Dangers of Excess Iron

[Shaw Jennings]

Hi Charlene,

I can’t help but think that you are pursuing a lung transplant and, if so it’s understandable based on the Stanford study, that you would be very concerned about your need to take iron supplements.  I also imagine there must be a way to maintain at least minimum iron levels without creating the study’s referenced aspergillis problem.  No doubt you will discuss this with your doctors and possibly keep us posted on their comments.

Recently, I was encouraged to consult with a local lung transplant group, which I hope to do in the next few weeks.  At my age, I am thinking that I may be a poor candidate; however, I was told I should at least start the conversation while I am still in a reasonable condition.  Your discussion about potential elevated levels of iron have me concerned as I have high levels of feratin (iron) in my system and peridodically must have phlebotomies to bring my levels back into a normal range.  Similar to you, I am now concerned that my issue may pose a problem, adding to me being a poor candidate.  Nonetheless, I will still explore the possibility and will let you know what I can about our iron issues from our local experts.

Best regards,

Shaw

[Charlene Marshall]

Hi Shaw,

Thanks so much for contributing to this thread, I was thinking it might not have been an interesting topic to others but it did have me very concerned so I’m thankful you read and contributed to it. Yes, I will be pursuing this, although not quite yet. That said, because it will be in my ‘not too far away’ future, I do want to have a conversation with my Doctors about this as I don’t want to have excessive iron in my blood when the time comes. I do take Feramax 150 which is an iron supplement at the recommendation of my Doctor and have been for quite some time now, so this is something I’ve definitely made note of to speak with her about. I will keep you updated on any conversations I have with my respirologist about this. I see him again in April so I will make sure I bring it up. They originally didn’t know why I had such low iron stores (and now vitamin D stores as well) but I suspect they didn’t know about the impact it could potentially have in lung transplant patients, or they wouldn’t have put me on this. Not sure, I suppose it is a newly released study though so I’ll have to see what they say…

That sounds like a good group to connect with Shaw, is it a group through your local treatment facility? Is it people post-transplant, or others pre-transplant as well? Sorry for all the questions, I just find the topic of support groups fascinating because I did my Masters thesis on the importance of psychosocial support throughout critical illness and one focus was on support groups and the dynamics that go into making them successful or not. I might have already shared this, and if I did, I apologize. The question about iron stores would be good to bring up to not only your medical team but potentially this group as well, and obtain their thoughts on whether or not this is something they also experienced. Please do keep me posted and I will share any findings with you as well.

I hope you are doing well!

Cheers,
Charlene