Home Forums General Discussion Aspergillus and biologics

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • #308836
    PennyMarshal
    Participant

    My husband of 4l years died 20 days ago on the 2lst of August of aspergillus. He was a strong gracious man that was dearly loved by all who knew him. His story of his illness began when he came down with RA three years ago. We had just bought a house and he was worried that he would become unable to work and jeopardize our efforts to help our son complete his college dreams. Pat was seduced by the commercials of the quick and easy biologics which he began as soon as he could. Pat had another problem and that was sleep apnea and he used a cpap machine every night. All was going well until just before Thanksgiving 20l4 when he came down with pneumonia and was hospitalized with what the doctors though was TB and was put in isolation for five days. To confirm or see what the shadow was in his films a biopsy was performed and he was sent home when no TB was found. Later he was informed that he had a fungal infection called Aspergillus and he began taking the antifungal voriconazole twice daily. Even with side effects Pat took his medicine regularly for seven months at which time he had four cat scans showing minimal improvement. Pat couldn’t take any RA medicine during this time including prednisone anything that might further suppress his immune system. He did take very strong anti inflammatories that wreaked his stomach and bothered his kidneys. Pat discovered that the aspergillus had walled itself up in the upper region of his left lung and nothing was going to destroy it so dying of RA and with job concerns he opted to have a lung resection and remove it manually the source of his troubles. On August 5th he underwent the surgery and the next day he was doing ok and even walked down the hall with all us in tow. It wasn’t to last and carbon dioxide began building in his lungs and fogging his mind. He began a series of crisis’s one heart breaking after another. Blood pressure bottomed out, intubated, feeding tube down his throat, kidneys shut down, had to be strapped down, white cell count began rising, left lung leaking air, toes turning black, bed sores, trach put in, feeding picc put in and nothing stemmed the tide of failings happening one after the other. Finally, after being told that he would not get any better than he was right then, the lung tubes never removed (they were so, so painful) and always being on a ventilator and most significant the fungus was discovered positive in all biopsies done the day of the surgery. I told them I agreed to have his ventilator removed and he died three and a half hours later. I tell all of you to stay the course of the AP therapy and if you know of any one that has RA and sleep apnea with the use of a cpap machine to think extra hard if you want to play russian roulette with the many germs that can accumulate and grow in the heated humidifier. Pat was not told that it could be a danger and vinegar doesn’t kill aspergillus! You must get a humidifier that can be put in the dishwasher and sterilized along with any filters that available now that go in the hose as well as in the cpap itself. I so wish we had known and I want to send this knowledge around so people can warn others of this very real danger. From what I understand there are around l.7 million people using cpap or bipaps and you know out that number there are people with RA. Biologics kill people and that is a fact.

    #375514
    jasregadoo
    Moderator

    Penny,

    I am so very sorry for your loss. You are obviously a devoted wife and missing your husband terribly. There are so many ‘what ifs’ in the loss of a loved one. I remember going through those when my beloved mother died several years ago. Please take good care of yourself in this time of grief, and thank you for sharing Pat’s experience with us here.

    Sincerely,

    Julie

    #375515
    2011Rio
    Participant

    Penny,

    I’m very sorry for your loss. I pray for the days ahead of you and your healing. Thank you sharing.

    Tricia

    Diagnosed w/RA 2011
    Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
    metronidazole 500mg 1tab,3x a day M-F:
    doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
    Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
    vit c 2000mg daily; Actemra 10/2015-present (may come off since
    lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
    (weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
    fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

    #375516
    PennyMarshal
    Participant

    Thank you so much for your kind reply. I’m taking it one day at a time but I have my very disabled Mother to take care. She’s both mentally and physically challenged so there’s not much time to devote to my own grief. She’s been crying herself, but I’ve found that consoling her has helped me as well. I wish I could have been more convincing in getting my husband to stick to the AP therapy which he did try, it just didn’t help quick enough for him to rely on it. As I like to say he was seduced by the dark side when he went to a local rheumatologist. There are a lot of “what if”s” involved and I try not to beat myself up about it. It was his decision, I only wish it had turned out differently. Thank you again.

    #375517
    MLTelfer
    Participant

    So sorry for your loss and deepest prayers for you through such a difficult time. My gratitude for sharing your story. …..Mark

    #375518
    lynnie_sydney
    Participant

    Penny
    I am so very sorry to hear about your devastating loss.

    Thank you for sharing a story that must be heartbreaking for you to recount.
    I wish you much love and support.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #375519
    Pilgrimage
    Participant

    So sorry for your loss Penny.. Thank You for posting , My thoughts and Prayers are with you and your Family..

    Pilgrimage

    #375520
    frhorngal
    Participant

    So very sorry- what a heartbreaking story- prayers are with you

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #375521
    PennyMarshal
    Participant

    Thank you very much for your heart felt sympathy and prayers, believe me they are appreciated. I wanted to irradiate that anyone that is taking or just starting a biologic needs to stay on it only as long as absolutely necessary. It is my understanding that you can take a biologic and AP therapy (minocycline) at the same time and gradually taper off the biologic. It seemed that the longer Pat was on his well known biologic the weaker his immune system became. I believe that it was damaged after two and a half years of taking the shots. He used the same cpap machine during that time and had used that same one several years before that. In retrospect, he should have never used his cpap that long, but he had not had a problem with it. Now it is my mission to get the word out to save anyone that might fall into this horrible fungal infection that keeps you from taking any RA medicine including AP therapy (which by the way was a conflict of opinion by his doctors one said yes but everyone else said no). If you know of some other way that might be useful to get the word out, please let me know of your idea. Thank you so much!

Viewing 9 posts - 1 through 9 (of 9 total)

You must be logged in to reply to this topic.