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My husband has been referred for lung transplantation and we are waiting for the call to schedule his initial appointment. I’m getting very anxious because he seems to be declining so precipitously and there doesn’t seem to be anything that can be done about it. For example, he completed a 6 minute walk test 3 weeks ago – now he can barely walk for 3 minutes before he needs to sit and his O2 sat is in the low 80s. I’m writing because one of the criteria for getting on this center’s waiting list is that you must be able to walk 900 feet in a 6 minute test. Well, he could do that a few weeks ago, but not now! I feel like his window of opportunity is slipping away because of this. This appears to be the only thing that may exclude him, though he did have cancer 13 years ago and has been in complete remisison since. He does have some CAD from a heart attack in 2007, but has recently had a full cardiac workup and everything is stable, his stents patent.
Can anyone speak to this – I’d love some reassurance that despite his recent declines, he still may be eligible to get on a transplant list.
thanks, Trish
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Hello Trish, I have been through the process. It’s good that your husband successfully completed his 6 minute walk. When I did my walk they increased my oxygen to 15 lpm. I had to stop but I still completed my requirements. My advice would be to make sure your husband stays as active as possible. The committee will look at if he participated or participates in a phase II or phase III pulmonary rehab program. I had problems with doing exercises standing up because my oxygen would decrease below 88%. I did all of my exercises sitting down. I worked out on my own at a gym as well. The workers there helped me with my oxygen and watched out for me. I would also suggest he exercises with weights to build up muscle he has probably lost during this battle he is in. It’s very important he builds his leg muscles up. Doing this may help him complete his walk and will definitely help him in his recovery from the transplant surgery. I worked out up until the day I received the call. On a side note; I know of many people who were either in a coma or bedridden when they received the call. Have faith, be compliant, and do not resched or cancel transplant appointments. This weighs heavily at many transplant centers. I’m always here if you have anymore questions. Take care, and push your husband as much as he can take. This will pay off in the end. Mark
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Thanks so much for the words of encouragement, Mark. I read your response to David and we appreciate the practical advice. David did recently complete a pulmonary rehab program, and while I can’t get him in the gym, he does walk in our home and works on an arm and leg peddler. I’m getting some weights to work on his arms as well. He is a model patient: compliant with all instructions, never cancels or is late for an appointment. I’m on intermittent FML at work (with a very understanding team) and attend all of his appointments. Thank you for being available for our questions and concerns. We’re trying to keep the faith :-)c
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Hello Nancy, there are some transplant centers who have a concrete set limit for age. There are others that will look at your overall mental and physical wellness. The transplant center I go to: Cleveland Clinic has done a single lung transplant for an 80 year old. They regularly do transplants for mid 70’s patients. Centers like your BMI below 30. I had to lose 80 pounds. 310-229 to get under the BMI level stated. Every center is different. I would suggest calling centers you are interested in to receive the information you will need in order to be listed. Take care, Mark.
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Hi Trish
After going through the eval process at 2 different transplant centers, I know the transplant criteria is different at different centers. I was evaluated at Univ of Colorado in Denver and St Joes/Dignity in Phoenix. I ended up at St Joes/Dignity in Phoenix in 2016.
Along the way, my wife and I have met many Lung Transplantees. One of our friends was denied at Duke University, and accepted at St Joes. Another person we met was denied at St Joes and accepted at Univ of Colorado. The wait times for lungs also varies greatly.
The St Joe’s program has become a monster, I believe they are the busiest lung transplant center in the US. I waited 4 days on their list over Memorial Day weekend 2016. Some of the people we’ve met have waited for months depending on their physical size and antibodies. Each person’s situation and insurance is different, but so are the different Lung Transplant Centers. I’m glad I ended up at St Joes in Phoenix, but the time leading up to the transplant and all the decisions you make can be stressful.
