1. < Lung Health

I had a Lung Biopsy that shows Macrophages. More below

Posted by guyjeff123 @guyjeff123, May 22 1:18pm

After I had CT Scan on 3/19/2025, it showed 1cm spiculated node in RUL and several other 4 and 5mm nodes in both upper lobes. ! lit up during PET scan in RUL and 2 in LUL. There were many scattered 4 and 5mm nodes on CT Scan. I had a biopsy a few days ago, and the RUL did not report as malignant. They haven't released the diagnosis of the node biopsied in LUL. They did however find profuse mucus plugs that I have been coughing up 15-30 times per day. Also, Under Fine Needle Aspiration they found bland respiratory epithelial cells and pigment-laden macrophages in left upper lobe and in the RUL they reported RARE pigment-laden macrophages in RUL. The pigment in both macrophages is Ferritin. I was overloaded with Ferritin by a reckless doctor who didn't check my ferritin level until after the 13th and final iron infusion. My ferritin level before starting iron infusions was 49ng/ml. At the end it was 2119ng/ml. The body doesn't naturally get rid of ferritin, and I am not a candidate for Chelation therapy or Phlebotomy due to only having 1 kidney and it's only functioning at 51%. Previous biopsies have found ferritin in my bone marrow, large lymph nodes in my lungs and a severe amount in my liver. Does anyone know of any other therapies for morbidly high ferritin? Ferritin levels as high as mine deposit itself in organs and cause death from multiple organ failure, which is a horrible way to die. Unfortunately, that's what I am facing. Scared and helpless !

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dlydailyhope | @dlydailyhope | May 23 8:38am

@guyjeff123
I am so sorry to hear about this error! What are your doctors doing to quickly reduce your ferritin levels in your body? Have you been put on a strict iron free diet to help some? Are you working with a nutritionist/dietitian to help you with diet/supplements to help remove iron/ferritin from your body as quickly as possible?

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1 reply
dlydailyhope | @dlydailyhope | May 23 8:50am

@guyjeff123
Here are some supplements that you can review with a nutritionist/dietitian to help naturally chelate iron from your body.
https://hemochromatosishelp.com/hemochromatosis-supplements/

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guyjeff123 | @guyjeff123 | May 24 8:24am
In reply to @dlydailyhope "@guyjeff123 I am so sorry to hear about this error! What are your doctors doing to..." + (show)
@dlydailyhope

@guyjeff123
I am so sorry to hear about this error! What are your doctors doing to quickly reduce your ferritin levels in your body? Have you been put on a strict iron free diet to help some? Are you working with a nutritionist/dietitian to help you with diet/supplements to help remove iron/ferritin from your body as quickly as possible?

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I met with my Nephrologist last week and when I brought up the Ferritin , she basically deferred the question. It was as if she knew my body couldn't take the only two protocols that are used to reduce ferritin levels and she didn't want to discuss it. Then yesterday, I met with one of my Oncologists, he's also a Hematologist, and he just doesn't believe I can have another phlebotomy, due to the last one dropping my Hemoglobin and RBC's dangerously low. He thinks the same about any chelation therapy drugs. He did say that he believes it will take years for the ferritin to start shutting down my organs. I believe I have good doctors, but they can't feel what I'm feeling daily. And, I think the ferritin is moving much more quickly than they seem to think. Than you @dlydailyhope.

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 27 4:54pm
In reply to @guyjeff123 "I met with my Nephrologist last week and when I brought up the Ferritin , she..." + (show)
@guyjeff123

I met with my Nephrologist last week and when I brought up the Ferritin , she basically deferred the question. It was as if she knew my body couldn't take the only two protocols that are used to reduce ferritin levels and she didn't want to discuss it. Then yesterday, I met with one of my Oncologists, he's also a Hematologist, and he just doesn't believe I can have another phlebotomy, due to the last one dropping my Hemoglobin and RBC's dangerously low. He thinks the same about any chelation therapy drugs. He did say that he believes it will take years for the ferritin to start shutting down my organs. I believe I have good doctors, but they can't feel what I'm feeling daily. And, I think the ferritin is moving much more quickly than they seem to think. Than you @dlydailyhope.

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@guyjeff123, I have no experience in this area, but I can let you know that I'm thinking of you and was following your story from the lung nodule perspective. I hope you find some answers soon. I know you said that you trust your team. Sometimes another set of eyes and smart brains on the complex problems can be helpful. Does this warrant a second opinion? Did the pathology come back from the other biopsy yet (LUL)?

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1 reply
guyjeff123 | @guyjeff123 | May 27 9:03pm
In reply to @lls8000 "@guyjeff123, I have no experience in this area, but I can let you know that I'm..." + (show)
@lls8000

@guyjeff123, I have no experience in this area, but I can let you know that I'm thinking of you and was following your story from the lung nodule perspective. I hope you find some answers soon. I know you said that you trust your team. Sometimes another set of eyes and smart brains on the complex problems can be helpful. Does this warrant a second opinion? Did the pathology come back from the other biopsy yet (LUL)?

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Not yet. Nor have some cultures that my Pulmonary doctor is waiting on. I don't think he was able to get a large enough piece of the left pulmonary nodule based on his comment, "There were a lot of blood vessels around the node in the left upper lobe, and I couldn't get a forceps on it." I saw my Oncologist last Friday and he wasn't able to give me any information except something he said about the Macrophages and I didn't understand that. Last night I had a bad night. At 3 a.m. I woke up coughing up large mucus plugs and I couldn't take a breath without coughing. This went on for about an hour and I finally fell back asleep. When I woke my throat was hurting and I couldn't hardly swallow anything. This lasted most of today. I pray it doesn't happen again tonight. I have so many comorbidities and I'm scared my team are not communicating with each other. I don't know what to do and I feel all alone. I don't even know my next steps. I'm very depressed right now.

