I have an appointment with the respiratory clinic tomorrow...

[Willow7733]

Don’t know what to expect. I am glad it is face to face and not on the phone. Hope they can help.

[Daisy_FC]

I'm not sure if there is a typical procedure.

The first time I went I had lung function tests, then saw the consultant, then they did bloods and then I went back to see them again. At the end of all that they made some changes to medication.

This time I spoke to the consultant on the phone and then he set some medication changes/tests that the GP surgery will carry out this time.

I think in short they will assess your symptoms and make recommendations ... but I don't have a lot of experience with them!

I made sure to write down what I wanted to say, symptoms, medications, history, questions etc so that I didn't miss anything out.

Hope you get on ok.

[Willow7733]

That is so helpful to hear what happens. This is my first appointment with this specialist. She was so nice on the phone. We had spoken in July, but because of Covid, she told me there was a waiting list to see her - but given my symptoms and that everything wasn’t very well controlled, she was going to put me at the top of the list. Now we are almost back to normal and I can finally talk to her. I never was given an action plan, so really, the most I am hoping for is to leave there tomorrow with one.

[Hb2003 in reply to Willow7733]

Your username reminds me of my used to be cat willow she’s a 3 month old orange tabby ❤️❤️😊 also good luck 😁👍🏻

[Willow7733 in reply to Hb2003]

Awww I wish I had a cat. I have been looking into it for a while now. I would name him Floyd. 😊

[Willow7733]

And so my alarm didn’t go off. Jumped out of bed, showered and drove like crazy for my appointment today...and the appointment is for tomorrow. Well, at least now I know I can get up and ready in 15 minutes. 😊

[AirIsUnderrated in reply to Willow7733]

Oh no!! Lol

I’ve been meaning to message you & find out how you got on. Make lists & write down your answers. So glad you’re finally being seen! X

[Willow7733]

I finally went to my appointment! The respiratory therapist was SO nice. I told her I was there to get an action plan, since I never received one when I went to the pulmonologist. She noticed I was having trouble speaking (had a major flare last weekend and it is just starting to get better somewhat today). So she drags in a portable pulmonary function machine because she was wondering what my lungs were doing right now. After repeating the test four times (I kept coughing when I would force air out), it was determined that right now my lung capacity was at 56%? I was all “ is that good? Is that bad? Did I pass the test??!!”. She wanted me to call my GP (and I told her of my fear of doctors, I just need an action plan to know what I need to do when I get a flair)....so she called him right on the spot! I am so embarrassed because she starts off saying she is calling for me (gives my name) and she is calling because “Darlene didn’t want to call you.”. What??!!! I wish she wouldn’t have said THAT! I just wanted an action plan!! So right away I am on prednisone for the next six days, she is calling me on Wednesday to make sure I am ok, my GP is calling me this week for follow up, and I am getting an appointment with a pulmonologist ASAP. She also gave me this cool tiny spacer for my purse to take my puffers more easily if I am in the car or at work or anywhere on the go. So, that is that.

[AirIsUnderrated in reply to Willow7733]

Well I reckon that was long overdue!

Seriously, WELL DONE for going. Well done for getting rescue meds and your spacer, and a plan for the time being. You can ask for your long term action plan when they ring you. Yay!

I’ve had such a rotten week. I can honestly say your update is the best thing I’ve seen for many days. 👍🏻🥰👍🏻

[Willow7733 in reply to AirIsUnderrated]

Aww thanks! I feel so great I went. I felt so validated. And helped. Prednisone scares me though with all the side effects you hear people getting. I also was sitting there so grateful she was telling me it is OK to take a day off work to take care of myself. Omg...take care of ME? I don’t think I can remember ever doing that or feeling like it is ok to do so.

