Lung specialist totally stressed me out!

Hi guys,

I know it's been a while since I posted. I actually got fired from my last job the day after I told my supervisor I was in the process of applying for FMLA. Here in the States if an employer has over 50 employees, they have to provide for the Family/Medical Leave Act. Basically it's an official accomodation where they have to let you take up to 6 weeks broken up time, or 4 months block of time for a serious medical condition, while they hold your job. You can also use it for flex time for doctor's appointments, and I needed it because I have an awful time in the morning for flex time. Anyways, luckily by some miracle, I got a new job that seems much better. I'm working as a hospice social worker, It's nice to see the outdoors, and I get to do more counseling and spend time with my clients! But you know, stressful, because it's a new job and all that.

So...it's been interesting! I have awful Asthma in the Fall, and actually in the month I was looking for a job I got bronchitis. When I saw my doctor a few weeks ago he says ""Next time you think you need high dose pred. call me so I can be part of the discussion."" Now, really, isn't that a nice thing to say? Of course I was freaked out because he said a bunch of other things where I felt like he didn't get where I was coming from. Basically, in my frazzaled state of mind i was trying to exercise more. So I went for a walk in the woods a few times. My asthma was good before I started (check). But the Sat. I went my allergies were awful afterwards. Then I went on a Wed., and by then I was coughing badly, productive cough, had been using my neb. for several days. So about midnight on Thurs. it dawned on me I was getting continuous chest pain, and there was no way I was going to be able to lie down and sleep. So i took 20 mg. pred. (20 mg. twice daily for 4 days like my plan says). And it DID work. So I was pleased I only had to take it for 4 days. But then when my rheum. did blood work, I got a note in the mail saying my white count was up, so I actually had bronchitis. So he also gave me antibiotics, and told me to take at least 5 mg. pred. because when I'm sick I have to go off of all my other anti-inflammatory arthritis meds.

Sooo...um since I had FINALLY tappered down to 1 mg. pred. before the bronchitis I tried to just go off of it after the asthma flare, but was arthritis miserable! So I took the 5 mg., then went down to 4 mg.

So my lung specialist was like ""you can't keep taking pred. your bones will turn to sand!!!"" Yeah, thanks. I just want to be able to breathe and to walk outside every once in a while!

So there are a few things. The major thing is I'm just really sad about the whole thing. I LOVE hiking, and actually hiked in Europe several times after graduate school. I had asthma then too, and it was a bit interesting, but I managed. There are just so many things that set my asthma off, and I'm on such high doses of meds, that even if my doctor says I can try walking in the woods my well meaning friends won't let me!! Also, I think my asthma attack started this week after looking for a card in my paperwork and mail for several hours. Is anyone else allergic to their mail? I totally thought this was psychosomatic the first 10 times it happened, but I have an almost instant reaction to going through mail. Like I get tight and start coughing. I think it's because it's been outside, where there's mold.

Anyways, so I had this asthma attack a week ago on Friday after going through my mail, and Autum is also my worst allergy season. So after speaking to my pulmonologist two weeks ago I had tappered down to 3 mg. pred. last Wed. Well often a few days later, I get breathing problems. So I'm at my new job, and I hate taking my inhaler out when I don't know people. So I probably put off too long taking it. But also, for some reason, I can go from feeling fine, to being tight, to cough with chest pain NOTHING helps. Well, nothing short of a bunch of nebs, and some form of steroid.

So, I took my rescue inhaler, went home right on time and used my neb. And went up from three puffs of flovent twice a day to 4 puffs. (Also in my plan and when I saw my doctor he said flovent is better than the steroid pills). He also has told me flovent can take 7-10 days to kick in, so I was just praying that if I took it right away it would work this time. Seriously I think this has only worked 3 times in the last 10 years, as I usually end up on high doses of oral pred. a few days later.

LOL. Thank you to anyone who has made it this far! So, I do these things over the weekend, and by Mon. am happy to say I feel pretty darn good. And I didn't have to go back up to the 4 mg. of pred. either, although I sure debated that! So I call my lung doctor and leave a message explaining all of this.

And get a message back too days later that I'm to go down to 2 puffs of flovent twice a day!!!! I was like ""What!!!!!!"" That doesn't make any sense! So long story short I spent like two days crying because this didn't make any sense, and of course it wasn't really an emergency as at this point I was feeling O.K. But I guess for several years my doctors had this debate and decided every other month that I had had asthma, then I didn't have asthma, then I had it again. And I was just like ""I can't go through that again!!!!""

So, long story short. After two days of emotional misery (Oy thank you pred!). My pulmonologist, poor guy, finally calls me back at 7:30 at night after all his other pts. it turns out, his staff told him I had called asking if I could take less flovent, so of course he said ""Sure, that would be fine!"" Thinking I was doing fine. So it turns out he was really happy how I handled everything, and is just generally encouraging of everything I can do to get off the oral pred. I also explained to him since I have psoriatic arthritis, which is also bad, that it gets very confusing as I have about three doctors managing my pred. So he offered to talk to my rheum. Which would be terrific!

Meanwhile, um. Because of the arthritis or the meds I take for it, I've recently been diagnosed with an immune deficiency. Low gammaglobulin. So I've had two infusions to boost my immune system. They are crazy expensive though, and when my new job ins. starts on Oct. 1st. I owe like $3000 out of pocket before the ins. will cover, and then it starts over again in Jan. So I'm going to see a second immunologist for a second opion, as my orginal asthma doc. is an immunologist. She said my IGG is low enough for an infusion, but my immunity is O.K. so she is recommending against it, but my rheum. said it helps with inflammation too. Confusing huh? Anyways, right now I'm under the care of a hematologist for the infusion, and have to go to the hospital for it. But there is a way i should be able to do it at home, but they haven't heard of it. So if I go for the second opinon, then hopefully the immunology people seem more comfortable with pts. doing their infusions at home.

