MemberMay 30, 2019 at 11:28 am
When researching lung transplant centers I found the Scientific Registry of Transplant Recipients web site to be very helpful. It provides data about historical transplant volume, success rates at varying time intervals, wait lists, etc. the data available now is for 2017 and prior, so I like to think that current results may be even better. Mass General has some really impressive statistics. URL is https://www.srtr.org/transplant-centers/?&organ=lung&recipientType=adult&sort=volume. My best wishes for everyone navigating this terrible disease. My husband is 68; he has been evaluated at two centers; one turned him down due to cardiac issues but the second one has worked with us on how to improve these issues (heart stents, medication) and they will re-do one of the key tests to see if now he can be accepted. We should find out within the month.
Biggest issues for him are fatigue, lack of stamina, inability to live life the way he used to (go for walks, travel, wood working) terrible cough that causes awful lung pain, lots of other pain due to botched hip replacement surgery (where he caught hospital-acquired pneumonia leading to major exacerbation) and sleep deprivation. HOWEVER, he keeps going, grinding my coffee every night and bringing me a cup in the morning, and walking with our doggie as much as he can.
Thank you for this forum. I am a regular reader! Charlene, you are wonderful; always caring, considerate and tactful!
MemberMay 30, 2019 at 1:16 pm
Wow, thank you so much for sharing this, I actually had no idea it existed! @justme0956 (Paula), did you see this? So glad Mass General has such great outcomes/results and that you’re in good hands my friend. You are so kind in sharing the results of your research Peggy, thank you! Please keep us posted on how your husband makes out and the answer from the second transplant centre. Sending so much strength and love your way for good news! Sounds like he is an amazing man, and I hope he gets through the transplant process so he can go back to doing the things he loves. I know how painful it is to have IPF steal these things out from under you…
So glad you’re part of our forums community Peggy, it really is a special place. Your kind words have made my day, thank you. It was a rough start to the morning due to secondhand smoke inhalation from people not following the rules, then my feeling guilty for addressing it. Your kind words brought me back to a better mind space, thank you for that. Hugs to you!
MemberMay 31, 2019 at 9:04 am
I have completed the evaluation at MGH. I am too stable to be listed. I am 72 and, although I have been told you age out at B&W @ 70, this is not so at MGH. I met 2 weeks ago with Dr. Todd Astor at MGH who ordered a stress test as an update to my cardiac situation (stent placed in 2013) and the results I am told were unremarkable. So, I go back in November for my 6 month evaluation to see if I can be listed. He did say that age figures more into the equation as you get older. I have a friend in Plymouth and fellow rehabber at CCH who had a double done in 2017 at 74 and is doing very well. (Dr. Astor told me of an 81 year old they had done a couple of years ago). He has had some kidney problems and that is being addressed by MGH but he is back on the golf course and he tells me his game is very rusty. Great folks at MGH and although the process of evaluation is lengthy and strenuous, it is worth it especially if they think you are a candidate. If not, you know exactly where you stand. Stay with it Paula; those guys are terrific!
MemberMay 31, 2019 at 10:39 am
Thank you so much, Robert, for that information. I’ll certainly be requesting an evaluation there at some point. I loved hearing about that 74-year-old who is back on the golf course.
MemberMay 31, 2019 at 12:41 pm
Thanks so much for your thoughts on this topic thread, I know others will benefit from hearing about your experience! So glad to hear of the individual who is back on the golf course too, amazing! Transplant can give so many amazing days to people who otherwise were very limited in their abilities. Glad you’re happy with your care at MGH, they sounds like a great facility. Wishing you well Robert, please keep in touch about your results this coming fall/winter. Sending goodluck to you!
MemberMay 31, 2019 at 5:12 pm
Hi Robert I just had my cardio cath @ MGH today no stents needed. A cat scan reported that beside that the fibrosis in the right lung the also noted something in the left that is most in likely the fibrosis, but there is a small change its the early stages of lung cancer. Suggest another CT is done in 6 months.
I will be meeting up with Dr, V near the end of July. Fingers crossed that they accept me, I do like the team there.
MemberMay 31, 2019 at 6:17 pm
I was told from a case manager that live expectancy from lung transplant is from 2-5 years. What does anyone that had a transplant know about this?
