Michael Lamkin

That’s 3-4 visits per week to the transplant center

I’ve been told there are about 20 different meds to take after transplant and 3-4 visits to the transplant center. I was wondering if the meds taper off to a more reasonable amount and how long do the 3-4 visits last.
thanks

Mike

I’ve used the VA for all of the test they require to make a decision regarding a transplant and was turned down because of neuropathy and age (74). I had my first appointment at St. Joseph’s in Phoenix a couple of weeks ago and was told they had three additional tests they required before presenting everything to the committee that will make the…[Read more]

Hi Liam

I think the normal DLCO level is between 89-110 so my reading of 30 isn’t good. My other numbers are in the 80’s so I’ll be asking my doctor what I can do to get the DLCO no. Up (if that’s possible) I’ve also noticed increased breathlessness over the past few months and that really ….  I just finished 24 physical therapy sessions a few…[Read more]

Thanks so much Mark for your reply! I admit I’m possibly being overly optimistic that a medical miracle will result in a drug which not only stops the fibrosis but will also reverses the disease.  My last breathing test showed my DLCO reading as 30 (I think normal is 80-110) with the FVC 81 and FEV 81 so I realize I’m probably in the late stages…[Read more]

Sorry Mark, I just noticed this post after I tagged you with questions regarding this same subject. Thanks for the information as I found it very helpful. Do the post surgery medications have any negative side affects?

Hey Mark, I’m considering a lung transplant and hopefully will be able to qualify for the program. I know everyone’s different but can you tell me what your experience has been with regard to recovery from the surgery and post surgery medications? I have to admit I’m more than a little anxious about the whole thing.

thanks and take care

Mike

Too bad it’s not yet a reality yet. I’d use it in a nanosecond.

Here is the link to the Egyptian laser study if anyone still needs it.

http://www.ejbronchology.eg.net/article.asp?issn=1687-8426;year=2018;volume=12;issue=3;spage=317;epage=322;aulast=Sayed

Great idea Charlene. I’d be really interested in seeing the results whether they be favorable or otherwise. It would be great to find a meaningful treatment without the use of drugs which I personally despise

Have a great day!

Hi Charlene

Thanks for your reply to my post a week ago regarding the laser therapy study and the financial burden placed on IPF patients since insurance companies don’t cover the cost. I saw my doctor today and she said that normally where truly unbiased studies are conducted by doctors there is no charge to the patient for treatments. Although…[Read more]

I’m guessing that most IPF/PF patients won’t participate in the laser therapy treatments simply because their insurance won’t pay for the treatments. Most patients are probably already financially strained by no longer being able to work.

Thanks Charlene!

Hi all!  I’ve been on the Esbriet for about five and a half months. For the first two months the only side effects I noticed were increased shortness of breath, some loss of appetite,  nausea and more weakness than usual. Then the nausea seemed to subside a bit the diarrhea started which continues even now. I also got a nasty rash on my arms and l…[Read more]

I just wanted to share my experiences so far after using Esbriet for a little over three months.

Worst side effects so far are diarrhea (constant after 7 weeks use) and a skin rash on forearms, hands, legs and scalp probably due to sun exposure. The rash started as red spots on my forearms about the size of a pencil eraser and then became kind of…[Read more]

Hi Charlene, I’m not involved with a local support group.

michael Lamkin

Hi Charlene

Although I think I can identify with some of your fears regarding this disease I must also say that I’m much older (72) than you so I can’t really say I know how you feel. Although Ive convinced myself I don’t fear death I have to admit I sometimes have a certain amount of uncertainty. Im pretty sure this uncertainty at times is…[Read more]