[Les V]

( @pamelagreen )

Pamela, the likely reason your United Health Insurance is not accepted by Temple is because you have Medicare Part C rather than Parts A/B .  Part C involves “network” products unlike Parts A/B which are Fee-For-Service products with standard benefits that all supplemental carriers must offer and which are not negotiated for rates.

[Les V]

( @pamelagreen )

 

Hello Pamela,

I’m sorry to hear about your predicament. I am a 76 yr old Michigan resident who was diagnosed with IPF over nine years ago .I  received a single lung transplant from Cleveland Clinic  6 years ago and am living a very productive and enjoyable life with no rejections or co-morbidity to-date. Having been through what you are going through myself, I believe my experience may be of help to you.

During my search for a transplant center, I was told that I was ineligible for a lung transplant at the University of Michigan Hospitals because, at 70 years old, I was way over their cut-off age of 63 years. This was despite the fact that I had no co-morbidities and was physically fit except for my deteriorating lung functionality. Not one to give up a fight, I was determined to find a center that would accept my case, so I researched every aspect of lung transplant centers using the UNOS database and visiting the doctors at the # 1 Pulmonology Center in the US (National Jewish Health)  and came to the following conclusions:

1. In medicine, it is a well know fact that  the best outcome facilities are the ones who do the largest volumes in a particular disease category because they have experience dealing with numerous outliers and are equipped to handle rare complications that can arise especially with transplants.

2. In 2013, my analysis showed me that the three centers that did the largest number of lung transplants nationwide were:

a. University of Pittsburgh

b. Cleveland Clinic

c. Duke University

(I was listed at Cleveland Clinic and Duke University and ended up getting my transplant at Cleveland Clinic within    6 weeks of being listed).

3.  The success of tissue transplants is affected by many variables ( tissue match, blood type match, various types of acute and chronic rejections, condition of the door lung tissue, recipient co-morbidity, antibodies, adherence to drug regimen, management of drug side effects, condition of recipient’s critical organs such as kidneys and liver, etc, etc). Therefore, it is not surprising that lung transplant recipients stand to face several obstacles that must be dealt with by expert pulmonologists. And since lung transplant centers who do low volumes of transplants are vulnerable to proportionately larger impacts to their success rate scores of any mishaps and therefore their Medicare reimbursement rates, they tend to limit their patient selection to very healthy, younger candidates who naturally have a higher probability of successful outcomes.

4. Lung transplant centers require an atypical post surgery support operation that is costly to maintain and has a sizeable impact on the longevity  and success of their transplant cases. Not all centers can afford to maintain such an expensive operation without a large volume of patients to give them scale because adequate staffing levels are difficult to maintain given the randomness of the service “arrival” rates. For example, Cleveland Clinic offers the gold standard of post transplant care -they have a 24 hr post transplant center staffed by experienced nurses and pulmonologists who have to deal with thousands of their post transplant recipients and are able to do it very effectively and efficiently due to the scale of their operation. . This is a key criteria in selecting  a lung transplant center although the data is not available to prospective transplant patients to evaluate and therefore they  must rely on feedback from other transplant patients who have had successful experiences over an extended period of time and under a variety of health conditions.

5.  As for a patient’s post transplant care support system , it is vital that patients have such a support system available to care for the patient once they are discharged from the hospital. The best candidates for such a support team are immediate relatives (spouses, parents, adult children,etc) although close friends and professional care givers are a possibility if all else fails. The length of time and intensity of the support requirements varies with how well the patient recovers from the surgery and is able to tolerate the intense drug regimen. I have seen the duration range from a few weeks to several months .Some hospitals (e.g. Duke) require the primary caregiver (and the secondary caregiver) to sign contracts that assure their availability to provide the needed care giving services post transplantation. Most centers also require that the patient and care giver reside within close proximity (e.g. two hours of driving time) of the center for 2-3 months post transplantation and in some cases they offer subsidized housing close to their hospital complex.

6. Costs – Medicare eligible patients can get the transplant surgery fully paid for except for a small deductible at any hospital in the country if they have the right Supplemental Plan. And with the right Medicare Drug Plan their out of pocket costs are limited to the cost of the “donut” hole plus  minimal cost sharing amounts which works out to around $ 5,000/year.  The only other significant costs when considering out of area hospital centers are the costs of transportation, lodging and meals for staying in the vicinity of the hospital post transplant for 2-3 months and then returning to the hospital for periodic checkups and testing  – they are more frequent during the first year and then taper off to semi-annually for the remainder of one’s life.

Without knowing the specifics of your case, it is difficult to offer specific advice on how you could go about getting a successful lung transplant and all the considerations that go into making the right decision, but I am willing to discuss it with you and perhaps suggest a course of action based on my experience and knowledge of  several lung transplant centers. You can email me at [email protected] if  you are interested in discussing this further.

I wish you the well in your pursuit of a successful lung transplant.

Les

 

[Les V]

It’s so good to hear from several lung transplant recipients about their experiences – I will add mine to this thread in the hope that it too might encourage others who may be undecided :

I received a single lung transplant at Cleveland Clinic in Feb 2014 (at age 71) – I was also listed simultaneously at Duke University but switched to CC at the last minute and am glad I made the decision to switch. I can provide the reasons for any one who may be interested. I am 76 years old now and lead a near normal life with no co-morbidity, no travel restrictions, lift weights with a trainer 3 times/week, sleep 8 hours a day, spend winters by the Altantic Ocean in Florida and summers on a lake in Michigan, follow the usual diet restrictions listed in the original post by Mark, occasionally drink a glass or two of wine with dinner, take around 30 pills/day without having missed a dose in over 5 years and monitor my vital signs daily. I have access to the Cleveland CLinic’s very responsive post-transplant care center 24 hours a day and have been assured that they will arrange to fly a jet down to any part of the country to bring me back to Cleveland for intensive care if I experience a lung organ rejection. During my semi-annual check up at Cleveland Clinic, they advise me to keep doing whatever I’m doing because it is working perfectly. So far, I have had no acute or chronic rejections, nor any signs of major co-morbidity resulting from the side effects of the drugs I am on. In short, life is a lot better now than when I was in a wheelchair on 12-15 l of oxygen around the clock.

The bottom line is that IPF patients should at least explore the lung transplant alternative because, if successful life can be very enjoyable post transplant. I would be happy to answer any questions that pre-transplant patients might have from the viewpoint of someone who has had a very successful and rewarding experience.

Les

[Les V]

UV lights are very effective at eliminating air-borne bacteria and should be considered by anyone with pulmonary issues like IPF. HVAC contractors can install them. It also helps to have the air ducts cleaned out every few years because they are dust catchers and breeding ground for mold spores.