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Thread: Anyone have the same lung problem?

  1. #11
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    Default Re: Anyone have the same lung problem?

    Hello to you all who read my posts and gave me some great advice. I have finally made an appointment with my EENT for Monday, the 29th. My main concern is my throat.....I want to see if all my problems I felt were "lung" related, may actually be my throat. From your posts, it sounds very likely that is what it could be. Thank yall very much, and I will be in touch, and keep you all posted after my appointment. Blessings and Love to you all.....
    Life is a Gift~ Lilly

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  3. #12
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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by Lilly View Post
    I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice
    Hello Lilly, I was diagnosed in August 2017, had the initial preds and apheresis and retuxan, started cellcept, but went into a flare anyway about a month after the last retuxan infusion - rheumy doc immediately took me off the cellcept (since it obviously was not preventing flare) and scheduled another retuxan set, with another to follow in three months. In the meantime I was having all your same symptoms and I was settling in for being sick forever. Coughing up a storm (productive) gurgling in my throat at night (scary!) lots of extreme fatigue. My daily meds are preds and blood pressure meds. I discovered two things: I was taking two blood pressure meds at the same time and this was causing very LOW pressure which makes one very tired, and two, I was actually having a bout of the flu, thinking it was Wegs. I feel fantastic today and am cough-free, taking the meds in a different order which is helping a lot. My fantastic pulmonolgist was so kind about this, and my rheumy too. I feel better than since August. I sure hope this turns out to be your case, that is, some explanation other than Wegs. Prayers your way.
    hellojulie

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  5. #13
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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by hellojulie View Post
    Hello Lilly, I was diagnosed in August 2017, had the initial preds and apheresis and retuxan, started cellcept, but went into a flare anyway about a month after the last retuxan infusion - rheumy doc immediately took me off the cellcept (since it obviously was not preventing flare) and scheduled another retuxan set, with another to follow in three months. In the meantime I was having all your same symptoms and I was settling in for being sick forever. Coughing up a storm (productive) gurgling in my throat at night (scary!) lots of extreme fatigue. My daily meds are preds and blood pressure meds. I discovered two things: I was taking two blood pressure meds at the same time and this was causing very LOW pressure which makes one very tired, and two, I was actually having a bout of the flu, thinking it was Wegs. I feel fantastic today and am cough-free, taking the meds in a different order which is helping a lot. My fantastic pulmonolgist was so kind about this, and my rheumy too. I feel better than since August. I sure hope this turns out to be your case, that is, some explanation other than Wegs. Prayers your way.
    hellojulie
    Hellojulie, Thank you for your post--you have brought up some very good information. I am too on many meds, and taking a look at them with a Dr. would not be a bad idea at all!! I have actually talked to my Primary Care Dr. about possibly not taking some of the meds I take for depression and anxiety. But he just says its probably not a good idea, because of the ups and downs I have dealing with Wegeners.....but I am going to talk to him again. I know that those 3 meds all cause drowsiness. I feel like I take a "cocktail" of pills each day. So when you found out you were actually fighting the flu instead of a flare....what a relief! I had a CXR 3 weeks ago at my Rheumatologist office and it was unchanged, and supposedly negative for any obvious problems. But my coughing and wheezing is getting progressively worse, so maybe I AM fighting the flu, my goodness its everywhere right now!!! I And also, I just came off a flare, and down to 10mgs. of prednisone, but I was on a high dose the last month, and my resistance was way way down....I have an appointment tomorrow with my EENT, to see if I could possibly have a subglottic stenosis of my throat. It causes all the same symptoms. This wegeners disease is a mean, tricky, confusing, crazy thing to have to deal with! I am so happy you are feeling better, and I hope that you do not get the damage as bad as I do, as the treatments (Rituxan) are a lot better than what was available or known to help back when I was diagnosed. Thank you for your prayers, and your information...I appreciate it so much. Ill let you know what I find out!! In the mean time, Blessings and Love to you --- :-)
    Life is a Gift~ Lilly

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    Default Re: Anyone have the same lung problem?

    Hi Lilly -- be sure to get the test for flu (nose swabs)-- I never did feel like I had it, but the test showed Type A! I mean, I wasn't down with fevers except twice, briefly. I still had an appetite ( a recent development, and welcome, as I have gone from 156 pounds to 120 in my four and a half months of Wegs) and I was just extraordinarily tired as usual. And the coughing and blowing, that had been going on for two months, with yukky stuff coming up. Now: lungs are mostly clear, and my head is clear, a miracle. I feel like the retuxan is really kicking in this time. I sleep well, also thank goodness, and take Percocet to be more comfortable, and to lessen my foot pain.

