ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

Sarcoidosis-That Rare Disease

Updated on September 23, 2013

The End is Near...Might as Well Have Some Vino?

Before my diagnosis of Sarcoidosis, I thought I was dying.
Before my diagnosis of Sarcoidosis, I thought I was dying. | Source

This is the End

It was March of 2004. The symptoms? I couldn't breathe.

Seems like quite an important function, doesn't it? That whole breathing thing. In and out, in and out. Moving oxygen safely into the lungs and expelling carbon dioxide.

It's the process we've been doing our entire lives. No one ever taught us how. No one stresses over how it is done, unless of course, you can't do it.

It's at this time when we are convinced the end is near.

I Must Be Dying

It was midnight. 12:00 on the dot as my eyes popped open. The day had been a normal one, work from eight to five, dinner, dog walk, a little television, and then light's out. Nothing strenuous, nothing stressful, nothing that would cause me to have trouble breathing. And certainly nothing to wake me from a deep sleep.

I looked around the room, trying to trigger a memory. The first thing I thought of was that perhaps I had a violent nightmare. The ones you see in gory horror flicks. The one that wakes the innocent person from a dead sleep causing them to gasp for air before an axe-murderer steps out from the closet and hacks them into little pieces.

There was nothing. Not that I wanted a psycho taking residence in my closet!

While I couldn't breathe correctly, I was still breathing. After all, twenty minutes had passed and I was still conscious. But, something was amiss.

The second thing I thought of was that I was having a heart attack. My imagination began going to the dark side. Elephant sitting on my chest? Check! Then I thought about the other symptoms. Loss of Breath? Check! Shoulder pain? No. Sweating? No. Choking? Not at all. The rhythm of my breathing, while fast and panicked, was fairly normal.

Go Back to Sleep

Go to sleep. That might be someone's advice. But my mind wouldn't relent. I thought of every disease, every ailment, every remote possibility. As a matter of fact, I stayed up the entire night trying to catch my breath, trying to figure out what it was. Someone else may have suggested calling a doctor, or rushing myself to emergency, but...I was breathing.

To give an accurate description, it was the continual feeling that I had to yawn. If you know the deep breath that accompanies a yawn, this was what I was aching for.

But the continual in and out motion of breath was completely fine. If you've ever had a yawn interrupted, then you may realize the feeling I am speaking of. Now, imagine that feeling for hours on end. It was at that point that I realized what a powerful tool our mind is.

That I-have-to-yawn feeling, coupled with my mind's imagination caused anxiety to get folded into the mix, joining together a nice recipe for complete and utter panic.

Time to See a Doctor

Sarcoidosis is no fun!
Sarcoidosis is no fun!

The Doctor is In

I waited until morning and I drove to work still trying to catch a good deep breath. Every now and then, my body gave in and granted me that wish. It was the most euphoric feeling in the world, but then it would disappear, replaced by the constant effort to take in air.

Toward mid-afternoon, I gave in. I had to go to the doctor. I made an appointment and they took me in that day. They took some X-rays, diagnosed it as pneumonia, gave me antibiotics and sent me home. Pneumonia. Now, I've never had pneumonia before, but from what I knew about it, it usually consists of a heavy cough, lethargy, fever, headache, and chest pain. All of those symptoms of which I had none, however, I wasn't a doctor, so I heeded their advice.

After a week's worth of meds, I wish I could've reported that I was cured, but if at all possible, it became worse.

It just goes to show you doctor's do not know everything. No one does.

You Have What?

Have You Ever Heard of Sarcoidosis?

See results

You May Have Boop...

But it might be Sarcoidosis.
But it might be Sarcoidosis.

"We Just Don't Know"

Upon returning to the doctor, I was met with a grim, "I don't know what is wrong with you." Apparently, my illness wasn't in the medical books yet. We tested for tuberculosis and other breathing abnormalities. I was sent to a pulmonologist immediately. Normally there is a waiting period, but I was taken in the next day. We did bloodwork, more X-rays, breathing tests, pulmonary function tests. You name it, we tested for it. The doctor literally had a textbook on his desk, skimming through the pages.

"You might have BOOP." Of all diseases, I get BOOP. What the heck is that?! I'll tell you what it is, but I don't know if it will be any clearer than its acronym. It is Bronchiolitis obliterans organizing pneumonia. I can tell you it's something I didn't want to have, but aside from that, I didn't know much more.

The doctors weren't sure either.

We did tons of CAT scans, MRI's. More CAT scans and more MRI's. More X-rays. More bloodwork. Six months worth. We tried inhalers, different antibiotics and nebulizers. Nothing worked.

