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I'm a respiratory therapy student trying to better understand Sarcoidosis & relate to individuals:

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Hello, my name is Lindsey. I am a respiratory therapy student. I would like to better understand Sarcoidosis, as well as educate myself on what individuals with Sarcoidosis need.

What types of things would you like me, as a future healthcare provider, to know about your personal needs, as well as the needs of your family?

How do you cope with this?

Is there anything that you personally feel healthcare providers are lacking in when dealing with Sarcoidosis?

Also, if there is anything that you would care to share with me that may help me to better understand. 

Thank you very much for helping me to better understand and relate!

1 like, 27 replies

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  • david03145
    david03145 Guest

    Posted

    Good mprrow folks,

    I don't think l mentioned before, but l collapsed 3.5 years ago.... this was the night before my wedding and was described by various doctors as an extreme Laberinthitus event. I can put this down to ignorance of the condition that is Sarcoidosis. I am now on my 5th... (and brilliant consultant she is) for Sarcoidosis alone! I have another brilliant lady doc consultant (at a different hospital for Periphial Neurophathy too. And during all the testing l have endured.. l have discovered that l have Ostioarthritus in my hip, knee,spine and neck joints (different hospital) a hernia, and have blood tests locally every three weeks at present. The NHS Has more of my blood than l do.

    The level of understanding of Sarcoidosis and Neurosarcoid is indeed scant in my experience. I was really fortunate to be referred initially to a consultant who had a specific interest in the condition. A lot of my experience that has followed an eagle eyed Radiographer spotting the scarring in my lungs has been down to luck and perseverance to get in front of the right doctors. It is also vital to mention that doctors across various diciplines must communicate effectively. I have had to have corrected /clarified such a simple thing (among others) like l have never smoked, that my memory is badly affected by either the drugs or possibly the Neurosarcoid... l have learned on here two brothers have had Sarcoidosis... l have a brother currently housebound with COPD...does he have Sarcoidosis that has not been diagnosed? There are so many questions and few answers so far...but l am positive there is life to be enjoyed by the old dog yet and am optimistic for the future despite having a bad winter with all of this.

    Again, l wish you all well and the best health you can muster!

    Kind regards

    David

    • camey03589
      camey03589 david03145

      Posted

      David, every detail you share is writes a little more of my story. You had mentioned your collapse but not that it was before your wedding! God bless your wife. I was sick before I married my wonderful husband and had been seeking answers for over Tep years before marriage. I was directed towards adrenal fatigue, then pleurisy, (supposedly I had, had previously), at that time incidentally discovered the enlarged spleen in 2010 and the ball started rolling. I too have the memory issues but attributed it to the chemo drugs, I as well do blood work every 3 weeks, developed latent TB from biological, so I feel you, I pray your wife and family are as supportive as mine, as you know the guilt that comes along with a “chronic”, crippling, disease. I lived the first 3 years thinking of I rested my body, put my wonderful life on hold it would be better. NOT! So you are right live your life in spite of it and let’s do what we can to bring attention to this disease that should be getting more attention than it is. Do you mind me asking are you in the UK? I seem to be the only one in the US.

    • david03145
      david03145 camey03589

      Posted

      Yes Camry...l live about 29 miles from London in Buckinghamshire. I do enjoy the unconditional support of my wife and family. I may sound as though I am completely disabled. This is not the case.

      I generally lead a normal life with some restrictions. I drive, work and socialise. But l won't be jumping out of aeroplanes or anything like that any time soon. I have restriction in breathing, and am very succeptable to any bugs/colds etc as my immune system is compromised. But l see numerous people wheeled in to the clinics l WALK to, and these poor souls are on 24/7 oxygen supply and l count my blessings as compared to them l am a lucky man and l will not let these conditions defeat me. I have been off work with colds for 2 months now and despite very restricted options of doctors to treat these l don't feel rested. I started physiotherapy again last week and this is to help get me in better condition for a hernia operation in about 3 months. I retain a positive attitude and move forward day by day!

      This, l feel is the best way to approach these conditions... as to dwell on the unknowns this brings would be wasted effort.

      Good luck with your battles too

      Kind regards

      David

    • camey03589
      camey03589 david03145

      Posted

      My life is very similar I live in the Texas Hill country the summers are difficult for me but we have a pool. I just know it seems for me that the longer periods I go with somewhat “normal” function makes the down times harder and are a bigger adjustment.
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