    Yes, what a strange disease. Do you have neuropathy? My right hand and both feet do not work well anymore; Wegs gave me drop foot and of course I can no longer drive. My husband takes me around, thank goodness he is retired and can do this. I walk mostly with a cane but can walk on my own at home. I am older than you are, 73, and I figure after 70 all bets are off, so indeed life is a gift for me every day! Love and blessings back,
    hellojulie

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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by hellojulie View Post
    Hi Lilly -- be sure to get the test for flu (nose swabs)-- I never did feel like I had it, but the test showed Type A! I mean, I wasn't down with fevers except twice, briefly. I still had an appetite ( a recent development, and welcome, as I have gone from 156 pounds to 120 in my four and a half months of Wegs) and I was just extraordinarily tired as usual. And the coughing and blowing, that had been going on for two months, with yukky stuff coming up. Now: lungs are mostly clear, and my head is clear, a miracle. I feel like the retuxan is really kicking in this time. I sleep well, also thank goodness, and take Percocet to be more comfortable, and to lessen my foot pain.

    Yes, what a strange disease. Do you have neuropathy? My right hand and both feet do not work well anymore; Wegs gave me drop foot and of course I can no longer drive. My husband takes me around, thank goodness he is retired and can do this. I walk mostly with a cane but can walk on my own at home. I am older than you are, 73, and I figure after 70 all bets are off, so indeed life is a gift for me every day! Love and blessings back,
    hellojulie
    hellojulie, Its so nice to hear from you this morning. Its interesting about the neuropathy and drop foot. I have a lot of foot (feet) issues. I have always had a bad bunion on my left foot. Since getting wegeners, I had to put the surgery on the back burner for awhile. Then when I had insurance that would cover the bunion surgery, something would come up every single time I scheduled the surgery!! It got to be funny, the first time I broke a toe 2 days before surg, and had to wait for it to heal. The next time I scheduled it, I got a flare. The next time I had to have sinus surg. I could go on for 3 more scheduled surgeries....so now, my bunion is so bad, its going to have to be broken and have plates and screws...so I have put it on the back burner again. And I also have times when I have to wear a thing on my foot when I sleep because my foot will not stay up, and this soft thing called a Posey, keeps my foot up. And I have a strange feeling on my right foot. It feels like there is something around it, like wrapped around it at the arch. I guess its numb. So strange foo things....I still drive, but my Mom comes with me to most appts, so she drives and that's a good thing, because then I can take my pain meds. So nice to learn more about you, and although we are discussing our health issues, its nice to talk to you. You are blessed to have a husband who is there for you. I will let you know what the dr says today about my throat and ears. Have a wonderful day, Blessings and Love,
    Life is a Gift~ Lilly

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  11. #16
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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by Lilly View Post
    hellojulie, Its so nice to hear from you this morning. Its interesting about the neuropathy and drop foot. I have a lot of foot (feet) issues. I have always had a bad bunion on my left foot. Since getting wegeners, I had to put the surgery on the back burner for awhile. Then when I had insurance that would cover the bunion surgery, something would come up every single time I scheduled the surgery!! It got to be funny, the first time I broke a toe 2 days before surg, and had to wait for it to heal. The next time I scheduled it, I got a flare. The next time I had to have sinus surg. I could go on for 3 more scheduled surgeries....so now, my bunion is so bad, its going to have to be broken and have plates and screws...so I have put it on the back burner again. And I also have times when I have to wear a thing on my foot when I sleep because my foot will not stay up, and this soft thing called a Posey, keeps my foot up. And I have a strange feeling on my right foot. It feels like there is something around it, like wrapped around it at the arch. I guess its numb. So strange foo things....I still drive, but my Mom comes with me to most appts, so she drives and that's a good thing, because then I can take my pain meds. So nice to learn more about you, and although we are discussing our health issues, its nice to talk to you. You are blessed to have a husband who is there for you. I will let you know what the dr says today about my throat and ears. Have a wonderful day, Blessings and Love,
    Lilly, it is indeed lovely to be getting to know you! I have been hoping for a correspondence with someone who is about my level of the disease, and you are such a nice person to boot! Actually I must admit everyone does seem nice on this forum.

