Father on ventilator for a month now. Just diagnosed with wegners disease in February

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Hi all,

My father was just diagnosed with wegener's in early February after a month of suffering from what he thought was pneumonia. After two weeks in the hospital he was sent home on steroids and lost his vision in his right eye. He knew this was going to to be a rough and slow recovery but he is a fighter and was ready to kick this awful disease. He was sent 2 weeks later for a rituxan infusion he was told to be prepared to feel exhausted the next day. The morning after his infusion he definitely felt tired and winded but thought nothing of it. After a couple hours he started to have tightness in his chest. My mom decided he needed to be taken to the ER. They made it there just in time. My dad's lungs had been attacked by wegener's. They had completely filled with blood and my family was told he was not going to make the night. He had a alveolar hemmorrhage. It's been a month in the ICU now. He had a trachomy done and is still hooked to the vetilator. All sedatives were stopped 5 days ago and he has yet to come out of his coma like state. I can't tell you how awful and quick this diease can attack. He had been monitored all that week and nothing was seen on his lungs. He has had 5 plasmapharisi treatments and we have been told the diease is now in control. Now we are more concerned about him coming to and living a normal life again. Certainly will be a long road. Has anyone heard or known of someone having such a severe case? I've read that the plasma treatments have a good long term effects keeping ppl in remission for up to 20 years. Anyone have experience with this treatment? Just anxious for my father's recovery. Mind you he I'd only 60 and was in excellent health until this diease took over. He is definitely a fighter!

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20 Replies

  • Posted

    This sounds very familiar. My son at 30 years started with a sinus infection that lasted 6 weeks. No coughing just the sinus problems. Thenone Sunday morning he started a cough and by that evening he was in the hospital. They drained over a liter of blood from his lungs. By Tuesday morning he had his first plasma exchange and had 5 of those treatments. Thankfully his lungs completely healed,his kidneys are at 66 percent. The disease did take his hearing in one ear. He tolerates the Rituxan well but so far has not been able to go lower than 10 mg of prednisone. He is learning to live with all the meds and is hopeful for the future. I don't think he will ever be free of the disease but will continue to do what needs to be done to get healthier and to maintain. People live with this for many many years. There are new meds being developed daily. The good news is that although Wegeners is rare the underlying cause is not. There are lots of different kinds of research on the various forms of auto immune disorders. I'm hopeful a cure for one will be found and that could mean a cure for all. It's a long road but be hopeful. Good Luck

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  • Posted

    Hi, I'm sorry to hear about your dad....

    I am 54 years, I had PAN when I was 21years and complete remission after 5 years later, then in 2013 was diagnosed with GPA..I relapsed again in 2016 and struggled to get back under control. 7 months later I was back under control, but I think it may have attacked my lungs again. I go for lung scan in June 2017 and bone density checks.I'm currently on prednisolone, imuran, crestol, fosavance, Vit D and calicum.

    I lead a normal life and currenlty work in Spain, I live in the UK.

    I've never had plasmapheresis so cannot comment and very interested in how it can help me. but have had x3 infusions of Rituximab which helped to reduce my steroids.  However i relasped as my Dr wanted me to get down to 5mgs so a monthly reduction of 1mg got me down to 6mgs and then I relapsed.

    Please keep us informed and God bless.....

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  • Posted

    I am so sorry to hear this Katie. I have not heard of a case so severe. What part of the country are you in? I had pneumonia 7 times before I was diagnosed. That in and of itself isn't enough of a marker to be suspicious. Other symptoms added to the pneumonia caused the alarm for me last August. I have a Boston doctor who put all the puzzle pieces together farily fast and got me to a Rheumatologist quickly. I'm having a maintenance infusion of Rhituximab next week, I also had weekly infusions during the month of September. I'm sure this will all be under control in a short time. Hang in there, he's in good hands.

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    • Posted

      Hi there,

      We are located in western ny. Luckily the Cleveland clinic is not too far from us and are hoping we can go there for my dad's long term condition. The doctors told us my dad's case is very severe and he pretty much has had just about every symptom of wegners in the last two months. He is not giving up though I know he will push through this. Such a crazy diease wish there was more known about it..good luck ..hope all is healthy

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  • Posted

    Hi Katie

    My father has also been just diagnosed. Last week. and his situation sounds almost exactly the same as your father's. He's 66 and was in excellent health before he fell sick with what we thought was a very bad cold last year. Docs did not find what was wrong until last week arte his kidneys started to fail too. He's currently sedated and on a ventilator. We are so scared and are hoping this will be beaten. Do you mind if I stay in touch with you?

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    • Posted

      Absolutely I know exactly what you are going through. It is very scary to see a loved one in such a traumatic state. Please just make sure you talk to him as much as you can and be there when you can. I'm a firm believer that they can hear you. Did it also attack your dad's lungs?