MemberJune 1, 2019 at 2:45 am
My cousin is in year 7 post transplant. Another friend is at 4 years and she has a friend who is at close to 20 years.
The case manager is giving you the national average. A lot of factors go into how long you live after the transplant.
At a recent meeting with the transplant group they were talking about a guy who was 17 years post op before he died but his death was not from his lungs. He had followed their post opt rules to a tee, thus he was very healthy with virtually no post op problems.
MemberJune 1, 2019 at 6:51 am
Hello Linda, I honestly do not know where your case manager got those stats from. I know at least 20 people who are more than 5 years out from receiving a transplant. Your life expectancy does decrease with each passing year. If you go to srtr.org they list the life expectancies for each transplant center. A transplant centers website usually lists their survival rate as well. As for as rules go, again you can go any transplant centers website and they will state them for you.
MemberJune 1, 2019 at 4:40 am
What are the post op rules?
MemberJune 1, 2019 at 4:48 am
I am only aware of what they (Mass General Hospital) has told me so far. They are very rigid which probably explains their higher than national success rate.
Not sure what hospital your working with, but I am sure they will let you know what their rules are.
MemberFebruary 13, 2020 at 8:00 am
Hi everyone. I would like to know how much is the financial cost for a lung transplant?
MemberFebruary 13, 2020 at 1:25 pm
That is a tough general question. For my particular situation:
I am 4 years into my lung transplant. I lived in New Mexico and had the xplant at St Joe’s in Phoenix AZ. I had pretty good insurance through Presbyterian Health in New Mexico.
There was the requirement I live in Phoenix for a minimum of 12 weeks with no major complications after the operation.
I moved into a condo across the street from the hospital (4 months rent $10K)
I had one ER visit while in Phoenix during the transplant workup testing. ($1K)
The transplant meds probably ran 2K+ the 1st year ($2K)
I’m pretty sure I hit my insurance out of pocket max ($4.5K)
While in New Mexico I had to return to Phoenix for regular Lung Transplant Clinic Visits (PFT, xray, blood test, Dr visit). It seemed like I traveled at least 5-6 times in the 1st year. Travel, hotel, food for my wife and I ($3K)
When I went back to New Mexico I had to upgrade my Air Conditioning, the swamp cooler was frowned upon, and my well water was not going to cut it so I had to put in refrigerated air conditioning and a reverse osmosis system. ($18K)
Indirect costs were my wife wife lost a couple of months of work while we were in Phoenix, my battery died in my truck because you are not allowed to drive with a cut chest.
My out of pocket for the 1st year was ~$38,500. I recall it being a alot. I was able to deduct medical expenses that year.
Since then I usually spend $2K on meds and do not hit my out of pocket max on insurance $4.5K.
Your situation may be completely different due to your insurance, where you live, you home’s cooling and water.
MemberFebruary 13, 2020 at 1:50 pm
Hello Luis, this question will based on the patients insurance coverage and how close they reside to the facility. I had no out of pocket expenses for my hospital stay. My insurance covered 100%. The only time I have to pay is when I see a doctor for appointment. My meds average out to be $30-$50 a month. I live in the city where I had my transplant so I didn’t have to move close to the transplant center. My wife did stay at the connecting hotel at the Cleveland Clinic-Intercontinental Hotel for 4 nights to make it easier on her. I am very lucky to not have extra expenses with the transplant. I feel very grateful for the gift I received.
MemberFebruary 13, 2020 at 1:54 pm
Hello David, thank you for sharing your detailed expenses. Our members will be able to use this as somewhat of a guide if they have to relocate for a couple months while they recover from the transplant surgery. I hope you are doing well. Take care, Mark.
