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aldrichgirl
@aldrichgirl

Posts: 24
Joined: Jan 26, 2012

Severe COPD and Interstitial Lung Disease

Posted by @aldrichgirl, Sun, Jul 1 8:46am

I was diagnosed several years ago with COPD after 40+ years of smoking. In the subsequent years we have learned I have 4 or 5 interstitial diseases including Interstitial Lung Disease. The two have been about equal but recent testing showed the interstitial is much worse than the COPD. I would love to know if anyone else has this problem and what the effects of the interstitial side are. I have been on O2 for years but just recently I have gotten so bad that I can barely pull 91% while sitting and on my home concentrator. I had always been able to pull 90% without the oxygen. That’s how much worse it’s gotten and walking is almost impossible. Everytime I get up & walk around I drop down to 80%, even while on oxygen. It’s getting harder & harder just to breathe. Would love to hear any comments or advice.

REPLY

@aldrichgirl Hello, I am Terri, I mentor the MAC & bronchiectasis group. I am sorry to hear that your COPD & IPF is getting worse.I know it is miserable to not be able breathe very well. I do not know a whole lot about the IPF except that it is a very serious lung disease that progresses. I have met patients who had IPF (Pulmonary Fibrosis) that ended up getting a lung transplant. Have you entertained that idea? I don't mean to alarm you, but it is better to be prepared for future events. Are you seeing a good specialist?

I was seeing a transplant dr from Dallas & he told me I had to get my rotten teeth out and lose down to 160 lb. I got down to 180 but I just couldn't lose that last 20. I have had several other problems to deal with and been in & out of the hospital with Afib , too much C02 in my body, unexplained anemia so bad that I had to get 3 pints of blood. That's what all's been going on just since January. The transplant dr has not been back to see me. But I have recently gotten so bad that I can only pull 80% on my portable oxygen. Same thing if I get up and walk around the house with my concantrator . Very hard to exercise when you can't breathe. With this 100+ heat we're having I've basically become housebound because I can't breathe in this heat either. I'm seeing a new lung fellow next month. They are talking about starting on a med for the interstitial. We'll see. I appreciate your help and advice. Thank you. aldrichgirl

Only two words apply…GOOD LUCK.

@aldrichgirl

I was seeing a transplant dr from Dallas & he told me I had to get my rotten teeth out and lose down to 160 lb. I got down to 180 but I just couldn't lose that last 20. I have had several other problems to deal with and been in & out of the hospital with Afib , too much C02 in my body, unexplained anemia so bad that I had to get 3 pints of blood. That's what all's been going on just since January. The transplant dr has not been back to see me. But I have recently gotten so bad that I can only pull 80% on my portable oxygen. Same thing if I get up and walk around the house with my concantrator . Very hard to exercise when you can't breathe. With this 100+ heat we're having I've basically become housebound because I can't breathe in this heat either. I'm seeing a new lung fellow next month. They are talking about starting on a med for the interstitial. We'll see. I appreciate your help and advice. Thank you. aldrichgirl

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@aldrichgirl my prayers are with you hope you find some relieve

Hi @aldrichgirl, welcome back to Connect. I added your post to the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/ You may wish to browse through the topics that include other discussions about COPD, interstitial lung disease, lung rehab, flying with oxygen and discussions about lung and heart issues.

I can imagine that the heat makes life increasingly difficult. You said that you were seeing a transplant physician. Are you still seeing him/her or is transplant no longer an option?

@aldrichgirl

I was seeing a transplant dr from Dallas & he told me I had to get my rotten teeth out and lose down to 160 lb. I got down to 180 but I just couldn't lose that last 20. I have had several other problems to deal with and been in & out of the hospital with Afib , too much C02 in my body, unexplained anemia so bad that I had to get 3 pints of blood. That's what all's been going on just since January. The transplant dr has not been back to see me. But I have recently gotten so bad that I can only pull 80% on my portable oxygen. Same thing if I get up and walk around the house with my concantrator . Very hard to exercise when you can't breathe. With this 100+ heat we're having I've basically become housebound because I can't breathe in this heat either. I'm seeing a new lung fellow next month. They are talking about starting on a med for the interstitial. We'll see. I appreciate your help and advice. Thank you. aldrichgirl

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Thank you so much. That, I believe, counts the most!

