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Old 07-31-2005, 09:44 PM   #1
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copd questions

My mom has copd/emphysema with a lung capacity of 25%. She is 55 years old and is on oxygen 24/7. She just finished pulmonary rehab in May and her doctor is trying to get her on a lung transplant program. The doctors in Denver have told her to lose another 30 pounds (she's already lost 10) before they will even assess her for a lung transplant. I am concerned that she won't have enough time left to lose the weight. She is surprisingly active for this stage of her disease. I'm very confused by everything because at 25% lung capacity, she shouldn't be walking across the room let alone walking a treadmill for 45 minutes. Can anyone help me understand what 25% lung capacity means for her physical abilities and time left with us. I have siblings that just don't get the severity. And although I'm grateful that she is as active as she is, it gives the impression she is better than she is. It is really hard for me because I am 1000 miles away and can't be with her every day.

Any help would be appreciated!

 
Old 08-03-2005, 06:44 AM   #2
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Thumbs up Re: copd questions

Hi Caldaughter,

Hopefully I can lessen your anguish a little. I don't know your mom's height, so I plugged in 5'4" as a reference. A women of her age should be able to forcably expel 2580ml of air in one second. This is known as FEV1. Your mom can only expel 645ml, hence the 25% capacity. If she no longer smokes she can expect her FEV1 to naturally decrease by 20ml per year, so that in ten years her FEV1 should be at 445ml or 17% capacity. Do not let these low numbers throw you off. Myself I am 57 and have an FEV! of 10%. I too am on O2 24/7 @ 2l/min. I am fairly restricted in what I can do physically but my mind is as sharp as ever. I can still get around the house and enjoy T.V. and the computer. Please don't be too hard on your siblings, as one of the blessings/curses of our illness is that we look so darn healthy!

So as you can see, there is lots of time available for your mom to lose the other 20 pounds. For now the biggest thing is educate your mom on COPD, encourage her to keep exercising and avoid all situations where she may pick up a lung infection.

Hope this helps,

Phil

 
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Old 08-03-2005, 09:37 AM   #3
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Re: copd questions

Thank you Phil. I appreciate your explanation. You got her height right on! My mom knows a lot about her disease, and she is finally starting to share the information with us. I feel like I don't have the luxury of joking this off, so I try to listen to her and take her comments seriously. This has helped her a lot to feel comfortable she can talk openly and honestly about all the details, even bad ones.

My mom quit smoking about nine or ten years ago. Her last pulminary functions test yielded very similar results to one she had five years ago, so the last five year's progression has been really slow.

Your post gave me hope, and I appreciate that. I heard somewhere that at 16% lung capacity, you aren't exchanging enough O2 with CO2 to have sufficient lung function. Is this true, or am I confusing two different things?

I feel really helpless because it is so difficult to lose weight anyway, but without a lot of oxygen, it can take a really long time. I just don't want her to get discouraged.

Phil, since you are the only one to respond, I have another question. Do you know much about the lung transplant option? I've done some internet research, and it looks like it is the only way to replenish lung function and capacity, but it is very MAJOR surgery, so it's difficult know what option is better... keep going the way she is or have a transplant. This, of course, is her decision, and I'll support her either way, but it just seems so daunting.

Anyway, thanks for responding. I appreciate you taking the time.

Amy

 
Old 08-03-2005, 01:47 PM   #4
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Re: copd questions

Amy, my mom lived with only one lung and 10% lung of that lung was functioning for over a year. During this she still did some light house work, cooked, watched TV, played chess with my children and could walk down to the street daily and get the newspaper and mail.

My mother passed away from cancer that had spread to her lungs brain and other organs. Her doctors all told me that had she not gotten the cancer she would have been able to continue for quite a while because of her exercise routine. Let her do as much as she feels she can. The more she exercises the better she will feel.
Losing weight for a COPD patient is very difficult. They retain water naturally and some medications such a prednisone also cause the patient to retain water. Some of the medications that she takes require her to eat before hand. Try to see that when she is taking them its at the time she would normally be eating so she doesn't have to add a meal for the medications.

This disease is a tricky one to deal with. One day she will be up and going cleaning the house. The next she hardly has the air to get out of bed and then she will have some days in the middle. My mom lived with this disease for 15 years on oxygen. It is a long trying road, but she is just at the beginning.

Casey

Life should be measured not by the breaths you take, but by the times it takes your breath away.

