Pulmonary Rehabilitation

[BookNut]

Just went for my preliminary pulmonary rehabilitation appointment. the therapist is very knowledgeable and very nice. i am looking forward to continuing. I am sure she wondered why on earth I was there. I was able to walk six minutes easily with my oxygen at 100%. That is because I am on prednisone and my current diet has improved my breathing amazingly. But she had taken a really thorough history of my illness, plus she had my history of poor pft tests. We decided that my breathing makes me like "the little girl with the curl right in the middle of her forehead. When she is good, she is very, very good, but when she is bad she is horrid.". My breathing is great when it is good. Trouble is, that generally lasts only 1-2 weeks on average, before it all falls apart.

Anyway...the plan is for me to attend 3 times a week for about four weeks, and then twice a weekfor another four weeks. The first part of the sessions will provide education about dealing with breathing issues, followed with time using exercise equipmemt. I have been wanting to get back into my walking program outside..so this is a way to get back into shape in a supervised setting with professionals who are experts on breathing issues. My husband will feel way more comfortable about me resuming my walking regimen if I have this training.

I am posting because I thought it might be helpful for some of you who struggle with shortness of breath and wheezing as I do. The process of getting signed up was easy. I just needed a referral from my PCP, and a copy of my recent pulmonary function tests. I think the prt's have to be lower than a certain level. i don't know how low that level needs to be...but I qualified. I believe my most recent tests fall around 50-55%. My insurance covers most of it. I just have to pay copays at the specialist level. For me, that is $15. That is expensive enough, though I know for many it would be much worse. It will be worth it if it can end this cycle of exacerbation, followed by steroids, it will be worth the money.

Hope this post is useful for someone.

[annekat]

Did you really mean three times a day for the first 4 weeks? You might as well pitch a tent and bring a sleeping bag! Other than that, the $15 copay doesn't sound too bad for something that will really help you. Funny about the "little girl with little curl" reference; my grandmother used to repeat that verse quite often during the summers that we three oldest little girls stayed with her.

I look forward to hearing that you are walking again. We talked about a "challenge" and maybe we can start that up when you are ready. I guess I could get started any time, walking on my road. So far, the weather is cooperating. I'm sure it would do me good. Famous last words....

And I was going to add, I get PFT's fairly often, but haven't bothered to ask for the results and am not sure why not. The one I got last week, he said my reading was up by 10% from the previous time, which was during grass season. That was when I talked him into prescribing 2 inhalers, a steroid and an albuterol rescue one. I guess they worked, and I was right. Ha, ha. For those who don't know, he's the pulmy who treats my Wegs, and in the past has always insisted that I couldn't be having asthma because of all the immunosuppressants and pred that I take. So inhalers wouldn't help me because the breathing issues were from Wegs. Well, I've cut back on their use now, because grass season is over, but still feel they help with WG inflammation and breathing issues. Some might argue. But when I stop them altogether, especially the steroid one, my WG coughing and SOB intensify.

[BookNut]

Did you really mean three times a day for the first 4 weeks? You might as well pitch a tent and bring a sleeping bag! Other than that, the $15 copay doesn't sound too bad for something that will really help you. Funny about the "little girl with little curl" reference; my grandmother used to repeat that verse quite often during the summers that we three oldest little girls stayed with her.

I look forward to hearing that you are walking again. We talked about a "challenge" and maybe we can start that up when you are ready. I guess I could get started any time, walking on my road. So far, the weather is cooperating. I'm sure it would do me good. Famous last words....

And I was going to add, I get PFT's fairly often, but haven't bothered to ask for the results and am not sure why not. The one I got last week, he said my reading was up by 10% from the previous time, which was during grass season. That was when I talked him into prescribing 2 inhalers, a steroid and an albuterol rescue one. I guess they worked, and I was right. Ha, ha. For those who don't know, he's the pulmy who treats my Wegs, and in the past has always insisted that I couldn't be having asthma because of all the immunosuppressants and pred that I take. So inhalers wouldn't help me because the breathing issues were from Wegs. Well, I've cut back on their use now, because grass season is over, but still feel they help with WG inflammation and breathing issues. Some might argue. But when I stop them altogether, especially the steroid one, my WG coughing and SOB intensify.

