About 2 and a half years ago my friend got ill. She was breathless and coughing up blood. Pregnant at the time, it was put down to rupturing of small blood vessels in the lungs due to the strain of pregnancy, but she didn’t get better.
Earlier this year Marie became so ill she was hospitalised. After having had numerous courses 0f strong antibiotics over the winter due to what they had finally diagnosed as pneumonia, her immune system was weak. They did test upon test and had suspicions that Marie may have Pulmonary Haemosiderosis, but it was difficult to be certain.
When Marie could not breath, was in pain and coughing up blood constantly it was confirmed. She was given blood transfusions, filled with steroids and on morphine and constant oxygen and we were scared. When I visited her she looked frighteningly ill, but she smiled, chatted, and joked as she always does. She was a 32 year old woman on a lung patient ward and all the other patients were generations older, but she made the best of it and made some friends. When her two little boys, C (now 4) and F(now one) visited with their Daddy it cheered the whole ward up, but I have to admit it was hard to see her there.
It turned out that this time Marie did have pneumonia on top of the Pulmonary Haemosiderosis, and they later informed her that if she had not come in at that time it is likely she would have bled to death. When she was leaving and asked if she could take oxygen home they said no, but only because if she needed oxygen again she needed to be in hospital. Her x-ray showed her lungs were full of blood and if she’d not responded as she did to treatment there was nothing else they could have offered.
It sounds mad doesn’t it? But Pulmonary Haemosiderosis is very rare, especially in adults and its causes are not known. Apparently one person is diagnosed every three years in the UK. When Marie contacted the British Lung Foundation to find out if there were any support groups, the lady she spoke to, who had worked there about 22 years, had never come across it. She vowed to find out more for Marie and has been lovely but it seems a huge task. When you do a google search on this illness it comes up with 8,800 hits. That is it. When you start reading through them, even the first, the best matches, yield little information.
One doctor describes it as;
‘…a devastating condition. Characteristic of this condition is the accumulation of protein-bound iron in the lungs, a consequence of repeated bleeding in the lungs, coupled with inflammation and fibrosis. Ultimately this condition is usually fatal.”
Scary isn’t it?
Marie has responded fairly well and they are slowly lowering her steroids, but her pain level has not decreased since March. She takes morphine and many other strong pain killers but she is still constantly in agony and at times can barely move about, torture for a young mum of two small children. Her consultant, who declared early on she was ’such an interesting case he keeps her file on his desk’, has been fantastic, but he cannot tell her much as there aren’t a million case studies on this disease. The one possible course of treatment is going well, but steroids themselves are damaging and as for the pain, all he can say is ‘wait and see’. The lungs have been damaged so much that it will take time for them to heal themselves but he is confident they will improve.
So why am I telling you all this?
Well one thing that would really help Marie would be to be in touch with other sufferers. We know there must be more people throughout the world who have this condition but we are at a loss as to how to find them. It would be good to know if others have received different treatment, or responded well to alternative therapies, dietary changes, exercise. It would be good to know she’s not alone.
So, if you know of anyone who has this illness please get in touch, and if you have a minute to do a quick appeal on your blog, “Do you know anyone who has Pulmonary Haemosiderosis?”, we would be so grateful.
I know it’s a long shot, but this is the worldwide web so maybe if I can get this out worldwide somebody somewhere will respond positively, know of a support group, know someone who knows someone who has it.
It’s worth a try right?
July 20th, 2008 at 6:16 pm
it’s scary what some people have to go through. i hope your friend finds what she needs.
July 20th, 2008 at 9:12 pm
What a frightening thing to endure. I’ll keep your friend in my prayers and add an appeal on my blog in my very next post.
July 20th, 2008 at 9:47 pm
you have me in tears Jo! I’ll put up a link to this post on my blog right now.
hugs!
July 20th, 2008 at 11:05 pm
You are such an amazing friend, Jo (as I well know!). I’m putting up a link this very moment.
July 21st, 2008 at 2:02 am
Jo, I’m sorry I can’t help but will spread the word and see I can find anyone.
July 21st, 2008 at 3:59 am
I can put the word out over at my place, no problem. I hope your friend can find some relief.
July 21st, 2008 at 4:56 am
Hope your friend can find some relief
July 21st, 2008 at 7:01 am
Post done, sorry I can’t do more. Hope she finds someone.
July 21st, 2008 at 7:08 am
Jo, while I don’t know of anyone with this condition, I will be praying for her and do a bit of digging here to see what I can come up with…I know how frantic it is when you can’t breathe, my heart goes out to her!
