Tagged: chronic illness, decisions, IPF, lung disease, lung transplant, PF, surgery
- This topic has 66 replies, 20 voices, and was last updated 3 years, 2 months ago by Mark Koziol.
January 28, 2019 at 8:39 pm #16317
The topic of discussing lung transplantation has always left me uncomfortable and truth be told, pretty scared to consider this option as the “cure” for my idiopathic pulmonary fibrosis (IPF). I don’t know why that is, or what it is exactly that I am scared of. Its not the operation itself, I am (thankfully) not one to get too worked up about medical procedures, surgeries, etc. I don’t believe it is the recovery either, because while that will be an exceptionally challenging time, I’ll be happy to be on the other side of surgery and on the road to recovery, albeit slowly.
Recently, my Pulmonologist and I discussed lung transplantation again and while it’s not in my immediate future, I know this procedure is imminent. As soon as he broached the topic, I felt my anxiety slowly rising and looking for every opportunity to end the conversation. I’ve since spent some time reflecting on my reaction to talking about a transplant, and why that might be. I’ve come to the conclusion that I truly think it is because of the magnitude of considerations and decisions that need to occur when preparing for lung transplantation.
Just last week I wrote a column titled My Many Concerns When Considering Lung Transplantation, and it certainly helped to write it all out. Already I’ve been contacted by others who have been through a transplant and I am comforted, just like I am through all the support by our forums community. Were you aware of the breadth of decisions and considerations that come with a transplant?
Here are just a few examples:
- Emotional considerations: Survivor’s guilt, loss of independence, normalcy and routine.
- Financial considerations: re-locating to the transplant centre, time away from work and medication expenses.
- Physical considerations: pain and fatigue from surgery, medication side effects and the physical recovery of a sternotomy.
- Social considerations: isolation to stay healthy, fear of friendships breaking down due to the intensity of the lung transplant process.
I have elaborated on each of these considerations in my column linked above. For those of you who have been through the transplant process: how did you work through these big decisions or considerations?
Do you have any tips for those of us who will be considering this in the future?
January 30, 2019 at 11:40 am #16346Chuck HarrisonParticipant
I’m going to take my time on this one ? , I have many questions , a ton of concerns , and some serious soul searching to do .
ive been thru many surgeries , even quad bypass , and as of right now I’m uncomfortable with it .
give me a day or so ,
your very good friend,
January 30, 2019 at 8:55 pm #16362
Look forward to hearing your thoughts Chuck. I agree, I am not afraid of surgery but for some reason I am dreading the serious discussion about this next step in the IPF journey. Curious to hear your thoughts when you can, and I’ll do the same. I’m trying to respond to everyone as best I can but goodness this platform is busy, which is absolutely amazing! Hope you’re doing well my friend and talk to you soon.
February 1, 2019 at 1:42 pm #16399Patricia HaydenParticipant
Hope you are enduring the cold freeze. I have come back to your post a couple times wanting to comment and finally here I am. First of all thank you for doing this blog. What a gift.
I am in my final months of being evaluated for lung transplant at the U of W. I will then be put on a list to wait for a lung. My thoughts, feelings, emotions and even logic have been a steady ride this year but even then and now I know I was going for the transplant. 65 is to young to give up. I choose to go through this to be with my family and friends longer then if I did not TX. I also believe this is Gods will. I also believe I still have some more good to do in this world.
Love ya Girl and Take care.
February 3, 2019 at 7:16 pm #16455
So nice to hear from you, I often wonder how you’re doing so thank you so much for writing!
Thankfully, the polar vortex here has ended and now we’re experiencing a “balmy” +6 degrees, which is wonderful compared to the -35 temps we had last week. Although, not surprising, many are getting sick with colds due to the drastic temperature changes, myself included, so that stinks a little bit. Oh well, I’ll be alright 🙂
So glad to hear your positive thoughts and that you’re proceeding with a transplant. Good for you! How has the evaluation been for you thus far? Will you be listed for a single lung transplant then? I so appreciate hearing from others on this topic, as it is one that overwhelms me quickly but knowing others are there that I can reach out to certainly helps so thank you for that. I agree, you have (and are doing) lots more good things in this world still. Think of you often, and eager to hear once you’re listed!