I researched every breathing disease available online. I created spreadsheets detailing my symptoms in comparison with other diseases. Nothing matched.

It's Time

Up until this point, I had never been hospitalized. I was happy about that. I didn't want to ever be hospitalized. The powers that be, however, enforced that exploratory surgery was necessary. I got a second opinion. He agreed. So did the third. I had been living for six months trying to catch my breath to no avail. My activities had been limited. I had to agree. It was time.

The first was an outpatient procedure. A bronchoscopy. A procedure to take a nice look at my lung. I was in and out and had no issues. Except, they couldn't find anything. This meant a more invasive surgery.

It was scheduled for July 24, 2004. I won't give details for those who hate medical procedures as much as I do, but I was in intensive care for three days.

My surgeon was incredible as the moment I regained consciousness, he pacified my fears and told me it wasn't cancer. My one moment of relief in an otherwise tumultuous year.

The Results are In

Sarcoidosis. For us who have it, sarcoid for short. It's a rare auto-immune disease. The X-Rays of the lungs look black with spotty 'granulomas' throughout.

I explain it as it simply looks as though the lung is made of Swiss cheese. It's just easier.

Now, this was 2004. Ten years ago, there was basically nothing upon this disease. I could more or less recite to you what each and every website said. "There's a 5% chance of fatality. Occurs in women over age twenty. Can heal on its own, leave scarring or get worse. It can come back at any time or never come back at all. Many people have this disease and don't know it. It's not hereditary. It's not contagious..."

There was a diagnosis. That was all I cared about. My anxiety lessened at the news. While still a very serious and potentially deadly disease, I now knew what it was. So, now all I had to do was find a cure.

Someone You Know?

Do you know anyone with sarcoid?

See results

The Treatment

Here's the fun part. There are varying degrees of Sarcoidosis and in the beginning stages, the symptoms might not be debilitating. The anxiety from not knowing was a contributing factor in the shortness of breath, as once I found out, I actually breathed a little easier.

The treatment, which I tried for one month, is prednisone. I could easily list the side effects of that drug, but it would take up the entire page. There are many. I describe prednisone as putting out a fire with gasoline. It may cure one ailment, but create many others. I stubbornly decided to only use it when I needed it, and then once I discovered you had to wean yourself off, I decided never to use it again.

It is advised to avoid Vitamin D or keep it to a minimum.

It's been ten years and I've learned to simply take it easy on the days that I have difficulty breathing. That method has worked nicely for me so far, and I plan to use that method as long as I can.

Do You Have Sarcoid?

If you or someone you know suffers from this rare disease, it may be wise to seek advice from different doctors. Some are more experienced with it than others and can now offer more insight than they could almost ten years ago. It's not a fun disease, but compared to where my imagination had taken me, it's one I will live with.

That entire experience wasn't a waste, however, as when I thought I was dying, I learned to appreciate living.

Thanks for reading!

~ Elizabeth Parker

"Bringing awareness about dog adoption and rescue, one dog at a time!"

Author of Finally Home, Final Journey, Paw Prints in the Sand, Paw Prints in the Sand: Mission Accomplished, My Dog Does That!, Bark Out Loud, Unwanted Dreams, Phobia, Evil's Door and Faces of Deception. All books are available in Kindle and paperback format on Amazon.com.

© 2013 Elizabeth Parker

Comments

    0 of 8192 characters used
    Post Comment

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thank you for stopping by and commenting, vespawoolf! I hope that your friend's husband finds relief! It is a very scary disease because so much is unknown about it. I do hope they uncover some information soon. Take care and have a great day!

    • vespawoolf profile image

      vespawoolf 3 years ago from Peru, South America

      The title of this Hub caught my eye because a childhood friend married a man with sarcoidosis. They´ve been married for many years now and have a daughter. He has flair ups of the disease and never knows exactly what will be affected next. The shortness of breath you described would be very scary! I´m glad you at least know what the disease is called. I hope this information can be helpful for someone who is still undiagnosed. Thank you for sharing.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Hi Dave- I still have it, but it doesn't bother me much anymore- only once in a while.

    • profile image

      Dave 3 years ago

      How did you get rid of sarcoid?

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      It sounds like a truly great book Looking forward to seeing what's inside of it!! Thanks again for thinking of me!

    • JayeWisdom profile image

      Jaye Denman 3 years ago from Deep South, USA

      You're so welcome, Liz. I hope the plan can rid you of sarcoidosis. Since you're mostly a vegetarian, it would not be so difficult for you to try it long enough to discover if your condition could be reversed. It would be wonderful if you became a successful "case study."