Well, he hasn't seen me in 6 months. I presume he gave up waiting on me to lose the wait. His name was Rosenblatt and I intended to keep seeing him but….. The Fellow Dr that was treating me just left the state so I have an appt. with a new Fellow this month. I have so many other problems I don't know if they think I could survive the surgery. I also have PBC (liver disease), chronic pain, and am now struggling to get my afib under control. I only started having it last year but we're getting my meds adjusted to keep it under control. It hits me 2-3 times a week. Sometimes I have to go to the ER to get it stopped. There are some days that I wonder if it's worth going on. I decided I would be a shut-in until this heat subsides. Thanks so much for your input and advice. I really need to find out if the transplant is out or not. I am 64 and never expected to live past 70 so that's getting closer every year. I have beautiful great-grandkids that I want to live every day I can to see them grow but I sometimes wonder if I could handle being bedfast. I think that is on its. way. Thank you again for sharing.

I am so sorry that you are having so many issues. I wanted to reach out and ask if your Cardiologist has mentioned ablation to hopefully stop the Afib? I had this about 5 years ago and thus far, I have not had another episode. I no longer take any kind of blood thinner. And too, your other issues may not make your a candidate for this procedure as they do put you to sleep. Again, I feel so much empathy for you with what you are going through. My husband has IPF is why I am on this site to learn anything I can about the disease and what to expect. Prayers for you.

@waterboy

Only two words apply…GOOD LUCK.

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Thank you!

Thank you so much for writing. I think we finally got my Afib under control. I hope anyway. My cardiologist had cut me down to 1 ammioderone per day and I was taking it around 8am. For two nights I jumped into Afib around 7-8. I changed and now take that pill around 4 pm. Haven't had a problem yet. I only take about 30 RX drugs and am typically had to dose. It often takes the highest dose to work for me. So I am well pleased. I think they just weren't lasting a whole 24 hrs for me. My activity in the am is low enough and my morning meds working well enough for me to wait till 4.
What excatly does IPF stand for? I've not heard that term before. I think I've also seen interstitial lung disease referred to some type of fibrosis? Or did I misread that? I've been diagnosed with that for several years but have never researched it. The docs have always been more concerned with my COPD than this, until this year and now the IPF is considerably worse than the C0PD. Thank you for your concern and I pray for the best for your husband.

@aldrichgirl

Thank you so much for writing. I think we finally got my Afib under control. I hope anyway. My cardiologist had cut me down to 1 ammioderone per day and I was taking it around 8am. For two nights I jumped into Afib around 7-8. I changed and now take that pill around 4 pm. Haven't had a problem yet. I only take about 30 RX drugs and am typically had to dose. It often takes the highest dose to work for me. So I am well pleased. I think they just weren't lasting a whole 24 hrs for me. My activity in the am is low enough and my morning meds working well enough for me to wait till 4.
What excatly does IPF stand for? I've not heard that term before. I think I've also seen interstitial lung disease referred to some type of fibrosis? Or did I misread that? I've been diagnosed with that for several years but have never researched it. The docs have always been more concerned with my COPD than this, until this year and now the IPF is considerably worse than the C0PD. Thank you for your concern and I pray for the best for your husband.

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I just got a link to a post that explained the I is for idiopathic. So I'm thinking Idiopathic Pulmanory Fibrociss. Both are spelled wrong and I am aware of that. Just didn't want to look it up. If I am wrong or right please let me know. Anyone who knows. Thanks.

@aldrichgirl

Thank you so much for writing. I think we finally got my Afib under control. I hope anyway. My cardiologist had cut me down to 1 ammioderone per day and I was taking it around 8am. For two nights I jumped into Afib around 7-8. I changed and now take that pill around 4 pm. Haven't had a problem yet. I only take about 30 RX drugs and am typically had to dose. It often takes the highest dose to work for me. So I am well pleased. I think they just weren't lasting a whole 24 hrs for me. My activity in the am is low enough and my morning meds working well enough for me to wait till 4.
What excatly does IPF stand for? I've not heard that term before. I think I've also seen interstitial lung disease referred to some type of fibrosis? Or did I misread that? I've been diagnosed with that for several years but have never researched it. The docs have always been more concerned with my COPD than this, until this year and now the IPF is considerably worse than the C0PD. Thank you for your concern and I pray for the best for your husband.

