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    • #31347
      Wendy Dirks
      Participant

      Greetings from the Royal Victoria Infirmary Respiratory Ward, where I am hospitalised with an AE and pneumonia. Apparently it is a type of pneumonia that goes along with an AE in ILDs.

      Last week at home, I felt so awful that I thought it had to be the beginning of the end and if being alive meant feeling so awful, why prolong it. I went to hospital in an ambulance at 3:00 in the morning and was miserable for two days and then woke up feeling full of life and ready for anything. Last night I actually thought to myself what a pleasant day it had been. A shower given by two wonderful nurses, a visit from my husband, blue skies out the window.

      I’m being treated with antibiotics and steroids. I hope to start on Ofev soon, when I have completely recovered. I go for a walk with the physios every day, a little further on a little less oxygen. When I can get down to my baseline of 5 litres, I can go home. I feel optimistic and alive.

      Then, because I am one of those people who wants to know everything, I started reading up on AEs and it was all doom and gloom about the prognosis and mortality rates. So my question is, have you had an AE? What was your recovery like? I believe Charlene has gone through them.

      I know my disease is quite advanced but I can’t believe I’ll be dead in six weeks!!!

    • #31374
      Christie Patient
      Moderator

      Hi @wendy-dirks, so sorry to hear you’re having an AE, but I am glad that you are in the hospital where you are getting the best care and FEELING BETTER!! That is a huge thing and a very good sign. AEs can go all kinds of ways, but it sounds like the treatments are working and you are on the mend. I hope you’ll go home soon and have many more than six weeks to look forward to. You’re such a bright light in our forum community, I always look forward to hearing from you. I wish I had more to contribute to the AE discussion, but my mom’s AE landed her in the ICU indefinitely, and I know that isn’t the kind of story you need to hear right now. There are lots of people in the forums who have had them and returned to a stable level for a long time who could provide more insight.
      Hugs and healing thoughts to you,
      Christie

      • #31380
        Wendy Dirks
        Participant

        Thank you so much for the kind words and encouragement, Christie. I feel better and can do more every day. It’s good to know AE outcomes are more variable than the gloomy literature I’ve read, but I am sorry to hear about your mother.

        • #31381
          Christie Patient
          Moderator

          Of course, I am so glad to hear you’re improving. 🙂

          And thank you, it all worked out for the best, as she was under the best care and supervision while she recovered, and did get much better. She stayed there until she was matched with a lung donor. I know that’s not the path for everyone, and I’m eager to read replies from those who have recovered well from their AEs without such drastic measures.

    • #31416

      Hi @wendy-dirks

      Oh, I’ve been thinking of you since I read your post — hopefully you’re a bit more on the mend now than you were? I agree with Christie, and am glad you’re in the hospital where you can be monitored and receive care for your AE and pneumonia.

      AEs can be so scary and I’m glad you got to the hospital and sounds like you’re improving each day, good for you! I have had them, one that landed me in the ICU for a few weeks in spring 2017 and then another triggered by a virus. Each time the recovery took a lot out of me and unfortunately, I lost permanent lung function.

      Keep up that optimistic spirit and know your forums community is thinking of you!
      Char.

      • #31422
        Wendy Dirks
        Participant

        Thank you, Char! I feel better every day and am able to get around more as well on less oxygen so I’m feeling very optimistic. A week ago I could barely move at all and today I achieved my mini goal of walking myself unaided to the bathroom dragging a big oxygen tank on 12 lpm. The simple joy of being able to wash my hands in soap and water instead of hand gel! I stood up and opened the window on 5 lpm! Woohoo! Seriously, every step makes me so happy.

        • #31424

          So wonderful to hear, Wendy! Keep up the great work…. never easy but worth it when you’re feeling optimistic. Take good care and keep in touch!
          Char.

    • #31485
      Wendy Dirks
      Participant

      Hello, everyone!

      I just want to let you know that I am home, feeling better than I have in months, and my biggest challenge at the moment is not to overdo it, at which I am dismally failing. I’m exhausted today after tidying up my bedroom yesterday, which had a collection of clutter driving me crazy when I was relying completely on others to help me. Today I got some help tackling the front room.