Sending so much love back to you! hugs!
February 5, 2019 at 10:01 am #16493Chuck HarrisonParticipant
Hi Charlene ,
been a bit of time on my end . Lung transplant , I mentioned that I’ve had many surgeries , it’s not about the surgery it’s self , it’s the after care that concerns me . I know there are many people that have gone thru the transplant and are now in recovery mode.
My concern is the recovery , the traveling involved ( many miles ) one way , the amount of traveling , and my strength . Concern what happens after awhile my body rejects , and then having to go thru the same thing over again ! Medications , just the whole thing bothers me . It sounds silly but the concern is real for me . The what ifs , I have never been a what if person , now ? For some reason I am . Something just doesn’t feel right to me ! Hope that we can kinda work thru this , it’s not a simple yeah let’s go , get it donE.
Your friend as alaways
February 5, 2019 at 2:26 pm #16494
Nice to hear from you my friend. Are you doing a bit better these last few days?
I agree with you re: lung transplant. I am not scared of the surgery itself either, it is the recovery and then the lifetime adjustment of changes and new “disease” management that worries me (ie. keeping up with rejection medications, appointments, etc). That said, if I have no other option then I will proceed of course but right now I am basically “proceeding with caution”. Much of what you said concerns me too, so thank you for sharing. Would you have to relocate to a closer transplant center while you wait and/or recover from transplant? I will post-surgery, but not ahead of time thankfully.
Have you been told that eventually you will have to consider transplant? I’m not sure we’ve talked about that before, and if we have, forgive me for forgetting that. Curious to know what your transplant status is or might be in future.
Thinking of you and hoping you’re doing well.
March 27, 2019 at 1:15 pm #17956David CollardParticipant
Does any one have statistics on the number of successful lung transplants versus the number of failures or rejections? I have heard of complications with lung transplants. Is there any data on the length of time that extends an IFP life?
March 27, 2019 at 1:59 pm #17957
Hello David, I am pasting the srtr website which can give you statistics for each transplant center in the U.S. As for extending the life of patients with ipf. There is some research by the companies Genentech and Boehringer Ingleheim.
March 27, 2019 at 7:38 pm #17961
Hey Mark and David,
Great question here, and thanks for sharing that Mark — I didn’t know that link existed either. I know it is for the US, but still really interesting to learn about. I am sure others will benefit from this link as well, thanks for sharing the resource 🙂
March 28, 2019 at 4:15 am #17970
Hello Charlene and David, I found this site and it is Canada’s equivalent to the U.S. version of organ transplant tracking. On Canada’s site they also include other procedures. This site is not as user friendly but the information is there.
March 29, 2019 at 12:04 pm #17998
Oh wow, thanks so much for sharing that link… I am going to take a closer look at it, as I am curious about the Canadian equivalent to the link you shared for sure. Hope you’re feeling better and talk to you soon.
March 28, 2019 at 10:07 am #17973Keith NelsonParticipant
Thank you for sharing your concerns, and to every one who responded. “Information” is very welcome.
My Pulmonologist said nothing about “transplant” being an option. Then again, the Pulmonologist in my case left it to his Nurse Practitioner to give me the news of my diagnosis. Basically all she “informed” me was that the results of my lung biopsy revealed PF. Then she recommended “ofev” – without much information about that drug, seemed very cavalier. Since, I have scheduled to be examined by the local research & education hospital. There was a 60 day interval from making the appointment to the time I will actually have my first visit with the researcher, assistant Professor, MD, Pulmonologist. Whether or not “transplant” will be a topic that Dr. initiates, it will be topic that I will inquire about.
