Pulmonary Fibrosis Support Group

Oh dear, I am certainly not in a position to give you advice on this but you're family will need to do some research and your little girl should have some counselling so that she understands. Your illness is very serious and will get progressively worse with time. You will need their support and no extra stress. Speak to your Doctor and see if you can get some family counselling. Do you have the support of parents, siblings, friends? They should all be learning as much as possible about this disease. Good Luck with everything and please stop trying to deal with it on your own....my heart goes out to you, you are in my thoughts and prayers.

I am so sorry to hear your story and for me it rings very close to home. I am 35 years old and was diagnosed with advanced Idiopathic Pulmonary Fibrosis in May 2010. At the time I was not on oxygen, but probably should have been. In March of 2011, it was much worse and I was put on oxygen and began slowing down gradually at first. I was also put on Prednisone and Cytoxan IV for 6 months. None of this helped me. In September 2011, I suffered a collapsed lung. For 2 months, after 3 chest tubes and 3 different hospitals my lung never resolved itself. In December 2011, I was admitted for pneumonia and it was touch and go. Then I got a call a week before for a double lung transplant and took it. I'm doing wonderful now!

For your situation first your husband (my wife essentially shut down because she was scared of the end game). Get him reading material. There is quite a bit of information on the internet, and several ways to find it. The first is using google and just searching for material. There are several good sites like the Mayo Clinic or National Jewish Health. Another way is to have information delivered to you/him. I use google alerts (alerts.google.com) to set up key works (pulmonary fibrosis) and get an email daily where web pages mention the words in them. It is extremely helpful and how I found this posting!

For your daughter (I have two girls - a 3 year old and a 1 year old), I recommend explaining it to her visually. Since she is 6 years old she will grasp a lot more with little information. However, you run the risk of scaring her. So what you do is explain it to her with your husband present. Do this.

Sit them both down. Grab her barbie or yours, or a doll that is similiar is some way. Next you need 2 grapes and 2 raisins. Explain how her and your husband lungs are the grapes, firm and solid. Explain what happens when they breath and show where they are located on the doll. Then pull out of your pocket mommy's lungs (the raisins). Explain what the disease is doing to you where as your body is attacking itself your lungs are scarring, which is causing your lungs to prevent them from expanding.

This is preventing you from taking deep breathes as well as less area for your blood to suck in the good oxygen. This is why you need the oxygen tanks and medication. And why mommy can't be like other mommy's.

After you do this, you then need 2 other things. Get a family counseler. I didn't, partially because of my upbringing; however I wish I did. So we are doing that now, and it is helping immensely!

The other thing is get yourself on the transplant list ASAP (if you aren't already)! Do not wait! There are several tests you may need and sometimes it takes a while just to get listed. Do it before it the disease gets to be too much.

I fought the transplant looking for a cure for so long, but kept being told to get on the list anyways - just in case. I was "yea ok sure" and thought I could find a cure. I pushed hard and it still got me in the end.

I'm sorry if this scares you, but it is a scarey disease. Looking back I realize I have had this for a long, long time. As you have, too.

Please message me if you want to chat more. I just joined the site tonight because of your post. Keep pushing!!