MemberFebruary 13, 2020 at 2:01 pm
This question also bothers me and maybe for some reasons others don’t have. I am a 69-year-old widow, living alone. I have two daughters who live in the same town as I do and they are quite positive that a transplant would be a done deal for me if it comes to that. The idea of finding two caregivers should a transplant be deemed doable strikes me as impossible. Moving closer to the hospital, which would be a move from VA to NC/Duke seems financially impossible. How could my daughters become my caregivers when they have their own jobs and responsibilities? One of my daughters is married with a grown son. The other is a single mom with a grown daughter. Neither of them could afford to take an unknown period of time away from home/work to be with me. There is really no one else as most of my family is already dead and my remaining brother has mental health issues that make that impossible. I don’t “want” to die any more than the next person, but is there really any other solution? I am grateful that so far I seem to be stable. I have both IPF and emphysema, so who knows how that will progress. I am staying positive but wonder how to make my children see this from my perspective. Sorry to be long-winded, but this forum offers so much help that doesn’t seem available anywhere else. Karen
MemberFebruary 13, 2020 at 2:24 pm
Hello Karen, I am very sorry to hear the sadness in your comment. If your daughters are adamant about you receiving a transplant I feel there should be a long discussion. The support from your daughters could be split up. Companies are required to offer FMLA to their employees. Are you part of a church or social club? The members could help when you return home. Friends can also help. I have my wife but we also listed 30 others; family and friends who could offer support. Thankfully, I had an easy and uncomplicated recovery. The relocation does not have to necessarily be for the maximum amount of time. Some patients are released from the relocation 6-8 weeks after transplant. A major part of transplant recovery has to do with what you did pre-transplant; pulmonary rehab, lifting weights, walking. Anything physical you do will help you in your recovery. My hope is you remain stable for many, many years to come. The transplant talk will all be moot. So, Karen put a smile on that face and live your life. Take care, Mark.
MemberFebruary 13, 2020 at 3:51 pm
I was recently evaluated at Jewish Hospital in Louisville after losing 90 lbs within 7 mos. I had thought about the financial cost (will my insurance cover the medical expenses) and learned they would but I would have a $5k catastrophic limit to reach but this is a small amount as compared to the actual evaluation $48k and transplant cost (est. To run $700k to $760k). The housing cost to remain nearby post surgery/early recovery may be covered as well but that is a decision left for later as I learned that I would be listed but not for another 2 to perhaps 3 yrs as I was still too healthy for immediate listing. But at least I qualified! While the listing pending status was a surprise, it was not entirely unwelcome.
Now I am putting money aside for my recuperation when I will have to pay for most (if not all) of my in home care. My mother is 90 and only a niece and several extended family members are available to assist and they are all at least an hour away with their own lives to live. In addition, I am new to the area and have not met many people to establish new friendships and my old friends are far away. But all that being said, at 62 yrs old I have chosen life and to go theu whatever I must to have the chance to have a healthy future, if that is at all a possibility. And I am grateful to have any chance at all of achieving that future. Esbriet has helped as has diet and exercise with a strong positive attitude. My faith sustains me whole I try to plan for my future needs as best I can. In the meantime, I enjoy each day and celebrate each moment and thank God for the support he has sent my way. I would say it is a very personal journey of self discovery and realization. I wish everyone the peace of mind that comes with acceptance and the strength and stamina to fight for what they want. It has been two years since my dx and I am stable at 5 lpm. Charlene thank you for your leadership and support thru this forum and I wish everyone the best always. Looking forward to reading more interesting and informative posts in the days to come.
MemberFebruary 13, 2020 at 5:29 pm
Thank you for the answers to my question, I am grateful for the attention you take to answer. They are all very kind.
MemberFebruary 14, 2020 at 8:43 am
Hello Mark. Thank you for your reply. You have brought up things I hadn’t thought of, particularly the FMLA time. I am not unhappy, really, only trying to be practical. As always, hearing from you and others in this forum has given me food for thought. I also hope to be stable for many more years. None of us know what the future holds, but I will listen with a more open mind. Thanks for your response. 🙂 Karen
MemberFebruary 14, 2020 at 9:11 am
Hello Karen, I’m glad I could be of help. Happy Valentine’s Day to you. Take care, mark.
MemberFebruary 14, 2020 at 3:57 pm
Happy Valentine’s Day to you, too! Karen
MemberMarch 5, 2020 at 10:47 am
Hello all, just re-read all these…. I have had a serious downturn, and my pulmonologist is currently working on a transplant referral. Based on the SRTR info, I am looking at Shands in Gainesville FL as a first option. Vanderbilt would be next on the list. My largest potential issue is the pre/post support, as my GF of 12 years (I am widowed) has a special needs child and would not be able to move or travel with me to any transplant center. I also have 5 stents, but have been cardiac stable since 2003. Any ideas on hiring perhaps a nursing student, or alternatives to having a family member as the support person? Diagnosed in January 2018, starting O2 today…. This is seeming very daunting right now.