My primary care physician who is overseeing all of this, has been mum about the issue of transplant.
It seems to me Dr.’s are attracted to medical conditions they can do something about. In the case of IPF, the only two options, one an attempt to stop the known progression, the other transplant – seem to leave both my Pulmonologist and my PCP at a loss.
Fortunately, very fortunately, for me at this juncture I do not present with any visible symptoms. When I exercise, walk, briskly 2 to 4 miles every day, some with elevation gain, then I can easily identify that my lungs are not up to snuff. I suspect, due to not “presenting” as sickly, or IPF afflicted – there are other patients who garner their attention and expertise.
It all may be that I am just not a patient person! I was hoping to move this along with the Oregon Health & Science University getting involved. They “will” – they “are” in my future, it just waiting out the 60 days tests my patients. I want to be doing something about my IPF – other than waiting. So I walk. I push my walking, each and every walk, to my maximum capacity.
Again, thank you for your informative transplant issue posts.
March 29, 2019 at 12:10 pm #17999
Thanks so much for contributing to this topic thread, and I agree with you, information certainly is welcome and appreciated.
I am a little concerned about the lack of information the NP provided, and that the doctor didn’t give you the diagnosis or more information on how to manage this serious lung disease. Ofev can be a complicated drug in terms of managing the side effects and oftentimes, another prescription is needed to help alleviate how uncomfortable the drug can make you feel. I’m glad you took it a step further to participate in a conversation with the researcher, I think this is wise. Do you have any other co-morbidity/illnesses that might disqualify you for transplant? I suppose it depends on so much whether or not you will be eligible for transplant but I’d certainly bring it up for discussion (if you’d consider it).
Good for you for continuing to exercise and push yourself physically, this will help you in the long run I truly believe. I also know that it isn’t easy so kudos to you! I have another friend through the forums who lives in Oregon and may have been seen initially at the University center you provided but has since changed her care to someone more up state. Not sure why, but I can find out for you if you want?
Wishing you the best and keep us posted on your conversation with the doctor upcoming.
May 1, 2019 at 8:48 am #18885MarianneParticipant
Hi all –
I thought in the USA that most transplant centers will not even consider a person over 65 years of age. But I see that many people over 65 either have or are being considered from lung transplants. I am still in the early stages. No medicine and no oxygen. Just have this chronic dry cough. Currently scheduled for a VATS lung biopsy on May 10 to determine specific ILD. They are thinking either IPF or NSIP. Doctors have not discussed lung transplant as an option.
May 1, 2019 at 10:47 am #18889
Hello Marianne, the Cleveland Clinic does in fact perform transplants on persons over age 70. The clinic is considered a high risk, high volume center. In fact a gentleman I did pulmonary rehab with had his transplant at the age of 73, this was 3 years ago and he’s doing excellent. I’m glad they haven’t discussed transplant with you. I’m sure they are hoping it doesn’t manifest to that point. Good luck with the VATS. I’m sure you will do fine. Mark
May 1, 2019 at 10:12 am #18888
Thanks so much for writing and contributing to this topic thread. I am not in the US so I don’t have a lot of knowledge around US transplant center rules, but I do know people over 65 who have received a transplant. As a result, I think each center may have slightly different requirements and don’t believe age is a blanket disqualifyer. I could be wrong, but that was my understanding. @Mark-Koziol, do you know any more about this question from Marianne?
I hope your disease remains in the early stages for you awhile longer Marianne, and that you can remain off oxygen and medications! Take good care.
May 1, 2019 at 12:11 pm #18890MarianneParticipant
Mark & Charlene –
Thanks for your replies to my earlier post. I too am hoping I stay stable for awhile. I have had the cough for 5 years and my former doctors kept telling me it was acid reflux. I know my cough is worse when it is winter time and very cold outside. I also recently found out I have allergies to most grasses, some trees, dogs and cats. So far I haven’t noticed much difference than before I knew I had allergies. I will need to pay attention and see if my coughing is worse when outside this spring and fall.