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Idiopathic Pulmonary Fibrosis

@aldrichgirl

Thank you so much for writing. I think we finally got my Afib under control. I hope anyway. My cardiologist had cut me down to 1 ammioderone per day and I was taking it around 8am. For two nights I jumped into Afib around 7-8. I changed and now take that pill around 4 pm. Haven't had a problem yet. I only take about 30 RX drugs and am typically had to dose. It often takes the highest dose to work for me. So I am well pleased. I think they just weren't lasting a whole 24 hrs for me. My activity in the am is low enough and my morning meds working well enough for me to wait till 4.
What excatly does IPF stand for? I've not heard that term before. I think I've also seen interstitial lung disease referred to some type of fibrosis? Or did I misread that? I've been diagnosed with that for several years but have never researched it. The docs have always been more concerned with my COPD than this, until this year and now the IPF is considerably worse than the C0PD. Thank you for your concern and I pray for the best for your husband.

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Hello @aldrichgirl

As I have read your posts I have to say how much I admire the steps you have taken to improve your health. The loss of weight is great and I'm sure your doctor would be pleased.

As you have a lot of different disorders, it does take a while to find the right combination of treatments. Keep working on seeing doctors who will help you sort out all of these issues and who will help you come up with answers. You are to be commended for the strides you have made.

Keep enjoying those grandkids!

Teresa

@aldrichgirl

Thank you so much for writing. I think we finally got my Afib under control. I hope anyway. My cardiologist had cut me down to 1 ammioderone per day and I was taking it around 8am. For two nights I jumped into Afib around 7-8. I changed and now take that pill around 4 pm. Haven't had a problem yet. I only take about 30 RX drugs and am typically had to dose. It often takes the highest dose to work for me. So I am well pleased. I think they just weren't lasting a whole 24 hrs for me. My activity in the am is low enough and my morning meds working well enough for me to wait till 4.
What excatly does IPF stand for? I've not heard that term before. I think I've also seen interstitial lung disease referred to some type of fibrosis? Or did I misread that? I've been diagnosed with that for several years but have never researched it. The docs have always been more concerned with my COPD than this, until this year and now the IPF is considerably worse than the C0PD. Thank you for your concern and I pray for the best for your husband.

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Thank you so much for your encouragement, Teresa. I am starting to get pretty discouraged though. Let me explain.I had premature ovarian failure and was fully menopausal at age 35. I believe that alone aged my body 20 years. I was plugging along pretty well until last November when I found myself wandering around in the country, driving alone, and finally by the grace of God made it home. Then the & the hospital stay was something I never want to live through again. I seems like I have aged ten years since that. One time since then I got to where I just couldn't get enough oxygen and turned out I was over loaded with C02. I spent a week in hospital on a bi-pap to get rid of that. Then about a month ago the drs told me my IPF was now worse than my COPD. I am just so afraid they won't approve me for bypass because of all my other problems. Plus I haven't been able to get out and exercise and I've put all that weight back on. I am afraid it won't be too long before I just don't have the energy to keep struggling with this. When I start to feel like that I pull out pics of my great-grandkids. It just seems to get more overwhelming now that I can't get out of the house & run around town, etc. I appreciate your comments and am always open to new advice. Thank you so much!

@aldrichgirl

Well, he hasn't seen me in 6 months. I presume he gave up waiting on me to lose the wait. His name was Rosenblatt and I intended to keep seeing him but….. The Fellow Dr that was treating me just left the state so I have an appt. with a new Fellow this month. I have so many other problems I don't know if they think I could survive the surgery. I also have PBC (liver disease), chronic pain, and am now struggling to get my afib under control. I only started having it last year but we're getting my meds adjusted to keep it under control. It hits me 2-3 times a week. Sometimes I have to go to the ER to get it stopped. There are some days that I wonder if it's worth going on. I decided I would be a shut-in until this heat subsides. Thanks so much for your input and advice. I really need to find out if the transplant is out or not. I am 64 and never expected to live past 70 so that's getting closer every year. I have beautiful great-grandkids that I want to live every day I can to see them grow but I sometimes wonder if I could handle being bedfast. I think that is on its. way. Thank you again for sharing.

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Dear @aldrichgirl, hello. You are not alone; I am mostly housebound too with this heat. It is difficult to breathe outdoors when you have lung issues. I just read your post again. I can see where you would get overwhelmed by having so many health issues to tackle at once. Age 64 is awefully young in this day and age, too young to be throwing in towel. Having the extra weight is definitely a hindrance to any kind of surgery, should you need it. You could benefit from enlisting into a pulmonary rehab program that is medically assisted. Have you ever been that route? I have a feeling that if you could get your weight down; your other health issues may improve. I am pulling for you! – Terri

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