17 July 2009

Living with sarcoidosis?

Patrick Comerford

I have spent the past three or four days in hospital for the latest round of tests aimed at confirming whether I have a condition known as sarcoidosis.

I have known for a long time that something is wrong. I have a dry cough that creates difficulties for my lungs when I cough, and that also leaves me breathless – not an easy complaint to cope with when I’m lecturing or preaching.

My knees are constantly complaining about their bad condition – for a long time I thought this was just age creeping up on me, but I knew there was something wrong when I took a bad tumble last September, and I now find it difficult to walk downhill.

I have a regular sensation of “pins-and-needles” under my feet. There is a slight swelling on the sides of my neck. And I regularly wake up early, wondering why I’ve only had four or five hours sleep, why I am still feel tired, and why I am feeling sweaty.

When I was in my early twenties, I lived on four or five hours sleep a night, and never worried about it. But the warning signs seem to have been there for a few years now: a painful kidney-stone, dismissed later as being nothing more than a kidney-stone; my knees going from under me as I climbed down Mount Sinai a few years ago, barely making it back in time to Saint Catherine’s Monastery long after everyone else was sitting down to breakfast.

None of these symptoms has been helped by the fact that I’m also suffering from a deficiency of Vitamin B12 – probably brought about by almost forty years of vegetarianism.

But then, like most people, I never heard of sarcoidosis until the symptoms began to present themselves a few months ago.

I think I now know every exit and entrance to Saint James’s Hospital, the Adelaide and Meath Hospital in Tallaght and the Blackrock Clinic, as well as the faces if not the names of most people queuing in my GP’s clinic.

I have been for lung tests, blood tests, kidney tests and heart tests. I have had local and general anaesthetics. I have had X-rays and CT scans. I have seen consultants and dieticians. And now I have had biopsies, ECTs, saline drips and oxygen masks.

What is sarcoidosis?

Sarcoidosis is commonly referred to in a friendly sort of way as “sarcoid.” But it is no friend to the body. It is an auto-immune disease or condition that causes the body to attack itself. No-one appears to know why this happens. But infection often precedes the first signs or symptoms. It often shows up first of all in breathlessness, blurred vision, painful joints or a general loss of well-being. Although many people with sarcoidosis look healthy, they don’t feel well. Sarcoidosis can even kill, although for most people who develop this condition a full recovery is likely.

With sarcoidosis, areas of inflammation may appear on the body. Any part of the body can be affected but the most commonly affected areas are the lungs, skin, eyes and lymph nodes. One area alone may be affected, or it may be many at once.

As with many diseases, sarcoidosis is often present without causing any symptoms. When the symptoms do appear, however, they appear either abruptly, as in acute sarcoidosis, or gradually over a number of years, as in chronic sarcoidosis.

The symptoms of acute sarcoidosis can include fever, cough, joint pains and tiredness, and it makes people feel generally unwell. Red, tender lumps (erythema nodosum) can appear on the shins, and if the eyes are affected they become red and the vision becomes blurred. The lymph nodes can become enlarged and tender.

Over the years, chronic sarcoidosis causes coughing and shortness of breath as the lungs become more and more inflamed and their ability to function deteriorates. The eyes and shins may also be affected in the same way as in acute sarcoidosis.

Although sarcoidosis can occur at any age, I am surprised to learn that young adults are far more likely to develop it. It sometimes runs in families.

Sarcoidosis involves inflammation that produces tiny lumps in different organs. These lumps grow together to make larger lumps, damaging the way the organs and the body works. Many people with sarcoidosis have these lumps in their lungs, and while sarcoidosis is not cancer, one of the treatments may be a low dosage of chemotherapy.

It is not always easy to diagnose sarcoidosis as many other conditions display similar symptoms. My case may be like so many where it is only discovered after a chest x-ray reveals the characteristic swollen lymph nodes or shadowing in the lungs.

Examining a sample of tissue taken from affected skin or lung under the microscope can help to provide an accurate confirmation. And that’s why I have been in hospital for most of this week.

Now all I want to do is sit back on the couch and watch the Test match. The results from examining the tissue samples from my lungs should be ready within the next few weeks.

If I have sarcoidosis, then I’ll have to deal with it. I don’t want to be walking around like the “drunken sailor” for the next few years. But, while I may have sarcoidosis, sarcoidosis will never have me. I used to love walking a few miles a day, and I’m determined to recover that pleasure and exercise.


The Rambling Rural Rector said...

I admire your positive attitude. God be with you and yours whatever is ahead. Craig McC.

Joc Sanders said...

God bless you, Patrick, and may He send you good news and healing.

Unknown said...

I also am a 30 year old woman with sarcodosis. It has been a struggle especially with my eyes,but you can do it stay strong and positive!

Anonymous said...

How are you doing on eliminating the Sarcoidosis issue you're having?

I found your blog but not seen an update for a while.

Anonymous said...

Love ur comment Dee.
I am 31 and have sarcoidosis. I have it n my lungs and eyes.
When people look at you we look normal , but we have to struggle most days with unwell feeling and fatigued..
With my lungs i could be good one minute the next so breathless . The dry cough never goes away .
Now my eyes are very sore,itchy and I only have 50. Percent eye sight n one eye.
Keep an eye on your calcium levels ..
As scarcodois suffers can build up two much .
But we have to remember , if we r tired rest and say no and rest . Explain to our family and friends how we feel..
When we good enjoy our day . We all are stil learning so much more grim each other.
Take care dee .

Anonymous said...

Hi Patrick, sorry to hear you have this condition. I found your blog as I was searching for a link between b12 deficiency and sarcoidosis. The symptoms you describe (stumbling, site knees, sensations in feet) could primarily be from lack of B12, which lead on to the sarcoidosis. I have just found out I have this deficiency, as has my sister, plus my brother has just been diagnosed with sarcoidosis. I suspect a link - the neurological ill effects of a B12 deficiency are frightening to learn, but can be helped by B12 therapy. Please please ensure you keep your focus on your deficiency as a possible root cause and make sure you get adequate treatment going forward. A great resource is a book called Could it be B12? It has been an eye opener for me. Wishing you all the best. Catherine, Meath

Patrick Comerford said...

Thank you, Catherine, I have thought as much as you instinctively suspect. And thank you for your caring thoughts. I am now on monthly B12 injections, and the symptoms are under control to a degree, except when the weather is cold or I over work. Regular walks on the beach, friends and family, the places I love and a rich spiritual and prayer life help to sustain beyond anything anyone can imagine. Patrick.