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@mark-koziol when did you have your transplant and at what age I live in AZ but can’t decide if I am too old and too over weight to have one any complications
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can you tell me the success rate. I am 75 yr old and want more years on this earth. I was stable for 10 years and last Feb I am sure I had Covid I was really sick and I am sure it effected my lungs I was so active before all this happened but don’t do much these days Can’t get scheduled for Respiratory rehab because of Covid So unhappy
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Hello Nancy, your life longevity doesn’t depend on your age but rather your health. National survival rates after 5 years out from a lung transplant hovers around 53%. Some centers are a little more and some a little less. I am 5 years out and doing well. I always say it’s hard work to keep living. What’s wonderful is your transplanted lungs will never be tired. I hope pulmonary rehab opens up for you soon. Take care, Mark.
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Thanks so much for your input, David. I actually have an update – so the process is moving along.
Mayo Clinic (Jacksonville) has scheduled an initial appointment for Feb. 14th. All I really know at this point is that at this initial appoinment we will get more information about the testing series David must undergo – that it is about two weeks in duration on consecutive days. I honestly didn’t think Mayo would be an option for us because I carry our health insurance through my employer, a large health system in the NE Florida area through Blue Cross Blue Shield of Florida. But because my health system does not provide any transplantation services, my policy will pay since Mayo is an in-network service provider for BCBSF. We live in the county just south of Jacksonville, so the Mayo Clinic is a short drive for us.
The other referral was made at the Shands Hospital-University of Florida in Gainesville. I have been in contact with their intake and finance staff from their transplant program, but we haven’t gotten the call yet to schedule our initial appointment. All I know is that they only schedule new patient appointments on Mondays. I’m a bit tentative about following up with Shands at this time until I have a better idea of the timeline with Mayo.
Does anyone have any experiences with these two programs that you could share, or some advice on how to get specific information about the programs that may be helpful to us?
We really appreciate your input.
Trish
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Trish, @patriciadubose
One of the PF Forums is for Lung Transplants. It has this link: https://www.srtr.org/ for comparing transplant centers. Jacksonville Mayo is on that list and so is Shands, choose lungs at the top and it shows you all the Lung Transplant Centers and their Stats.
Tell your David, good luck, I hope he gets what he wants.
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I’ve used the VA for all of the test they require to make a decision regarding a transplant and was turned down because of neuropathy and age (74). I had my first appointment at St. Joseph’s in Phoenix a couple of weeks ago and was told they had three additional tests they required before presenting everything to the committee that will make the decision regarding my eligibility to be put on the waiting list
I expressed my concern regarding the neuropathy because I currently use a cane and have difficulty standing up without using something for support ie. table or arm of the chair.
inwonder i -
I’m wondering if age or neuropathy have been the reason given for not qualifying to get on the waiting list. Although I was diagnosed with IPF two years ago, a neurologist I started seeing three months ago for the neuropathy has said he thinks I have a condition known as MLTD which is similar to LUPIS. He has had me on prednisone for 4 months and though I’ve regained a lot of feeling in my legs and feet the weakness hasn’t as yet shown much improvement. He seems to feel the IPF is caused by the MLTD.
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Hello Michael, every transplant center has different requirements for their patients. Some centers are high risk centers and some will only take the healthiest of the applicants. It is good you have regained feeling in your legs and maybe with some resistance and cardio training you will regain your strength in your legs. I am hoping you get approved to be listed since they seemed to have been able to treat your neuropathy. Good luck, Mark.
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Hello Michael, the meds will fluctuate slightly. Think of your body as chemistry experiment. Transplant team will constantly monitor your lab results and adjust the dosage or add or subtract a med from your list. It is not really that daunting to keep track and take your meds at the prescribed time. Some of your meds will consist of vitamin supplements to balance your metabolism and electrolytes. I use an application to to keep track and after almost 5 years the process is almost like muscle memory. My transplant evaluation process spanned 6 months. At least doing 3-4 times week will shorten the length. Take care, Mark.
