Tagged: surgery; PF; quality of life
- This topic has 14 replies, 12 voices, and was last updated 2 months ago by William E. Shotts.
February 10, 2023 at 1:12 am #34371GratefulDebParticipant
I have been symptomatic since 2008. Yes! You read that right. I’ve recently received the dreaded PF diagnose and am on oxygen 24/7. My lungs are severely scarred and fibrotic. My other organs are now been effected by the PF. My heart is enlarged, I have a mass on my liver and my kidneys are having issues. A transplant surgeon wants to do a biopsy on my lungs. I do not see the advantage of having this done. I do not see how this could possibly give me a better qualify of life. The surgery is being done by a transplant surgeon because the cardiothoracic surgeon says I am too risky a patient for him to perform it. It would be invasive and I would have to be intubated and of course, extubated. They are worried (and I am as well) about the extubation process where I could potentially end up needing a tracheostomy.
My question to all of you is this……should I have the surgery or not. Either way I will still be on oxygen and my illness will continue to progress ending in death.
February 10, 2023 at 9:49 pm #34384MargaretParticipant
Is the biopsy being done to see if you would be eligible for a lung transplant? If so, the risks might be worth it for you. My pulmonologist told me he recommends biopsies only if they will be used to determine treatment because of the risk involved. Good luck with your decision.
February 11, 2023 at 10:28 am #34385john stylesParticipant
Does not sound like you are getting correct advice, I would first have a lung transplant surgeon review the information you have which may not qualify you for their transplant, a major transplant hospital would be prefered. I had a well known lung doctor specializing in lungs at a major hospital tell me he would not of gotten the biopsy ordered by another pulmonary physician which turned into a tracheostomy which is a difficult operation and one to avoid,
February 12, 2023 at 1:20 pm #34392ChrisParticipant
I read somewhere that there is a slight risk of biopsy triggering exacerbation. But this is a question for at least 2 docs, if they don’t concur, maybe get an appt with a 3rd. When I get bad, if I were told a lung transplant were dependent on a biopsy, obviously that weighs heavily in favor. But I would ask “if you’re removing my lungs anyway, why biopsy them?” I have a great pulmo, but before anything major I’d find another great pulmo and run it by them as a second.
February 14, 2023 at 2:09 pm #34402GratefulDebParticipant
That’s exactly my fear, Chris. I read somewhere that there is a slight risk of biopsy triggering exacerbation
February 14, 2023 at 2:57 pm #34413Stan MetcalfParticipant
I was diagnosed with IPF about seven years ago, and was doing fairly well. My pulmonologist was ordering frequent pulmonary function tests, lung scans, etc. During one scan about three years ago, they noticed a small spot that looked suspicious and ordered a biopsy. They removed a small bit of tissue from my left lung, and it turned out to be cancerous. And a few days later removed part of my left lung.
On top of IPF, losing part of a lung really set me back!
But it turned out that I was very lucky that I had IPF which meant that my lung function and disease progress was being checked regularily. I know of several other people who were diagnosed with lung cancer at about the same time, and they are all dead now. They spotted my cancer very early, when it could be completely removed. They never would have found it so early otherwise.
I was on oxygen full time for the next few months but gradually weaned myself off of it. And I’m stable and doing better than expected.
So, if a biopsy is recommended, I would follow their recommendation. I’m alive today because I did! And I expect to be around, enjoying life, for a ling time!
February 14, 2023 at 4:22 pm #34422MarkParticipant
I was diagnosed in 2016, the first thing the doctor wanted to do was a open lung biopsy.
no CT scan, no PFT.
as I researched everything I could about this surgical procedure. I asked the following questions
would my treatment change?
would it change the diagnosis?
then help me understand, I have compromised lungs, you now want to cunt into the body, in several places, cut into the lungs, again in several places. For what?
if this was to see if transplant was to be considered, that would be a different story.
move to different state, now different doctors, they take, high resolution CT scan is what they prefer, because it is not invasive to the body, no chance for infections, no long term recovery time.
I chose not to do the surgery
and now 2023, just now started oxygen during activities, just now considering antifibrotic medications.
February 14, 2023 at 6:44 pm #34426Judy JohnstonParticipant
Personally, I would not have it done. It is invasive and could create more problems. I am surprised it took so long to diagnose the PF. So sorry!
March 1, 2023 at 9:58 am #34516Denise StogdillParticipant
Unless it’s absolutely necessary I would not do it. I had one last year to determine the type of fibrosis I had. Although I did not experience exacerbation, it was extremely painful and invasive. We did confirm that I had IPF and not NSIP which was the original diagnosis I had gotten from a previous pulmonologist. This was terribly important because my treatment plan became totally different. I do not have any other organ issues like yourself. The first three days after I was in so much pain there was no pain medicine that could level it off. They gave me too much pain medicine and my blood pressure dropped to the point that I coded. After the third day, I felt like the pain was manageable. Get a second opinion if you can.
