Sarcoidosis

[Rosanne]

Hi, my name is Rose. Three years ago after being prompted by my daughter to see a doctor due to my shortness of breath I was sent off for a chest xray which revealed abnormalities in my lungs, they suggested a ct scan and thought maybe sarcoidosis, off to a lung specialist who sent me for a vq scan, I was told I had multiple pulmonary embolism and put straight into hospital and treated for 5 days then sent home on warfarin, after a few months and a repeat vq scan which showed no change it was decided that that was a wrong diagnosis, that was hard to take but better than maybe being right and not being treated in which case I would not be here now. From there I had a ct spiral angiogram to be sure and stopped the warfarin and continued to have chest xrays to monitor the probable sarcoidosis After 3 years my pulmonary function tests have dropped below accaptable limits and the comment on my last ct scan reads--diffuse peribronchial nodulation maximal in the mid zones with associated fairly symmetrical lymphadenopathy in the hilar regions and mediastinium is supportive for the clinical diagnosis of sarcoidosis. I also have some fibrosis so now I am off to see a lung surgeon to arrange for a mediastinascope, at least after this I will hopefully have a positive diagnosis, I guess it will be easier to cope with if I know for sure what it is. Before all of this started I had never heard of sarcoidosis if I mention it to people they have never heard of it so there is realy nobody to talk to about what to expect, thank goodness for the internet, I have been able to educate myself and now I have found this site I can read all of your stories and have people out there to share mine with. I'll let you know what happens.
This is not what I was looking forward to in my retirement, I have always tried to keep healthy, never been overweight, I guess I have been one of the lucky ones with a good metabolism but lately having big problems with my hip, have had lots of upper back pain and gone to a chiropractor repeatedly, now I think the pain was sarcoid, my breathing is getting worse, hills and stairs are hard, have to rest and it takes me much longer to do my regular housework, don't sleep well. I am interested to hear how you all feel.

[Davy9]

Rose.. Your chest images, clinical history, and symptoms all do point to sarcoidosis. You did not elaborate on your pulmonary function studies. They might show a decrease in functional residual capacity (FRC) and/or a reduced total lung capacity (TLC ) among other abnormalities. A reduced FRC/TLC is compatible with a restrictive lung process such as sarcoid. During the mediastinoscopy they will obtain a biopsy from a lymph node to confirm the diagnosis. Hope this helps. Best to you.

[Rosanne]

Hi, It has taken me a while to get back here but will finally update my progress. I went into hospital for a mediastinoscopy which went well, no complications and was diagnosed with a positive sarcoidosis result. It was a relief in a way to to know for sure after three and a half years of having probable sarcoid, at least now I don't have to wonder if it may be something more sinister that wasn't being treated. I am now on prednisone and plaquenil plus calcium and vitamin D and a flixotide puffer. I have to say that after reading and being told of all the dreaded side affects of this medication I was feeling very reluctant to start down this track but with fibrosis already in my lungs realise that there is no other option. So far I can only report the fact that I am feeling better than I have in a long time, I have more energy, I have only been on treatment for two weeks and apart from some problems with sleeping I am o.k. Before starting treatment I had baseline blood tests, a bone density test and saw a opthamologist who specialises in sarcoid, I had a follow up blood test yesterday and will see my doctor on Monday for the results. I will be on prednisone for three months, gradually weaning and staying on the plaquenil, I do worry about the affect on my eyes and hope there is none, the opthamologist also found that I have a crowded optic nerve in my eyes, not related to sarcoid of course but just something else I never knew about which could cause a stroke in the eye If there is a sudden peak in blood pressure. I am doing my best to stay positive and eat healthy to hopefully avoid some of the side affects of the medication and now that I am feeling better I should start to go walking, have to motivate myself there. My daughter has just been diagnosed with celiac disease, she is 34, we don't know how long she has had it but now we know can take action to change diet, she has 3 children, divorced from their father and works, her life is very busy and so is mine doing my best to help her with after school care. Two and a half years ago my younger sister had a subarachnoid hemorage and died, she was a beautiful person with so much to live for, I miss her so much. I don't know why all this stuff is happening, my husband has post traumatic stress disorder from the Vietnam war, I guess we all have our cross to bear and there are always those so much worse off. I have a little 2 year old grandson with asthma and a little grand daughter with a possible autism spectrum disorder. This has all made us realise how precious our healh this and to make the most of each and every day. I have said way more than I intended and strayed from the subject but I wish whoever reads this well, take care and try to enjoy your days.
Rose

[Davy9]

Your pragmatic approach and stalwart attitude in the face of so many adverse family health situations is admirable. Often people tend to allow health problems to overwhelm them. You demonstrate that the pursuit of understanding them goes a long way towards helping to cope with them. For whatever reasons or for no reason at all, we are dealt the cards we have and how we manage them determines how content we will be. Best to you and those in your family.

[Rosanne]

Hello dave, thank you for your feedback to my story, it was encouraging to read. I am a person who needs to learn and understand the facts to accept it all and move forward. Thank you for caring enough to reply.
Rose