Lung Transplant Considerations.

[Chuck Harrison]

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,

chuck

[Charlene Marshall]

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.

Charlene.

[Patricia Hayden]

Hi Charlene,
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.

[Charlene Marshall]

Hi Patricia,

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!
Charlene.

[Chuck Harrison]

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

chuck

 

[Charlene Marshall]

Hi Chuck,

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.

Charlene.

[David Collard]

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?

[Mark Koziol]

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.

https://www.srtr.org/

[Charlene Marshall]

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 🙂

Charlene.

[Mark Koziol]

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.

https://www.cihi.ca/en/canadian-organ-replacement-register-corr

[Charlene Marshall]

Hi Mark,

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.
Charlene.

[Keith Nelson]

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.

Keith

[Charlene Marshall]

Hi Keith,

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.
cheers,
Charlene.

[Marianne]

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.

Marianne

[Mark Koziol]

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

[Charlene Marshall]

Hi Marianne,

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.
Charlene.

[Marianne]

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.

Marianne

[Mark Koziol]

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.

https://pulmonaryfibrosisnews.com/forums/forums/topic/allergy-season-is-upon-us/

 

Allergy Season is Upon Us

[Crystal M]

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.

[Charlene Marshall]

Hi Crystal,

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!

Regards,
Charlene.

[Rob Tyler]

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.

 

 

 

 

 

[Mark Koziol]

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

[Rob Tyler]

Mark;

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.

[James Lott]

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.

[Charlene Marshall]

Hi James,

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.
Charlene.

[Joe Murray]

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.

[Mark Koziol]

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

[David Ota]

Charlene

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:

Emotional considerations:

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.

Financial considerations:

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.

Physical considerations:

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.

Social considerations:

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.

[Charlene Marshall]

Hi David,

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? 🙂

Take care,
Charlene.

[paula]

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.

[Cynthia]

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.

[paula]

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).

[Cynthia]

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.

[paula]

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

[Charlene Marshall]

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 🙂

Charlene.

[Cynthia]

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.

[Charlene Marshall]

Hi Cynthia,

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 🙂