In late 2002, I went out to Colorado and never adjusted to the altitude very well. I started feeling ill and went to a doctor who said I had double pneumonia and severe altitude sickness. I was sent home and had oxygen delivered. I left Colorado two days later and headed back to my then home in Maryland.
A few months later, I had a physical and the lung x-ray showed bulbous air sacs. I went to a pulmonologist who said I had emphysema. Since I was never a smoker this was baffling, and plus at the time I was only 40.
I moved back to NY in early 2004 and went to see a pulmonologist up here who said he didn’t think it was emphysema. He sent me for a bronchoscopy, which didn’t go very well as I am resistant to anesthesia and tried pulling the tube out my throat, so they were not able to get a biopsy. The doctor recommended a lung biopsy instead.
I didn’t like that pulmonologist very much (terrible bedside manner), so I went to see another. The new pulmonologist had a great bedside manner and listened to me. He also recommended a lung biopsy as he suspected that it was Sarcoidosis.
I was hesitant to do any surgery, and resisted, but eventually had the open lung biopsy done in 2006. That was the most painful surgery recovery I ever had (Read my post on “Open Lung Biopsy – My Truth“). The biopsy proved positive for sarcoidosis, and my lung x-rays showed that the lungs were very scarred, so it appeared that I had this for a while.
I was put on Prednisone at a high dose and then eventually tapered down to a medium dosage. Over the next year I was up and down on prednisone and was eventually stabilized at about 20mg
At the end of April 2007, I was put on a new medication. On May first 2007, I awoke at 5:00 am and my entire right arm was lifeless. There was no feeling. I literally picked it up and it flopped like a rag doll. I thought it might be that I had slept badly on the arm, but I had awoken on my back, not my side.
I sat there for a few minutes, not panicking but wondering what the hell was going on. Just as I started to get worried and was about to wake my wife, the feeling slowly returned and I went back to sleep. Later that morning I told my wife and she insisted I go see the Pulmonologist in case it was a reaction to the new medication.
I did go and he dismissed that I may have slept badly and prescribed a bunch of tests – MRIs, CT Scans, Blood tests and a full cardiac work up. Everything came back normal. Then my pulmonologist asked the cardiologist to do a T.E.E., A Trans Esophogeal Echocardiogram. That’s where they do the echo from the other side of the heart. It requires anesthesia and them lowering the echo device into your throat. And my pulmonologist’s suspicions were proven correct. I had a PFO, a patent foramen ovalae, or hole in the heart. The hole was a birth defect never picked up by anyone and likely allowed a small clot to pass through and cause a TIA or mini stroke.
I went to Mt. Sinai to have the hole plugged via a catheterization. Before the procedure, the surgeon asked if they could do it under general as the operation is usually done while awake. He said they wanted to do a complete test of the heart as they were there. I thought it unnecessary as they did a complete work up of the heart just over a month before, and it was perfectly normal except for the hole, but I agreed.
When I awoke the doctor said it all went well, the hole was plugged and in time, heart tissue would grow over and form a complete seal. However, there was another problem. The heart function was seriously low and I had heart failure. My output was low enough to justify them implanting an AICD, a pace maker/defibrillator in my chest. In just over a month, Sarcoidosis had become active in the heart. I was told that if I didn’t have that TIA and all that happened subsequently, it would have probably gone undetected and I would be dead in two months.
I have since developed pulmonary hypertension in addition to the sarcoidosis and heart failure.
Some days are challenging, but everyday I am grateful to be alive. I write this blog for other Sarcoidosis sufferers to get some information and I hope in some way, my experiences help just one person.
BR
** UPDATE JANUARY 2011**
It is now 5 years of being on Prednisone and I have developed pre-diabetes. I am working on eliminating that condition through diet.
** UPDATE NOVEMBER 2011 **
I have been able to get out of the pre-diabetes, mostly through diet changes, although I still do need to lose some weight. I am now on oxygen therapy, which was eventually expected due to my secondary pulmonary hypertension. I use 2L for sleeping, and do need to use it now for any activity, also at 2L. Exercise requires 3L.