[AirIsUnderrated in reply to Willow7733]

Aw bless you. Of course we all have a duty to keep ourselves well just the same as keeping those around us well, but we do tend to forget that. I read a quote that said something like if you don’t make time to heal, then your body will take the time anyway, and it won’t be at your convenience. Makes perfect sense. You matter. 😘

[Willow7733 in reply to AirIsUnderrated]

True. So very true. And I think that is what happened this week. My body just had enough of this and I got really sick. I still am. I start my seven soft stretch tomorrow morning and am so tempted take tomorrow off. But I won’t. I never call in sick. I feel so guilty when I do.

[AirIsUnderrated in reply to Willow7733]

Good morning! How are you feeling now? Did the steroids help without too bad side effects? X

[Willow7733 in reply to AirIsUnderrated]

I am surprised that the steroids are helping so quickly. I am on day four of six and I am only having chest tightness around the last hour or so of my shifts at work, and in the morning. My cough is almost gone! Which is a really nice change. I am nervous though...my doctor is supposed to call me in the next few days to see how things are going. I really wish the respiratory therapist wouldn’t have told him I was there and didn’t want to call him! She could have worded it a bit differently. Now what do I say when I speak to him?! Anyway, what is done is done and I will just tell him the truth if he asks: I went to get an action plan. I had no idea she was going to do a lung function test on me. I was surprised that I was at 56% of my predicted value - to me, I was doing much better than the three days before the appointment. I am positive if I had the test then, it would have been lower. I hate doing all the follow up on the phone.

[AirIsUnderrated in reply to Willow7733]

That’s wonderful that you’re feeling so much better!

I think I would tell him that you didn’t want to speak on the phone because your breathing was such hard work. 😘

[Willow7733 in reply to AirIsUnderrated]

That is a great idea! I have to call him anyway to get prescription refills. For the first time in months I walked from work to my car last night and wasn’t gasping for breath! And I just took a shower and didn’t need to sit down to catch my breath to get dressed! It is such a great feeling. I didn’t realize how constricted my airway was.

[AirIsUnderrated in reply to Willow7733]

Oh bless you. I’m so glad! 🥰

[Willow7733 in reply to AirIsUnderrated]

So my prednisone stopped yesterday and I was doing really well. No tightness no coughing. But work got so busy with people calling in sick- and had to do 12 extra hours between yesterday and the day before. This morning my chest is so tight and I am winded again. I don’t know...shouldn’t the prednisone have worked?? I was on 40mg for six days. Started to feel it coming back yesterday, and this morning it is like I am almost back to square one. Maybe it is stress?? I am exhausted. Tonight is day 9 of 10 shifts in a row (not counting the overtime and no breaks this past week...)

[AirIsUnderrated in reply to Willow7733]

Drat. It obviously did work, but it sounds as if you need to stay on the pred for a bit longer. You were quite poorly when you went on it, and had been for a while.

How did you get on with the side effects?

Please call again and get advice. Please!

[Willow7733 in reply to AirIsUnderrated]

Oh for a few days it was amazing! I think I am over tired and stressed. That is the problem right now. My mother came to visit too this past week (while my work life was going crazy), and sometimes she tends to get territorial with me. I came home and she rearranged my whole house (changed my kitchen dishes into different cabinets, went through my closets and put things were she wanted them...even though it is my house. Long story. She was always like that with me.). So on top of work and over time I had to rearrange my house once she left yesterday. I just sat on my b from floor this morning totally exhausted and frustrated. Is this my life?? She also changed my bedding in my spare room and is now calling it “her room”. That is news to me!! I just would really like to have a break. Even a little one...Does that make me a horrible person??

[AirIsUnderrated in reply to Willow7733]

My goodness, NO.

Woah. That wouldn’t wash in my house. You aren’t 9 anymore and she isn’t cleaning your room in her house - this is your house. She isn’t respecting your boundaries. Now I understand why you haven’t got the courage to call your doctor and grumble about feeling rubbish, if you’ve been suppressed like that. You poor thing. 🤗

So you’ve got one more shift then how long off until your next run?

[Willow7733 in reply to AirIsUnderrated]

I have tomorrow (12 hours shift) and am off for three days, then I work 12 shifts (of 8 hrs) off two.

