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  20. Jul 24, 2019 #60
    Saera

    Saera Active Member

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    Day 13.

    Still doing drops. Managed Target and the car ride. Some moments I feel like it’s waning and then later that same day I feel like ass all over again. I’m guessing this stage is probably normal.

    Fun fact for the day...

    I’m mowing the grass. I figure it’s a self propelled push mower so all I have to do is follow the lines and hold on. Hahahaha! It’s like trying to read while on a trampoline. BUT the fiancé will be so happy it’s done and I think it’s probably some good exercise for rehab. It’s like walking plus a bunch more. ‍♀️
     
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