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 29 4:11pm
In reply to @guyjeff123 "Not yet. Nor have some cultures that my Pulmonary doctor is waiting on. I don't think..." + (show)
@guyjeff123

Not yet. Nor have some cultures that my Pulmonary doctor is waiting on. I don't think he was able to get a large enough piece of the left pulmonary nodule based on his comment, "There were a lot of blood vessels around the node in the left upper lobe, and I couldn't get a forceps on it." I saw my Oncologist last Friday and he wasn't able to give me any information except something he said about the Macrophages and I didn't understand that. Last night I had a bad night. At 3 a.m. I woke up coughing up large mucus plugs and I couldn't take a breath without coughing. This went on for about an hour and I finally fell back asleep. When I woke my throat was hurting and I couldn't hardly swallow anything. This lasted most of today. I pray it doesn't happen again tonight. I have so many comorbidities and I'm scared my team are not communicating with each other. I don't know what to do and I feel all alone. I don't even know my next steps. I'm very depressed right now.

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@guyjeff123, Sometimes they don't get what they need from the biopsies. That is frustrating, when we just want answers. It happened to me once. That second nodule may be that way too.
I hope you are able to get some relief soon. Not sleeping well can only hurt; your healing, and your outlook. Are your doctors under the same health system umbrella? They may be coordinating behind the scenes. Thinking of you, hoping that you had a better night.

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1 reply
guyjeff123 | @guyjeff123 | May 31 9:17am
In reply to @lls8000 "@guyjeff123, Sometimes they don't get what they need from the biopsies. That is frustrating, when we..." + (show)
@lls8000

@guyjeff123, Sometimes they don't get what they need from the biopsies. That is frustrating, when we just want answers. It happened to me once. That second nodule may be that way too.
I hope you are able to get some relief soon. Not sleeping well can only hurt; your healing, and your outlook. Are your doctors under the same health system umbrella? They may be coordinating behind the scenes. Thinking of you, hoping that you had a better night.

Jump to this post

Thank you Lisa. I spent about 45 minutes yesterday with my Pulmonary PHP. She's the one I see most often. She took more time with me than she normally does and did her best to answer a lot of my questions. When she took my blood oxygen level while I was sitting down, my O2 was 99 and my pulse was 68. She then said let's go for a walk with the oxygen sensor still attached and she had something plugged into it that she held. We didn't walk for more than 5 minutes and I'm guessing about 50 or 60 steps. As we were walking my O2 reading dropped to 88 and my pulse went up to the 90's. She Acknowledged that I had a whole lot of mucus plugs in my lungs and they were interfering with my airway, especially upon exertion. She prescribed Augmentin 875 and a 3% salt solution for my nebulizer, as well as a "puffer" for me to exhale into, that 's supposed to break up the Mucus. No results from the left node. It was too small. She stated there is no evidence of malignancy, and they're going to follow me closely over the next few months. So, at least for now, I'm very happy no cancer was found.
Thank you Lisa @lls8000

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jun 1 10:30am
In reply to @guyjeff123 "Thank you Lisa. I spent about 45 minutes yesterday with my Pulmonary PHP. She's the one..." + (show)
@guyjeff123

Thank you Lisa. I spent about 45 minutes yesterday with my Pulmonary PHP. She's the one I see most often. She took more time with me than she normally does and did her best to answer a lot of my questions. When she took my blood oxygen level while I was sitting down, my O2 was 99 and my pulse was 68. She then said let's go for a walk with the oxygen sensor still attached and she had something plugged into it that she held. We didn't walk for more than 5 minutes and I'm guessing about 50 or 60 steps. As we were walking my O2 reading dropped to 88 and my pulse went up to the 90's. She Acknowledged that I had a whole lot of mucus plugs in my lungs and they were interfering with my airway, especially upon exertion. She prescribed Augmentin 875 and a 3% salt solution for my nebulizer, as well as a "puffer" for me to exhale into, that 's supposed to break up the Mucus. No results from the left node. It was too small. She stated there is no evidence of malignancy, and they're going to follow me closely over the next few months. So, at least for now, I'm very happy no cancer was found.
Thank you Lisa @lls8000

Jump to this post

@guyjeff123, I’m so glad that you were able to spend some time with your pulmonologist. Just having some info, and some action, has to help.
One day at a time, I hope you are feeling better about all of this, health issues are not easy to navigate on our own. Hugs.

REPLY
1 reply
hurdgal | @hurdgal | Jun 1 12:11pm
In reply to @lls8000 "@guyjeff123, I’m so glad that you were able to spend some time with your pulmonologist. Just..." + (show)
@lls8000

@guyjeff123, I’m so glad that you were able to spend some time with your pulmonologist. Just having some info, and some action, has to help.
One day at a time, I hope you are feeling better about all of this, health issues are not easy to navigate on our own. Hugs.

Jump to this post

How about consulting with a functional medicine Dr? Perhaps they would be able to figure out some protocol that could help reduce the ferritin (nutrition, supplements, etc). These drs. take a more holistic approach which could be helpful.

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guyjeff123 | @guyjeff123 | Jun 1 5:44pm

Thank you @hurdgal... My closest friend is heavy into supplements and actually bought me quite a lot of them after talking to his support. There were 4 or 5 that are natural chelators and others that are supposed to help with low Hemoglobin and red blood cell counts, but when I discussed them with my nephrologist, I only have 1 kidney and it's not functioning well, she told me not to take them. She stated they would be too hard on my kidney. It seems I'm darned if I do and darned if I don't.

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