Hope you are both having a good day today. Weather is beautiful today in Ohio. In the low 80’s.
May 1, 2019 at 12:29 pm #18891
Hello Marianne, I recently wrote a forum topic regarding allergies and how they have affected me. I am like you with allergies to grasses and trees. I am not allergic to animals though. I am also enjoying the Ohio weather today. Here is the link for the topic.
May 3, 2019 at 7:49 am #18905Crystal MParticipant
Hello my name is Crystal. I feel like if I want to live and give myself a second chance at life, then I have no choice..per say….then to choose a double lung transplant. Knowing that I’m going to trade in one disease for a whole set of another diseases and illnesses and side effects and symptoms and possibly death. How crazy scary is that? Who wants that? Hence the anxiety and depression. Oh heck, my anxiety and depression started long ago when diagnosed 5 years ago. I am 48-years-old. A total rollercoaster of emotions.
May 3, 2019 at 7:55 am #18909
Thanks for writing and sharing your thoughts on this very difficult topic! A lot of what you said resonated with me, as I am 31 so very young to have IPF as well. The thought of trading in one disease for another, plus enduring an intense surgery and recovery for only a few years (potentially, science and transplantation are improving every day) is very daunting, although I often ask myself what choice I have if I want to survive. It certainly leaves us pondering a lot, and leaves ample room for mental health effects to arise as well such as depression or anxiety. I hope you seek the support you need for these Crystal, that is a very important part of this journey. Wishing you well and feel free to write anytime… we’re in this together!
May 3, 2019 at 5:04 pm #18922Rob TylerParticipant
My Brother and myself both have IPF (my brother is 3 years older). He also is burden with COPD. This topic has been on both of our minds this week, with a setback he just experienced these last 10 days. He had been on 02 for night time, but recently found He needed it for daytime activities after a set back. When He received the mobil 02, it gave Him renewed freedom, too much freedom. We are both active in the outdoors, Myself with the farm, and my brother with hunting and fishing. The next day after receiving His tank on wheels, off He went, hunting and fishing, and each day after that. Mother nature caught up with Him, releasing a full load of pollen, and at its peak, the pollen drifted, filling the voids of His lungs, nose, throat. Few days came, and His 02 levels dropped on any type of execertion. He could put the tank on up to 6, from 2, and no help. It landed him back in the hospital. I left my home in Va to be with Him in N.C. this week, to give support, and lend that extra ear, when listening to the Doctors. He can not leave the bed, without 02’s falling to the mid 70’s. The local hospital has done all they can these last 4 days trying to clear the phelm. Lung transplant is the only alternative on the table. As I am typing this, he is getting ready for transport. He will be heading to DUKE, to go threw the process of qualifying for a transplant. 10 days ago, transplant was not even in the discussion. We are dealing with the cards that were dealt, and each of us plays the hand in a different manner. If my Brother did not have a herd of young grandchildren, He may have taken a different route, and it would be His choice. These last 5 days, my Brother and myself discussed the future, the unknown, and what may or may not happen. Bottom line; prayer and positive thoughts is what we have to hold onto. And to just think, He was fishing and turkey hunting, just two weeks ago.
May 3, 2019 at 7:20 pm #18923
Hello Rob, it is too bad we have to communicate under these circumstances. Pulmonary fibrosis is a nasty disease which has a mind of its own. For some of the persons affected with this disease there is a slow progression, for others an exacerbation may occur and cause excessive damage to the lungs. Loss of lung function is substantial and the quality of life is greatly affected. The only remedy to extend life for these persons is a lung transplant. I was one of these people. You two have the right attitude moving forward. You spoke of remaining positive and prayer. The right mental attitude will help your brother through this and also help you cope. A strong support system will be beneficial for your brothers recovery. Your brother is lucky to have you by his side. Best wishes and please keep us up to date on your brothers condition. If you need to reach out please do. Mark
May 3, 2019 at 7:43 pm #18924Rob TylerParticipant
Thank you for your kind words. There is not a road map for this journey, and we are just getting behind the wheel. Staying positive and taking one day @ a time.
