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Thread: Positive nasal biopsy

  1. #11
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    Quote Originally Posted by mishb View Post
    Aww Gilders, I'm sorry WG may have taken hold again

    I'm struggling though, to understand why you wouldn't want to start on some treatment straight away, if, everytime you relapse, your kidneys get worse.
    Wouldn't it be better to start the meds so that your kidneys have, at least, a fighting chance ??
    Hi Michelle, let me explain why I was putting off treatment.
    Firstly if there is definitive proof that I was having a flare/relapse then I would not hesitate in receiving treatment.
    The reason I wanted to hold off treatment was when I wasn't 100% certain that I was having a relapse. The reason being that if the meds can damage my kidneys, I'd hate to think that I've killed off my kidneys with medication that might not have been needed.

    With my symptoms and positive ANCA results, it was always likely that I was at the start of a flare. I truly believed that the only chance my kidneys had was if I kept off meds and weren't having a relapse, however unlikely it was.

    I never refused treatment, but I did let my specialist know that I wanted to re-start treatment when there was proof of a relapse, not just signs and indications.
    Diagnosed April 1995

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    I thought you said that any relapse hit your kidneys worse - I didn't realise that the meds were also making them worse.

    .........so you are in a no win situation, either way - now that just sucks.

    I'm sorry. I hope you get a definative answer when you see your specialist
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Just 2 more days until my appointment to discuss positive nasal biopsy and I wish it would come sooner. My mind set has changed from hoping I wasn't having a relapse, to realising the truth and wanting to get this flare beaten down before it causes too much damage. It's been a slowly building relapse which is so unusual for me and I think that's partly the reason why I wasn't 100% sure I was having a relapse. But the last few weeks and especially the last few days, it is becoming much more aggressive.

    I now have another issue. I believe I will be back on treatment in the next few days, but I've picked up another virus. I'm not sure how they are going to treat me considering treatment is to immuno-suppress me which will let this new virus run riot. I guess my Dr may have to postpone treatment until I've fought off this virus. The problem is when I get a virus it usually takes a month to get rid of. I can't wait another month now that the WG are getting so much more severe at a rapid rate now.
    Diagnosed April 1995

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    I'm very sorry to hear all this, gilders. If this is a relapse, they need to knock this out. I wonder if the virus would make much difference, since you have it anyway. I wish there were more obvious answers on how to proceed without making something else worse. I also wonder if you could get RTX via the link Alysia shared above. I'm afraid it would take awhile for it to make you feel better. I am so sorry about the precarious state of your kidneys and wish this disease would not be so unfair to some people while letting others off relatively easy. My thoughts and prayers are with you. I hope to hear some more positive news soon.
    Anne, dx'ed April 2011

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    Hi Gliders, I am sending good vibes to you,and keeping you in my thoughts. You are a Gladiator.
    "You can tame anything,except the human tongue"

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    Quote Originally Posted by annekat View Post
    I'm very sorry to hear all this, gilders. If this is a relapse, they need to knock this out. I wonder if the virus would make much difference, since you have it anyway. I wish there were more obvious answers on how to proceed without making something else worse. I also wonder if you could get RTX via the link Alysia shared above. I'm afraid it would take awhile for it to make you feel better. I am so sorry about the precarious state of your kidneys and wish this disease would not be so unfair to some people while letting others off relatively easy. My thoughts and prayers are with you. I hope to hear some more positive news soon.
    Thanks Anne. It was very kind of Alysia to go to the effort of posting the link for RTX insurance co-payment. I can't see how that can work in my case though. The only "insurance" I have regarding health and medical is National Insurance which pays for the National Health Service. It is possible to get health insurance in the UK which pays for private health care, but the problem is that no policies cover pre-existing conditions. I started work at 16 and wanted to join the health insurance scheme that was offered through work, but there was a minimum age limit of 18. Unfortunately WG started when I was 17 and as almost every organ was involved there hasn't been an insurance policy worth investing in.
    I really wish I had enough money to pay for health insurance policies for my children. They would think what a boring gift and prefer I'd spend it on anything made by Apple, but the way the NHS is stretched to breaking point, I'd get it for them. We've just helped our 21 year old through 3 years at Uni as best we could and it won't be too long before out 16 year old will be going.

    As for the unfairness of this disease, I know it's hit me hard, but it could always be worse!
    Diagnosed April 1995

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    Quote Originally Posted by Titus3:2 View Post
    Hi Gliders, I am sending good vibes to you,and keeping you in my thoughts. You are a Gladiator.
    Thanks Titus3:2.
    Where about in Florida do you live? I got married on Clearwater Beach a few years ago.
    Diagnosed April 1995

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    Quote Originally Posted by gilders View Post
    I really wish I had enough money to pay for health insurance policies for my children. They would think what a boring gift and prefer I'd spend it on anything made by Apple, but the way the NHS is stretched to breaking point, I'd get it for them.
    I was going to cancel our childrens insurance policies this spring but then decided to wait a while yet, I got them before they were born and the first years were a bit expensive (like 500 euros / year). Now when my son is 8 years I think the insurance is only about 200 euros so its not too bad. The problem is that my spouse has been handling the bills and she never remembers to send them to the insurance company so I end up paying for the doctors and meds in addition to the insurance...

    But I am starting to agree that its a good thing to keep the insurances, I keep hearing how they are cutting the public health care so dunno how much care they would get from there. Not sure if I'd use the public health care system anyway for the children, since waiting for 5 hours could be a bit tough for them. Its just that if a doctors appointment costs about 70 euros and the medicine maybe 15 euros on average then we could see a doc 3-4 times a year for the price we pay now and we very rarely need to go that often.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Gilders, it was convoluted, but on the Gentech website I found this page talking about a way for people to get their RTX for free if they can't get it any other way.

    Genentech® Access to Care Foundation

    I know it sounds too good to be true and would be a lot of hassle to apply, etc. I think it said there was an income limit of $100,000 a year unless that was for a different program. You might just check it out.

    I think it is rotten that people can't get insurance because of pre-existing conditions, and I'm dismayed to hear that the national heath coverage in England is not working for you. This has of course been a problem in the US, too, for people with serious diseases. I don't have a lot to say about the new health care law that is having so much trouble getting acceptance here, except that I think it is good that it mandates coverage for people with pre-existing conditions. I don't know what the repercussions of that will be, though, in terms of higher rates, etc. I just think we as human beings should be able to take care of each other better than we have been and people with serious and life threatening illnesses should be taken care of properly no matter what. That is just my sentimental and uneducated opinion, and should not be a catalyst for any sort of political discussion on here. Just sayin'.......
    Anne, dx'ed April 2011

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    Hi Gilders,
    I am sorry you got that virus too....what kind of virus is it?
    I hope your doc will have good answers for you and good treatment. you deserve to have some peace.
    Insist with your doc on checking about research treatment and the like, that give treatment without payment. there might be some.
    I am sending you my praying
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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