1. < COPD: Chronic obstructive pulmonary disease

Severe COPD and Interstitial Lung Disease

Posted by aldrichgirl @aldrichgirl, Jul 1, 2018

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.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

aldrichgirl | @aldrichgirl | Jul 7, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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.

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aldrichgirl | @aldrichgirl | Jul 8, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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

REPLY
aldrichgirl | @aldrichgirl | Jul 8, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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.

Jump to this post

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!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 9, 2018
In reply to @aldrichgirl "Well, he hasn't seen me in 6 months. I presume he gave up waiting on me..." + (show)
@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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 9, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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.

Jump to this post

@aldrichgirl

You really have had some frightening experiences! My heart goes out to you. Are you being seen at a large research-oriented facility like Mayo or a medical school in your area? If not, I would encourage you to get a second opinion at a facility like this. Your many health problems may need the team-approach which is offered at medical centers that I have mentioned. Often, we need to be our own advocate for our health needs.

Keep in touch, I would like to hear how you are progressing.

Teresa

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 23, 2018

@aldrichgirl how are you doing? Any updates to share?
Thinking of you.

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aldrichgirl | @aldrichgirl | Jul 25, 2018

Thank you. Basically staying inside during this horrendous heat wave. The pulmanory Fellow who was treating me left and I will see the new doctor August 2nd. I feel pretty certain they will tell me that I am not a candidate for transplant due to my many other illnesses. It will be good to have regular appointments again. I will let you know what I learn.

REPLY
aldrichgirl | @aldrichgirl | Aug 5, 2018
In reply to @aldrichgirl "Thank you so much for writing. I think we finally got my Afib under control. I..." + (show)
@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.

Jump to this post

I recently had to go to 5 liters on my concentrator and on my portable tanks. Those little tanks just don't last too long on 5 liters. About 1 1/2 hours. I can't afford a newer triple inhaler but the dr added Spiriva to my Symbacort. He said the two will give almost the same affect as the new triple me. They are also referring me to a new rheumatologist to verify my RA. I want to encourage everyone who is new to this to hang in there and don't give up or get discouraged!! Every day you have is worth living and be thankful you aren't in my position. Have a blessed day!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2018

@aldrichgirl Hi. I am so sorry to hear of your increasing decline. I know how miserable and fritening it is to not be able to breathe properly. I have been to lung transplant support group meetings and met many wonderful transplantees. I would say that 2/3s were I.F. patients. I feel certain that your drs have mentioned the possibility of a transplant to you. Have you looked into that? It is wise to plan ahead on something like that. What are your thouhts?

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