Tagged: evaluation, IPF, lung disease, lung transplant, PF
- This topic has 19 replies, 11 voices, and was last updated 2 years, 3 months ago by Mark Koziol.
June 21, 2019 at 3:37 pm #19778
As many of us know, a lung transplant is most likely the only option to extend one’s life when they are diagnosed with pulmonary fibrosis (PF). The lung transplant evaluation and consideration process is gruelling to endure for both patients and their caregivers; from the initial steps in the evaluation process through to post-transplant recovery and care. For those who do not live close to a transplant center, the process for choosing a hospital to perform this surgery can add anxiety to an already stressful situation. The patient has to think about the city where they plan to have the transplant. You have to look at the standard of living in that particular area, including costs. Most centers require a post operative lung transplant patient to stay in the vicinity of the transplant center for at least 3 months.
There is one organization where patients can compare transplant centers based on their survival rates. The Scientific Registry of Transplant Recipients (SRTR) is a government funded organization whose responsibility is to analyze data of all solid organ transplantation in the United States. Data collected is used by researchers, patients, and medical professionals. The site offers a frequently asked questions tab for patients and donors. I encourage all persons who are pondering a lung transplant in the future, who are in the evaluation stage of a lung transplant, and those who have had a lung transplant to see what the SRTR site has to offer.
How did you or will you make your decision on where you will be evaluated for a lung transplant?
Do you have any other tips/ideas to share?
October 5, 2019 at 12:33 pm #21554
Having just been turned down by Mass General at only 72 and led to believe I was a good candidate.
Where to go from here.
I have been in touch with Mark Koziol who gave me some advice and my Primary care doctor who is excellent is trying to help and told me that it often comes down to your local support system. Others have mentioned some hospital don’t want to upset their numbers and others are trying to build their reputation.
So many things to consider.
I live in Rhode Island und would be grateful for any input.
What is considered a clear definition of support system, for those who have been through this
October 5, 2019 at 3:16 pm #21556
Hello Pamela, basically your support is defined as your caregivers. Most centers require your caregiver resides with you. You should also have others to assist your primary caregiver if the need arises. My primary caregiver was my wife. I have a sister and mother in law in the immediate area who were available at any moment. I have two other sisters who would have flown home if needed as well. I also listed 30 other friends who were able to stay with me. My wife took off 3 months from work to provide care. Friends would come over and sit with me while my wife ran errands or whatever. Fortunately I didn’t have any complications and had a better than average recovery from the surgery. I am also fortunate to have so many people who were willing to be there for me especially when I read about PF sufferers who sometimes are disengaged from their family and friendships. Everyone’s support system is different but I have known several who have been denied because of a lack of immediate and secondary support.
October 5, 2019 at 3:25 pm #21557CynthiaParticipant
Hi Pamela. I assume you’ve looked into Brigham and Women’s in Boston. I’ll be 72 next month and am considering starting the process at either B&W or Mass General. Did they put you through a lot of tests before telling you you weren’t eligible? That’s what I’m dreading. Can I ask what they decided made you ineligible? Only if you’re comfortable discussing it. I know centers that do bigger numbers take more “at risk” patients (like Cleveland), but I don’t know how I move to a city where I don’t friends and family.
October 5, 2019 at 3:27 pm #21558CynthiaParticipant
Also, I live in RI too, and go to a support group the the third Thursday of the month in East Providence. Let me know if you’re interested in that. There are people there who are also pursuing transplants.
October 10, 2019 at 1:57 pm #21617
Hello Cynthia, Mass General said age was the reason which is why I am so disappointed. 2 years ago I was told I was a good candidate as there is nothing else wrong with me, no meds, not overweight, not diabetic.Never smoke, don’t drink.
They work together with Brigham and Women’s and checked with them but have offered up no further suggestions.
I am looking at Temple in PA as their program is excellent and I have made contact with 2 men who have recently had transplants. One was very sick with many complications.
My records are transferred so hopefully next week I will be contacted for an appointment.
Keep pushing, be persistent.
October 9, 2019 at 7:07 pm #21600Les VParticipant
( @pamelagreen )
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.
October 10, 2019 at 11:31 am #21616
Hello Les V
Thank you so much for all that valuable information. It’s a lot to digest so give me a few days and I will contact you by e-mail.
I have just had all my records from Mass General anomy primary care doctor mailed to Temple and by Monday hope to have date for evaluation.
I was not aware one could apply at more than one centre ( should have made more copies of everything)
That’s were I am right now and I feel to be moving forward after the disappointment of Mass General saying I was a good candidate for 2 years and all of a sudden dealing to pursue the evaluation.
I will be in touch.
October 15, 2019 at 4:26 pm #21638Daryl LongParticipant
I just saw your posting, and I would have responded earlier, but I’m still rceovering from my own transplant. (5 weeks ago)
I as in EXACTLY the same situation as you: 72 years old and turned down by both MGH and Brigham and Womens’. Without going into too much detail, there was a gastric concern that both hospitals did not want to deal with. They both sent me away with no guidance as to where to try next. Knowing that I would need a support system where ever I went, I had few options. Fortunately, I had grown in theAnnapolis rea and still ha lifelong friends who would host my recovery. My BIDMC pulmonologist sent my MGH records to Johns Hopkins, who welcomed me for evaluaton. It turns out they have, in addition to a world class transplant surgeon, a very capable team of gastric resources. The looked at the MGH tests, ran a few test of their own, and I got listed. Because I was consuming 12L/min while walking slowly, I received a lung fairly quickly. The experience, so far, has been far better than I could have imagined.