      I have set myself mini-goals, and today I met number two by showering on my own. I am even wearing clothes instead of pyjamas! Now I might go put on some earrings to celebrate. So grateful to be alive. I think when I arrived in hospital, the first doctors to see me weren’t sure how this was going to go as there were a couple of end of life conversations about Do Not Resuscitate and whether or not I wanted to be ventilated if necessary. But here I am!

      I’ve finished my antibiotics and am now on a high dose of steroids, started last week in hospital, that is being cut back 5mg at a time for the next five weeks and then I am due to start on Ofev. Fingers crossed I won’t have horrendous side effects. I’m glad to be cutting back on the steroids as one of the side effects for me was losing words. I would be talking away about something and a word would simply not be there. Very disconcerting.

      Happy spring, everyone!

       

      • #31537
        Christie Patient
        Moderator

        I’m so happy to hear that you are home and feeling energetic! If you’re well enough to care about cleaning up clutter, I have no doubts that you will continue on the upswing and maintain health for a lot longer than 6 weeks, as you mentioned earlier. A little better each day is worth being grateful for!

        Those conversations in the hospital can be very traumatic, and I hope you have support as you process that. You can always reach out if talking about it would be helpful. My mom still struggles when she recalls the “end of life” conversations she had with doctors. In spite of her overall recovery, those were dark days that still haunt her.

        Keep us posted with your healing and keep celebrating the little victories!

      • #31542

        So wonderful to hear from you @wendy-dirks! This post brightened my day 🙂
        It is very hard not to over-do it when we suddenly feel better than we have in a long time, isn’t it? Setting mini goals is a great idea to balance feeling productive with also finding time to rest/recover. I hope the steroid wean went okay and that the OFEV initiation goes well. Please keep us posted on how you’re doing – we love hearing from you, especially news like this where you’re on the mend.
        Sending love,
        Char.

    • #31488
      Zach Adman
      Participant

      I had an AE last November. I did not feel terrible before, but my wife noticed a big change in me and called my doctor. She ordered a CT scan and I was immediately admitted to the hospital. I was on a high dose of steroids and felt fine in the hospital but at the same time was being tested to get on the transplant list. When they released me from the hospital about a week later, I felt pretty well, given my IPF. I completed the tests I needed to get listed by mid January and then miraculously a day after being accepted for a transplant was called that they had lungs for me.  I’m now just short of three months, post-op and doing fairly well.  I have no idea if I’d still be around if I didn’t get the transplant, but glad I did not have to find out

       

      • #31504
        Wendy Dirks
        Participant

        How wonderful that you got your transplant so quickly! I’m not a candidate for one but it’s wonderful to hear others are benefiting. I hope you continue to improve and do well.

    • #31491
      Linda Skorick
      Participant

      My husband had AE last summer while recovering from open heart surgery. He is doing well! Not off oxygen yet but just did a 4 and half minute talk without it. We are praying for healing and believe he gets a little better every day. God bless! Attitude is everything! Linda

      • #31505
        Wendy Dirks
        Participant

        That’s wonderful to hear! I hope he continues to improve.

    • #31493
      Jerry Genesio
      Participant

      Dear Wendy, I have just returned from the X-ray department of our local military veterans’ medical clinic. This X-ray is to determine if the antibiotics I was given last week for pneumonia in my left lung have cleared the infection. I also have Familial Pulmonary Fibrosis diagnosed 2 years ago.

      As fate would have it, an X-ray I had 2 weeks ago for my first visit with a veterans’ clinic pulmonologist to determine the FPF progression revealed pneumonia, so that was just luck. I’m not on oxygen yet but when that becomes necessary I expect to get it through the veterans’ clinic so it will be free. For that, I must be seen by a veterans’ clinic pulmonologist in advance.

      I’m not on Esbriet or Ofev, nor have I had an AE thus far, to the best of my knowledge. I expect to know tomorrow if the pneumonia in my left lung has cleared up.

      Hang in there. Life is worth living! You will have much longer than six weeks to go if you believe and insist on it.

      Stay Safe!
      Jerry Genesio
      Scarborough, Maine, USA

      • #31506
        Wendy Dirks
        Participant

        Thank you, Jerry! I’ve been on oxygen support of some sort for two years now and because I live in England, all my health care is “free.” I need oxygen 24/7 now and have a concentrator at home with tubing that reaches all over the house, even upstairs. I hope your pneumonia has cleared up and you continue to enjoy life!