 
Old 08-03-2005, 04:03 PM   #5
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Re: copd questions

Casey,
Thank you for your kind reply. I'm sorry about the loss of your mother. This is the hardest thing about my mom being sick... knowing that it will take her away. I am encouraged by your post because I figured my mom only had a couple of years left. She is strong and she is a fighter, but she is also tired. She hasn't given up, and that is the best sign. I wish I could monitor things closer, but I live far away. I have two brothers and a sister who live in my mom's town, and it is hard knowing they are so close to her, but not involved in her treatments or daily struggles. We are a very young family, and we all have young children who take a lot of our time, but I don't feel that excuses their attitudes.

Anyway, I don't mean to go off on a tangent. I did call one of my brothers and my sister and told them everything I knew. They acted surprised, but I didn't tell them anything my mom hasn't, they just don't want to listen. But hopefully we won't have to deal with losing mom too soon... that is my biggest fear. I will remember what you said about her ability to stay active for a long time. She is trying.

As far as her medicines go, I know that she must take steroids and she complains that they make her hungry and gain weight. She tried to avoid taking her usual allergy cortozone shot, but couldn't last the summer without it.

It seems so odd that she would be so ill at her age. I know people whose parents are well into their sixties and seventies and are very healthy. My in-laws are ten years older than her and aren't as sick as she. This is very hard to resolve. But she has lived a hard and difficult life.

I appreciate this board and the opportunity to get my feelings out to people who have been through it. Sometimes I wish I could just pack her up and move her here, but she wouldn't like that. She's married and likes her independence. So, as her daughter, what can I do to help her? What can my siblings do physically and emotionally to help her?

I wish I didn't have to watch her deteriorate, but it sounds like the nature of the beast. At least I know what to expect... although can we ever really be prepared?

Amy

 
Old 08-04-2005, 07:48 PM   #6
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Wink Re: copd questions

Hi Amy,

The exchange of O2 and CO2 is independant of your lung capacity and is measured by a special test which gives you a DLCO number. My DLCO is 19%, this is the amount of O2 and CO2 I can diffuse through my blood vessels. This is also one of the determing factors of being short of breath. If your mom is not short of breath, then her diffusion # (DLCO) would probably be high.

I really don't know too much about the transplant, so I cannot comment.

Right now, you have a well founded fear of the unknown. As you stay on the net and learn about COPD, you will find that it is not as progressive as everyone thinks and you will come to realize that your mom will be around for a long time yet. One thing your mom does need right now is support and someone she can talk to openly and it seems that she has found that in you, a caring loving daughter. God bless you!

Take care of yourself,

Phil

 
Old 08-06-2005, 03:06 AM   #7
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Re: copd questions

Amy,
The best advice I can give you from a daughters point of view is to try and listen to her. There are going to be good days and bad days, on the bad days if she starts to get upset it is going to start a vicious cycle so just listen to her, and understand that she is more frightened then you are.
Have mom start a journal of her days. What meds and dosages she takes and when. If she missed any. How her breathing was on a scale 1 to 10. What the weather was like, or if she ate something that seemed to bother her in anyway. We discovered that my mom couldn't eat citrus foods while on prednisone. It would cause her to have bad stomach pains.
My mom also gained alot of water weight while on the prednisone, so she tried to only take it after a really bad episode and then once she was stable she would start to ween back off it again.
As far as being a young family. I have a 17, 16 and 11. My mom was diagnosed before my oldest was even a year old. She was still there for the birth of the next two, and watched them grow up. Sure she missed alot of things because she didn't feel well, but we made sure to take hundreds of pictures and videos, we talked on the phone alot and visited as often as possible.
I know it easier said then done but spend as much time as possible with your mom while you have the chance and let her be around your kids. They will help keep her fighting.

Casey
Life shouldn't be measured by the breaths you take but by the moments that it takes your breath away.

 
Old 08-08-2005, 09:27 AM   #8
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Re: copd questions

Phil and Casey,

Thank you so much for taking the time to write me back and answer my questions. My mom said she would send me a copy of her most recent lung function tests. I think that will help me to ask some more specific questions.

I do feel a lot better now knowing that my mom can survive a long time if she keeps being active. Her doctor told her that the only reason he would consider recommending her for a lung transplant is because she has stayed so active over the years. She hasn't worked for over 10 years, but she has a lot of grandkids that keep her busy. They also get her sick a lot, so she has to be really careful now.

She has a friend who is on a lot oxygen 24/7 and they decided to connect her oxygen right to her lungs through her throat. Have either of you heard of this? It is supposed to require less oxygen and help with nasal comfort. My mom isn't on enough liters to do this yet, but it may be an option. Her friend has had quite a bit of trouble with it because you can't regulate the flow except on the tank. Anyway, she's having quite a bit of trouble adjusting.

Well, thanks again for responding. I may have more questions has time goes by.