      Dr. Fuhrman has a website that is very informative and has his books, but I bought the book FIT TO LIVE and the cookbook from Amazon (discounted, no shipping charge).

      Good luck!

      Jaye

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Jaye- Thank you so much for this "commercial" as you say. Hahah! I loved the information that you provided- very well written and to the point. I'm mostly a vegetarian now, ocassionally eating fish and rarely eating chicken, so this sounds like something I could probably do. I'll look into it. I'm going to wait to go to the bookstore to see the foods that he suggests but yes, definitely looking for healthier living! Thank you for taking the time to share this with me. It's greatly appreciated.

      Liz

    • JayeWisdom profile image

      Jaye Denman 3 years ago from Deep South, USA

      Hi, Liz - I came back to share with you something I read. I'm currently reading (thoroughly studying) the book, EAT TO LIVE, by Dr. Joel Fuhrman, M.D., who advocates a plant-based, high-nutrient dietary regimen to prevent major health problems and even reverse them, in addition to losing weight and maintaining weight loss. Dr. Fuhrman has written other books that focus on the health aspects of his nutrition plan, but I got this one (plus his hot-off-the-press cookbook) because I want a "two-fer"--better health and weight loss.

      The latter is difficult for me to achieve because I have mobility limitations that don't allow me to exercise strenuously. Well...I didn't mean to get off the track. Back to why I'm writing about this here.

      On page 15 and 16 of this book is an actual case study of a man who developed sarcoidosis in this thirties, experiencing labored breathing and was being treated with steroids after a biopsy. The breathing problems lessened his activity and caused him to gain 50 pounds. He started on Dr. Fuhrman's plan, stuck to it religiously (which is the only way it's effective) and lost weight. That was when a thyroid cyst (formerly obscured by fat on his neck) was discovered and resulted in surgery.

      Here's the point of this case history that may interest you. A pre-op MRI showed no traces of the sarcoidosis. It had completely disappeared, just as Dr. Fuhrman had predicted. This man is now 46, runs 20 miles a week, says he has unbelievable stamina, blood pressure and cholesterol levels that are amazing and--no sarcoidosis.

      I don't know if you're like me and are willing to do anything--even give up lifelong comfort foods--if it may eliminate a serious health issue, but you may want to read this book. Note: the forward is written by Dr. Mehmet Oz, currently the food-and-lifestyle guru of TV and print magazines, who endorses Dr. Fuhrman's plan for better health and fitness.

      The EAT TO LIVE dietary plan is very restrictive, but Dr. F. suggests trying it with absolute commitment for six full weeks to see if it helps you. Most people can stick to a new way of eating for that long, even with the restrictions. It's not so difficult for me, since I've been variously a vegetarian, vegan and ovo-pescetarian (vegetarian who eats an occasional organic egg from cage-free, humanely raised hens and low-mercury fish once a week--at least that was the definition for me). Since I no longer eat any soy products and watch my consumption of other plant foods that, when consumed in large quantities, may have adverse effects, I'm paying a lot of attention to what I eat these days.

      This plan is more restrictive than any I've been on before, but if it helps me with even one of my health issues--particularly if it increases my energy level--it will be worth it. Since there is heart disease in my family, that's a big motivator as well, and both my son and his wife are joining me in giving EAT TO LIVE a try.

      End of commercial....haha. I just wanted to share this information about the man whose debilitating case of sarcoidosis vanished after he adopted Dr. Fuhrman's plan. He says he sought out Dr. Fuhrman to personally thank him for giving him back his life.

      Regards,

      Jaye

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Hi Alexadry- I'm not sure if it is similar- it might be. I am glad your mother's diagnosis of 6 months was incorrect. It goes to show you that doctors don't know everything. I hope she is feeling well. THanks for your comment!!

    • alexadry profile image

      Adrienne Janet Farricelli 3 years ago from USA

      My mother in law has pulmonary fibrosis, not sure if it's similar to sarcoidiosis, but she has to take prednisone when she has flare ups. When she was diagnosed though they told her the prognosis was dire and she had like 6 months to live and here she is 12 years later. I still think they misdiagnosed her, as she doesn't have the typical scarring on her lungs, but then some doctors say she has it others do not. It's very confusing! Anyhow, I am sorry you are going through this, I hope you can overcome it in some way. I think nothing must be scarier than having trouble breathing.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      teaches12345 I hope your sister is doing well. Thank you so much!!

    • teaches12345 profile image

      Dianna Mendez 3 years ago

      I believe this must be what my sister has. I will have to check with her on this. Sorry for your experience. I hope you are able to conquer this!