    I am VERY curious about the nose and ears --yes please let me know. My ears and sinusitis were the first symptoms I had -- I just kept getting more and more 'plugged up". I could hear, but it was like everything was far away. I had the most awful time finding an ENT in North Carolina (Asheville) who would take my insurance and a referral -- when I did, he did nothing at all which helped. Of course neither of us knew anything about Wegener's, never heard of it. We were in NC for the birth of our son's FIFTH son! and were there for almost six weeks, while I got to feeling tireder every day, helping out with the four other little boys (eldest is 10). I was so glad to get home to Louisiana!! Exactly one month later after numerous doctor visits, emergency room ( sudden paralysis in feet and hand) and hospitalization, I was diagnosed at last, immediately got the treatments and started the healing.

    I am so sorry about that bunion!! I have a very little one -- I had better start watching it. No - it is not a bunion. It is a corn.

    Anyway, my ears are worse, though I can still hear. I wonder however if eventually I will go completely deaf.

    As to the odd feeling of the band around the foot, oh yes I have that in both feet, very seriously after a night's sleep, and it feels so REAL, like a tight band is really around my heel and ankle and instep. It also feels, often, like I am wearing Booties or big muklucks, when there's nothing on my feet at all. So strange. It's the vasculitis. I'm going to try to teach myself hand sewing with my numb fingers. I sewed something for my little granddaughter the other night; the hem on her nightgown was coming loose. Not easy but I did it, yay.

    Best of luck at the doctor's! Blessings and thanks to your mom for taking you places.
    hellojulie

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  13. #17
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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by hellojulie View Post
    Lilly, it is indeed lovely to be getting to know you! I have been hoping for a correspondence with someone who is about my level of the disease, and you are such a nice person to boot! Actually I must admit everyone does seem nice on this forum.

    I am VERY curious about the nose and ears --yes please let me know. My ears and sinusitis were the first symptoms I had -- I just kept getting more and more 'plugged up". I could hear, but it was like everything was far away. I had the most awful time finding an ENT in North Carolina (Asheville) who would take my insurance and a referral -- when I did, he did nothing at all which helped. Of course neither of us knew anything about Wegener's, never heard of it. We were in NC for the birth of our son's FIFTH son! and were there for almost six weeks, while I got to feeling tireder every day, helping out with the four other little boys (eldest is 10). I was so glad to get home to Louisiana!! Exactly one month later after numerous doctor visits, emergency room ( sudden paralysis in feet and hand) and hospitalization, I was diagnosed at last, immediately got the treatments and started the healing.

    I am so sorry about that bunion!! I have a very little one -- I had better start watching it. No - it is not a bunion. It is a corn.

    Anyway, my ears are worse, though I can still hear. I wonder however if eventually I will go completely deaf.

    As to the odd feeling of the band around the foot, oh yes I have that in both feet, very seriously after a night's sleep, and it feels so REAL, like a tight band is really around my heel and ankle and instep. It also feels, often, like I am wearing Booties or big muklucks, when there's nothing on my feet at all. So strange. It's the vasculitis. I'm going to try to teach myself hand sewing with my numb fingers. I sewed something for my little granddaughter the other night; the hem on her nightgown was coming loose. Not easy but I did it, yay.