[AirIsUnderrated in reply to Willow7733]

How many hours a month do you work? That seems an awful lot! Are you a nurse?

[Willow7733 in reply to AirIsUnderrated]

It varies. I have my regular schedule and then I pick up shifts..depending how I feel. I can work anywhere between 40-55 hours a week. But I don’t pick up every single time they call me - which is every day. Yes, I am a nurse but soon will be studying to get my masters in nursing. I have been working on it slowly, but will be back to school full time. The reason I am working so much is to save money. I will be going back to university next spring. My specialty will be Pediatric oncology. Right now I am in neurology ICU.

[AirIsUnderrated in reply to Willow7733]

Hey girl. How are you feeling now? Did you manage to make the call? 🥰

[Willow7733 in reply to AirIsUnderrated]

I did make the call!! And he was a little put off because I didn’t go see him first. But, I pointed out I was looking for an action plan, and the respiratory therapists are the ones who do that. So he agreed that I did the right thing. But he was really nice with me. Made sure I agreed if I feel bad again, so call him. Which I promised I would. Might have to tomorrow. I am off anyway. The prednisone burst is finished Last Wednesday, and I felt like a new person. But today, I can’t catch my breath again just walking around the house. I have a hard time talking without coughing or losing my breath mid sentence. And I am waking up at night coughing like crazy again. The feeling of congestion is still gone though. I don’t have any experience with prednisone, so I don’t know if this is normal??? Should I just wait until it goes away? It should be cleared by now shouldn’t it??

[AirIsUnderrated in reply to Willow7733]

If your Ventolin isn't relieving it, then don't wait. Have you got someone you can call today?

[Willow7733 in reply to AirIsUnderrated]

It helps for about an hour, then I take it again. I think I know what this is...I am in my room and there is a lot of dust (been busy working crazy hours lately and haven’t been cleaning as much as I should). I moved a fan that I have on when I sleep, and a hug cloud of dust flew up in the air. If I am breathing that all night...for sure that would set off everything. I really don’t know where the dust is coming from! I can’t keep up with it. This week I am going out to buy a humidifier for my room. Winter makes this house really dry. Which, I assume, causes more dust??

[AirIsUnderrated in reply to Willow7733]

If you're needing more than 10 puffs of Ventolin in a day then I believe the advice is to make that call. Do you have out-of-hours medical access?

[Willow7733 in reply to AirIsUnderrated]

Well, I think I took about seven puffs so far today. We are told to go to the emergency room if we are having trouble after hours. I may just call my GP in the morning. I was also given a number to the respiratory therapist (it is on my action plan) and they told me to call anytime. I may do that first. Just to ask if this is normal...

[AirIsUnderrated in reply to Willow7733]

It isn't normal for 2 puffs of Ventolin to last much less than 4 hours. I can assure you of that. If you're like this now, how are going to be during the night? Your mum's gone home and you're by yourself, right? Please don't wait until you're in trouble in the middle of the night. Please.

[Willow7733 in reply to AirIsUnderrated]

Yes, she went back to my home town. Which is 4 hours away from me. I don’t have any family here in this city. I can always call the help line if I am having trouble during the night. I can also go to the emergency room if I am really bad. How long does it take for prednisone to leave your system? I suppose that since Wednesday was my last dose, I should be clear of it by now. I just don’t want any more of it. Halfway through the six days, I was so nauseous and it made me feel lightheaded at work. I am in the neonatal ICU Tuesday morning so I really hope my cough and breathing is better by then.

[AirIsUnderrated in reply to Willow7733]

I’m really sorry, I don’t know. I haven’t had it since I was a child. Write that down and ask when you call? I hope you feel better soon too, but if I were you I would absolutely call tomorrow to make sure you’re fit for your shift on Tuesday. Hugs

[Willow7733 in reply to AirIsUnderrated]

Thank you. I will call and see. I don’t know any to be coughing around the premature babies that is for sure!