COPD : Chronic Obstructive Pulmonary Disease
Get tested – you could be one of the missing millions.
Early diagnosis of COPD is vital as it allows patients to take steps to slow down the progression of the disease, and live healthy lives for longer and avoid expensive emergency care. However, not enough patients are diagnosed early enough.
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It’s been difficult and the lack of noticeable improvement tends to be disappointing. However, I’m not giving up and neither my pulmonary physio so the fight goes on.
So far I had done the treadmill, the bicycle and some weight liftings. Then, last time I had to do the trampoline. At first when she talked about the trampoline, I thought I heard wrong. Because I could not see myself jumping on a trampoline when I cannot even stand.
It was intense and ever so tiring. Breathing was such an effort that after that session I was actually exhausted and not smiling. But it felt good to have made it and I’m looking foward to my next week session.
Patience is a must. I hope these lungs of mine will rise up to my expectation and I will be able to walk again, normally.
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I went for a sleep study. The only annoying thing is the wire attached to your ear otherwise everything went smoothly. I arrived in the hospital and my room was already ready. The setting is very good as we all have a single room with a TV so we can rest well. Obviously we always hope for a good nite sleep because otherwise the test would be useless. My blood gases were fine.
I had a long talk with my specialist and the ongoing breathlessness that has been hard to deal with since I suffered from the pulmonary embolism. Even though my sleep results were normal for my condition, we decided to switch to the Bi-level. The option was presented to me 3 years ago but at the time, I had many problem to deal with the CPAP and the Bi-level trial was a disaster so I remained with the APAP. Lately however, I felt breathless even with my APAP on and began a cycle of sleepless nights.
I have been on the VPAP for three weeks now and I have had to change the settings twice with the help of the hospital respiratory technician because there was too much air coming through. I could not catch my breath. I also increased the ramp and that gives me time to calm down and go to sleep.
So far, I have had better nights and more deep sleep that I have not had for a long time. There are obvious side effects with the VPAP like a dry mouth, pain in the lungs and all but I will say that it’s been a positive experience for me. So let’s hope it improves and I can get used to it.
My breathlessness by day is still very bad with no improvement and the wet and windy weather is not helping at all even though I don’t even walk outside except to go to the hospital.
Filed under: blood gas, breathe again, bronchiectasis, One step at a time - 10 !, pulmonary embolism, sleep apnea, VPAP | No Comments »
Right now I’ll say pulmonary phsyiotherapy is very difficult, because I’m pushed to the limits and my body does not look very happy. I was told I am in control of my breathing therefore I should let it control me. Easier said than done, however there is some improvement. I am able to be standing more before my all body feels like crashing down.
I’m actually doing well on the bicycle but that is because I’m sitting, therefore I do not have all my weight to carry. Obviously I’m very slow but I can cycle for 10 min non stop and that’s good.
The treadmill was a bit complicated. I felt ever so breathless on there and it was as if my feet were not following. At one point the physiotherapist raised the speed and I actually went backward, exhauted, and could not breathe at all. I felt so dizzy. I just saw her rushing to the stop button.
Well, it took me a few days to recover but I keep on doing the excercises at home and I will see her in two weeks again. It’s tough to have to be so breathless for so long and it’s the first time it has ever happened to me that bad so it takes some time to get used to. At times I wonder if we ever get used to it.
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So, I finally took my follow up appointment with the pulmonary physiotherapist. I was on the list for the pulmonary rehab group but they have decided to give me a one on one pulmonary physiotherapy to make things easier for me. I was pleasantly surprised and I appreciate it.
We started the first session and obviously things are not easy for me because as soon as I stand I am breathless and I am not talking about a small breathlessness. It feels as if I have just run the marathon when all I actually did was standing up.
I am glad I am allowed to sit often because I would collapse. The physiotherapist is very nice, like all the therapists in this hospital. So I will go back again soon and meanwhile, I have a few exercises to do to build up some strength in these lungs of mine.
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I had my post hospitalisation visit with the specialist. It’s a team of doctors and I never know whom I’m going to see but I was glad I saw the same specialist that saw me during my first hospitalisation. He is competent, dynamic and listens to the patient. He goes deep into the problems and even though it may feel overwhelming to have to answer all the questions he is asking, it is actually a very positive thing in the end. Because he can explain what the problem is and why the problem exists.
I found that discussing with him my hospitalisation and going through the summary I recieved though the mail, helped me to understand better the complexity of what is going on. Obviously my lung health is not doing well but certains areas can be improved so I will be able to breath better and get rid of this ongoing tiring breathlessness that has been following me for a few months now.
For the first time, my O2 level is dropping below normal, so that’s not good. But for once my CO2 is actually at a normal level and that’s encouraging because I’m hypocapnic. However, the specialist thinks that my CO2 may be high up at night therefore it is making me so breathless when I am awake. So that would also be the reason why my apap seems so uncomfortable now and I feel as if there is not enough air coming through. That has been the case for quite some time now but I was told it was ok. Furthermore, the sleep studies I had while hospitalised never measured the CO2 specifically so I’m going to have another kind of sleep study and I will be hospitalised for a night in order to see if I have to switch from an apap to a bi-level. By solving this night problem I will be able to breathe better, therefore to move more and hopefully loose some weight.