Oh, and just saying...when i got my infusion yesterday, they totally give me IV steroids before it (because it's a blood product) so I don't have a reaction. I was like, ""Note to self, must tell lung specialist another source of steroids in the uphill battle to discontinue my pred!""

So there you have it! So sorry for the long rant and post. I guess there has been a lot going on. Anyways, one main thing is, I still don't know what to do about all the activities I miss. I guess the goal of asthma care is to be able to do more things, but for me it doesn't seem to be working that way. Does anyone have any thoughts, or ways they have been able to cope with this?

Thanks so much,

Bee

3 Replies

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  • Hi Bee,

    Do you have allergies all year round? Could you go hiking in the woods out of allergy season and by the coast during the season where hopefully allergies are reduced?You are near the coast if I remember correctly). I love walking too and get so frustrated when my asthma is restricting me!

  • Hmmm. I guess I do have allergies all year round. Winter is mostly my best season because all the vegetation freezes! I used to be better in Summer, and still am, can have problems still when it rains. I start feeling like a hermit because I used to like going outside more.

    Bee

  • Congrats on your new job!

    Good to hear from you - missed having you around here!

    Steroids: my sympathies. It is hard enough getting off of steroids when one only has asthma - between your asthma and RA, you must consider a few steroid free days here and there quite an achievement. I can empathize with the frustration about getting off them: I managed to get five days of no steroids before being put back on them mid-September. I'm now trying once again to taper as fast as my doctor will let me (5mg down every five days) in hopes of getting a few more steroid free days before the worst of the winter season and all of its triggers hit.

    Pulmo: I'm glad things go sorted and it turned out to be a misunderstanding, but I can also sympathize with the added stress of a pulmonologist trying to drive home the dangers of long term pred when one is well aware of the risks. Last spring, my regular pulmonologist sent me to a colleague of his whom he considered more expert in asthma than himself. The colleague spent the entire time trying to scare me into reducing pred - not helpful when one wants to be off pred and keeps flaring and getting put back on it. A few months later, after it was taking much longer than either of us wanted to get me tapered down, my own pulmo felt the need to tell me not to go up for minor reasons. He seemed to think that I was complaining about trivial problems and letting doctors raise the pred unnecessarily --- which was bizarre given that my own criteria seemed more stringent than his. When pressed he told me that his criteria for going up on pred was ""symptoms at rest"" and I told him that I would not consider that sufficient reason otherwise I'd never get off pred - on bad days I frequently have symptoms at rest. For me to go to the doctor, things have to be bad enough that I'm giving myself pep talks to stretch out the time between nebs to 3 hours.

    Turning bones to sand: I already have osteopenia in my spine and hip and I'm showing no signs of being in peri-menopause, let alone menopause (48 but still having regular periods). I doubt it is all due to pred because both my mother and grandmother belong to the cadre of the ever shrinking women and the loss of height with my mother at least started in her 30's. We also have no family history of spontaneous fracture despite the loss of height - so maybe this is just a genetic variation. Still it gives me good reason to want as many opportunities as possible to give my bones a break from pred: they surely don't need the added stress.

    Asthma plan: I can only say I'm jealous - I would love a plan that was as detailed as yours. I have yet to have anyone spell out a plan like that. It puts me in the uncomfortable position of having to call my doctor every time there is a problem. I worry about doctor burn-out when things are managed incident by incident without a plan for self management.

    Immune deficiency: I suppose that might explain all the illnesses you were having last year? I hope it gets cleared up without too much damage to the pocketbook or your health. $3K is quite a lot.

    Exercise: The other day a friend of mine called to ask if I wanted to go running with her - when she heard how tight I was on the phone (husband later told me I really didn't sound so good when he called me around the same time), she wouldn't let me come with her even after I promised that I was about to do a neb and would be fine afterwards. I don't know whether she was right or wrong, but I hear you on the frustration of friends who are worried about us and exercise.

    Re doing exercise: I don't know if this is the right way to handle it (so please discuss it with your doctor if you think it would work for you), but when I really want to exercise or have no choice but to run about doing necessary errands on a really bad day, I use a ""liberal puff policy"" - I first try to pretreat before I go out. Often despite this symptoms will appear 5-10 minutes within starting out, but disappear on their own. (this appears to be a common pattern with exercise and asthma from reading I've done) If they don't resolve, then I take two puffs and wait 15-20minutes to see if things improve, stopping and resting if necessary during the wait time. The wait time is to give ventolin a chance to kick in so I can assess how effective it is being. Then I keep going and if symptoms reappear I do two more puffs, wait for the effect, etc. I don't think I've ever needed more than 6 puffs to quiet things down and thereafter I'm fine for a few hours.

    I'm guessing this works because it gives me a good way of guaging the dose of ventolin that is needed to quiet things down. I did run this by my previous GP (I've since changed doctors), and he seemed OK with it, though not crazy about it.

    There is a guy named ""Breathing Stephen"" with a long time blog (http://breathinstephen.com/) who does a great deal of exercise despite very severe asthma with lots of air way remodelling - he posts on and off about his exercie regieme and even manages to walk marathons! So I can't imagine that asthma should stop exercise. I think it is just a matter of figuring out with yourself and your doctor what will work for you.

    I think it is really important not to give up on your yearning to stay active: most of all you enjoy it, but also the more health issues we have the more important it is to be as fit as possible. In particular, weight bearing exercise is especially important to preserving bones, and keeping moving I understand is also important to minimize the damage from arthritis. (correct me if I'm wrong on this).

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