    • #31502
      Thomas Johnson
      Participant

      Hi Wendy,

      So happy that you’re recovering so fast. I was on the downhill until about 6-8 weeks ago when my switch from OFEV to Esbriet took effect. No more nasty side effects and feeling much more like myself.

      I hope you continue improving!

      Tom

      • #31507
        Wendy Dirks
        Participant

        I’m so glad Esbriet is working for you. I have CHP (chronic hypersensitivity pneumonitis) rather than IPF and Ofev has only recently been approved for use for CHP here in the UK. I hope I’m able to manage it. Fingers crossed!

    • #31514
      Karen Soffe
      Participant

      Hello Wendy

      Good to see you are feeling better

      Please could I ask what antibiotics you were given to clear the infection .

      • #31518
        Wendy Dirks
        Participant

        Hi, Karen – It was levofloxacin, first via drip, then orally.

    • #31889
      Wendy Dirks
      Participant

      Hello, Friends –

      Once again I am in one of the respiratory wards at the RVI and am being treated with antibiotics and steroids. Unfortunately, my oxygen saturation began to plummet again and my fatigue came back as my steroids tapered off. I don’t know whether to call this my second AE in 2 months or consider it the same event popping up like a whack-a-mole game. I’m very discouraged. I still haven’t started Ofev and I just don’t know what is next for me. It’s a bank holiday (3 day) weekend here and although I’ve been seen by consultants, none of them are the experts from the ILD clinic who won’t be in until Tuesday. I hope you are all doing better than I am right now. Best wishes, Wendy

      • #31921
        Christie Patient
        Moderator

        Oh Wendy I’m so sorry. That’s so discouraging. Is there a chance you can restart and remain on the steroids for a while as your respiratory system rests and recovers from the initial event? I hope you were able to talk to a consultant today and get some answers. Sending hugs your way. Please keep us posted.

      • #32061

        So sorry to hear this @wendy-dirks! I hope you’re doing a bit better since you wrote this? Thinking of you!
        Char.

    • #32066
      Wendy Dirks
      Participant

      Dear All –

      Thank you for your concern and kindness. I really appreciate it. I was in hospital for two weeks this time and once again feel very grateful to have been there. I didn’t wait as long this time as I did in March to realise I needed help. I learned some interesting things about my illness and my oxygen needs are finally being addressed properly. Some of this may be useful to others in the forum and some may be only relevant for people with CHP (chronic hypersensitivity pneumonitis).

      I was concerned that I had the same infection (pneumonia) treated in March in hospital. In fact, it was a completely new infection. The consultant explained that my illness had progressed to a point at which I was highly susceptible to “self infection” as my lungs were so filled with inflammation and my immune system suppressed. Anything I happened to breathe in could land me back in hospital so I’m preparing a hospital ready bag with pyjamas, etc.

      The other interesting thing that I learned is that my understanding of how fibrosis forms was wrong. I had a CT scan and compared to one year ago, my fibrosis has progressed very little but the inflammation in my lungs has gotten much worse. I always thought that the inflammation caused the fibrosis but the latest thought is that these are two different cellular pathways. At the time of my diagnosis 3.5 years ago, the doctors were reluctant to put me on steroids because of my weight. But my weight has been stable and unchanging since I’ve been on the steroids and my blood sugar is completely normal. I didn’t know that steroids could cause diabetes! Now I am once again slowly lowering my steroid dosage but will stay on a maintenance dose until my next clinic appointment and blood draw. Then I will also be prescribed Ofev, fingers crossed! That’s the plan.

      I have been saying for some time that my oxygen levels drop to dangerous levels very rapidly when I move. When I was in hospital in March, my target was to stay on my constant 5lpm but it is now clear that this will not work. So I have four concentrators, two upstairs and two down and when I move, I must be on 10lpm. A lot of oxygen. My nose is a mess inside! I’ve been treating that with a variety of water based gels.

      Finally, one of my consultants and I got into a discussion of lung transplants and she told me that they now realise that the same processes that create the disease in the first place begin to affect the new lungs as well.  So they are no longer encouraging transplants for their patients. This may only apply to people with CHP as so many people here have had successful transplants.

      My short term memory on high doses of steroids is almost completely nonexistent. I’m going to stick a notebook and pen in my hospital ready bag so I can write things down. I can be in the middle of sentence and have no idea what the conversation was about.

      Thanks again and I hope you find some of this useful!

      Best wishes,

      Wendy

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