It is a lifestyle change, walking around with portable oxygen, but I am now getting out of being self-conscious about it and realize that it is there to help and me and keep me alive longer.
My Sarcoidosis is once again active in the heart, the results obtained by a PET scan. Doctors have not decided how to proceed from here. I will have a echocardiogram soon to see what the heart’s output is, and then they will decide on treatment form there.
How does a person know when its in the heart and how to know this before you have a heart attack and or die? Sarcs has affected my eyesight and now my lungs. I’m on predisone which is reaking havoc on my sugar.
I had a full body PET scan (see here – http://en.wikipedia.org/wiki/Positron_emission_tomography – to learn more) that takes a pretty long time, is expensive, and took insurance a lot of fighting to approve. Tell your doctor you want one.
I am very lucky in that all the meds I take, I have no adverse effects. Pred has only bothered me with mood swings, which is bad enough. All I can recommend is that you see a nutritionist to help keep your sugar under control.
If you ever need to discuss anything or ask me anything you can email me directly.
Your story very interesting. You been through a lot, but still your blog is happy. Keep up the good work
You have had some challenging times and I feel for you. I have Crohn’s and COPD and had to visit several doctors in both cases before being diagnosed properly. It is something I’ve accepted and lived with but always keep a smile on my face.
Keeping a positive attitude never did anyone any harm! Best to you.
[...] My Story [...]
I was just diagnosed with Sarcoidosis by email today. Not sure how I feel about that; both the diagnosis and the delivery method. I have been sick for three years, two years being bedridden about four days a week, lately every day. Had a few right groin (lingual) lymph node surgeries; what should I expect? I apologize if this is poor etiquette to ask for info on someone’s blog, but I have been too sick to keep up with www for years. If anyone is prompted to reach out to me, I am on gmail as Acoyya@. Good health to us all…..
Thank you for your blog. My dad has sarcoidosis – has had it my whole life, but it has gotten a lot worse in the past couple of years. He just started an experimental drug yesterday, along with methotrexate. I know what a chronic illness is like – I have Crohn’s. I’d take it any day over what I see my dad go through. Very frustrating and yet he always has a smile on his face.
I have sent him the link to your blog and I hope he reads it – it’s always good to know you’re not alone in your challenges.
Thanks for dropping by. Hope my little blog can help some people feel less alone. That’s how I felt and started this blog because of that. Best to you, your dad and entire family.
It’s was a if I was reading “my own story” above. I was diagnosis with sarcoidosis after going through a rigorous military training exercise in Utah. I collapsed experiencied shortness of breath, extreme pain in my neck and left arm. Medics attending first thought I was having a heart attack! The first diagnosis was “Myo-Costochondritis” or chest wall inflammation. Also had several attempts to perform a bronchostopy( the most difficult and intrusive procedure I ever had). Just you, it was inconclusive for sarcoid. Later a thoracic biopsy was done, that included taking lung, and lymph node tissue. it’s really hard to continue this but I guess you get the idea. I was placed on a host of steriods medications, and anti-immflammatory regimes…. Today I try to live stress free, and manage one day at a time. Doctors are now saying that my condition may be exasperated by Rheumatoid arthritis.
I’m still trusting God for my complete healing.
Thanks for checking in and sharing. What a way to find out about your heart failure, but we are in the very lucky group that did find out about it. Most people find out when it’s too late and they have had their first and fatal afib. I am also one of those extremely rare, almost never before heard of people who’s heart failure due to sarcoidosis actually improved. People with cardiac sarcoidosis never recover and need a transplant eventually. I may one day need one, but I continue to baffle doctor’s. I can only attest to my staying “healthy” by always having hope, positivity and faith in something greater than myself and having a loving, understanding and supportive spouse. I send you healing and supportive energy and wish you all the best in the future. Please do keep me updated.
Your story and your blog are inspiring. Thank you for sharing this with us. I am 33 with heart failure and Atrial-fibrillation, My Echo shows a EF of 35% now up from 20%, and I am going in next week for my first TEE and Cardioversion for the A-fib. I was wondering what your EF function was at when they decided on the defib implant? We haven’t talked about that route yet, but over the last 3 years my EF has gone from 20 up to 40 down to 20 and back up to 35, and now with the added A-fib, I am sure it is likely to be in the future plans.
