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Thread: So we got great news...

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    Talking So we got great news...

    Not. Cancer.

    Praise God!

    ***BIG EXHALE***

    Dad's pulmonologist said at his appointment yesterday that he had never assumed a malignancy incorrectly until my Dad became his patient. He also said how happy he is to have been wrong! He made us a copy of the report of the CT that was done prior to my Dad's cancelled biopsy. It basically said the nodule had shrunk by half its original size and the "extreme disease" in Dad's left apical lung that was seen on his initial chest CT has improved indicating that it was an inflammatory process all along. His pulmonologist will be monitoring his lungs closely with follow-up CTs and, hopefully, the inflammation that is there will completely resolve.

    Of course, my family is relieved, but we are not resting on our laurels. My mission at present is getting Dad a better ENT. The one he has seen four times now is horrible, no other way to say it. He not once looked at my Dad's CT of his sinuses even though Dad took him a copy. He was dismissive when my Dad tried to talk to him about his chronic sinusitis due to WG. He also basically told Dad without doing an exam at his last appointment that since he has WG, Dad's rheumatologist should and would take care of everything.

    I called and left a voicemail with his rheumatologist's nurse today that we would like the doctor to recommend an ENT with whom she has a working relationship and who also has experience treating WG patients. Hopefully, she can direct us to a great one.

    So my Dad's only complaint right now is the continued upper respiratory symptoms, specifically sinusitis and nosebleeds that have been occurring every 1-2 days. He has only had one that was "red" and not "pink," but it makes him hesitant to blow his nose, which of course he feels the need to do often. He is also has a little anxiety about going anywhere and possibly having a nosebleed. Ugh, I really wish he didn't have to deal with this.

    Can anyone give us any tips for controlling his nosebleeds? He already does sinus rinses and nose spray.

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    Lindsey..so glad u got good news on your dad. Sorry I don't have any advive about the nosebleeds.Just wanted you to know I am happy for you and your family. Hopefully the nosebleeds will stop on there own also.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Happy to hear the good news. Keep working on getting a good ENT.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    I found the steroid nasal sprays like fluticasone propionate helped heal my nasal areas and reduce bleeding. I use it PRN whenever I get blood in my nasal rinses and it seems to help me. Also increasing the number of nasal rinses with extra strong solution of soda and salt is recommended by my ENT as he said one cannot over do the rinses. I also usually use double or triple strength rinses compared to what comes using just one of the commercial packets in the rinse bottle. I mix my own salt and soda mixture for the rinses which makes it much cheaper to do.

    Adding Alkalol to the rinses might help things feel better but don't know if helps heal the nasal passages. I think the NeilMed NasoGel is best way to keep nasal passages moist between the salt and soda rinses as keeping the passages moist helps with healing and reduces nose bleeds. Getting the passages healed up is a challenge but the best and maybe only way to reduce nosebleeds.

    Another thing may to get a good ENT to check for sinus infections which can make things worse and also creates other problems.
    Last edited by drz; 03-14-2014 at 10:56 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    I found the steroid nasal sprays like fluticasone propionate helped heal the nasal areas and reduce bleeding. I use it PRN whenever I get blood in my nasal rinses and it seems to help me. Also increasing the number of nasal rinses with extra strong solution of soda and salt is recommended by my ENT as he said one cannot over do the rinses. I usually use double or triple strength rinses compared to what comes using just one of the commercial packets in the rinse bottle.
    I'll work on getting him some Flonase, thanks. Is it safe to put 2-3 packets in the bottle he uses to rinse?

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    Quote Originally Posted by LindseyRN View Post
    I'll work on getting him some Flonase, thanks. Is it safe to put 2-3 packets in the bottle he uses to rinse?
    Yes, or buy the extra strength rinse packets but making your own is real easy and cheaper and just as effective. Get salt without iodine like sea salt or canning salt and mix it three to one with regular baking soda and store in glass jar.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    Yes, or buy the extra strength rinse packets but making your own is real easy and cheaper and just as effective. Get salt without iodine like sea salt or canning salt and mix it three to one with regular baking soda and store in glass jar.
    Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?

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    Be careful the Flonase. It can have a rebound effect and make symptoms worse. Try just using in for a few days first.
    Phil Berggren, dx 2003

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    Quote Originally Posted by LindseyRN View Post
    Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?
    Take a small spoon and and open one packet and put on it to see what two or three times that amount looks like. I use as much as I generally can get on the back of a handle of a cheap plastic spoon i got from McDonalds as this makes it easy to put salt-soda mixture into the squeeze bottle with spilling any of it. There are little grooves on back of the handle to hold the salt-soda mixture while I slide it into the bottle and then add the warm water and shake it up to mix it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by LindseyRN View Post
    Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?
    The formula from my ENT is 1 teaspoon pickling salt and 1/2 teaspoon baking soda per 1 liter of water. I mix mine in one of the large pampered chef pitchers with the mixing plunger built in. I've been running 3 liters 2 times a day for the past year now to keep my sinuses open. I use those seemingly useless little Rubbermaid containers you get in the multi packs to pre-measure out the amount of baking soda and salt for the amount of water container used. This may sound like a lot of rinsing, and it is, but the results paid off!

    If he feels like he has to blow his nose, have him rinse out the crud instead. Moisture is what he needs in there to keep the bleeding down and the crusts from building up too heavy. My sinuses used to look "like a child's skinned knee after he fell off his bike", but with extreme persistence, my sinuses have started to recover and show some signs of normalcy in the linings, albeit 6 months later. Mine were so bad I was on three different narcotic pain relievers for the associated migraine headaches from the destroyed sinus linings.

    It takes a fight to get sinuses back under control. Part of the fight is finding a good ENT that will do an endoscopic cleaning periodically to dislodge the hard to remove crusting. Since my flare up in September/October, I've been to the ENT's office every 2-3 weeks for this type of procedure. I will say that I have a tremendously good insurance policy, and have never had to fight for these cleanings, nor pay out of my pocket for them. So for me, the periodic cleanings have truly been a Godsend!!

    Tell dad he just has to be more stubborn than this stupid disease, and he can certainly get ahead of it! I'm proof of that!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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