Sandi
July 21st, 2008 at 9:27 am
It is scary, and whilst I don’t have this diagnosis, I can identify with the scariness of being so ill you have to be honest with your children when they ask will you die and say “I might” and you are coping with your own fears and theirs. I also can identify with being on high dose and long term steroids. I cannot imagine the pain of total lung failure or the fear of seeing blood coming up out of your lungs (although I have had pneumonia and that is painful enough). My immune system is damaged too so if there is anything I can do, let me know but I doubt there is. With friends like you Jo she has a lot on her side. Now she is IN the hospital system and can access the right people quickly, hopefully they will be able to keep tabs on it better and treat it accordingly.
Prayers or good vibes to you and your friend and her family.
July 21st, 2008 at 10:09 am
I hope she finds the help that she needs. I’ll post today.
July 21st, 2008 at 11:03 am
I am here from Corey’s blog. What a devestating situation, and all the more so to feel so alone. I will post to get the word out more.
July 21st, 2008 at 12:57 pm
I’ll ask all that come.
Marie is lucky to have a friend like you.
July 21st, 2008 at 1:39 pm
I have friends who are a lot more tech savy than I,Jo. Will get their help in getting the word out about your friend Marie’s need for information. I’ll forward any info I can surface. You’re a true friend for trying to help.
P.S. all around good writer as well–love your blog.
July 21st, 2008 at 2:13 pm
I do not know anyone with this illness or I would definitely put both parties in contact. All I can do is wish and pray for the best for her. May you all be well.
July 21st, 2008 at 6:42 pm
I hope your friend gets some answers and help, and i wish her a full recovery! What an awful thing… makes me so sad!
But you are awesome to post. If I ver hear anything, I’ll for sure let you know!
July 22nd, 2008 at 3:34 am
I really hope she gets some hellp and contacts, I posted this on my blog today for you & her.
July 22nd, 2008 at 8:27 am
You are such a sweet and dear friend. She and her entire family will be in my prayers.
July 22nd, 2008 at 1:59 pm
Hi, I’m here from Bubblewench’s blog (Blogs of Life). I am so sorry to hear about Marie’s illness.
I did some poking around this morning and found if you give it a US spelling, you get more hits on google (47,600 for “pulmonary hemosiderosis”). More still if you use just the term “hemosiderosis”, although some of those hits will involve other organs (I guess kidneys can be affected too in some folks?).
I only got through a few pages for each of the above searches but it seems most of the results are medical information in nature, and not support groups. However, I’m hopeful that using alternate spellings or other names for the disease might yield some hits.
I did find one that seems to possibly warrant pursuing. I’m going to try to put in the link but if it fails, email me, ok? Madison’s Foundation is an organization which helps put parents of children with diseases in touch with one another – they have a hemosiderosis page.
Good luck to you and I’m sending my wishes for your friend to rally.
July 22nd, 2008 at 2:01 pm
Jo–Here is an article I found that gives a treatment for this that is apparently somewhat successful. I will also ask my dad’s pulmonary surgeon about it.
http://www.medicalnewstoday.com/articles/72840.php
Came to you via Lilacspecs…my daughter….
July 27th, 2008 at 1:39 pm
Just added a post on my blog in the hope someone may know something and help!
July 28th, 2008 at 12:18 pm
Jo my sister sent me these two links
http://www.news-medical.net/?id=25962
http://www.makingcontact.org/index.php?ci=1381
July 28th, 2008 at 12:55 pm
Here’s a link that might interest you.
Click here.
Troy
July 30th, 2008 at 11:19 pm
Hi i was diagnosed about eight weeks ago with this condition.Id coughed up blood five days in a row so i went to the doctor.And the tests started from there its been a long haul.I am a 24 year old male i am very anaemic.I would be very happy for future corrospondence and email you with info either way.Hope to hear from you .Regards Bryce oliver
October 1st, 2008 at 1:23 am
Hi Jo
My name is Skie I was diagnosed with Pulmonary Haemosiderosis when i was 8 and i am 22 now so its been a huge part of my life and unfortunatly my families life. I dont know alot about it when i was diagnosed i was 1 of only 2 people in Australia to have it so that was very hard to cope with. But today im just like any other person i havent coughed up blood or felt weak and heavy or anaemic since i was 14 so there is a huge chance for you friend to do the same i know it sounds really scary and it is but if doctors can pick it up quick enough the better chance she will have same with you bryce i wish your friend Marie and you Bryce the best of luck and just keep fighting it cos it is really worth it trust me.
October 22nd, 2008 at 7:42 pm
Hi Jo. Not sure why I’ve never been here before but it’s very timely. I don’t have the exact information your friend needs but I have a personal friend whose family has been devastated by Pulmonary Fibrosis. It’s like scar tissue building up in the lungs and the patients asphyxiate. To date it’s highly genetic but doctors have no idea why nor how to cure it.
There is a Coalition for Pulmonary Fibrosis here in the States (www.coalitionforpf.org) where they may be able to direct your friend. They are certainly very helpful and care for anyone who goes to the web site with questions.
I wish your friend luck.