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thanks so much Joe- that means a great deal to me! You are always so very kind and I do appreciate it wholeheartedly!

      Hope you are having a wonderful day and thank you for being who you are!!

      Liz

    • hawaiianodysseus profile image

      Hawaiian Odysseus 3 years ago from Southeast Washington state

      Congratulations, Liz, on successfully fighting hard these last ten years against such a rare disease. While not overcoming it (at least, not with the limited information scientists and doctors are currently working with), you've found a way to proactively DEAL with it. Sometimes, that's the best and noblest thing we can do.

      I am in awe of you and so proud of you for having accomplished so much in your young adulthood...especially the last ten years...in spite of what very well could have been a debilitating disease. The fact that you can write about it with such dedication and positive focus is further evidence of your courage and perseverance.

      Thank you so much for sharing this information with your readership. Aloha and mahalo for your inspirational example!

      ~Joe

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thank you so much Eddy!

    • Eiddwen profile image

      Eiddwen 3 years ago from Wales

      I had not heard of this illness so thank you very much epbooks for sharing. Have a wonderful day; voted up and shared.

      Eddy.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thank you Sheila! Not knowing was the hard part. I'm glad that I found out!

    • profile image

      sheilamyers 3 years ago

      I'm glad you found both someone who could tell you what it was and you found the way that works best for you to deal with it when it flairs up. Thanks for sharing all of the information. If anyone ever tells me they have trouble breathing and their doctors can't figure it out, I now know what to tell them to ask about. Great hub!

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Bravewarrior- the 6 months was probably the worst. My imagination flew wild. I'm definitely glad I don't need to take the drugs for it as of now and hopefully it will "go away on its own" as some of the web citations say! Thanks for commenting!

    • bravewarrior profile image

      Shauna L Bowling 3 years ago from Central Florida

      Liz, I have never heard of this disease, either. And to think you went 6 months before a positive diagnosis was made! You must have been petrified. I'm so happy you've learned how to cope with it without the use of drugs.

      This is such an important article. Thank you for bringing awareness to this rare disease.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      LMOre01 Thanks so much for commenting. Hopefully this hub helps anyone who might be experiencing some of these symptoms.

      Have a great day!!!

      Liz

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Jaye - Thanks so much. I completely agree about managing stress levels and it helps a great deal. Thanks for commenting and voting!!

    • LKMore01 profile image

      LKMore01 3 years ago

      Liz,

      Just like 67% of your readers who took the poll, I had never heard of this disease. Thank you for writing such a personal, informative and educational account. We are all better off now for being able to recognize the symptoms.

    • JayeWisdom profile image

      Jaye Denman 3 years ago from Deep South, USA

      Elizabeth - I'm glad you're living well in spite of this disease and hope you maintain the status quo. Trying to control stress and living a healthy lifestyle can often help people with chronic illness. Thanks for sharing your personal experience and telling readers about a little-known (or, to some, unknown) health disorder.

      Voted Up++

      Jaye

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      moonlake- I am sorry your husband is going through this! If he does get tested for it, they supposedly can now do the surgery in an outpatient environment with a needle instead of the invasive surgery that I had, but I am not completely certain of that. Also, (and I should write a hub on this), anxiety can sometimes cause breathing issues as well. That might be something to check for also as I had found that out. I hope he starts to feel better and you get to go on your vacation! Thanks for commenting and voting.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thank you DDE. Not many people have heard of it, but I think it's more "popular" then it was back then. I hope more awareness will be made in the future!

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thank you MsDora!

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      FlourishAnyway- Thanks so much. I hope you are doing better now and I'm glad that you do not have sarcoid. I'm also happy that you are able to avoid prednisone now! Have a fantastic day!!

      LIz

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      FaithReaper, I had no idea that you had beat both cancer and the blood clots. I'm so glad that you are okay.

      Thanks so much for the kind words.

      For you niece, I don' t know if she had the X-rays taken or not, but there is another issue that can have some of the same symptoms as sarcoidosis, and that is anxiety. Anxiety can leave a person feeling the same way- like they can't breathe, almost like a heart attack so I'm told. That might be one more thing for them to check for. Just wanted to put that out there too as many don't know they are capable of having anxiety!

      Thanks so much and have a great day!

    • moonlake profile image

      moonlake 3 years ago from America

      I have never heard of this before. I'm glad you’re doing ok. My husband is going through something like this right now and it seems all the meds they are putting him on is not doing any good. He just told me this morning he didn't think he was well enough to go on our vacation. Thanks for sharing your health experience I know it will help someone else. Voted up

    • DDE profile image

      Devika Primić 3 years ago from Dubrovnik, Croatia

      I never heard of Sarcoidosis but I am glad yo shared your experience with us now I learned something new and would not be in the dark about such information in the future. I am pleased to know you are dealing with the disease in your own way. You have your special way of writing and definitely know how to keep a reader's eye.

