What's going to happen to me?
Posted , 14 users are following.
I live in the Monterey Bay in California, so hope I can crash in on the UK folk here. It seems like a nice group. I was diagnosed with IPF around July of 2016. I am 67 years old. My condition went from no symptoms to a horrible crash after a lung biopsy, and a kind of recovery but with the certainty that this is a one way street. Estimates of survival time vary wildly depending upon treatment. I am being tested soon to see if I qualify for a lung transplant.
Here's the rub: Is a transplant worth it? The quality of life post-transplant appears to work for some people, although again, the survival time is very unpredictable. Oh dear, what's a person to do? Indeed, that is the question. Honestly I absolutely hate the idea of a transplant. Perhaps I not as attached to living as others are. That is not a death wish however. But I do wonder how much fuss one is to make in "hanging on." I recently read the book "Being Mortal" by Atul Gwande, a doctor who watched his father, also a doctor, struggle with "when to let go".
I am looking for some discussion on this that, well, sorry, doesn't rely upon God, or "blessings" nor even so much "have hope".
IPF is pretty isolating when on oxygen 24/7. Getting around with an E-tank is a drag, no pun intended. So if anyone wants to bank around on issues like the disease itself, mortality, pain, guilt, fear, sadness and all the rest, I'd like to have at it.
es
0 likes, 47 replies
CherylH eric87817
Posted
Hi Eric,
I too live in the USA (Ohio). I was diagnosed in November with a type of pulmonary fibrosis (PPFE = pleuroparenchymal fibroelastosis). The prognosis online sounds pretty bad, but my pulmonologist tells me things to help, but I'm pretty sure the research and medical articles I have read are pretty darn accurate. (PUBMED, which is sponsored by the National Institutes of Health, has fantastic scientific/research articles). One doc I saw pretty much told me the only treatment is lung transplantation. I am 66, and I surely would have chosen to live a normal lifespan, but..... and when I think about lung transplantation, I don't know if I could handle that. Have you made any decision yet?
eric87817 CherylH
Posted
Hi Cheryl,
It looks like we are the same age. I can't decide if 67 is "old" by today's standards. Odd isn't it?
Regarding the big decision, I am "playing along" as it were, by taking the many tests to qualify. I claim to have not decided, but have a very strong sense that I will go for it. I almost said "capitulate" to it, and that is how I feel.
Currently I have almost no symptoms except needing 4 Ltr of oxygen 24/7, some fatigue, and I think my cough is coming back, but is still mild.
I say this because it makes this whole thing all the more surreal. Am I sick? Am I dying? Do I have three years? Is there the possibility of a decade? Will living with a transplant and all the complications it adds to life be worth it? And so on and so forth.
Some talk of "fighting" their disease, whether it be cancer, IPF, cystic fibrosis and I suppose what you have. I really am sick of everyone wanting to fight something. You know, war on drugs, war on poverty, war on this and that. It just rings hollow to me now. That said, I do understand when it is said of someone that they put up a good fight, which is a strange contradiction. I's prefer something along the lines of "hard work" but that just doesn't have the old ring that "fight" does. Enough on that.
How about discussion this transplant thing some more. We can do that either here or more privately with email or something. Making decisions over life and death is a pretty personal thing (he understated). I'd like to know more about what variables you are working with to make your decision, and maybe talk about the icky parts as well.
Thanks for the response. Sorry for not having a real answer.
es
CherylH eric87817
Posted
Hi Eric,
i wanted to reply before heading off to work. My symptoms aren't bad. I have a cough on and off, and maybe a little short of breath at times, but I am not taking medications or oxygen (yet). I've read a lot about the disease and seems that it can run a different course in each of us. I've also read a lot about lung transplantation, and I can't figure out how much time it buys one. Doctors make it sound like a good deal, but then I read the scientific and medical articles and end up with a negative attitude towards the procedure. I have a fairly good support network via my family and currently have work friends. I do plan on retiring within the next year though, so there goes the work friends! I am not sure how to discuss more in a private avenue-- I have to figure that out. I hope you have a good day!
eric87817 CherylH
Posted
Thanks for the reply Cheryl,
Well, the 24/7 oxygen is a hassle for me, but not a show stopper at all. I'm on SS anyway and on my wife's insurance with Medical A. My work over the past decade was mostly sitting in my home office anyway, with only a few hours lecturing/teaching a week. So I didn't really have many friends at work, and none whom I saw socially.
But the time and space around me presently is pretty quiet. By that I mean mentally for the most part. So your retireent may include a long stretch of peace - a rare thing these days. That is, reflection time and time to slow down and stare at the clouds. Or something like that.
Anyway, yeah, this unknown time-remaining thing is pretty disturbing. Of course, making plans has always been somethig of a cosmic joke anyway.
es
neville93106 eric87817
Posted
Hello,
i have been on perfebidone for about 4 years. The condition is slowly getting worse, and I now think I will probably die within a year. But perfenidone (esbriet) slows the disease, and together with oxygen 24/7 makes life possible. I would not have a transplant even if eligible.
good luck.
eric87817 neville93106
Posted
Thanks for the update Neville.
