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… 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… 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… 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.… 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… 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… 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… Read more

Hi Charlene

im a little confused with regard to posting on the forums. I’ve noticed a few posts I’ve made seem to disappear into cyberspace and never to be found again. I’ve only tagged one person on my posts and there have been posters where I’ve tagged no one it some still show up. Does it make a difference if I post on an email update or if… Read more

Hey Ray

just wanted to let you know I received the 771mg pills and they are in solid form. However it’s possible they also come in capsule (can opened and in powder form) but I don’t know.

Mt best and hope you’re doing well!

 

Michael

Hi Charlene

I personally have not an acute exasperation but I can imagine it must be very frightening. My private primary physician (before I started using the VA)  mentioned 6 years ago the  scaring on my lungs and kept asking if I’d ever had Valley Fever to which I always responded no. Actually 18 months ago I was diagnosed with VF 6 months… Read more

Hi Ray, I use the VA and it’s never too late to get started. For the most part their care is excellent and the highest co-pay they charge for medications is $34 a month but for the most part is $8-$11 a month per prescription. There are zero co-pays on ALL other treatments such as CT’s and X-rays. Also no charges for oxygen (even… Read more

Hi Charlene

I’m not aware of any non-profits that afford aid for patients with this disease however I’ve never really investigated that avenue since I use the VA. Yes, the insurance co-pay is the patients monthly share of the cost of the drug. I’d really like to hear from those who are subjected to this expense and if they are able to get… Read more

Hi Michael

Yes, I find the cost of these drugs amazing. While I understand that while developing a new medication or treatment is very expensive and most likely would not happen unless justified financially by the drug companies. A person is really at the mercy of the insurance industry or, as in your case, the drug company.

Sometimes I… Read more

Hi Charlene

Just out of curiosity I checked the cost of Esbriet on the internet and found that without insurance or any financial aid the annual cost was $94,000 per year. Using Medicare in addition to HMO insurance coverage the monthly co-pay was approximately $2,300. The Ofev was even more with an annual cost without insurance or financial… Read more

Hi Charlene and Ray

The Esbriet I take is a capsule in powder form and can be opened if necessary (unless the doctor says otherwise) which I’ve been taking as 3 257 mg pills 3 times a day. I’ll be starting the 771 mg pills (1 pill 3 times a day) as soon as I receive them. I don’t know what form the higher dose comes in but if no one else… Read more

Hi Charlene

I received a call from my pharmacist yesterday to check on how I was tolerating the Esbriet. I mentioned the dryer cough and increase in my shortness of breath. She said that since Esbriet only works on the cellular level it would not effect my breathing or cough. Since we’re in the middle of our “monsoon” season here in Arizona… Read more

I just started week 3 of taking Esbriet and in addition to some of the symptoms I’ve noticed besides those I’ve already seen mentioned is some increased shortness of breath and my cough seems to have much less production than before. Just wondering if anyone else have had similar experiences or are they possibly just the progression of the IPF?… Read more

Hi all and thanks for the info. regarding herbs etc.  I, like most of you I’m sure, really appreciate any additional information I can get regarding IPF. I’ve been on Esbriet for only 5 days taking one pill three times daily. Next week I’ll start on two pills three times a day and then three pills three times a day. I guess I won’t really… Read more

I live in Surprise AZ and receive my care through the VA. I currently am not involved with a local support group. I was just recently diagnosed and hadn’t given a local support group much thought but will look into the matter.

I currently use the VA clinic in Phoenix and have done so for the past 2.5 years. After finally getting over bout… Read more

Steve,

Yes, I’d like to have any information your doctor may provide related to supplements.  Thanks!

Michael

I finally heard back from my doctor a few days ago after asking his opinion, based on the latest information available, if the VA (my medical provider) would provide Metformin for treatment of IPF. He responded that there was no evidence that Metformin was an effective treatment and therefore the VA would not prescribe or provide its usage. I… Read more

No but I just started taking esbriet yesterday and immediately noticed the side affects of stomach ache and sick to my stomach. Took a couple of tums and that gave relief.

Hi Charlene

Thanks for responding to my post!  Olodaterol is the inhaler i got to replace the Symbicort which is a spray and very similar to Symbicort. You have to exhale and then spray and deeply inhale. Occasionally I have a problem inhaling the spray just as I did the Symbicort. Seems when it reaches the lungs I have a tendency to… Read more

I have been using both Spiriva  and another inhaler similar to Symbicort since being diagnosed with COPD 2.5 years ago. I’ve never used any type of emergency inhaler because I’ve never really needed it. I assume both inhalers work but all I know is my breathing has deteriorated since I bagan usage. When I was diagnosed with IPF a few months… Read more

Hi Joyce and all other commenters on this subject.

Thanks for the information regarding Esbriet. I just received the medication and will start taking by the end of the week. My doctor gave me the impression the side effects were pretty bad by ticking them all off and giving me the impression I would have them all.

Thanks again for helping to… Read more

I lie on my back sometimes but prefer lying on my side.