March 1, 2023 at 11:39 am #34517ChrisParticipant
Hi Denise, how did your treatment plan change with the diagnosis from the biopsy? I didnt even think there was much treatment options beyond monitoring, ofev/esbriet and oxygen if needed? But I’m new to this and we dont know what caused my PF yet.
March 21, 2023 at 8:38 pm #34692Denise StogdillParticipant
Hi Chris, the way my pulmonologist explained it to me simply is as follows: if you have pulmonary fibrosis that is being caused either by Gerd or an autoimmune disease, like rheumatoid arthritis, they focus the treatment on the autoimmune disease or Gerd. Doing that will stop or slow the cause thereby slowing down the scarring. However, if you have idiopathic pulmonary fibrosis, they treat the fibrosis with anti fibrotics. The other type does not require you take anti fibrotics like Ofev or Esbriet. I was originally diagnosed NSIP, they did the lung biopsy and the pathogen identified my fibrosis as IPF. They were treating me incorrectly.
March 2, 2023 at 2:14 pm #34520LaurieParticipant
Hi Denise, If I were in your position I would not have it done. I have been sick since 2005 with chronic bronchitis/broncheactesis now pulmonary fibrosis diagnosed by ct scan 2 years ago.
As my shortness of breath and fatigue increase my deepest anxiety is about the next and final chapters. How do I want to live my limited life? My personal health goal is to stay out of the hospital. And to ask for comfort care whenever possible.
The risk of extubation trauma would be another strong factor in my decision.
You are stronger than you know and I support whatever you choose to do.
March 21, 2023 at 5:22 pm #34689Maria DonihooParticipant
I had an open lung biopsy (December 14, 2022) because my doctor said he had to know how to treat my IPF. I wish I would have gotten a second opinion! I am still in pain from the surgery and my breathing seems to be worse! It doesn’t matter what kind of IPF you have because there’s only two different medications to treat it and they are similar (Ofev and Esbriet). I regret having that surgery because it’s been so hard on my body! Think really hard about the decision to get the surgery for your own sake! I wish you all the luck with your decision! Take care and God bless!
March 23, 2023 at 2:13 pm #34700Adele FriedmanParticipant
It’s hard to see what good a biopsy would do at this point. There seems to be ample evidence that you need a lung transplant, if you are eligible and want to do it. Would this surgeon be the one doing the transplant? I rather hope not, because I’m deeply wary of doctors suggesting lung biopsy (or any other risky, invasive diagnostic procedure) without it doing much to change treatment. Biopsies are being done less, with all the other tests available-still some cases where it may be needed, such as determining treatment for lung cancer. I would ask for the reasoning. Second opinion, for sure! Good luck.
March 23, 2023 at 5:26 pm #34710SallyParticipant
I would be concerned about the mass on your liver and whether or not it could be cancerous. Could they do a non-invasive biopsy on that first? I did have a biopsy in 2014 but it was also (as a couple above) to determine if I had NSIP or IPF. I had been diagnosed with NSIP and the prescriptions for that include prednisone at first and then CellCept or aziathioprine next. I had bad reactions to the aziathioprine – hair falling out and laryngitis . I had IPF determined from the biopsies and two pathologist. Now they say just having an HRCT can determine IPF, although it didn’t for me, and I presume others if they aren’t 100% positive from the HRCT. I am also surprised that a cardiothoracic surgeon turned it down. Basically that is what a transplant surgeon is. I would get at least one more opinion – one that would include effects on the liver and heart if done.
March 25, 2023 at 4:35 pm #34741William E. ShottsParticipant
I agree with the numerous comments urging caution when considering a lung biopsy. I received a diagnosis of IPF in October of 2020. My pulmonologist and I began the discussion of treatment. One of my concerns at that time was “are you sure of the diagnosis” to which my pulmonologist replied “the only way to be absolutely sure is to have a lung biopsy”. After discussions with family and my primary care physician I decided to have the biopsy using the VATS procedure. The procedure went well but I did have significant pain and discomfort. I did spend three days in the hospital recovering. Once the drain tube was removed and I was managing the pain I was released to go home for the rest of my recovery. I had no significant or lasting side effect from the procedure.
I don’t want anyone to get the idea that I am recommending the procedure. I am saying that having or not having the procedure should be a personal decision made following research, consolation with family, and in my case “prayer”. God bless any and all of you considering a biopsy.
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