May 7, 2019 at 10:13 am #18972James LottParticipant
I had a single lung transplant a year and a half ago. Because of my age and the IPF, I knew I would probably only get one lung. However I am almost certain that I would be dead by now without it.
Charlene you worry about a sternotomy. Now days they use what is called a clam shell incision. A small cut around the bottom of the breast and move just the three bottom ribs. At age 71 it took me nine days in the hospital (after being warned of 3-4 weeks possibly).
Second you worry about being a social loner. I have to worry about what I eat and drink. I also avoid people that are sick but most of my friends see no difference from the way I was years ago.
You talked about feeling guilty. I assume you are referring to the donor. I am so grateful for the gift I received I don’t worry about guilt.
Please people don’t wait so long making your decision that you are too old for the transplant. Here in Michigan they quit at 70 except for people like me that got on the list just before the magic age of 71.
May 8, 2019 at 9:22 am #18987
Thank you so much for getting in touch with me regarding this topic, and sharing your thoughts. I so appreciate hearing from folks who have been through the experience, and can speak to my specific worries! I appreciate the time you took in replying and that you shared a bit of your experience with me. So glad you got on the list, and had the single lung transplant done successfully 🙂 Way to go! I hope it remains strong for you for many more years.
Thanks again for writing.
May 7, 2019 at 1:20 pm #18974Joe MurrayParticipant
I am new to the site and conversation, but I was diagnosed last year with IPF which a lung biopsy confirmed earlier this year. I went on o2 at 5 lpm 24/7 after surgery. To qualify for a lung transplant I needed to lose 100 to 110 pounds before evaluation and I have lost 56 lbs in three months. Now working at not losing more than 3 lbs per week. Next week, I will meet a transplant surgeon for a discussion on the in’s and out’s of lung transplantation surgery. It is the only cure and I am resolved to do all that I can to help myself. My family, friends, and faith give me strength that sustains my positive attitude.
May 7, 2019 at 1:30 pm #18975
Hello Joe, the PF forum is happy to have you. I was in the same boat as you. I needed to lose 80 pounds before I was listed and I did it. It appears you are on the right path. It’s nice you have a good support system. Not everyone has that and some are denied transplant because they do not have a support system in place. If you need any questions answered about me losing the weight, evaluation for transplant, or the transplant itself, please ask. Best wishes. Mark
May 25, 2019 at 6:39 pm #19348
Your concerns are valid, and speak well of your thoughful and caring nature.
Lucky for me, I was not born thoughtful or caring. Some would argue I was born without a heart or compassion. They are wrong, but I would have to consider my arguments, and a strategy to convince myself and them. 🙂
I was, however, born an engineer. In my binary black and white world, I skin these decisions back to the bone, and try and keep things simple. I recall asking myself if want to move forward with a transplant. The question I needed to answer was:
Am I ready to leave this world?
All other considerations were immaterial until I could answer this question for myself.
Simple question, simple answer. I was not ready to leave this world. I still had things to see and do, and there was only one path out of IPF.
One Engineer’s answer:
Survivor’s guilt – This is not something that would affect me. I did not kill anyone to steal their lungs. I did not survive at someone else’s expense. They were dead before I got the call.
Loss of independence, normalcy and routine. – I chuckle at this one, that ship sailed when IPF became my enemy. A non-issue by the time the doc’s are looking to cut.
True concerns, but not part of the decision to have a transplant.
Relocate to transplant ceneter for operation: Yes, < 4 months
Time away from work: Yes, used FMLA and my employer illnes bank, total time off <5 months. I carry short term disability insurance, and did not miss a check.