I rather doubt I'll ever see 87, but hell, I never really imagined myself past 70. I am a bit cynical about my own life, but couch it in gallows humor.
At my age, I mean, 67 is no longer old in many respects as there are so many people now over that age, I am still straddling the fenfe on the transplant thing. I am trying to find some post-transplant people and friends/family thereof to get a sense of things. The Youtube videos are all about real recent transplants and tend to skirt the troublesome stufff. Although thre is one woman who is in her 60s or so who is incredibly grateful, and I envy that. I guess for me, just breathing is not enough, if you get my drift.
If you are interested in trading book titles in some way relevent to your's and my conditions let me know and I'll send you my email.
Later,
es
gloria2846 eric87817
Posted
Hello Eric,
im from Illinois and my husband had UIP. He was diagnosed with it 5-10-12. We were given a grim prognosis and basically told to get affairs in order. I read all I could on this disease and found out all I could about a double lung transplant. We went to Barne's Jewish Hospital in St. Louis, Mo. where my husband David and I went through all the appointments and information to receive the transplant. He made the list on 11-1-13 and we received the call to come immediately to have the surgery on 1-1-14. He celebrated 3 years out on 1-2-17 and is still doing great. In fact he goes back to Barne's in the morning for his on going appointments. My reason for writing you is to say YES it's worth the surgery. He would have died with out it. It is a wicked disease that worsens at an alarming rate. He was on 10 liters of oxygen at rest when we got the call and looked pretty bad. He is able to do most everything now that he used to and live a full and productive life. There is a lot of medication you will take forever and you will be told to avoid nursing homes, hospitals, anyone sick, etc. You will wear a mask in heavily congested areas, hospitals, etc. you will not eat at buffets and not eat unpasteurized foods, no live virus immunizations and you will get flu shots, pneumonia shots, take your temp each day, use your spirometer each day and wash your hands more than you ever had before but it all becomes second nature and the plus side or list? Well you won't need oxygen anymore, you will feel better, breath better, look forward to each day, watch your children or grandchildren grow up take care of your wife, partner, or whom ever you love and cherish. You will enjoy all your old hobbies such as fishing, boating, target shooting, hunting what ever. If you have any questions please ask. David has spoken to others who were waiting on the list or about to be placed on the list to answer questions. I have had my best friend for 3 more years and hope to get a lot more time with him because someone was selfless enough to be an organ donar. Don't give up and don't give in. IT IS WORTH IT.
eric87817 gloria2846
Posted
Gloria,
Thanks so much for your detailed description of the post transplant process. This is just the kind of information I have been looking for.
If I might ask a couple of specific questions:
1) While on the waiting list was it the case that you could not travel very far? I have found odd differences on this, one being a woman who had to take a commercial flight. I don't get that one.
2) One woman took around 20 pills a day and a man said 40 - which seemed rather extreme. I expect the number to go down some over time but could be wrong.
3) My "team" said that among the variables in selection for the actual transplant were whether the patient was too healthy or two sick. I'm going to have to follow up on that myself but wonder what your thoughts are.
4) I have read that post transplant still means many hospital visits. Same for you?
Thanks,
eric
gloria2846 eric87817
Posted
We had to stay close enough to reach Barnes Jewish in 3 hours time. We also had to live in St. Louis for 3 months after the surgery because we went to the hospital every day during that time. He had to have a designated care giver which I filled that need.
The amount of pills will vary person to person. When you get on the national list you must be sick enough to merit transplant which you already qualify for but stay healthy enough to survive the surgery. They will help you with this. Once on the list the decision as to who gets lungs next it goes like this: if the donor blood type matches and the size of his or her lungs match what you need and you are the worst in need at that moment you will be notified. Dave got the call 1-1-14 but by the time the organ reached the hospital and the team was ready as was the OR they began 1-2-14 around 1 AM. The surgeon sent someone to the surgical waiting room to talk to me and let me know he was half way through his surgery and then AS SOON as he was in ICU I was taken to him. He looked like a new man except for all the hoses tubes IV's and monitors but his skin was pink again and his lips were no longer bluish. He was released from the hospital in I think 8 days maybe 9 and said the pain was not near as bad as his back surgery. We headed home 4-1-14 and in the beginning he went back very frequently then once a month then every 6 weeks and now trying to go at least 2.5 or 3 months in between clinicals.
gloria2846
Posted
Also if you ever want to speak to Dave and I can give you our number privately just say the word. He is in St. Louis today well actually he is probably headed home by now. I'm at work but I'm sure he'll fill me in on his health tonight. Take care
gloria2846
Posted
eric87817 gloria2846
Posted
Later,
e
CherylH eric87817
Posted
Hi Eric,
You and I communicated awhile back on this site. Just wondering how you're doing and how things are going for you.
