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Cindi
@cindidugas

Posts: 1
Joined: Aug 16, 2015

I'm 65 with severe COPD

Posted by @cindidugas, Aug 16, 2015

Hi everyone. I just joined, my name is Cindi, I’m 65 with severe/very severe COPD. I have been struggling for a while and I will be coming to Mayo clinic in October for an evaluation to see if i qualify for a clinical trial. I am forever hopeful and I look forward to sharing stories with you all.

REPLY

I was diagnosed today. My understanding is that COPD is 3. COPD-Emphazema-chronic bronchitis. I don’t smoke.I quit 5 years ago. I had 2 stents–right coronary artery. I was not a heavy smoker. I was a careful smoker. No smoking in a cars and homes. I was always aware of non smokers and tried to be considerate. I retired in June of 2015. I owned and operated a beauty salon full time for 35 years. I think that all the fumes I inhaled may also be the cause as well as smoking. It was time to sell our home and move on to a new life to be closer to our children. I miss working. I always had energy and this tiredness I am experiencing has been a shock for me. We have 5 adult children. I have a 10 year old Granddaughter and I have been the only Mother she has known since birth. We help raise her 100% and you know what that means. We love her and we are happy to do this. You lose your freedom, but ,watching this little girl bloom is the most wonderful of all. My son is a single Dad since birth, also. He’s a great Dad And always puts her first. I’m using an inhaler and it helps. When I get really tired I use the rescue inhaler and that also helps. I walk every day and do some yoga. I am very active. It takes me a little longer to do what I used to do.I am looking for suggestions from anyone. I am 70. Thanks for listening. Sincerely,R

Hi @miarosa, welcome to Mayo Clinic Connect. I’m one of the community moderators here. I’m sorry to hear about what you’re going through – I can imaging how overwhelming it must be to deal with the diagnosis on top of your full, busy life with your family! I’m glad to hear that you’re able to stay active even when you’re having trouble breathing – regular exercise is one of the best ways to manage COPD. I thought you might be interested to see this link, it includes some recommendations for other ways to manage COPD at home: http://www.mayoclinic.org/diseases-conditions/copd/basics/lifestyle-home-remedies/con-20032017

It’s important to talk to your family and friends about all of this. It sounds like they’re a strong support system to you – have you talked to your family about the diagnosis?

@rebeccamcroberts

Hi @miarosa, welcome to Mayo Clinic Connect. I’m one of the community moderators here. I’m sorry to hear about what you’re going through – I can imaging how overwhelming it must be to deal with the diagnosis on top of your full, busy life with your family! I’m glad to hear that you’re able to stay active even when you’re having trouble breathing – regular exercise is one of the best ways to manage COPD. I thought you might be interested to see this link, it includes some recommendations for other ways to manage COPD at home: http://www.mayoclinic.org/diseases-conditions/copd/basics/lifestyle-home-remedies/con-20032017

It’s important to talk to your family and friends about all of this. It sounds like they’re a strong support system to you – have you talked to your family about the diagnosis?

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Hello my name is Robert, I am 60 years old and have COPD 3 . It will be 2 years in Aug. that I was Diagnosed and it has been a challenge. Hoping to find a clinical trial using stem cells. Some seem legitimate, others not so much. I have a Medicare plan insurance which also affects my choices. Has anyone had any luck researching or using stem cell therapy for COPD. Regeneration of Lung tissue for transplant seems what researchers are working on, but that will be to far in the future to help me. The mayo clinic website was one of the best I’ve researched but the treatments for living with COPD are only palliative.

Hi,
I am in a similar situation. I’m 63, turning 64 this summer (yikes how did that happen). I have emphysema, no chronic bronchitis. Consequently I get very short of breath but I do not have congestion. My FEV1% bounces around in the high to mid 20s. Although my obstruction is very severe my diffusion is moderate, I am very fortunate in that regard. These days I am doing well, I’m still working full time and living independently. What has helped me the most is regular exercise. I started off with pulmonary rehab where I learned a lot, it was an great first step but I could tolerate more. My pulmonologist had me do a level 3 pulmonary exercise program which was primarily strengthening. That was an amazing program. For 8 weeks I worked with a physiologist and a respiratory therapist; one to coach me on exercise and another to coach me on breathing. I took what I learned there and now go to a wellness center 4-5 days a week where I do a pretty rigorous exercise program. I also do something called QiGong which is like Tai Chi, actually Tai Chi is a form of QiGong. It is a great way to do breathing exercises. I also do a little bit of yoga but mostly for a good stretch before I work out, particularly for my hips where I have some OA. As you can tell I am all about exercise, it is very empowering. Exercise is what keeps me going, both physically and mentally.

Debbie

I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

@waterboy

I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

Jump to this post

Hello @waterboy and welcome to Mayo Connect. Your post about COPD and Alpha1 antitripsyn deficiency is very interesting. After reading your post, I did a little research and see that the Alpha I disorder is rare and often associated with liver problems as well. I’m sure that our Mayo Connect community would be interested in learning more about this – and I suspect you know quite a lot! Please share with us, as you are comfortable doing so, your history with this disorder. For example, who diagnosed this? What led to the testing? You say that you can get checked for free, but genetic testing is usually costly, where did you go for the free testing? Teresa

One place to get free Alpha1 testing is…. Alpha-1 Coded Testing Study | Alpha-1 Foundation

After I was diagnosed with COPD, about five years ago, I was on the net and was searching about COPD and read a little on Alpha1. I figured as long as it was free, and increased my knowledge…… it also increases their knowledge and data base…… it would be worth a try. All I had to do was stick my finger fill in 5 circles on a post card and send it in. It came back with a positive result, and they asked me to confirm it by getting a blood draw and sending the sample in to them. My lab did the draw and shipped it to them. The results were confirmed and I then included that info into my medical record.

Alpha1 can only be passed to children if both parents are either alpha1 patients or a carrier. It is quite possible that your parents don’t even know if they are alpha’s. If you are positive you should have your spouse, children, and even grandchildren tested. I suggest doing it through the same method in order to increase their data base and knowledge.

I am one that believes we as COPD patients need to do a few things…. 1. Stop smoking and watch your environment for pollutants 2. Listen to your doctors 3. Learn as much as you can about your conditions and the progression path. 4. Don’t despair use your energy to slow the progression. 5. Avail yourself to clinical studies… help future generations and at the same time learn more about yourself. 6. Join online groups and organizations like COPD foundation.

Another thing I am doing is going to the COPD10 convention in Rosemont, IL, July 28/29. The first day is for patients and only cost $10. Second day is geared for caregivers, but patients are welcome….. I got both days for $100. I of course will pass on info to this group when I return.

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