    • MsDora profile image

      Dora Isaac Weithers 3 years ago from The Caribbean

      Thanks for sharing your experience with Sarcoidosis. Never heard of it. Happy that you came through alright. Best to you, going forward.

    • FlourishAnyway profile image

      FlourishAnyway 3 years ago from USA

      I am sorry you have this. It's a testament to your courageous spirit that you find a way to flourish anyway. When I was undergoing testing for MS 10 years ago, sarcoid was on the short list as one of the other diseases I might have had, as I was also experiencing scary breathing problems similar to what you're talking about. I have also been on prednisone during MS exacerbations (iv infusions and high dose pills) and avoid prednisone now. I wish you the best in health and happiness. Thanks for allowing us to share in your personal journey. Voted up, sharing

    • Faith Reaper profile image

      Faith Reaper 3 years ago from southern USA

      Liz, thank you for sharing here of such a disease that I have never heard of before! One of my nieces has such symptoms and cannot find a doctor to tell her what is wrong with her, and I believe she may very well have this rare disease!

      I am so glad you are doing well this day and have learned to live with it in your own way, and I understand completely about learning to appreciate living! I have faced death two times, one with cancer and the other with large blood clots in both of my lungs, and all are healed! I know there is a reason I am still here.

      Your writing here is so great for while I was reading, I felt shortness in my breath just from reading what you have written. It made my heart speed up and that is a sign of a great writer to make the reader feel just what you were going through at the time!

      Thank you for bringing awareness to such a disease. Up and more and sharing, of course!

      Hugs, Faith Reaper

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Crafty- It's funny you mentioned the Nexium because I forgot all about it, but when I was on the prednisone, I was also given Nexium to take at the same time. I never questioned it, but now it makes sense. Sorry that you have to take all of those meds, but I'm glad they offer you some relief.

    • CraftytotheCore profile image

      CraftytotheCore 3 years ago

      I had no it could cause that until I read a Hub on here. I was on it in April/May 2011 after hospitalization for asthma. Then again in August 2011 right before thyroid surgery because I couldn't breathe.

      Feb. 2012, I had bronchitis. Went to the dr and he said that I probably had acid reflux. He refused to treat the bronchitis. I ended up in the hospital again. They gave me more prednisone. I was put on something for acid reflux too.

      Then in spring 2013, I was diagnosed with reflux disease, have been taking nexium ever since. Was placed in Yale in because they thought I was having a heart attack. Turned out it was bronchial spasms caused by acid reflux.

      I'll never be the same again. But, at least the nexium helps me a lot. I no longer have asthma issues or acid reflux issues, but am on tons of meds to control it all.

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Thanks Bill. I remember when I was looking it up, everything said the same thing. There were no blogs, no support groups. Nothing. It was frustrating. I do hope that if someone is diagnosed, they will see this article and at least feel comfort that they are not alone!

      I think Bernie Mac had this disease too, but I believe he died of pneumonia. I'm doing much better, Bill. Thank you!!

    • epbooks profile image
      Author

      Elizabeth Parker 3 years ago from Las Vegas, NV

      Crafty- I'm actually glad you thought it was funny, because I hate being serious! lol. I haven't looked up the disease in a long time, quite frankly because I got tired of seeing the same thing. I'm sorry you had to deal with prednisone too. All I know is after one month on that pill, I gained weight, I became moody and couldn't wait to get off of it. I can't believe it caused you to have reflux disease. I'm so sorry! Ugh!

      Hope you are doing well, Crafty!

    • billybuc profile image

      Bill Holland 3 years ago from Olympia, WA

      Never heard of it, Liz! That's why articles like this are so important. We raise awareness when we write about personal experiences like yours...and someone else reads it, and then they have information and confirmation and someone else who understands what they are going through. Well done, Liz! A very important article for sure. I hope you are doing well my friend.

    • CraftytotheCore profile image

      CraftytotheCore 3 years ago

      Oh EP, I had no idea! I've never heard of this before even though I've been through a lot with asthma issues. I was also on Prednisone for a while and just found out it can cause reflux disease! All be darned, wouldn't you know, I was just newly diagnosed with that too! Never put 2 and 2 together because those are the things they don't tell you....

      I'm sorry you have this. Great writing here my friend! If it wasn't such a serious matter, I would have voted it funny. You have a way with words! :D