I have recently joined this site as I have been going through a rough time lately. Having spent the last week looking at various blogs and questions I thought it was about time to tell my story.
I am a 42 year old woman and have various medical conditions which started at the tender age of 7 when I was diagnosed with what was then called Stills disease, now categorised as Rheumatoid Arthritis. I spent most of my childhood struggling with aches, pains, stiffness and limitations and back then children weren't treated with the same sensitivity as they are now!
Anyway I went through life working hard at school and found myself a job in London and worked for a number of years. Gradually my joints were getting more deformaties but I just adapted my life accordingly.
It was about 10 years ago that I started getting breathless - I lived in a second floor flat and would be puffed out when I got to the top. I just put it down to being unfit as I didn't do any real exercise. I told my rheumatologist but he never seemed overly bothered by it.
I got married and my husband and I decided to start a family and I fell pregnant in September 2005. After this point my breathlessness started to take hold - I would get really puffed out walking to the station so after various visits to the doctors and hospital I was finally diagnosed with lung disease (narrowing of the small airways). At this stage I was about 6 months pregnant. I was devastated and worried about the baby. I had a C section and my son was born in May 2006 absolutely fine! We were over the moon.
Shortly after the birth my RA took a turn for the worse and I was barely able to move so at this stage I was given a relatively new treatment for RA which worked wonders at the start. It was only after about 4 months that I was getting even more breathless and coughing uncontrollably. I think I went into denial at this point as I spent my whole time focusing on my baby. On a routine check to see my lung specialist in January 2007 I was admitted as I had respiritory failure and put on oxygen. My consultant transferred me to the Brompton and I was diagnosed with Idiopathic Pulmory Fibrosis (which may have been brought on by the RA treatment).
Anyway I realise this blog is turning into a novel so I will try and get to the point! I am now on oxygen 24/7 trying to run around after a 6 year old. I am currently exploring lung transplantation at the Harefield and have recently been for my second assessment. In principle they agree that I would be suitable but I need to try and build up my fitness level over the next few months. I have gone downhill over the last 6 months both physically and mentally (since I a hip replacement at the end of last year).
Throughout my life I have alwasy tried to fit in and buried my illnesses and tried to live a near normal life - now I feel my illness is starting to take hold hence I joined this site looking for support from fellow sufferers.
Sorry if I have gone on a bit but as you can see I have a lot to tell. I look forward to hearing from other bloggers.
Written by
Gilliam
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you dont have to say sorry - after what you have been through life can be very unfair but reading between the lines you sound like a fighter-dont give up keep pushing -get the answers.
I am 63 and still in full time work and live with COPD / Diabetes / High blood pressure among other things ( my cupboard looks like a chemists shelf ) but I feel great at the moment and there are times when you will feel down- but think of your little one and you will soon feel better-my grandaughter Abby calls me and says" I love you grandad "- fantastic.
Hi and welcome, you have been through a rough time and it must be hard with a 6 year old they are full of energy, hope you find this site helps you Val
That's a lousy deal... but how lovely to have a 6 year old Check out what help (benefit, domestic, childcare etc etc that you may be entitled to that you may not be getting - ring the BLF helpline.
I understand how hard it is when u have children luckily mine is 10 but was 6 when i was diagnosed with copd, its hard as a mum not being able to do things u would like with them and for them, and in alot of cases they are the ones doing things for you! having said that my 10 yr old is what keeps me going and gives me that fire in my belly to fight, she brightens my day and pushes me to not give in even when i feel like it! my best wishes go to u and ur family and hope u find this site as great and supportive as i have xx
You have nothing to be sorry for sweet. You have been through the mill and it is bound to get you down. However the fact you are a very strong woman shines out through your post.
I am the opposite way round to you in that I have had bronchiectasis since I was a baby resulting from double pneumonia and whooping cough. Had a lobectomy in 1963 and I understand it is a less traumatic nowadays, although I don't think they would do it now as my bronch is scattered as it was at the time. Much more recently (Iam now in my 60s) I have inflammatory arthritis.
