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Lung Biopsy To Diagnose PH
I believe it is rare that a doctor recommends an open lung biopsy in PH patients but I have heard of it being done, especially in young children. My son has only had one post transplant because it is a way to check for rejection in the transplanted organ. What I have read is that a lung biopsy is sometimes done on PH patients to check for a possible secondary cause of the disease.
Have you ever had a lung biopsy and if so, was this done when you were an adult or as a child? What were the reasons given for proceeding with this surgery? What information was gained from doing the lung biopsy?
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29 Replies
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Hi @Debbie Moore, here’s one topic about lung biopsy. I did see a few others and will tag you on those topics, too.
How about our newer members? Have you or your loved ones had a lung biopsy? If so, please share your experiences with those like Debbie. She’s planning to have hers to hopefully find the reason behind her need for high oxygen levels.
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I know of no PH patient that received a lung biopsy and I do remember hearing, many years ago, that a test like that could be very dangerous. That’s purely anecdotal, however.
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I was told it was high risk. Makes it very difficult to decide if I should do it or not.
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Do you ever get the feeling your being used as a test case for the learners. I did in the end when they were trying to find out why I could not breathe so to speak at a large teaching hospital with lots of overseas doctors doing research. One of the many scans showed a lump in one of the lower lungs and a biopsy and lung flush performed . Nothing there to worry about. I ended up overnight in hospital having a blood and iron transfusions. Crikey ! what did they do ha. For another condition I had prior to my breathing issue agreed to. Lovely Swiss Doctor who was there conducting research on my GCA. It was good they took blood every four hours for a day and I got free parking .breakfast, lunch and dinner. Never got results as she went back to Basle.
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@Terry did this happy before you were diagnosed with PH or after? Teaching hospitals are a necessary evil I suppose but it can be unnerving when they are using patients as “homework”. My son has been cared for at a teaching hospital and the protocol was the pre-med “student” would come in and look over Cullen, ask questions, make their diagnosis and plan, but a seasoned doctor always came in after to evaluate and give approval on decisions made. Did they do this for you?
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Before Colleen. They were trying to discover why I said could not breathe. What had them tricked was that my lung capacity was above normal for my age but point me at a flight of stairs or slight incline and I was stuffed . Mind you despite me telling them my breathing issue was such they never tested me under stress . Oh well I know my cardiologist who had performed lung transplants there subsequently enlightened them .
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Wow, @Terry, yeah, it sounds like you were the “guinea pig,” as some say. But as @Colleen mentioned, teaching hospitals are a bit like steroids, a necessary evil. Some of my best doctors have also been and still are at large teaching hospitals.
Mate, you mention tricking the doctors. I thought you tricked everyone. You’re quite the jokester. 🤣
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Did they ever find out about why you can’t breath? Or did they just say it was PH?
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Sorry for late reply . My breathing issue was due to PAH which was identified by my cardiologist at a later date .
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The doctors are stumped. Whatever is causing my breathing problem, it is probably the reason I have PH. The biopsy is the last test to find out. I meet with the thoracic surgeon on the 25th. From there we set up the surgery. I’m not as nervous as I was before. I’ll let y’all know how it turns out!
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@Debbie Moore I’m confused by them saying whatever is causing your breathing problems is likely what has caused your PH. Are they certain your breathing challenges isn’t the PH itself? I will keep your surgery in my prayers. Please keep us updated when you feel up to doing so.
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@Colleen-Steele They know I have PH. No one knows what has caused me to have it, so idiopathic PH. My breathing problem was not caused from PH. They are just guessing that whatever is causing my breathing problem is the reason I have PH. We believe that breathing issues came before the PH. All I know is my breathing is getting worse. PH isn’t my main concern anymore. I’m at 8 liters now and it gets worse every year. I was able to use my Inogen to go out and about, and now that is becoming difficult. I can’t imagine being homebound. However there is no guarantee whatever they find will be treatable. I need to know I’ve turned over every stone. I appreciate the prayers, specifically that answers come from this biopsy.
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@Debbie Moore I am so very sorry you are going through this! Being seriously ill is awful but I’m sure not knowing why makes it that much more horrible. I am praying for you!
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Oh no, @Debbie Moore. Yes, it sounds like your breathing issues have worsened, and I’m so sorry you are going through this. Still, with no clear answers, it is so frustrating. Eight liters would be challenging to leave the house for long periods. Are you taking larger O2 tanks with you as you leave the house for appointments, etc.?
I hope and pray the thoracic surgeon later this month will have some ideas, at least of the cause of your breathing issues and PH. My thoughts and prayers continue to be with you. Thanks for sharing the updates, and please update us after the 25th.
🤗🙏
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I’m having the surgery August 9th. I’m excited. I may or may not find out why I can’t breathe but it is the last thing I can do to try and find out. The surgeon has explained to me all that can go wrong and what he will be prepared to do. I feel confident that the surgery will go well. I will have to stay a few days in the hospital until I can breathe on my own. If you love the Lord, please send up a prayer that conclusive results will be achieved.
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Oh my, sweet @Debbie Moore, it sounds like you and the surgeon are on the same page, and you are prepared. But please know we are here sending you extra love and prayers, especially on the 9th of August while you’re in surgery. I know you, too, want to see the cause of your breathing issues, and prayers will offer that information.
