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Post by susanny on Jun 8, 2011 4:47:56 GMT -5
Uploaded with ImageShack.usGlad to have you join us. There's a lot of information for you to look around at here, and a lot of support offered by all the members. Stop by the "Fence" and get to know how we live! It'll be nice to know you.
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Post by Deleted on Jun 8, 2011 7:06:55 GMT -5
Good Morning
My name is Mitch and my husband has end stage Emphysema. He has had a Lung Volume Reduction surgery four years ago. We live 900 miles north of Toronto so seeing his Dr is very hard. He goes to West Park Health Care Center twice a year for a boost. Fred is my husbands name and he also had prostate cancer two years ago. I joined your site because I don't understand PFT's and I don't understand how in the morning Fred is great and at night he is laboring. He sleep with a Bi-Pap and he always feels better when on it. Hope to learn from all of you. Thanks Mitch
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Post by sandy07 on Jun 8, 2011 8:21:06 GMT -5
Welcome Mitch. Does Fred use oxygen with his Bi-Pap? Does he use oxygen at all? I've heard of people using their bipap not only at night but during the day as well. I think we all tire out late in the day. I'm only good till about 5 in the afternoon. That means I must get most of supper all ready in the morning, so I don't have much left to do later. I nap, but it doesn't help with my energy level.
There will be some other folks along that will share their experiences. I'm not the best one to explain PFT's. I'll leave that up to someone else.
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Post by Blossom/Jackie W. on Jun 8, 2011 9:23:46 GMT -5
Welcome Mitch; I'm glad you joined us.... there's a lot of folks with a lot of learned and living experience here; all willing to share and help. If they can't they'll at least point you in the right direction. (Have you joined our main organization yet? www.copdcanada.ca If you haven't, I hope you'll consider it. Also; we do have a New Caregiver's support forum if you're interested at some point.... copdhelpmates.proboards.com/index.cgi?board=coffee&action=display&thread=335Now; getting on to your questions...... I've posted for Bobbi to have a look see re: BiPAP's - she uses one herself. You said you don't understand PFT's...... don't feel bad; many people don't. Deciphering them can be a challenge. Was there something specific you wanted to know? As for "wearing down as the day progresses" Frankly anyone with severe, very sever (maybe even moderate) wears down by the evening. We use so much more energy and calories just to breathe. It's exhausting believe me. Many have to nap; sometimes more than once a day. Does Fred nap? Does he get any exercise? That's vital - for endurance. You learn to do more with less and since you go to an excellent facility in Toronto; I'm sure they've told you the benefits of it. Re: "End Stage" Emphysema....... though we're all different; I don't really think there is such a thing. Perhaps there's a reason you referred to it that way? Many people have been living with Stage IV (very severe COPD - some might call End Stage) for many years..... Do you know what Fred's FEV1 is? I can't comment on the Prostate Cancer issue..... I assume that it was resolved? There's a whole billyhack of things I could add here but let's take it slow..... perhaps you could tell us a bit more. Just one other question though..... is there anything he does, or has it been suggested to you, to help alleviate his "labored" breathing when it occurs?
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Post by susanny on Jun 8, 2011 10:17:55 GMT -5
Hi, Mitch. Nice to meet you. Sorry you are having to be the caretaker here for Fred, but I'm sure you are well appreciated by him for all you do. I wonder if the ones who help us out know just how much we appreciated everything, and how much we hate having to ask for so much help. You are very much loved. I don't use a bipap, myself, but understand from having 2 sisters with them and all the people here that also use them, that they really help with the breathing during the night. I imagine that really helps him out earlier in the day...that and his morning meds. What meds does he take and how often? Maybe he needs something mid-day. I have 2 meds that I nebulize twice a day, but an extra one that I use if I need a boost during the day. I always need one about 5 in the afternoon to help me prepare dinner and eat it...and just generally get me through until my evening meds. Could be Fred needs that, too. It's not only hard to breathe, but tiring as well. And, as Sandy asked, is he using O2 at all? The simplest way to explain the PFT is that it measures how well you are using the O2 you breathe in. For example, the FEV1 measures comparing you to other people in your age group. The last time I was measured I was at 37% (I think). this means I breathe as well as 37 people out of 100 who are my age. There are other things measured during the test and others here can explain it better than I can, but this will get you started. Here is a link to Webmd's explanation of PFTs. If you google pulmonary function test you will find several links. www.webmd.com/lung/lung-function-testsHow did Fred do right after his LVRS? Has he started to have worsening of breathing ? Do you know what his last PFT results were? Can you list what meds he takes for COPD? Looking forward to hearing your answers and seeing what else we can help you with. Take care, Sue
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Post by bobbioh on Jun 8, 2011 11:20:08 GMT -5
Hi mitch nice to meet you. Im sorry Fred is feeling so poorly, Ive had a bi pap for 6 months now and I feel great in the mornings. I also use it if I need a nap. If Im not feeling well I have used it just to try to feel better and it seems to help. Cant hurt anything by using it more that Im aware of. Ive been end stage E for 5 yrs Im still kicking. I wear o2 24/7 now for about the last year I fought about it but its helped me feel better and be able to do more. Has Fred been to Plumo Rehab? Im going to start my second time after 5 yrs June 21 st. Rehab is a great thing and helps more then you can imagine. Is Fred Heavy? Im overweight and it makes it hard at times. I think the most important thing is to push yourself. The more you make yourself do the easier it gets. My FV1 ia 20 and I cook most nights, clean the house up through the week til my daughter comes and does the things I cant. Do dishes every night, wash and fold clothes. tend to my garden. If your determined you can do it and you will feel better. good luck bobbi
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