Hey Cherry,

Remember when you mentioned that they had seen a shadow on your CT scan? Was that from the interstitial lung disease or have they still not figured out what the shadow was from?

It's weird...I've never heard of smoking causing interstitial lung problems...From everthing I've come across, it always seems to be autoimmune in terms of the cause...My dad has it too, but it's caused by dermatomyositis...He has never smoked either...

Hi Nicky,

I just found out 2 days ago by reading my medical records what they found. It says a possibly mild enlarged thymus and mild interstitial lung disease on the base of one of my lungs.

I am really angry that I had to find out about my ILD that way since its damage is irreversible and that test was done over 2 years ago!

That diagnosis explains a lot of what I am going through, but the doctor never told me nor had me follow up with a pulmonary doc to treat it.

So I made an appointment today to see if I can get some testing done and find out what I should have known 2 years ago.

Thanks for the consideration.

Stephanie

Hey Kendra,

First let me say I tried to quit cold turkey and i went right back to it. Because the cigs I smoked were the lowest in nicotine .1mg, on the market I bought the 21mg patch and cut it in half. Now a box lasted me twice as long. I also got a box of the 4mg Nicorette gum for the times I had a strong craving. Eventually I took a 21 patch and cut it into 3 strips and it cost much less than buy the 7mg box. I also went to the 2mg gum. I used the schedule they give you on the patch box. I did really well doing it this way. I no longer use the patch, but I still use the 2mg gum when I get strong urges and it helps a lot. It's been 12.5 weeks for me and I know I've got it beat! I will tell you my pcp wanted me to go cold turkey, but my cardio & neuro said use what ever I had to, to get through it. Kendra if you smoked a cig with high nicotine content, I would strongly suggest you start with the 21mg patch and work your way down. Then when it's time to go to the 7mg, you can buy the 14 and cut them in half and save a lot of money. I know the patches cost, but look what you are saving on cigs. Walmart is the cheapest for both the patches and gum. I'm sorry this has happened to you, but if it's from smoking you can do this. Belive me I know have difficult it is. I'm 57 and smoked 2 packs for as long as I can remember. I'm already seeing some benefits. I don't cough anymore or weez. It's great that I don't have to leave everyone and go outside to smoke. I do still feel like such a big part lf me is missing, but I have to keep telling myself it was a bad part and I don't want it back. Also, my sense of smell and taste are so much better. I now realize I'm not as good a cook as I thought I was all these years! Good luck and if I can be of any more help, just ask. Take care.

Big Hugs,
Pat

Hi Pat,
I was thinking you were the one who had recently quit smoking. Congratulations!!! I so admire you. I have cut way down and already feel so much better. I am not waking up coughing and don't get nearly as winded when walking dogs. I think I am going to need the patches to be able to give them up totally. It is crazy but as long as I know I can have 1 or 2 a day I can make it. It is the fear of never having one again that I am struggling with. I know it sounds ridiculous but I DO want to quit I just have to get my mind to accept that I am giving them up for good. I smoke ultra light 100's and was smoking 1 pack a day. I have a couple of 21 mg patches. I may try half of one tomorrow and see how that works. I will go to Wal Mart and get some gum too. Thanks so much for the info. I had to laugh about you saying you still feel like you are missing a part of yourself. I soooo understand that!!! I may email you for a pep talk if I hit a rough spot. Just knowing others have made it helps so much. I am feeling so much better. I don't know if it is the Pred or cutting down so much on the cigarettes but I feel today like it will be worth it. As much as I hate to admit this over the weekend i was asking myself why I was putting myself through the misery of giving the cigarettes up when I was so sick and not enjoying my life anyway. Today I KNOW it can only help and I have to do everything in my power to help my body stay strong so I can fight these health issues.
Thanks again
Kendra

Alice,
I so appeciate the info on how you have helped patients stop smoking. Have you found that tapering down is effective with most of them?

I think you are right that we have gone from nothing but a low dose of Mestinon to adding Pred, an antibiotic and then throwing in the smoking issue and it is so much to deal with at once. I am feeling better though and hope it continues.
Kendra

Sue,
Congratulations for giving up smoking after 30 years! That gives me hope that it is doable!!!

I will make sure that all my Drs. are on the same page. Thanks for the info!
Kendra

Kendra,

I'm sorry to hear that. It was weird because like 2 days ago I was looking into my records and it said I have a very mild case of interstitial disease, although I have never smoked. They pushed it aside since I had bigger problems, but they never told me about it.

Anyways, I know this withdraw thing is a pain but if my grandfather stopped cold turkey, because of what his doctor told him, I am sure you can too. Just make sure you keep an eye on your MG.

I hope you feel better soon,

Stephanie

Stephanie,
I noticed that you said your Dr. thought your ILD is from asthma. The Pulmo told me there are several things that can cause ILD and asthma was one of them. She also mentioned exposure to chemicals like asbestos or mold, auto immune disease and of course smoking. I would be furious that they never gave you that information even though they felt you had bigger problems. The pulmo told me that there is scarring in the lungs that shows up white on the CT scan, almost looks like pieces of bone. She said if it is smoking related it should be significantly better in 2-3 months. If it is auto immune related it will not. I am hoping it is the smoking because I do NOT want to have a lung biopsy!!! I am fed up with tests.
Kendra