Medical expenses: Yes OUCH!, my drugs are mostly covered by my health insurance and the cost of the operation was covered as well as $10K in living expenses. I expect to meet my out of pocket medical expenses every year and budget accordingly.
Pain from surgery: Surprisingly little. They had me pretty drugged up and on an epidural. I remember looking at this GIGANTIC cut across my chest and poking it with my finger. I felt NOTHING! I figured they cut a couple of nerves and it was numb. I was wrong as subsequent surgeries would inform me, but my transplant surgery was not a pain fest and opiate ride.
Fatigue: Yes, but at xmas 2018, 2+ years out, I hiked up and down some mountain trail in Scottsdale. Had to stop and rest, but it was a real hike and I made it up and down with some whining.
Side affects: Yes, not sure where to go with this one. I’m on meds to help with the side affects of other meds. I’ve lost weight and have to watch how I swallow from the side effects of the surgery. Like most things, even the crazy stuff become routine if you do it long enough.
Your observations are real and true:
Being a crabby old man I treasure the opportunity to avoid sick people. You are young and probably my polar opposite, I suspect we are the same species, but the similarities drop off fast from there. Luckily they make RZMasks and hand sanitizer.
I have lost friends and family by virtue of staying alive longer than them. You make new friends and life continues to throw curveballs at your head.
May 26, 2019 at 7:28 pm #19389
Thank you so much for taking the time to validate my concerns regarding lung transplantation. While you might say you were born without a heart, I’d argue that as I felt your reply to me was very compassionate and thoughtful. Thank you for doing that, and sharing your experience with me. I tend to operate better with “black and white” as well; I like to know how to do things and accomplish them/get them done. Sadly, with IPF there is a lot of “grey”, meaning things we can’t know so navigating that has not been easy.
I am not ready to leave the world either, I like how you phrased that. All these considerations are important and I appreciate hearing a real-life experience of how you dealt/are dealing with them, very helpful. It will be what it will be I suppose… right? 🙂
May 28, 2019 at 4:46 pm #19458
As some know here I am currently going through the evaluation process to see if I can get on the list. I am going through Mass General Hospital, Boston who has a really high success rate. Probably because their criteria is so rigid.
My thoughts on the concept of a transplant? Scares the crap out of me. I am someone who need to be as much as I can be in control of what i going on in my lift. On this the only thing I have any real control over is my quest to lower my BMI (was near 39 in Jan 2019 (Boston will not consider you if your over 30). Once I got below 32 they agreed to evaluate me. I am currently at 29.4.
The surgery though……. I am entrusting my life to a team of medical people. ‘
Do I only want transplants from healthy people? Or am I willing to accept donors who have been exposed to Hep C or a risky life style that put them at risk for HIV? As a former advanced life support EMT I give myself a dumb slap when I forgot that people who work in the emergency services are also considered “at risk” donors. Hospitals in the US have been doing these donors for approximately 4 years with good enough results that the FDA just approved it, which means the insurance companies will now pay for the harvesting of these organs. Before the approval it was up to the insurance company on whether or not they would pay for the harvesting.
Still choices on this issue are limited. Do it and hope you do well, or ……. well die. Since it is my job to be a royal pain in the butt to all that I know, (and some lucky people who do not really know me ;o) ), I plan on sticking around for quite some time.
May 28, 2019 at 5:18 pm #19459
Hi Paula. I live in Rhode Island and will be investigating lung transplants at some time in the future. Does Mass General have a bigger program than Brigham and Women’s? Do they do transplants on people over 70 (I’m 71)? I know that some places do and others don’t.
May 29, 2019 at 3:56 am #19471
Cynthia, Good Morning. Not sure if the Generals program is bigger than B & W’s but they are more rigid. Also not sure if there is an age limit. If you like I can ask the next time I am talking to them.
What part of RI are you in? I live on the Cumberland line (North Attleboro).