I was told that the pulmonary hypertension is not dramatic and it should get better once we have solved the breathlessness and so will be the liver problem.
Furthermore, he also wanted me to start pulmonary rehab as soon as possible and I actually took my appointment that was due and started it.
I felt some sense of peacefulness when I left the specialist. To be explained things clearly and having someone who answers your questions instead of evading them, makes all the difference in the world. One has to be optimistic and be happy to be alive after these awful past months. I’m going at a very slow pace but at least I’m going and that is what’s important.
Filed under: blood gas, bronchiectasis, copd, One step at a time - 10 !, pulmonary embolism, pulmonary rehab, sleep apnea, weight | No Comments »
I have been going to the anticoagulation often since I left the hospital. My INR seemed to jump from one pole to the other but has quiet down since. I have also been very lucky to have been granted hospital transport and that is much appreciated as I am still so breathless and my ability to walk has been greatly reduced.
The nurses are very nice and things usually go smoothly when a patient is not getting wrestless ans starts to make noise and makes everyone nervous. The waiting time is endless, specially when we are waiting for our booklets to come back to know how much Warfarin we have to take. At times it seems ridiculous, but I guess the people writing the prescriptions have a lot to do.
I am on a monthly visit now and let’s hope it stays that way.
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I recieved a summary from my second hospitalisation. Obviously there was so many untold things by my specialist that I kind of panicked when I saw all the details of what was wrong with me.
I phoned my gp. Bottom line, she told me to give time to myself to heal because so far the frustrations and lack of patience have been dominating my life. I cannot walk without becoming so breathless and that is very frustrating because it was all I had left . I could walk outside for hours without the need to sit down and that was such a progress from the previous years; I was not running but I could walk.
She also reassured me and told me not to stop at words I read because there is more explanations and I should ask my specialist when I see him because he will explain clearly the all picture. And that I have to remember that my lung landscape is not good and therefore, I have survived the embolism, therefore things can only get better but I have to give myself some time.
Patience will come my way, hopefully. I wake up every single morning feeling so sick that my start of the day is always chaotic. But I went back to painting and that alone gives me a sense of inside peace. I meditate too and reflect on all the good things in my life and my family.
Breathe easy Caro !
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I went to the see the physiotherapist as part of my check up after my hospitalisation. Things have not improved much as I am still pretty much breathless once I start walking. Though I would say I am much more alive and dynamic than weeks back and I have found my humor again and my “joie de vivre”. I am doing all the right things though and I am told and told again, it will take time to feel well again. I was given a pulmonary rehab excercise sheet level 1, so I can build up some muscle strength. This pulmonary embolism made me so weak, but I strongly feel that it stayed too long untreated and therefore, exhausted my body to the point I am now. The physiotherapist, and I must say they are so nice in that hospital, wants me to go back into pulmonary rehab so I have been put on the list and hopefully I will start in a few months.
I took a walk outside this weekend and it was a very short walk as I cannot be on my two feet long enough to make it far. I am glad my other half was with me as mid-way I was so weak and in pain I actually could not remain standing without leaning on him. what a normal person would do in 5 minutes it took me 4 times more, if not 5. But the most important thing is that I actually made it and that was a step foward to my recovery. I felt that the meaning of “feeling old” took another dimension and that was a bit depressing. Same feeling I have when I go for the INR test and all the old people walk pass me while I am struggling to catch my breath and cannot keep up with them. That is so scary at times. The following day was like recovering from a long trip to the mountain: ackes everywhere, lungs screaming for help and exhaustion as if I had climbed the Everest.
Well, as I said before, it shows the mountain to climb and the road ahead but it certainly does not prevent me to smile.
Breathe easy !
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I can say I am one of the lucky ones, because my gp is an extraordinary woman who has become a friend with the years. She has seen me struggling with my health and has always encouraged me to stay positive, be courageous and has never been afraid to acknowledge the limits of science. Her straightfowardness has helped me to stop wondering about impossible possibilites. She is a very motivated person and she is also not afraid of talking about the limits and stupidities of the health care system. I figure that she should have gone into politics as a health minister. She will probably do wonders. I have been through a very rough patch the past months and she has been my pilar of strength. When I became so ill and desparate and that no treatment seemed to fit she did everything in her power to have me hospitalised and seen by the specialist who is caring for me, who is in my view, very slow to come and help a patient in urgent need. If it was not for her, I would still be struggling or dead by now. So yes, I am very grateful that in our crazy health care system, some people can actually make a difference and think seriously about the health of their patients.
She proposed to do the INR test as we tried to have a nurse come to the house to do it but somehow the distric nurses are not in the distric of my gp so, I had to travel. Because the INR was way too high, the local hospital took over and now I go there, using the hospital transport. She told me the previous day that she has blocked the appointment after me so we will have time to talk about what is happening to my lungs.
And we did ! There is nothing reassuring about pulmonary embolism and I know that it does not help my overall health. I often feel frustrated by my actual incapacity to walk and stay standing for more than a few minutes. I have been told to keep calm, rest and move a little. I’m more alive than a few weeks ago but only when I am sitted. I’d say that’s a start.
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