[Les Viegas]

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 around. Two new treatments that have been announced are the monoclonal antibodies offered by Merck and Pfizer; however they do have serious interactions with some of drugs taken by lung transplant patients so you need to be careful and consult with your doctors. The third most promising treatment available is EvoSheld ( AstraZeneca) which is available in very limited supply and is being offered to immunocompromised patients who have had the 3 vaccine shots and have not had Covid previously. You also need to have an antibody test to prove that you have no antibodies. This drug which is given as 2 shots protects transplant patients for a period of 6 months from getting Covid and can be repeated every six months.

So, if you believe you qualify, you should consult with your doctor on how you can get on this program. I have done so and am listed at the University of Michigan Health System as well as Cleveland Clinic and I would encourage you to do so.

Any questions, please do not hesitate to contact me for further detail.

Les

[Les Viegas]

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 to try it out – you have nothing to lose.
Les

[Les Viegas]

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

[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.

[Les Viegas]

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 article:

https://apnews.com/article/organ-transplants-coronavirus-pandemic-e6a3ad119cabf5cd8561ef23f1105448

Separately I also heard from Cleveland Clinic two weeks ago that of 55 of their IPF transplant patients that got the COVID-19 virus, 35% didn’t survive and many of the surviving patients got IPF in their transplanted lungs.

Just some information to guide your strategy for taking extra precautions.

Stay safe!

Les

[Les Viegas]

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 of experts who have treated thousands of IPF in general or lung transplant patients in particular especially if the primary concern is the efficacy of medications that affect the liver or kidneys and given the well known fact that alcohol does have a variable effect on the liver.

[Les Viegas]

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 the liver enzymes (ALT, AST, Bilirubin, etc) increase beyond acceptable ranges, those drugs may have to be discontinued or dosages decreased to the point where they become ineffective.

Therefore, if any IPF patient is interested in drinking a glass of wine ( not hard alcohol) occasionally, it should not be a problem as long as the liver enzymes are tested routinely and before it gets to a point of no return. As my lung transplant pulmonologist told me several years ago: “you are not going to live forever, so enjoy life, drink wine occasionally, but DO NOT overdo it!” and I have followed her advice religiously for the past 7 years. SO far there has been no impact to my liver enzymes or kidneys.

Hope this information helps.

Les

[Les Viegas]

@kathleenc

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 IPF and not NSPF. I had U of M send the lung biopsy tissue samples to National Jewish Health and their pathologists confirmed that they were confident that my IPF was correctly diagnosed by U of M.

As a general practice, if the biopsy is done at a reputable health center and the tissues examined by a well credentialed pathologist, there should be little reason to doubt the findings and conclusions since properly done biopsies are the gold standard for diagnosing such diseases. Such biopsies however do sometimes lead to some skin tissue scarring if not done properly which may impact on which side surgery may have to be done for a transplant later on.

Do not hesitate to ask me any additional questions you may have on this topic.

Les

[Les Viegas]

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 that your condition may not be diagnosed correctly or that the prescribed solution may not be appropriate for your situation, it is well worth the time, expense and effort to get a second opinion from an expert.

I am fortunate to have consulted with local pulmonologists at the University of Michigan Health System, Dr. Kevin Brown at the National Jewish Health, Dr. Marie Budev at the Cleveland Clinic and Dr. John Reynolds at the Duke Health System and am very familiar with what each of those institutions have to offer. As a frame of reference, I did get a lung transplant at Cleveland Clinic seven years ago.

If you have been diagnosed with IPF by a pulmonologist with the appropriate pulmonary function tests, CAT Scans and biposy if necessary, then your interest should be to confirm a line of treatment that is appropriate for your condition. You could visit any of the heath centers you have mentioned and feel confident that you will be taking the most appropriate treatment for your condition. You will need to be examined periodically by your treating pulmonologist so proximity to the treating center would be an important criteria.

If your condition warrants a lung transplant (which I doubt based on your 6 weeks old diagnosis), then my recommendation would be to consult with a center like Cleveland Clinic which has a lot of experience with lung transplants – or Duke depending on where you reside.

I would be happy to provide a lot more detail about each center for your consideration – if interested please let me know.

Best wishes,

Les Viegas

[Les Viegas]

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 provide tx patients with the initial supply of meds and leave it up to the patients to decide where to get their meds from upon discharge. Avela is also a specialty pharma so you could consider them as your supplier for all your meds. Other options include Express Scripts, Walgreens both of which offer mail-order services.

