Hi Pam,

I am pleased that so many people shared their stories with you and am sure that will give you a lot of hope. For what it may be worth, I am also a IPF survivor. Was diagnosed with IPF in 2009 and given 3 years to live by one of the large teaching university hospitals in the country. I was determined to defy the odds and am happy to… Read more

I want to share my personal experience with the group in the hopes that some of you may benefit from knowing about new treatment alternatives that are emerging and that you need to be aware of. First of all, I am an 8yr lung transplant recipient (Cleveland Clinic) who is fortunate to not have had COVID during the entire time it has been… Read more

I don’t know if this would work in each of your specific cases, but a daily dose of 12.5mg – 25mg tablet of Benadryl (OTC) has eliminated my post nasal drip for a 12-15 hour period and provided a restful 8 hr sleep every night for the past 8 years post-transplant. It was recommended to me by Cleveland Clinic and is non-addictive. You may want… Read more

Hi Madonna,
I replied to your email this afternoon with details for you to consider – not sure how frequently you access your emails so wanted to alert you via this post.

Les

Hi Charlene,

Dry skin is a side effect of using certain drugs – try using Eucerin Advanced Repair moisturizing cream that comes in a jar – recommended by my dermatologist and works in my case.

Since the COVID vaccine is relatively new, information on it’s impact on lung transplant recipients is hard to come by. I came across an AP article this afternoon that may be of interest to our transplant members so I thought I would share a link to… Read more

People with IPF can all share their individual personal experiences with drinking wine which may not all be the same. However, extrapolating from those individual samples of “ones” is fraught with risk. There are two ways to get a definitive answer: either based on a proper statistically valid cause and effect analysis, or relying on the… Read more

Hi Charlene,

The reason most pulmonologists advise IPF ( particularly post-transplant) patients against drinking alcohol is because many of the drugs that these patients take put a tremendous stress on the liver and drinking alcohol can exacerbate the problem. Drugs such as Imuran, Cellcept and corticosteroids are very toxic to the liver and… Read more

Kathleen, based on CAT scans, pulmonary function Tests , blood oxygen saturation tests and 6 min walk tests, the pulmonologists at the University of Michigan Health Center concluded that my case resembled that of IPF. However, they told me that one is never 100% sure unless it is verified with a lung biopsy which they did and confirmed that I… Read more

Hi Kathleen,

You bring up an excellent question that needs an informed response. In general, it is a wise decision to obtain second opinions to validate (1) if the diagnosis you have received is valid and (2) if the prescribed solution is the right one for your diagnosis given your specific health condition. Since there is always a… Read more

Mike,

I don’t believe that CC Pharma is available for an on-going supply of retail meds nor do I believe that it is a Specialty Pharma. You should check it out with CC. I doubt they are part of any PBM network and provide drugs primarily to CC inpatients just like other hospitals. In the past, CC has used Columbus Ohio based Avela Pharmacy… Read more

Hi MIke,

I too received my lung transplant from Cleveland Clinic several years ago and have first-hand experience with Medicare’s rules for covering drug costs. Medicare (Part B not Part D) covers the full cost of anti-rejection drugs as well as Prednisone IF your transplant costs were paid for by Medicare. In order to take advantage of… Read more

Hi Mary Jo,

You have raised two separate issues which I will try to shed some light on in the hopes that it will help you make the right decision about a potential lung transplant:

Can you be evaluated at multiple centers?
Yes, but it depends on the insurance coverage you have, and your willingness to pay for the applicable copays. If cost… Read more

Long term use of Prednisone even at low doses (eg,  5 mg)  can result in drug to drug interactions, bone density weakening, diabetes, skin cancer,  and impact to blood pressure meds, among other side effects. It can mask serious organ problems such as a malfunctioning appendix, sometimes until it is too late. At the end of the day, it’s a… Read more

Hi Bobbie,

 

I’m sorry to hear about your wait to hear about the results of your biopsy and next steps.

Typically, it takes 3-5 days for the biopsy results to be published. That is because there are a few steps in the process that involve a number of players. The surgeon has to extract tissue samples and send them to the lab for review.… Read more

Generally, tremors are a side effect of tacrolimus.  The tremors begin to subside over time as your body adjusts to the dosage levels, or the levels are reduced to a more steady state. I know because I experienced severe tremors after my transplant in 2014 and am mostly recovered now. Kidney transplant patients have the same experiences.