What is Pulmonary Fibrosis
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothe...
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Living with Pulmonary Fibrois
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I just signed my dad up for this site as a means for support and "a shoulder to cry on"; however, because of his current condition I'm not sure how often he will be able to log in. He is currently in the hospital at the moment.
My dad was recently diagnosed with Pulmonary Fibrois on August 5 of this year. Things have been pretty rough for him since then. He came home from the hospital after his biopsy surgery on August 10, then on August 30 he started having severe trouble breathing and ended up back in the hospital when he is currently at. He's been in the hospital approximately 40 days since August 5. I can tell every time I visit him that he is not sure what to expect. Some times he seems to being doing ok, but then other times he is down and highly depressed. My mom and I don't know how to help him as we can't even imagine what and how e is feeling. He mentioned that he would like to find other individuals who are living with this disease and hopefully be able to learn what to expect and how to live as normal a life as possible. I would appreciate any feedback anyone can give as it breaks my heart to see my dad so sad. I just don't know how to help him. Thanks in advance. Trish (Txsunshine) Txsunshine@mesh.net Posted on 09/28/08, 07:09 pm |
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Hi Trish, I joined this group when I found that I had idiopathic pulmonary fibrosis upon having a open lung biopsy in May '08. I haven't found this group to be very active or responsive. Tom 
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Hi Tom, Thanks for the reply.
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Hi Trish,
My Dad was diagnosed almost 3 yrs ago. You should join the Pulmonary Fibrosis Foundation site. There is a message board for you (the caretaker) and there is one for your Dad (people who actually have the disease. They usually will not let a caretaker into the forum of people who have the disease and vise versa. I got enormous support from them. Your Dad sounds like he should prob. be on anti-depressants/anti-anxiety meds. This disease among other things can cause depression and anxiety (who wouldnt be anxious with difficulty breathing?). I wish you luck and keep in touch. I need friends who are going thru similar things with IPF.
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hi trish I agree with tom2687 This group is not much help In April of this year and sad to say no one seems to be able to help. I am taking xanax and prozac also I am on prednizone my husband doesn't know what to do either and yes I am so scared hope you find some help. If you do please let me know take care Margee
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Hi to all,
My Mom was diagnoised 8/07 but we recently found out that she has had this since 2004 and wasn't diagnoised correctly. She is currently on 6ltrs o2 while at rest and up to 15 depending on activity. She is 69 and has no other medical problems. We also do not have an active support group in our area and have had to research most of the information about this on our own. We went to National Jewish Resp. Center site, they are the #1 Resp. Center in the world. Her case was accepted so we traveled there in July. I would highly reccomend all of you go to this site they are the most advanced in adult ILD/IPF. If any of you would like more info please reply back to me and I will give you my e-mail address. We will keep all of you in our prayers
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I agree with Tom, this forum is not really very active. Another Pulmonary Fibrosis forum that is very active is Huff-n-Puff. Lots of friendly and helpful people and a great source of information.
http://www.huff-n-puff.net/newforu...
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Hi everyone. I am sorry some of you have not gotten better feed back. My fiance was diagnosed in Feb. 2007. He went on full time oxygen last winter. he fights so hard with it, but he grows weaker and weaker. Today he applied for an electric scooter. It will be such a help for the both of us. I carry everything for him, and this will let him be more independent. We need to get a way to take the scooter with us without having to dismantle it. He has a very bad cough, and the doctor recently put him on Tessalon and it does seem to be helping with the cough. He just turned 70 in August. Also, the cold is very bad for him. We are discussingt perhaps going South or Southwest for the winter. We have a small camper trailer and could do it. I want to as I hate winter anyway, but with him so sick it will be worse. I wish all of you the best. Carmine
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Hi i have had pf for a long time and now i have to see a transplant dr for evaluation,looking at that as my last resort,am on 2 litres of o2 and lots of meds so know what he is going thru,good luck and take care of him he gonna need all your support.
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Hi Trish,
I was diagnosed with PF a month ago. I've chosen to be on oxygen only. This is because I had a reaction to drugs that made my life miserable. So, with my doctor's permission, I decided not to take them. This decision, while probably shortening my life, has made my days enjoyable. Prhaps your father will be able to find a way to live his life with some degree of happiness as well. GayleZ
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