[Les Viegas]

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 benefit, you should fill your prescriptions through a Specialty Pharmacy and not a retail pharmacy. The reason is that the specialty pharmacies are knowledgeable in the rules for filing Master Medical claims wiht Medicare. You will still need to get the rest of your prescriptions from a retail pharmacy and be subjected to the usual “donut” hole, etc copay provisions if you have enrolled in Part D. And some of those plans are available for around $ 35/month excluding copays.

If this terminology is confusing, I would be happy to discuss it in detail at your convenience.

Best wishes for a successful transplant.

Les

[Les Viegas]

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 matter of weighing the risks against the benefits. The lower the dosage, the lower the risks. I have been on a 5-10 mg dose for the past 10 years and know first hand the side effects I have to manage, but it has been worth it to me to live a very productive life post-transplant at 78 yrs driving fast sports cars and spending winters on the beach in Florida. So, do not let these risks scare you but be sure to understand what they are and learn to monitor and manage them very carefully.

Les

[Les Viegas]

@bobbie

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 technician has to prepare the samples for review by the pathologist who may have a backlog of samples to review. The findings have to be recorded and then reviewed by a senior pathologist who confirms the conclusions of the first pathologist (checks and balances to prevent flawed diagnosis and resulting liability). These results are then sent to the pulmonologist who ordered the biopsy who has to set aside some time for desk work to review various results for a variety of patients. It’s only then that the pulmonologist typically contacts you to convey the findings and layout the recommended treatment options. I know that the length of time can be very frustrating, but hospitals typically perform many biopsies and have to follow a process since there are so many players involved.

As for a second biopsy, I would seriously caution against the need for another biopsy. They can be high-risk procedures and can lead to scar tissues that can affect lung transplantation surgeries. My recommendation to you is to get a second opinion from a center that does a lot of IPF work. Have you been told the reason why the first biopsy didn’t provide the needed information and why do they believe that the second one will be different?

You mention that your O2 levels drop down to 50 lpm. That is a dangerous level to drop to and can result in serious damage to a number of your organs in addition to causing pulmonary hypertension which may make you ineligible for lung transplantation.

You mentioned the biopsy being done to ILD and RLD – I believe that ILD is just a sub-set of RLD . Not sure why they wanted to learn more about it.

Again, I hope you get a quick resolution of your diagnosis so you can get some urgent relief.

Les Viegas

 

 

 

[Les Viegas]

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.

[Les Viegas]

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 report that I am living a vibrant  full life at 80 years in sunny Florida with a fully functioning 9 year old single lung transplant that is well cared for by the experts at Cleveland Clinic. Bottom line – unlike in 2009, you have many options to choose from today and please keep the faith. Best wishes.

Les

[Les Viegas]

@mjdanny

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 not an issue, then you can be evaluated in as many centers as you choose. Post-transplant logistics need to be factored in your selection of centers.

Does Medicare Part C cover the cost of multiple evaluations?
Medicare Part C (aka Medicare Advantage) is what is referred to as a “networked” product – that means your insurance carrier has contracted with a group of facilities to provide certain services for an agreed-upon fee schedule that is typically lower than the rates Medicare pays in its contracts with the same facilities. By limiting the number of facilities that the carrier sends its patients to, it increases the volume sent to those facilities and is able to get reduced rates in return. The smaller the network, the higher the volume, the lower the rates paid by the carrier and hence the lower the premiums charged to insureds. The implication of this product strategy is that you are limited in which facilities you can go to if you want your insurance company to cover most of the cost. This is particularly the case if you are considering out-of-state facilities since Medicare Part C typically doesn’t cover out of state services except in case of emergencies. This is the reason why you had heard that Medicare C doesn’t cover multiple state evaluations.

Medicare Part B however is what is referred to as a “Fee-for-Service” product for which Medicare has direct contracts with most of the hospitals in the country and therefore you are not limited in how many facilities you can be seen in and where. And if you have “Supplemental” coverage that has zero copays, you can visit as many physicians and hospitals as you choose at no cost to you other than an initial deductible. Unlike the Medicare C product described above, in the case of Medicare Part B, you will also need to buy a drug plan ( Medicare Part D) which can be done inexpensively.

If you anticipate you will end up getting a transplant at an out-of-state facility, then I would advise you to consider getting Medicare Part B & D before the enrollment window closes.

If you need clarification of what I have described above, please do not hesitate to email me at [email protected].

Wish you success in your transplant journey.

Les