Thank you for the info, and the positive blog experience. I to hope to help just one person with my blog,..that will make this whole thing worth it.
Thanks for the positive feedback and welcome. When my heart failure was discovered my EF was 20%. Because my heart was very healthy a month before, there was reason to be concerned and that’s why they insisted I put in the defibrillator.
I recently wrote a post about my defibrillator implant experience, which does not mean it is that way for everyone. Living with a defib is a big life change at first, but you get used to it.
Please feel free to email me at any time if you have any questions. I am glad to help. Best of luck with everything.
Thank you for following along. Sharing your story shows the great strength in you to live and make meaning out of your story! That is absolutely fabulous! And what a gift to share your story with others so that they find strength through yours. I have great respect for you. Continued blessings on your journey, Erin, Bella Bleue
Basil, you also seem to have a great positive attitude. I can’t imagine going through everything you do but somehow, you do it, we do it. We adjust, we manage, we cope, we hope. And yes, letting go of our old self is definitely challenging. We adapt to our ‘new normal’, our new reality.
One day at a time!
Marie-Chantal
If u have cardiac sarc u may as well skip the ICD procedure and go straight to the AICD procedure. My husband has cardiac sarc and sarc in his lungs, lymph system, etc….the problem with cardiac sarc is it is unpredictable and difficult to manage….keep up with ur pet and or gallium scans if u can…
Isn’t ICD and AICD the same thing?. Not sure what you mean be a different procedure for each.
What a story. I am glad you shared this. Your courage in the face of these challenges is truly inspiring.
Thanks for dropping by and taking the time to read my story
Hi, I was scanning for any inritmafoon connecting sarcoidosis and asbestos when I found your articles. I was diagnosed with sarcoidosis over 14 years ago and told I would not get much better. I had chronic low grade plurisy and walking was agony. I was only 28. I tried steroids for 3 wks (prednis) but they did not help. I was prescribed voltarol which I took for a year daily. I gradualy weened myself off voltarol onto bio-selenium and zinc and started to have various natural therapies inc. reflexology and herbalism amongst others. I started gentle exercise and built up my strength riding horses. I discovered this was non aerobic exercise so it was easier on my lungs. Since then i have been working with and exercising race horses, take no medication and dance my socks off jiving every week. However I do have to work at the balance and have had minor hiccups. I may have been exposed to asbestos at 7 yrs as my father who brought it home on his clothes from his plumbing job died of asbestosis. I was at home recovering from rheumatic fever after spending 4 months in hospital so I was weak. My 13 siblings may also have been exposed but perhaps they were stronger. Time will tell.I believe sarcoidosis may have many causes and triggers. My advice would be get to know your own body and what it responds well to and use any knowledge you can get your hands on to help yourself. Contact from anyone who thinks I can be of support to them in any way are welcomeI
Thanks for sharing your story. Do you have a direct email that you can be contacted at?
[...] My Story [...]
Thanks for the encouragement. I have had sar or 27 years. Recently I was not feeling well, went to the pulmonary Dr . He sent me for an echo the results were shocking. My ef was only 25 they said I had chf. Recently had my first bronchoscopy. Dr. Said there is a lot of inflammation , want to put me on Imuran. Little bit afraid of the side effects. Been on prednisone and now on plaquneil. Thanks everyone for letting me know I am not alone!!!
Plaquenil seemed to have worked very well for me until I came off because of low white blood counts. Hopefully it helps you. Are you on any heart failure meds? I think part of what helped me a lot is that I see a different specialist for every condition including my general practitioner. It’s not easy, but stay positive, have faith in yourself and faith that there is a higher energy and it will be easier. Good luck and be well and happy. – B
Yes, I am on other meds for the heart. I too see different specialist for each condition. Recently had another bronch due to a narrowing in my windpipe. Dr. Said sarc can cause the narrowing with all the scarring. Thought they were going to put a balloon in to open the narrowing, but God is so good the narrowing has started opening on its own. No balloon was needed. I hope everyone continues to have faith and know that we are not alone!!
