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Thread: Celebrate how far we have come!

  1. #111
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    Default Re: Celebrate how far we have come!

    Geez drz, reading your experience makes me realise that I got off pretty easy with my life-threatening autoimmune disorder (I refuse to name it because itís a mean little shit which doesnít deserve the honour of a name) Mine was diagnosed fairly early in because in Australia we have an excellent government run medical system, and access to really great specialists. We got it before major kidney and respiratory involvement As of today Iím on 5mg Panafcort, 2000mg mycophenolate, and am working and living pretty normally as long as I donít forget PPE and disinfectant. It sounds like you were strapped to a tank and driven into Germany, and Iím glad youíre getting on top of it, it gives everyone hope.
    I learned something a long time ago. Sometimes you get thrown into a situation which seems insurmountable. You can either cry and scream at the universe, or figure out the problem in front of you. Then you solve the next problem. If you solve enough problems, you get to go home.

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  3. #112
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    Default Re: Celebrate how far we have come!

    Happy thanksgiving! I hope each and everyone of you are staying healthy and happy!
    Natty


    Sent from my iPhone using Tapatalk

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  5. #113
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    Default Re: Celebrate how far we have come!

    It was 11 years ago that I was beginning my recovery from my intubation at the ICU unit at the University of Minnesota. The pandemic hit our area early in the spring of last year and I was advised to hunker down because of my extreme vulnerability and high risk of dying from Covid-19.

    It has been a tough year for those of us confined to any locked down living facility like our Sheridan House. After the residents and staff were all vaccinated there was some small reopening recently and resumption of limited activities. Unfortunately I also happen to have a serious flare in my Wegener's granulomatosis that began about a month ago. It had been smoldering for several months and it seems likely that the second vaccination for Covid 19 was the straw that broke the camels back.

    I am back on 60 mg of prednisone meds which is wrecking havoc with my blood glucose levels and I am scheduled to have rituximab infusion at the local cancer center in two days. This drug has found to be effective in wiping out the immune system and thus stopping the destructive action of the autoimmune system that will kill me if left uncontrolled. I haven't been this sick in the last 11 years and was generally considered in an adequate drug induced remission with the oral meds I took to suppress my immune system.

    It is quite a challenge trying to control my blood glucose levels with my OmniPod system. Fortunately I had added a do-it-yourself looping system to my iPhone which will provide some automatic adjustments to my insulin levels based upon the readings from my Dexcom continuous glucose monitoring system. Normally a pod has 200 units and is expected to last about three days. Because of my high insulin resistance my normal time to change the pods was about 36 hours. Now because of my increased insulin needs it is about half that time.

    The other thing it's very different for me is experiencing the high dosage of prednisone meds which really messes with my concentration and my emotions. It creates a hypomanic state so I have to be careful not to try over do things when I'm experiencing "delusions of adequacy". I might feel like I could run a marathon but actually have trouble walking a flight of stairs. The prednisone has helped reduce the symptoms of the flare so the severe nose bleeds, muscle aches, and sleeping umpteen hours a day has improved.

    After the rituximab treatment I will have to be very careful to be extremely quarantined to avoid any infection since I will have no resistance to getting infected and very likely could have trouble even recognizing if I developed a serious infection since my body won't be able to respond to it. At least that way the last year of self quarantine to try avoid the Covid 19 virus will be a very beneficial experience since I have all that experience at self quarantine.

    We've had some nice spring days and I've even seen some baby geese at the lake in the park next block over. I hope that in a few days I might feel strong enough to resume frequent walks to the park to enjoy the scenery. It also has a rookery of egrets which are beautiful white birds that were almost hunted to extinction in the late 1800s. Many people come from miles around to photograph them.

    I hope any readers are doing okay and have come through the pandemic so they can resume some more joyful experiences. Condolences to anyone who experienced a serious loss during this very difficult time for all of us.

    I still think it is time to celebrate for those of us that have survive the pandemic so far and are still around to cope with the stress of dealing with our GPA and any other related health issues. Many of our former users are unable to do so so let us carry on as best we can.
    Last edited by drz; 05-03-2021 at 11:19 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #114
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    Default Re: Celebrate how far we have come!

    So sorry to hear you're so sick!
    Fortunately I'm only on a very low dose of prednisone at the moment, but I really struggle with higher doses. When your emotions get the better of you, remind yourself that it's due to the Pred and it's not your true self.
    I hope you're managing to get some fresh air and going for short strolls. Just don't push yourself and keep safe during this period of high immunosuppression.

    Although the Covid deaths per million is one of the highest in the world in UK, I have been fortunate not to have lost any close friends or family.
    I have had both doses of Pfizer vaccine, but do not feel safe as I did not create any immunity when I had my pneumonia vaccine.

    Feel free to message me directly if you're stuck indoors quarantined and are getting bored, or stressed with prednisone.
    Diagnosed April 1995

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  8. #115
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    Default Re: Celebrate how far we have come!

    Hi drz, many greetings from the Netherlands!
    I hope you'll soon gain strength again.
    A walk in the park to see egrets sounds nice.
    Living with WG/GPA since june 2010...

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  10. #116
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    Default Re: Celebrate how far we have come!

    Sending love and hugs your way drz, from Oz

    I hope the RTX gets you back to feeling a little more normal, in the next few weeks.

    Be kind to yourself, and remember that you have done it before, and you will kick it again.
    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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  12. #117
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    Default Re: Celebrate how far we have come!

    Rituximab treatment was a long and exhausting day. It took over eight hours since it had been 11 years since I had it before and concerned about my numerous allergies cause them to go very slowly. The Pred meds had pretty much reduced or eliminated most of my flair symptoms but as prednisone users know it can create other side effects.

    The most difficult and challenging for me was managing the high blood sugars given my type one diabetes for several decades. I use the do-it-yourself looping program on my iPhone but it was working so hard pumping out 20 units of insulin every hour and changing every five minutes that my iPhone discharged after a few hours even though it was fully charged at the beginning. Luckily they had charges available and I didn't run out of insulin because I had just put a brand-new pod on which held 200 units.

    I get the next treatment in two weeks and they said it should only take half as long as the eight hours it took today. I got the treatment at our local cancer center and could not believe how crowded the facility was as there were at least two dozen people that went through the room while I was there. It held about eight at a time.

    I'm not sure what my ongoing treatment regime will be after I finished the second treatment but they are having me stay on the AZATHIOPRINE but should start tapering the Pred down from 60 in a couple of weeks. That will be a welcome relief given the negative impact it has on my cognitive skills, concentration, and the extreme mood fluctuations. As has been stated here many times Pred is the drug we love to hate because it does so much for us but the cost is significant.
    Knowledge is power! Wisdom is using it to make good decisions!

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  14. #118
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    Default Re: Celebrate how far we have come!

    Good to know you didn't run out of insulin, and also that you were able to recharge your iPhone during treatment.
    Also it seems encouraging to me, that your next treatment will only last for four hours, instead of eight.
    Living with WG/GPA since june 2010...

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  16. #119
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    Default Re: Celebrate how far we have come!

    Dear drz,

    Thank God the rtx treaemt went well and that you can control your diabetes even if it is complicated.

    My first rtx IV also lasted about 8-9 hours and this is how it should be according to the protocol. So I am glad you are in good hands. My second rtx lasted around 5-6 hours. Never 4. Just make sure they follow the protocol. Slower is safer.

    Sending you prayers for an easy and full recovery, all the way from Israel 🇮🇱
    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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