Amy

 
Old 08-18-2005, 09:04 AM   #9
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Re: copd questions

Jean,
Thanks for your post. My mom uses her nebulizer at least once a day. I can't remember what drug she uses in it, but it's pretty common. She also uses and Advair inhaler. I think she does that twice a day. For the last three weeks she hasn't lost any weight, but she hasn't gained any either. It has been really muggy where she lives, and it's difficult for her to workout in that weather (at least that is what she says).

On another thread, someone mentioned using Glutathione in their nebulizer and how well it worked for them. Do you all know anything about that? I emailed my mom a fact sheet on it and encouraged her to ask her lung specialist about it. It is an amino acid found naturally in the body, but sometimes levels are low and inhaling it can help boost one's immune system and can be used in place of or in addition to prednisone (which my mom gets several times a year). She's excited about the new info and is going to look into it. My only concern is that it is made from whey, and my mom is allergic to almost all grains. So we'll see.

Anyway, after coming on this board, I feel a lot better about helping my mom maintain her current health status. Of course flu and pnemonia season are upon us soon and I'm always concerned about her risk for those. Do they have a pneumonia vaccine? Someone asked me about it recently, and I couldn't remember. I know my mom gets the flu shot, but I don't know about pneumonia. Do you all?

She still hasn't sent me her test results. I keep reminding her, but she forgets and gets busy with stuff. I hope she sends them soon. Maybe I should go visit her again and go with her to her next lung specialist appointment. It is in October. Do you think that is a good idea? Am I involving myself too much? I'm sure she will tell me what he says, but it isn't the same as being there.

Anyway, I really do appreciate all of you guys' help and encouragement. I appreciate your honesty and support.
Amy

 
Old 08-18-2005, 11:57 AM   #10
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Re: copd questions

Amy, as far as I think you can not involve your self to much when it comes to health of your mother. Knowing what is going on now will help you more later on. If mom is willing and you have the time, go to the doctor with mom, and also see if mom will sign the release of information form. This way if she is having problems and you are worried you can call the doctor yourself. Otherwise legal he cant talk to you about mom. I was able to get to know my parents doctors well enough before my parents were in the late stages so if I called to talk to him he knew me and was more comfortable in allowing me to help my parents.
I have never heard a pnuemonia shot. But I am not a doctor. As far as the glutathione treatments are concerned be careful. Make sure mom or you check with the doctor first and that he is aware that she is doing them. Especially with the grain allergy. Vitamins, herbs and all suppliments such as glutathione all have some advantages, but in some people they can cause more harm then good.

Hope you have a wonderful day
Casey

 
Old 08-18-2005, 12:53 PM   #11
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Thumbs up Re: copd questions

Hi Amy,

Just a short note to let you know that there is indeed a pneumonia shot. I have had one and unlike the flu shot, which is given yearly, the pneumonia shot is given every two or three years, (Because of the lack of O2 to my brain, I can't recall which one it is!)

Phil

 
Old 08-18-2005, 04:09 PM   #12
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Re: copd questions

Hi Phil. You're cute. My mom always says, "well, my oxygen must be low" if she skips a word or doesn't fill out a check right. I have to admit, I roll my eyes a lot when she says this ! I'll have her check into the pneumonia shot.

Jean, From what I understand, the glutathione is only given by prescription, so I'm sure she will have to talk to the doctor before taking it. I think I will see if I can go see her again and see the doctor with her. I'll talk to my mom about getting a medical information release form. She's having me be a medical power of attorney. Maybe that is enough. She is trying to get all of her affairs in order so she doesn't have to deal with them when she gets sick. I'm the executor and must follow through with the living will stuff. I hate having to do it, but I'm glad she can rely on me.

Thanks again for helping.
Amy

 
Old 08-18-2005, 04:50 PM   #13
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Re: copd questions

Okay, I asked my mom about the pneumonia shot. She can't have it because it is incubated in egg shells (or something to do with egg shells), and she is allergic. It isn't worth the allergy risk so...

Phil, my mom was wondering if you've ever been through pulmonary rehab or considered a lung transplant. Sorry if this is too personal.

She said her diffusion is at 25.4%. She said you can't really compare it to anyone since they callibrate it for that person's age, weight, height etc. But she has been told that her's is really good.

Jean, she is definitely making me her medical power of attorney, but I can only act on her behalf if she is unconcious. Is this enough in your opinion? I don't think she is completely comfortable with me being able to contact her doctor otherwise. I think she wants me to go through her. I don't want to push her on it. Maybe if I see her doctor with her I will ask him what he thinks.

My mom is glad that I have somewhere to go to for support and to have my questions answered. I tried to tell her to join, but she isn't really computer saavy. Oh well.