Thanks for sharing. I learn something new everyday, as I never knew about the narrowing of the air way from scaring! Glad you are better!
Found out i had this disease neurosarcoidosis in 07 – Brain and Lungs it has been a rough road to say the least – Chemo,Steroids and so many meds i cant list them all – But their is HOPE and I urge you to keep fighting – I found products outside the medical word that improved my life and improved my fight against this terribble disease – Thank you for letting me write this
Thanks for the comment. I too do use some natural supplements, but must be cautious as I do take a cocktail of prescription drugs for my different conditions. Due to the complexity of my case, I have to be very cautious of what I take.
If you don’t mind can you email me with the Natural supplements you are taking because I’m in the fight of my life and I’m always looking for natural ways to improve my health if I can I Thank you so much Danny B
Might I suggest you look into reading The Aiden Protocol. I have not followed it, but there is some info in there that may be useful to you
Thanks for sharing that information. Sarcoidosis is a puzzling disease . Sometimes I seem to forget I have it and these other issues come up, I just don’t know. I have been diagnosed since 1984. Been on prednisone , got diabetes, hypertension from that. Have heart failure now , had a low heart function . I am now on quite a bit of medication . Had most of what you did, open lung bioposy. Had bronchoscope. Pulmonogoist now thinking about Imuran. I hope they will find out more information about this disease. Good luck to you!
Thanks for dropping by. I think sometimes the treatments are worse than the disease, but I guess it is a necessary evil. Best of luck to you too!
Hi, found your blog today. I want to read more–being positive is such a great thing! I was finally diagnosed with Sarcoidosis of the lungs and heart November, 2011 (I was 42). Took over a year to get a final diagnosis. Started with a cough spring of 2010. I was put on high doses of Prednisone in November and now down to 5 mg. My pulmonary doctor is trying to get me off completely but has said I may need a maintenance dose for the rest of my life. Had an ICD put in in February, 2012 (this has been the hardest part to accept emotionally). My heart function was about 50% at that time. Everything I come across on Facebook and other blogs is so negative and depressing it scares me. I have not been given that type of information from my doctors. I’ve had nothing but positive treatment and outcomes and I get upset reading the negative because it makes me feel my future may be very bleak–when in reality I’m looking at a very bright and positive future. Wishing you a bright future!
Thanks for reading my blog. I started this blog for that very same reason. All I could find in the Internet was negative info and basically everyone just saying grab a couch, watch some TV and wait to die, because you are not really good for anything else. Just keep being positive and having faith and hope. Fight the good fight and enjoy every second that you have. Be well.
I don’t really “like” this per se….just the fact that you shared your story. Thank you.
I hear you. I really wish there were other choices besides “like”. Sometimes it seems inappropriate.
I pray god heals you, I read your story, Im not diganosed
or any issues. just come sick with cold. I wanted to let you know
your strength is growing everyday!
I pray that god heals you, and you get stronger and stronger and win the battle, that a break through comes out and your well again.
Thanks for your positive wishes. I hope you feel better soon
I have sarcoidosis in one eye and lungs. After 5 years of battling the eye issues they finally suspected sarcoidosis after sending me to a research study for the eye, where they found the sarc in the lungs via chest X-ray.. After a CT scan and bronchoscopy, the results were inconclusive. The pumonary and eye doc decided to go ahead and treat me as if I for sure had sarc,, even though they could not be 100% positive. Now a year later my pulmonary doc sent me for another CT scan because I was noticing a cough and my eye had flared up again (after being on methotrexate and prednisone for a year). Well she called me and said there’s no doubt now. It’s full blown flared up in my lungs and eye at this point. My eye doc says it is highly likely it will eventually go to the other eye if it doesn’t go into remission. Wonderful blog. Thanks so much.
Sorry to hear about your sarcoidosis. I am always very sad when I hear of new cases. It is not a disease I would wish on anyone (not that I walled wish a disease on anyone). I hope yo caught it in time though. Glad you enjoy my rantings.