Gweneeth

I rarely participate in the forum but do scan it now and then. I felt sorry for you as you begin your search for understanding and answers to your questions. I took that time frame reference to heart and felt driven to ‘get my affairs in order quickly’. Seven and a half years later, my affairs are in order, have been corrected when friends mov…[Read more]

I’ve not posted in a few months but thought an update might add to what others have said.  I’ve been under Hospice care for a couple months and can already see how much I’ve declined.  I no longer drive or leave the house.  I’m on an opioid patch as inactivity has increased my back pain.  I’m still on 3L of oxygen but levels will drop to low 8…[Read more]

I’m in my 6th year of IPF and not on any IPF meds. I would highly recommend you contact Hospice as soon as possible. I just started with them and it has made such a difference. They took over everything, meds for comfort, for pain, a CNA to help me shower, she put clean sheets on my bed. I just hired a woman to clean my house (I pay for t…[Read more]

I agree with Richard.  I have IPF, Asthma and mild allergies so the inhalers are a God send for me.  I use Albuterol rescue inhaler but it still takes 25 minutes before I cough up junk.  I only use it when needed, mostly in the evening.  Hint: Don’t take it 30 minutes before church.  The cough is worse than a screaming baby.

Everything with t…[Read more]

Hi everyone.  I have an update to my last woe-is-me post.  I started on a very low dose of Lexapro 5mg after that post. It’s an antidepressant.  Either it worked or I just got out of my funk but I’m not angry anymore. Doc asked me to stay on it for a while so I will.  I had another function test last Friday and all my numbers were low with DLC…[Read more]

Lori, Christie put it beautifully and all the other comments were so helpful to me as well. I have had an enormous, positive response from friends, neighbors and my children (they have surprised me).  Part of it is living in a rural farming community that’s isolated from any major city makes us look out for each other more.  I wish I could sha…[Read more]

Jon, thanks for your encouraging words. It’s nice to know you also have an ‘Engraved Invitation’ to the Masters table.  That is one of Christine’s truism.  If anyone living in North Carolina, USA wants info on donating organs or whole body donation within this state, I have done the research and will share what I have. Im so glad to have this grou…[Read more]

Caroline, you made me laugh and to whisper a ‘praise God’. I loved your final phrase, “Engraved invitation”.

You asked why I chose not to try the meds.  I am highly sensitive to all pain medication and to a lesser degree other medication.  I read all the possible side affects of the meds and didn’t want to deal with those.  The other reason was p…[Read more]

Thank you to everyone that has shared your stories. There are as many different stories as there are people. I have a couple questions. 1) About once a year I get so angry at this disease because it’s creeping along and I’m sick and tired of thinking about it! It’s not like we can ignore it although I’m trying right now. I haven’t worn my…[Read more]

To Jill, I talked to my friend and she doesn’t do the type massage you refer to but she’s going to reach out to her community and see what turns up. She wanted to know if you know any names in the Asheville, NC area that I could call. Thank you for your help.

I understand some of what you said. I know someone that might have some of those credentials

Pulmonary doc says I won’t survive thoracic surgery and I don’t want that anyway. My regular doc wants me to see a spine man who specializes in steroid injections but I’ve had those before and they don’t work on me. I had spinal fusion from C2-T1 and L2-…[Read more]