    Best of luck at the doctor's! Blessings and thanks to your mom for taking you places.
    hellojulie
    Good morning hellojulie, I am enjoying talking with you also, and you are super sweet! Even though our diagnosis dates are very far apart, I feel we can still learn from each other. I agree with you about this forum, others who see what is posted will usually jump in to help if they have any advice....all the members are wonderful! I have made many friends, and since we are all battling the same chronic disease (and sometimes, other illnesses along with the wegeners). I see that you were diagnosed in Aug. 2017...that is a good thing in the aspect of treatment for new patients. I am interested in learning about people, like you, who are diagnosed within the last 5-10 years, if yall will have less body destruction from wegeners. Mainly because of the newer treatments, like Rituxan. So, speaking of "body destruction"..... :-D My appointment with my EENT yesterday was very interesting. He has been my doctor since 2010, and has performed some surgeries on my ears, inserted tubes in both ears, and clean my nose out in the back where I cannot reach. So, needless to say, we have a good patient/doctor relationship. But I noticed the time I saw him before this, he was acting a little flippant about my questions about my ears, and basically I felt he just felt like there was nothing more he can do for me and my ears. So, yesterday I wanted to discuss my ears, and get him to explain exactly what is going on in my ears at this time, and what options I have. He looked in my left ear, and told me there is definitely a tear in the eardrum. (this ear was damaged from a year of ear infections-until diagnosed with wegeners) Then he looked in the right ear, and the tube was just sitting in my ear stuck in earwax! So he took it out. I asked if he could explain some of the symptoms, like the roaring and noises I hear and the fluid I feel and pressure. He explained it was the nerve damage, caused from years of tubes and infections. I began to explain that I realized from the many weg. patients I talk with, these problems seem to be the norm for those who have had it for 20 years or more. It seemed like he just stopped listening. He obviously sees many patients with the same ear problems I have but don't have a disease. So when I told him about my throat, and wheezing and coughing....he said that from his experience, I do not "sound" like I have a narrowing in my throat. I told him the wheezing comes and goes, but I wheeze a lot more in the evenings, and my cat can hear it. I explained that my symptoms are the same as someone who has COPD, or asthma. But my cardiologist has been trying to help my wheezing and etc...but I'm not getting better. And many long term weg pts have this issue....then I realized that each time I mentioned the problems being a possible result of my wegs, he mentally shut down....even smirked a couple times. My Mom rolled her eyes at him when he said "well if your doctor wants a CT scan to see if you have a narrowing, I'll be happy to order one." There was a ring of sarcasm in his tone....Mom did NOT like it. I said my doctor did not want it, I wanted to find out if that's what could be causing my SOB, and nauses, etc. So now he thinks that I am trying to diagnose myself!!!! This post is getting too long, but I realized what was happening, so I just asked if he could clean out my nose, and tell me how it was looking....so he did that. It did not look bad because I have just come off a flare and had lots of steroids. I mentioned to him that I cannot taste or smell anymore, and now I am having ear problems, and I am just keeping up with the issues caused from my disease. I think at that point he understood a little about why I am (in HIS eyes, trying to diagnose myself from talking to others on the computer) but I am actually keeping up with an unstable disease, and trying to stay a step ahead of it to keep me as well as possible. Sooooo, I had a hearing test (results holding with no change since last one a year ago) and he ordered a CTscan to look at my neck/throat. I go see him a week later to discuss CT. To those who didn't fall asleep reading this long post, I want to share a web site that reminds me of how my doctor was acting. Its a website about Degos Disease. degosdisease.com/patient When the site comes up, choose "patients" from the top list. Then from the choices on the left, choose "A letter from a Doctor to those with chronic diseases." From Dr. Rob Lamberts. I'm sure many have read this, but it helps me when a doctor acts like my doctor yesterday. We have always been a good "team", but now that he cant do anything else to fix me, he is just lost. Sorry this is so long, but I cried yesterday because I just felt foolish....so if anyone else has had this experience, check out the "Doctors Letter", it may make you feel better. Blessings and Love.....
    Life is a Gift~ Lilly

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  15. #18
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    Default Re: Anyone have the same lung problem?

    Hi Lily, I’m sorry you are having these problems-they sound terrible! To me it sounds like the chest pain, SOB and dizziness upon anything physical is hypoxia. I would get a little pulsox (sell them at Walgreens) & start taking measurements when you get these symptoms (of course I would get a baseline first). That also being said I understand you have anxiety. I would not start taking any measurements if you think this will increase your anxiety. It will be a merry go round then


    Sent from my iPhone using Tapatalk

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    Default Re: Anyone have the same lung problem?

    Im so sorry your dr didnt take you seriously. That is very disheartening. I dont take it very well at all when that happens. I read that letter from the dr. He is very humble to admit what he did, i wish my dr could read it, and just acknowledge it...but then im being the proud one in even saying that i guess

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  19. #20
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    Default Re: Anyone have the same lung problem?

    Hi Lily, I am new to this forum. Some of your post were delightful to read because you have a witty side despite the pain. I may be able to provide some input to your current ENT frustrations, which I DO understand... esp. when you mentioned the "tone" from the otolaryngologist. I've have had this much of my life, and learned a lot in the last 2 yrs, that may be beneficial (or not)... doesn't hurt to share.

    1. You seem to be on many medications. I learned that your Pharmacist may be your best friend to share your concerns, symptoms and side-effects from the meds. (as the info. are deliberately printed, pgs in teeny-weeny 2 pt. font). I was told Pharmacists have more knowledge than prescribers, which makes sense as it's their expertise. They also seem to be more willing (and friendly) to take the time aside for discussions.
    2. If you have high-blood pressure, diabetes, asthma etc. Try get the home self-check tools, so when symptoms arises, you're able to immediately use them (and take a photo) to show your Dr. the next visit and for your own peace of mind to lessen anxiety. Many times anxiety is caused by lack of knowledge and the unknown. Once you're aware & familiar, things feel better right?
    3. Do you have sleep apnea?
    4. Does your throat worsen when lying down? When does it become irritated?
    5. Do you understand the reasoning for the P.E tubes in your ears? How long have they been placed there? (which is also informative). Did your ENT explain?

    That's it for now. Take care Lily - Helen
    Last edited by Helen; 02-01-2018 at 05:15 AM.

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