Les Viegas

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 the…[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 advice…[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 if…[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 had…[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 probability…[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 to…[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 this…[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 is…[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 ma…[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. The…[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.

Hi Charlene,
I thought I should share my experience as a highly successful lung transplant recipient with the members of this PF News website in the hope that it might benefit those who are considering lung transplantation as an option.

I was first diagnosed as having the IPF disease in 2011 at the age of 68 years by the pulmonologists at one…[Read more]