Well - Duh! This is a symptom of my extreme fatigue which continues unabated. It is three times a week for the first 4 weeks.

Ha! Of course the meds helped you get through the grass season. Hope he takes note of that. We know our bodies and reactions better than the docs do.

If you are gluten for punishment - here is a link to my blog, where I give a brief outline of my detox experience. Included at the end are much better views of the pix I posted on the forum yesterday. Same pix - but easier to see I think. I did this so I could email the info to my doctors.

10 Day Detox, Part II | Wanderings... (http://wanderings.edublogs.org/2015/09/16/10-day-detox-part-ii/)

[annekat]

Well, I should have known.... I do similar things with my Weggie brain. I'd also forgotten about your blog. Duh. So now I have placed its link on my desktop so I'll remember to look at it more regularly!

I did mention to the doc that the inhalers had helped me and still are, and he just sort of grunted. He gave me quite a few refills for those, so I guess I'm sort of on my own with them. I think I'll be cutting back more on them and will still have refills left when the alder pollen comes out in mid to late winter, followed by other trees, and culminating in grass and a few weeds. You are so right that we know our bodies better than anyone.

[Alysia]

Thanks for sharing Jacquie. I was with Phil in 2 sessions of respiratory phisio each lasted almost 2 hours. It was on Tuesday and Thursday before he was addmitted to the hospital on Sunday after. She also gave us education about how the lungs work and what can help the breathing. This part is most important not just for you but for the therapist because its a way to understand YOUR problem and what can help. I remember that Phil's therapist was a bit confused and changed theory during the session and between sessions. And after that she gave him the WRONG treatment that, I suspect, caused his lung to collapse. Later in the hospital we met many respiratory therapist and I didnt trust them anymore. I always challenged them, asking what they want to get through exercises that seems to me to risky like clapping on his back. Which turned out to make him feel worse. Then I didnt hesitate to even be rude to those therapists, protecting my sweetie. The exercise that was fine was walking as he could.
I suggest not to be shy to question the respiratory therapist why she suggest certain things, what is the rational behind them, regarding your case. And if anything makes you feel bad its a clear indication not to do it.
Sorry if I am kind of "negative". I learned somethings in the worst way. I dont want others to suffer like my sweetie did.
Good luck and please update us.

[BookNut]

Thanks for the information Alysia. What you say is a good caution to anyone embarking on rehab to listen to how one is feeling above all things when considering new treatments. The introductory literature that was given out, along with the statements from the PTs emphasizes not pushing oneself beyond personal limits. What I am going to is a group session. There are 5 or 6 of us. All the rest have COPD. I am the only one with persistent asthma, resistent to treatment and mild bronchiectasis. The session I attended was geared towards COPD, but should be helpful for most people with breathing issues. The therapist is the only one up till now who has been able to explain clearly why my condition is not COPD. It also explains why my pulmonologist has tended to make light of my difficulties. It all boils down to my PFT scores. In COPD, the pft scores are low and do not vary much. With bronchiectasis and asthma, the pft scores improve by a certain percentage between exacerbations. My fool of a pulmonologist has not done a pft since my very fist visit, which occured when I was feeling quite good. Last time I visited when I was impressing upon him what a bad year it had been he commented "But your pft is good.". I informed him that he had not done one since I started with him, that my asthma doc does one every visit, and I have many pfts at the 49-51% level. No comment from him. He has referred me to a colleague, and I wil likely not go back to him.

Anyway....I promise to be very cautious about new treatments. It loks to me so far like it will be simply a course of gym exercises where our oxygen and blood pressure will be closely monitored throughout. The two PTs check in with each of us at least every 10 minutes to evaluate how we are feeling...our levels of shortness of breath and exertion levels. But I certainly will be very careful.