If you are on dmards how do you find they effect the frequency of your lung exacerbations?
I am sorry you are on o2 constantly, especially with your dear little one - a full time job without the 02. I so wish you well at Harefield and you see an improvement in your quality of life.
Let us know how you get on and feel free to rant and rave anytime to folks who really 'get it'.
im so sorry 2 hear about ur illness. u have had 2 suffer a hell of a lot. wellcome 2 the site. the people here r great, they r always there for each other. i do hope u receive a transplant soon. as for the RA. my mum had that, ive just the common one osteo. lol hope 2 speak 2 u soon. oh bye the way whats ur sons name..
Welcome Gillian,Thank you for sharing your story . I too am new to the site and i am amazed at the wonderful support that goes out from its members.!.I can see you are going through a difficult time ,reach out for all the support you can get ,talking is good therapy .Best wishes .
Hi Gilliam, like you I suffer from Idiopathic Pulminary Fibrosis( for the last 7 years).Allthough an old Geezer compared to you( 70) I still love life and my 3 young grandchildren( 5,18 months and 1 Year next week).I have found that learning to live with my IPF and keeping a positive mind has helped me.I realy feel for you,and wish I could wave a magic wand for it to dissapear.it can be beatened. Has your GP/Consultant discussed lung transplant?some .light excersises that you can do at home or your local hospital..Push them.GBY, like other bolggers you are in our thoughts. Keep bloging it will give you a lift, Terry.
You are having a really hard time!! You must have some strength to be looking at a 6 year old as well!! (hope he sleeps at night!). Good luck with the transplant. Be kind to yourself and try to look after yourself - if you find a minute! tad XX
Hi there, I think everyone has said all the things that i would have said, apart from this group are awesome! and have been so thoughtful and kind to me over the last few days. i wish all the luck in the world at Harefield and really hope they can do something for you. I can imagine your 6 year old is full of life and into everything, I have a 7 year grand daughter, and know how busy she keeps me, take care .x
You really have had a rough time of it Gillian. And am aware you must get your fitness up before a transplant. You do not mention if you have been on pulmonary Rehabilitation. A six week course well worth going to as they can help you to improve your fitness and your ability to do things. You said you used to soldier on and try to 'hide your illness'. I can well relate to that one as it is only recently I have come out of the closet as though to speak and let everyone around me know I have very severe copd. I have found that really is the first step in improving your life. I look forward to reading more of your blogs in the future Gillian and am sure you will find both lots of support and useful information here on this blog
Your story is amazing.What strength of character you have.This is an amazing site.Everyone justs supports each other.I have gained a lot of advice just by reading all the comments. Hope you continue to battle on with the rest of us.
Thank you everyone for all of your kind and helpful posts. I am touched by your responses. I just didn't realise there were so many others like me out there. I certainly don't come across anyone at the school gates! I am trying to be more positive and started doing some exercises at home plus a pilates class every couple of weeks. I just wanted to reach out to other individuals in similar positions and to find some level of understanding and I have certainly found that from joining this site. I will keep you updated with how I am getting on and hopefully I will be able to offer some support to others as well.
Hi Gillian,read your blog today my heart goes out to you & your family xxxx my mum had the same as you she had RA most of her life then to get copd was a big blow to her,im stage 4 at 55 it comforts me when i think of her strenth it helps me get though the day.This site is also a great help, im also new on here but so glad i joined do read every blog they realy do help to understand what is going on with your body.Most of all syay strong & positive your little one must be a great comfort to you bless her.xxx
You sound like a brilliant person Gilliam. You should be very proud of how you have coped with all your illnesses. I havent been here long but am amazed at how supportive everyone is. Give your little one a big kiss from me. x
u dont have to say sorry, welcome from all , you are truelly someome who i can see family comes first before anything but i hope you can get a lot of support from this foroum.
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Check out what help (benefit, domestic, childcare etc etc that you may be entitled to that you may not be getting - ring the BLF helpline.
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