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Michael
I’m 4+ years out from my transplant at St Joes in Phoenix. I currently take 16 different meds and vitamens morning and night. At the start of this transplant it was more, probably around 20, including some serious antibiotics and nebulizer drugs. I recall pain killers I did not use and testing for blood sugar. Those stopped very quickly after I was sent home. I was in Phoenix for 12 weeks after I was released from the hospital. The 1st month I was going to “clinic” several times a week, by 12 weeks I was down to once every 2 months. It got down to once every 3 months. For 4 years I was remarkably free of crazy symptoms, white blood cell counts at 0, tacrolimus levels too high, liver enzymes wrong, etc. No emergency room visits. I moved to Phoenix 2 years after my transplant to make the visits easier, figuring they would increase as the transplant “aged”.
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Hi Trish, thank you for sharing. My husband was approved for a transplant yesterday. He deteriorated rapidly between October and December. He went into hospital mid December and they told us that he did not meet the 6 minute walk requirement plus his age, he is 74. However they kept him in the hospital with a treatment of a corticoide and physiotherapy and he improved almost immediately. After chequing everything else, yesterday they approved him. Whether he makes it or not to the transplant, his IPF is advanced, he is in great spirits which is a change from how he was feeling at the beginning of December. Good luck to your husband, lets hope everything works out.
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Hello everyone. I have been reading this articial on transplants. Very interesting. I have a question on my situation. I spent 4 months in the hospital at the beginning of last year. After a bunch of checking and prodding and poking and then a exploritor surgery where it was found I was missing a lung. After they sent a sample to Rochester, Mn it took a couple months to get an answer back. The local hospital had kept a sample and after they test it they determined I have IPF. That was confirmed by Rochester. My question is this. Because I have already lost one lung and the other is being slowly destroyed, would I quality at all for a transplant? Could you tell my the cost of the transplant and all the drugs afterwards. I had the lung capacity test done and came out at 37%, which my doctor said disqualified my from any programs.The last appointment I had with the doc he supposedly had some big news, well there was none. Reading an article this morn that the future test they my be using people who are below the 47%. I would appreciate any answers I could get from this group.
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Hello Randy, I don’t why your doctor said that you would be precluded from a transplant if he’s not a doctor at the transplant center. Every center has different qualifications and some centers will take high risk patients. I don’t know your health history but at your age you should have minimal other health problems in order to be included for evaluation. I can tell you what my single lung transplant cost but not others. My transplant and stay was close to $700,000 and I was not responsible for any of it. My meds cost about $40 a month. If you are interested in transplant I suggest you go the http://www.srtr.com site and compare centers. Make some calls to centers you are interested in and ask questions. Take care, mark
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Mark hi, You where wondering about my other health problems. Well, there are many. Start with afib, cad, ulceritive cloritis, arthritis in all joint and had a knee replaced, macular degeneration. These are the ones I can think of off hand. I have been told by various doctors that no one will do surgery on me because of the afib. If that is so, then I guess that is that. I am hoping that one of the drugs they are working on turns out the way they are hoping. Couple they think will reverse the fibrosis. Would be nice. Anyhow, how and who paid for the transplant? Also, I was told the after drugs where very expensive and you’re saying $40. The only transplants around here is heart. Please keep filling me in. I am getting disperart with only a partial lung left. The last lung capacity test I had was 37%. My doctor had mentioned me going to Denver to a lung hospital, but O have to go over the Rocky Mountains and I couldn’t take the altitude. Hope to hear from you again. Randy
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Hi Randy, I had excellent insurance when I was employed. I am now on my wife’s plan and since we were employed in the same school district I am fortunate to still have excellent coverage. For me the most expensive medicine I am on is sporanox; it is a fungus prevention med. I still only pay $10 for 3 month supply. I’m not sure if afib will omit you from transplant eligibility. It’s best to call a center http://www.srtr.org you can find all the centers here. You will probably have to go to a high risk center. The Cleveland Clinic is one I know of and UPMC is another, located in Pittsburgh. Try giving a call to multiple centers, the worst they can say is no. Take care, Mark.
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