The director of the transplant program is Dr Pali Shah 410-614-4898; but you would want your doctor to make the first contact. Please let me know if you want to pursue this. I’ll be staying in Annapolis thru December, returning to Mass in January, and I can give you more detail about the program, living in Annapolis, etc, should you desire it.
The bottom line, to me, is that each hospital, regardless of their overall rating, will have different capabilities in areas related to a transplant. So, don’t be discourages if a high-profile hospital won’t take your case. I wish that I could offer you the name of a clearing house for hospital specialties, but I haven’t found one yet. Your email inspires me to look harder for one.
Five weeks out, I’ve still got a long way to go, but I’ve never regretted my decision.
Please feel free to contact me, if I can help.
October 16, 2019 at 7:40 am #21645
Daryl, So good to hear from you and glad to hear that you are doing so well.
My dilemma right now is that although they will evaluate me at Temple. They do not take my Supplemental United health
care, so now I am stumped as to what to do. I have had it for 6 years and have never not had it accepted.
It’s like pulling teeth trying to get hold of anyone to discuss this as we are in the middle of enrollment season
October 16, 2019 at 8:15 am #21646Les VParticipant
( @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.
October 16, 2019 at 8:47 am #21647
Thank you Les.
October 17, 2019 at 9:04 am #21658Peggy McBrideParticipant
My husband was turned down at Barnes Jewish Hospital in St. Louis because of cardiac issues-he needed stents. He was turned down at UC San Diego because of his age, 68. He was excepted at St. Joseph’s Hospital in Phoenix which has an excellent track record and there’s a high-volume lung transplant center. They inserted the needed stents in both the heart and carotid artery. They performed a multitude of other tests over an approximate six-month. After he was all clear with respect to any other medical issues, he was evaluated by the Transplant committee and accepted on a Friday. He received his transplant eight days later, on Saturday. We are five days post surgery now and he is recovering beautifully. They expect to move him out of intensive care today. He was sitting up the first day and walking the second day. Yesterday he walked four laps around the wing with no oxygen. It is miraculous. I would urge anyone to consider St. Joseph’s Hospital. The people are incredibly kind and very efficient and competent. We could not be more pleased.
October 17, 2019 at 9:11 am #21659
Hello Peggy, very happy to hear your husband is doing well. I’m glad you two were persistent in your pursuit of a transplant. It is amazing what can happen when a transplant is successful. Thank you for updating our forum members and especially showing what can happen when you don’t take no for answer. Best wishes, Mark.
October 21, 2019 at 9:53 pm #21695Bill RootParticipant
( @peggym )
I read your post this morning, glade your husband had such a great experience with St. Josephs.
I too was turned down by UCSD. [stents in carotid artery]
Have appt @ St. Joes 11/11/19. Would you be willing to answer a few question’s. my email [email protected]
If this request is in anyway inappropriate plz disregard.
thank you in advance
December 22, 2020 at 5:19 pm #26601Anonymous
I am also looking at transplant centers but live in Montana. I doctor in Seattle but I have to be on their list by age 70 and I am 5mos from that. So next am looking at St Joe’s in Phoenix. Low elevation and looks like good results there. (Lower than my 4800 feet). Have friends there and an ex if I need to list secondary care givers . My question is whether you can be evaluated at 2places? Thought you could not for insurance reasons. Also someone said they probably only had part c Medicare so that is why they were not accepted. What does that mean? Any responses who be helpful mj
December 23, 2020 at 7:50 am #26608
Hi Mary Jo and Charlene, you can be evaluated at multiple centers and be listed at multiple centers. Most centers do have a range of nautical miles you can be from the center. The mileage is usually 1000 nautical miles, please keep that in mind when looking at centers. Sometimes this info is on their website or you can call and someone should be able to answer your specific questions. Some transplant centers will try and complete their evaluations over a several week period. This could depend on the severity of your case or their protocol. If this is the case you could go through eval at one center and depending on the centers collaboration with other institutions they maybe able to use some of your results for both evaluations. Please ask a transplant team member about this. If you have any more questions, please ask and hopefully I can answer. Take care, mark.
December 24, 2020 at 6:57 am #26618Les ViegasParticipant
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.
December 22, 2020 at 9:28 pm #26605Charlene MarshallKeymaster
Hi Mary Jo,
Thanks so much for writing.
I am not American, so I can’t give this answer with certainty but I am confident I’ve heard of patients being assessed at multiple centers for transplant. This might be something @mark-koziol can speak to a bit more, but I’m sure I’ve heard stories of patients being evaluated at multiple centers, just perhaps not at the same time?
February 21, 2021 at 1:00 pm #27416Bobbie BrownParticipant
I am forever grateful for this forum. I am sitting in the hospital not even 1 year into my diagnosis of my ILD and I am most assuredly facing lung transplant, as all the doctors who have seen me at my latest admittance (I was admitted Monday and it is now Sunday) have mentioned that it is the next step, an inpatient referral for a lung transplant. I am 41 and live in West Virginia. I am currently researching my best options, even without the referral as of yet (is this premature, or smart, am I driving myself crazy, I don’t know). I just know I am thankful for this forum as a place to learn and reach out for help.
February 21, 2021 at 6:00 pm #27426
Hello Bobbie, I don’t know where in WV you reside but you are in driving distance from two highly regarded lung transplant centers; UPMC in Pittsburgh and the Cleveland Clinic where I had my transplant. Please ask fir the referral because you have a window to get the transplant, and you want to be relatively healthy when going through the evaluation process. Please review my original post on this topic. Have a great rest of the day and I hope you feel better soon. Mark
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