Amy

 
Old 08-19-2005, 10:50 AM   #14
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Thumbs up Re: copd questions

Hi Amy,

No question is too personal for me if it will help your mom. This here is just for you! I don't know if you realize just how much you are helping your mom right now by being her sounding board as well as her researcher. You are indeed her guardian angel right now. It's good to see that your mom has retained her sense of humor as that goes a long way in coping with COPD. You can also use light hearted banter to let your mom know that even though you are concerned, you can still laugh with her. When she says she forgot to send her PFT results, jokingly say something like, "You better crank your O2 up a couple of notches, mama!".

I went through rehab two years ago and I would not only recommend it, I would highly recommend it. A good rehab is so much more than an exercise program. They are generally 8-12 week sessions with 2-3, 2-hour classes per week. The first hour is devoted to exercise with a 10 minute warm-up period, then working out on a treadmill, stationary bike and an arm peddly thing for 10-15 minutes each, and then a 10 minute cool-down period. There is a physical therapist, a registered nurse and a respiratory therapist at each class and you are continually monitored throughout the session. Although most classes have 10-12 participants, you are given individual attention and your exercise program is designed especially for you and what you can do. A record is kept so that the people know what you can and cannot do.

The second hour is generally classroom, ( now that your all sweated up! ), and is probably more beneficial than the exercise portion. In these sessions you learn about the lungs, what COPD is, various meds and how to use them properly, breathing techniques, home oxygen, coping with COPD and so much more. My rehab had two full sessions with a nutritionist and then we all met individually with the nutritionist and she mapped out a diet suited to the invidual. I am the complete opposite to your mom in that I am 5'8" tall and weigh 100 pounds. They put me on a 3500 calorie a day diet. I can't eat 3500 calories a week, let alone a day!

One great aspect of being in a class with 10-12 people is the comaraderie and friendships that are formed in just 12 short weeks. You meet people that are in better or worse shape than yourself. You get to compare notes, give each other hints on how to cope, give each other encouragement.

Highly, highly recommend rehab!

I have weighed the pros and cons of a lung transplant, but in my case I have decided against it. With my FEV1 at 10%, my DLCO at 19% and my weight at 100 pounds I would not be the ideal candidate. As I have no medical, I would have to sell my home and move 1200 miles away to be near a transplant hospital. It would then be a roll of the dice as to whether or not I would be around for a suitable donor to be found. A dice roll as to whether or not I would survive the operation. A dice roll whether I would leave the hospital. I have discussed this with my wife and she understands and stands with me in my decision not to have it done. My doctors also believe it is the wise choice. They don't say so, but the eyes don't lie.

From the little I know, I would suspect your mom would be a good candidate for a lung transplant but the final decision must rest with her. There is lots of info on the web to help you.

Tell your mom she only has 10-15 more years to chase the old man around the bedroom! I am long past that with my low FEV1. Heck, if I chased the Mrs. around and was finally able to catch her, I wouldn't remember what to do with her!

Take care of yourself, Amy,

Phil

 
Old 08-19-2005, 12:34 PM   #15
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Re: copd questions

Thanks Phil for your kind words of encouragement and sense of humor. My mom finished rehab in May. She liked it, and I think she learned a lot. She especially got a lot out of the group session where everyone talked about what they were going through and where they were. It helped her to really understand the reality of her disease.

Her doctor is really impressed with her and can't say enough about her eligibility for a transplant. It is a difficult decision. She lives in Wyoming. Her closest transplant center is Denver. They told her to lose the extra weight. I've tried to talk her into a second opinion in Salt Lake City, but she is okay for now. The scariest part of the transplant idea is the 6 month recovery. I have no problem going to Wyoming and taking care of her for those months, but she is worried about how it will affect her ability to be with her grandkids and, of course, the pain. She really doesn't have much time to mess around with that. They stop considering you once you turn 65, and I think it takes several months to prepare for the surgery, then the waiting list is 1-3 years. So she is 55 now and time is ticking. I do feel a little more at ease knowing she can live another 10+ years as long as she keeps doing what she is doing.

Before I came on this board, I was really scared that she wouldn't be around when my daughter starts school or even long enough to see us with another child. I've relaxed my worries a little because of everyone's encouragement. My mom is a lot more relaxed knowing I'm trying to find out all I can for her. She appreciates the support I'm getting on this board too.

She's back to working out (yay). I'm really proud of her. She's so strong. It's really too bad she has to go through this because she's had a really tough life. But I guess we all go through our trials in life.

Well, I'm still nagging her about those test results. I'll try that line on her next time I talk to her. As far as her chasing her hubby around... he's not too hard to catch. He's got his own medical "rap" sheet!

Thanks again. Hang in there.
Amy

 
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