May 29, 2019 at 4:05 am #19472
Hi @paula. I live in East Providence so I’m just 20 minutes away from you. I go to Briggs Nursery all the time. Perhaps we can meet for coffee sometime. I’d love to talk with someone who is going through this. When were you diagnosed? I was just diagnosed a few weeks ago so I’m still trying to digest what this all means.
May 29, 2019 at 5:47 am #19473
We were just at Briggs the other weekend. I love them so much that when I was in Plymouth, I would travel up to them to get my plants.
Coffee would be great. I have no appointments in Boston in June so maybe we could hook up then and I can tell you what I have learn so far on this journey. I was diagnosed Feb 2016
May 29, 2019 at 7:37 am #19483
I wish I could join you both for coffee @cynthia-comery-ferguson and @justme0956 (Paula)! Enjoy catching up and know that my heart is with you while you’re together. It’s so nice to be able to connect with people going through the same experience. Let me know how it goes, and enjoy your coffee meet up 🙂
May 29, 2019 at 10:50 am #19489
I wish you could join us too, Charlene. I had a nice conversation with Paula this morning on the phone and we were both saying how important this forum has become to us. Thank you so much for all you do to keep it going. It’s been an incredible source of comfort and information for me since learning about this disease just two weeks ago.
May 29, 2019 at 6:54 pm #19498
Thank you so much for your kind words, it truly makes all of our efforts at Pulmonary Fibrosis News worth it when we know the forums have been beneficial for our members. Your words truly brightened my day, and I am so glad you got to speak with Paula — she is just wonderful if you ask me! Her and I have been talking about FaceTiming or calling actually, and were in the process of seeing if our phones would support international calling without too much costs. Maybe I could FaceTime in to say hello when you go for coffee? Keep me posted, I’d love that 🙂
May 30, 2019 at 11:28 am #19506Peggy McBrideParticipant
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!
May 30, 2019 at 1:16 pm #19511
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!
May 31, 2019 at 9:04 am #19539Robert ObrienParticipant
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!
May 31, 2019 at 10:39 am #19545
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.
May 31, 2019 at 12:41 pm #19551
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!
May 31, 2019 at 5:12 pm #19560
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.
May 31, 2019 at 6:17 pm #19564linda waldschmidtParticipant
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?
June 1, 2019 at 2:45 am #19567
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.
June 1, 2019 at 6:51 am #19570
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.
June 1, 2019 at 4:40 am #19568linda waldschmidtParticipant
What are the post op rules?
June 1, 2019 at 4:48 am #19569
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.
February 13, 2020 at 8:00 am #22951Luis PerniaParticipant
Hi everyone. I would like to know how much is the financial cost for a lung transplant?
February 13, 2020 at 1:25 pm #22958
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.
February 13, 2020 at 1:50 pm #22960
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.
February 13, 2020 at 1:54 pm #22961
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.
February 13, 2020 at 2:01 pm #22962
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
February 13, 2020 at 2:24 pm #22964
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.
February 13, 2020 at 3:51 pm #22969Joe MurrayParticipant
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.
February 13, 2020 at 5:29 pm #22970Luis PerniaParticipant
Thank you for the answers to my question, I am grateful for the attention you take to answer. They are all very kind.
February 14, 2020 at 8:43 am #22977
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
February 14, 2020 at 9:11 am #22978
Hello Karen, I’m glad I could be of help. Happy Valentine’s Day to you. Take care, mark.
February 14, 2020 at 3:57 pm #22997
Happy Valentine’s Day to you, too! Karen
March 5, 2020 at 10:47 am #23317Stephen GouldParticipant
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.
March 5, 2020 at 12:41 pm #23318
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.
March 5, 2020 at 2:53 pm #23320Robert ObrienParticipant
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!?
March 5, 2020 at 3:16 pm #23325
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.
March 5, 2020 at 3:22 pm #23328
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.
March 5, 2020 at 4:05 pm #23330
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…
March 5, 2020 at 4:41 pm #23331
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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