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Severe COPD and Interstitial Lung Disease
COPD: Chronic obstructive pulmonary disease | Last Active: May 20, 2021 | Replies (63)Comment receiving replies
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.
Replies to "Thank you so much for writing. I think we finally got my Afib under control. I..."
Idiopathic Pulmonary Fibrosis
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
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!
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
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!
IPF is Idiopathic Pulmonary Fibrosis. Idiopathic meaning unknown cause. IPF is a progressive lung disease. It causes permanent and irreversible scarring that makes it difficult to breathe. This is why you were asked about a lung transplant. There are a couple of meds on the market that will slow down the progression of IPF. We are awaiting our meds for my husband. One cannot obtain this from your local pharmacy; only through the manufacturer of the drug. There are side effects from these drugs; we, weighed the lesser one to try. I do hope you will be able to get some relief soon. What I see with my spouse is, he tires easily, has had bouts of coughing (We have this pretty much under control). He tires from walking a short distance. He has been steadily losing weight. With the meds (when they arrive), I understand they will likely cause a weight loss. We were given a lot of material to read about this disease. I hope you have been given the material as well. Google is a good place to look also if you do not get the information from Connect at Mayo. Good luck and I hope you will be getting the meds.
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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.