I hope you're doing well,
Cheryl
eric87817 CherylH
Posted
Hi again Cheryl,
What a pleasant surprise. Thanks for contacting me. I'm going through this thread to catch up on where we left off. Long thread.
Yeah, losing friends in retirement is so unfortunate. We grow up with friends, most of us anyway, go to school with them and then split up after high school. Go to college if we are lucky, make new friends, graduate, get married and lose all our friends again. Well, this is overstated somewhat but does seem the basic pattern from my perspective. I think that those who are very well off have a better chance of staying in touch as they can afford to travel. It is a guess based on observing the wealthy side of my wife's family.
I too exhibit few symptoms but for the oxygen and recurrent and unpredictable fatigue. Not terrible yet. My cough seems to be slowly increasing. I go to Stanford Medical June 14th to see if I make the list for the transplant. Funny that you and I and one other guy here seem to get the apprehension of it all. And like you, I do find the numbers rather unconvincing. But these doctors seem to love the idea and I think in part because they find personal gratification in their successes, even if they are fairly short lived. I mean, for now the transplant is the best they have to offer and I can't imagine many doctors saying "hell, maybe it's not worth it".
My decision will be put off until the last second it appears. I still a not satisfied with life after transplant with the meds and the precautions from infection and possible rejection anyway and more trips to the hospital, etc. etc. I can't find a face-to-face group around here that meets often enough. The only one I have found so far is not until September. I could be dead by then. Well, not very likely. But a lot could happen. So I brood some on this.
But overall, doing well. I am a brooder anyway. The problem is not having very many people in my life within reach.
Thanks again,
es
CherylH eric87817
Posted
Hi Eric,
Happy to hear from you again! I will be thinking of you on June 14th and hope everything goes your way. Speaking of getting the apprehension of it all, I don't think my spouse understands it entirely (or he is just hiding his head in the sand). However in his defense, the pulmonolist doesn't even describe it as a dire condition. He says each person has a different course (of course!). What he does fail to describe is just a general timeline of events. So, I have to read PubMed medical/ research articles to find out for myself. It is what it is, and we all try to carry on and live our lives.
Again, I will think of you on June 14th and hope for the best. Keep in touch.
Cheryl
eric87817 CherylH
Posted
Cheryl,
Are you on the "list" yet? Or still deciding?
Your doctor's stating the it isn't even a "dire" condition is a bit baffling. Is this diagnosis certain? CTs and all that?
I asked about what stage I am in. My guy hemmed and hawed a bit and said they use three stages and I am a definite two. BUT I DON'T FEEL THAT BAD! I feel like I am being a wee bit coerced into this. Maybe they just love to cut. Or see us as lab rats. Well, mice anyway.
When I go to Stanford next month I'm certainly going to ask more questions. Information for us seems spread out all over the internet and don't always match doctors's ideas.
Do you have any good links to people post-transplant for over three years?
I attached a graph for you that will no doubt just add to your/our perplexity. But interesting nonetheless.
Best, and carpe diem!
es
CherylH eric87817
Posted
Hi Eric,
I am not on a transplant list. Following is how I was fairly recently diagnosed with pleuroparenchymal fibroelastosis (PPFE): primary care MD heard rales in my lung for about a year. During that time period, I had to have a chest X-ray for another reason, and that showed some scarring in the upper lobes. Months later primary care doc decided I should have a chest CT to get a baseline. Well, that happened to show more than what we bargained for, and she recommended seeing a pulmomlogist . When I read the CT scan report ( before seeing pulm.), the had radiologist had diagnosed it as PPFE. I read about ithe condition before my appointment with the lung guy and realized that it is a progressive disease for which there is no treatment. Pretty much the same as IPF. When I saw the pulmonologist, and he said it is likely PPFE, I mentioned that I read there was no treatment. He said there is always lung transplantation. Since PPFE is a newly described lung disease, I don't think they know what to do, other than wait a year and have another CT and PFT to see if and how much it has progressed. If it is progressing much, I think we will begin making a plan. I also think the U.K. folks are way head of the USA folks in their diagnosis and understanding the disease.
Thanks for sending that chart. I have read that the average survival is 5 years, but the chart seems more optimistic.
By by the way, not sure I have mentioned this before, but I work at a fairly large mid-western University in the college of medicine, and we are connected to a teaching hospital. We also do a whole lot of basic science research and translational research (from the bench to the bedside), and my doctors are all teaching and practicing physicians. Fingers crossed that they are up to snuff on diagnosis, treatment and prognosis.
Anyhow if if you ever have a chance and have an interest, Google PPFE. Many articles say it is a rare condition, but on the other side, some say it is under diagnosed and maybe not as rare as originally thought. It is definitely a pulmonary fibrosis condition, and mine is most likely idiopathic.
I do feel like I am currently in limbo with the wait and see approach, even though everything you read states that it progresses, and we all know how that ends up.
Well, this message went on longer than I planned
. I hope you don't mind if I follow up with you from time to time to see how you are doing.
Please take care and best wishes,
Cheryl