MemberMarch 5, 2020 at 12:41 pm
Hello Stephen, sorry to hear about your current situation but at least you are getting evaluated for transplant. There is a small window patients to get this done. Most centers will let you have a family member be your main support person. They do frown upon having a paid support person. Goof luck and take care, Mark.
MemberMarch 5, 2020 at 2:53 pm
I pick up where I left off on May 31 (see above). I went back in November and the opinion was that I was a prime candidate for listing at MGH. However, I had to go through the testing process all over again from FVT to cardiac catherterization. I have now completed everything. They pulled me off the Esbriet and it needs to flush out of my system (2 weeks) and I will then be listed. I am looking forward to the surgery and recovery✝️? because the alternative is of no interest to me at this time. I’m on O2 just about 100% and breathlessness is severe so I hope the wait won’t be too long. I live about 1.5 hours from MGH with in-law relatives in the Boston area. My caregiver is my wife, an angel; I don’t know what I would do without her. My caregiver team is rounded out by my brother and sister here on the Cape. My daughters have told me they will be flying in as well (“no arguments Dad”). Because of the frank and straightforward discussions with all the professionals at MGH, most of my fears or concerns have been assuaged. I am ready to go. If you are considering this option (I don’t think at this stage there are many others) talk to the transplant team at your hospital, ask a thousand questions and then a thousand more. If they are anything like “my team” you’ll feel more confident and hopeful in whatever decision you make. I will keep you posted. Good luck!?
MemberMarch 5, 2020 at 3:16 pm
Good luck, Robert. Sounds like you have a great support system there and MGH is first rate. (My pulmonologist came from there last year, and I think the world of him.) Keep us posted.
MemberMarch 5, 2020 at 3:22 pm
Hello Robert, keep your positive attitude. I am glad you are having positive interaction with your transplant team. In my opinion it goes a long way on the outlook of your future outlook. Keep being active and work those leg muscles. This will help tremendously in your recovery. Best wishes, mark.
MemberMarch 5, 2020 at 4:05 pm
I’m coming on 4 years with a Double Lung Transplant. My wife was/is my primary caregiver, pre and post transplant. I had the xplant at St Joes in Phoenix but lived in Albuquerque at the time.
We saw two xplant patients that did not have one fulltime caregiver:
Patient 1 – P1 was from out of town, and used his two sister to tag team his care together while required to stay in Phoenix (Minimum 12 weeks). He did OK with that setup, and went home to Albuquerque eventually. It was longer than 12 weeks, I do not remember the details. He died of skin cancer 4-5 years after his xplant.
Patient 2 – Fewer details, on P2. He lived in the same condo complex as my wife and I in Phoenix during the 12 week minimum stay. He was paying for a caregiver at the start of his post transplant care. He was quite unmotivated to exercise/work at getting better after the surgery. My wife talked to the caregiver several times. I’m remembering that the caregiver did not last the whole 12 weeks.
Note: Each transplant recovery that we know about was very different, 12 weeks was the minimum stay after the surgery, but that was with no major complications. My original hospital stay after surgery was 10 days, but I was readmitted two more times in the 12 weeks after I was released.
The 1st 8 weeks of my recovery was very busy, I needed real caregiver help. I did not have any strength and stamina, could not drive a car, and there were meds and injections that I did at home that required an intelligent caregiver, I was put on a liquid only diet, I felt awful…
I’m told that the caregiver is a big deal at St Joe’s now. Maybe it was 4 years ago, but not a problem for my particular situation.
As I reread this post, I sound negative. I do not mean to be, but I wanted to give as realistic a version of the post transplant recovery as I can. There were several times in the 1st 12 weeks that I needed more than just help. I questioned if this was a good decision, if I would ever feel better, if I would actually get to leave after 12 weeks. Those were the times when my caregiver needed to be more than paid help. Just my story, I’m sure there are others that are very different.
On the bright side, since the transplant, I just returned from a week on Aruba with my caregiver, I saw my son and daughter graduate college. So, life goes on…
MemberMarch 5, 2020 at 4:41 pm
Hello David, thanks for sharing your transplant recovery experience. It’s great you are doing well. Every person has their own experience and I am glad yours ended on a positive note. Some people take longer to fully recover while some are raring to go as soon as they wake up. I’m sure you had a great time in the tropics and happy you have been able to Be a part of some milestones. Take care, mark.
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