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    • Posted

      Yes. Aggressively. There's been some improvement but he still sedated and on a ventilator. It's also in his kidneys. They are at 15-20% function right now. He has been having dialysis. Did it also affect your dad's kidneys?

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    • Posted

      It effected my dad's kidneys the first time he was in the hospital which was back in January. He did not have to have dialysis. He also lost his vision in his right eye that time. This diease can attack quickly if not monitored correctly. What treatments is your dad receiving in the hospital. My heart hurts for you and your family.

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    • Posted

      I'm so sorry to hear that. The treatment he's getting is the chemo drug Romaxitab or something like that plus dialysis plus plasmapherisis treatments. However right now they're trying to stabilize his lungs so they can get the breathing tube out. That's where they're focusing most of their efforts. Did your dad recover full function of his kidneys after that first time in January? My dad has never had kidney issues so we're hoping that he will be able to recover full function. That will be one less thing to deal with after he gets out of this.

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    • Posted

      Hi Alex

      I wish I could tell you he is doing great but he is resting peacefully now. He passed this weekend. He had just started to come out of sedation and his body got tired of fighting so hard. This diease works fast when it wants to and unfortunately that's exactly what it did to my dad. I know his life would have never been the same and knowing my dad that would have just hurt him more. He was an active man who enjoyed his family and the outdoors. He would have never been happy stuck at home. The doctors couldn't even promise us he would be able to walk again. I wish so badly I could have given you a different response. Hope your father is getting better. My prayers are with you and your family for your dad's healthy recovery.

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    • Posted

      Oh my goodness Katie. My heart aches for you. I am so sorry to hear the news. I am heartbroken to think my dad will fare the same fate. It's a dark, scary thought but I know it is a likely outcome since he is so weak right now. I find solace in knowing that should my dad not make it he will be at peace as your dad is now. But at the same time we remain hopeful he will make it through. I'm just scared to know at what cost. Thank you for words and I wish you and your family will find peace soon, in time.

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    • Posted

      Hi Katie. He has been stable, not getting worse but still not out out of the woods yet. He was able to get out of sedation yesterday and the day before. We were able to communicate (yes/no answers) which was prescious. Today he got a tracheotomy so he can be extubated and doctors are hopeful his lungs will heal. His kidneys are still down. We're hoping they kick start soon. That's another worry. The doctors of told us that the long-term prognosis is complicated and not good. He could have long-term complications. I'm scared to think about what that means. But we're taking it one day at a time and are hoping for the best. We're glad that we just got to talk to him and told him we love him and he told us he loves us. The rest is up to fate.

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    • Posted

      I'm so glad you were able to talk to him. All you can do is stay positive and take it one day at a time. Hopefully he can beat this and won't have a flare up again or at all. People live with this diease for years and years so just remember that. Will continue to pray for your dad and a healthy recovery.

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    • Posted

      Hi Katie. He was doing so well last week he was up and about on a chair not walking yet but sitting up and watching TV and answering questions yes or no and generally the outlook looked better. Good enough that he was discharged from the ICU and placed into a post acute rehab clinic. That was a major mistake. Those clinics are lower budget run for profit and the level of care he received there was far less than the attention he was getting at the ICU. So we made a mistake by accepting the transfer and within three days he began bleeding in his lungs again and we did notice the level of care was less so it could've been level care combine with the disease but his condition worsened. The clinic even asked for a do not resucitate permission because they implied they couldn't do anything else for him there after he started bleeding again. We were in a panic and outraged so we immediately transferred him back over to the ICU. Thankfully he was able to get over that setback and out of imminent danger. The ICU found out that his tracheotomy was leaking which explained his need for increased oxygen for the past three days he also contracted what they think it's a form of adult chickenpox because he has a rash all over his body. Right now they're also trying to figure out why there seems to be gas in his blood (?). I don't clearly understand what they mean by that. So I'm waiting for a detailed explanation from the nurse or doctor. He's still receiving dialysis and rotuximab. But the disease is clearly still active. He's deeply sedated, again. So it seems we're back at square one in a way. Thank you for your thoughts and prayers. He is still fighting so we're not giving up either.

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    • Posted

      The up's and down's of this diease is certainly exhausting on the family and of course your dad as well. My dad had just been transferred to a rehabilitation center and passed two days after being admitted. It seemed that nobody was quit sure what to do for him anymore. At this point all you can do is trust the opinions of the doctors. With such little knowledge of this diease it makes it hard to wrap your head around everything that is going on. Just keep positive and take it one day at a time. Thoughts and prayers (:

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    • Posted

      I'm so sorry to hear this. Just remember this may have not been your prayer but maybe it was your dad's. He now is not suffering. Hopefully in the near future more research can be found on this awful disease. I know my family is hoping to do something next your in my dad's honor in hopes to raise money for the vasculitis center. I'm sure family will do the same. Let's help this from happening to other families.

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