Please update us when you can, although I know recovering is the priority, my sweet PHriend. Let us know how we can best support you with extra love, hugs, and prayers.
🙏
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Surgery was cancelled due to Hurricane Debby. I now am to have it on Thursday, August 15th.
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Aww, did you have any damage from Debby, @Debbie Moore ?
I’m hopeful for your surgery. But I’ll be traveling all da, Thursday, for the conference. But I am wrapping my arms around you and porayers that all goes well. Please update us when you are feeling up to it. 🙏
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I had my biopsy and everything went great. I started breathing on my own, so the ventilator did not have to stay in. I thought it would be up to a 4 day stay in the hospital, and I was out the next day. God heard all the prayers and blessed me survival and quick healing. The results I’ve received so far is that I have PAVM – pulmonary arteriovenous malformation. It is when your arteries and veins in you lungs twist and knot blocking air from going to the alveoli to make oxygen. At least that is how I understand it. Usually it is one mass someone would have, but I have several. I’m not sure what the plan is moving forward. Waiting for an appointment with my pulmonologist.
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Thank God for the answered our prayers for you, my PHriend, @Debbie Moore! 🙏
I bet you are thrilled that you started breathing on your own so quickly and went home the following day! Wowzers! 💐When you see the pulmonologist, ask him about a possible relationship to hereditary hemorrhagic telangiectasia (HHT.). HHT can lead to PH, and I believe we have some topics about that. I’ll look and tag you if I find a few; you may find them informative.
Do you know when your appointment will be yet? Please do keep us posted as we want to support you with all of this. You getting some answers is helpful, I know. 🤗
Take care and know you’re in my thoughts and prayers. 🤗🙏
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@Debbie Moore thank you for updating us! I’m so relieved to here the biopsy went well. Getting answers is the first big step and I’m so glad you received them! I will pray for the doctors to come to the best decision in dealing with this and that it won’t be too hard on you.
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No appointment yet. I called and was told Jan 23 was the first available or they could put me on the waiting list. I told them never mind and I messaged the doctor directly. I’m sure I’ll hear from her next week.
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Hi @Debbie Moore , Way to speak up and contact your doctor about an appointment. January is way too long for you to wait. So, let us know once you hear from him.
Hugs and extra prayers that it will be much sooner.🤗🙏
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I did a video chat with the doctor. They don’t know what to do. There is another patient with similar symptoms and he/she is being treated with infusions for HHT. So I am willing to give it a try. I only have one symptom of HHT, so they aren’t classifying it as such except maybe for insurance. My other options are do nothing and continue to get worse with my breathing or have a lung transplant. I didn’t like the statistics on the transplant so I’ll put that off as long as I can. She needs to refer me to the hematologist, get on his calendar and get insurance to cover it. So far no word from pulmonologist or hematologist. I’ve messaged her, but no response yet. I did receive a message that she will no longer do clinic after the end of this year. I really like her and will be assigned another doctor. For now it is a waiting game.
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Hi @Debbie Moore , I’m sure you’re finding this fascinating yet somewhat frustrating, so sorry, my PHriend. But I know you’ve waited so long already, and I think seeing the hematologist and trying the HHT treatment, if it helps, would be a win! I have heard others say, “I don’t care how you classify it, but if it will help and insurance will cover it, I’m with you.”
As you wait, please know we are here for you as you hear more and learn the next steps. Hopefully, they will get you in soon and get this all started. How are you managing mentally and emotionally with all of this?
It’s interesting that they only offered this HHT treatment and a transplant. Although transplants have made so many advances, I would like you to try the less invasive treatment first. Extra gentle hugs, love, and prayers are coming your way, my PHriend. 🤗
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@Debbie Moore I’m hoping you are given the chance to try the treatments. Yes, the transplant statistics aren’t great but many have surpassed them. My son is 10 years post heart and double-lung and doing well…KNOCK WOOD! If you start to consider transplant more seriously feel free to ask me any questions you might have.
If it’s an option, going through the long process of being accepted for transplant is good to to before you need to be listed. That is what my son did…all the testing and process was ready when he was. Just something to consider.
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Hi @Colleen , thanks for sharing your experience with Cullen’s transplant with Debbie. You are always so kind to offer your time and experiences with others.
The note you added about being ready in advance for transplant, is an excellent suggestion. And this is something that m,any wouldn’t think about.
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@Debbie Moore I was just reading some of your posts. Where are you seen for your PAH? It is puzzling that they are having a hard time making the diagnosis of HHT. Most physicians that are knowledgeable about HHT can make the diagnosis clinically. Do you and/or your family members suffer from nosebleeds? The vast majority of people with multiple PAVMs will end up having HHT and the genetic testing can generally confirm or make the diagnosis in over 95% of cases. As more than half of HHT patients are anemic, this is important to address if needed as the anemia can significantly worsen heart failure in the presence of PAH. All of the PAH meds tend to make HHT bleeding worse with the PDE5 inhibitors being the worst for bleeding. Newer medications like Avastin can address this issue if needed.
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Hi @Scott , thanks for your informative reply to our PHriend, @Debbie Moore . I am sure she appreciates you sharing your experience and knowledge about HHT. It makes sense that those with anemia would find themselves worse after starting PH treatments, primarily because they dilate the blood vessels.
How are you doing lately? I haven’t seen you in the forums in some time.
Debbie, how have things been with you? How was your Thanksgiving?
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