Pneumonia and Sarcoidosis

The loss of Bernie Mac is a sad thing and I, like so many others, recognize that there is less laughter in the world without him. I will miss his very down to Earth sense of humor.

I know his passing has also hit many people in this community deeply because of his other disease, sarcoidosis. I myself heard the news while at work and was momentarily stunned as I tried to process the information. I could not help but try to apply it to my own circumstances, which I am certain is a normal response; after all, in some way Bernie was a member of a special club that we are all carrying membership cards for.

There is something that bothers me about the news stories and the articles surrounding the tragedy of Bernie Mac’s death. I think my concerns, though, are different than most of the issues that have arisen. My first concern is that the Mr. Mac’s family are being hounded by so many agents in search of a new twist on this story and that so many opinions about his life, his disease and his death are being publicly raised by people who have no actual first-hand knowledge of any of these things. From personal experiences I know that losing someone is a grueling occurrence and the added attention of the media or, worse, gossip from wanna-be journalists and experts can only add to the burden that the family must be dealing with. This family has enough to cope with and needs time to be together to sort through this most unexpected of events without the obnoxious intrusion of various microphones, cameras and interview-hounds.

I know that many want more information as they try to come to grips with the unexpected passing of Mr. Mac; but how much more so is the family struggling to come to that same feeling of being able to understand and move forward. The members of this community can be most supportive by not helping to spread the speculation and not feeding the machine that provides it. In due time much more information around the occurrences leading to Bernie Mac’s death will arise, but there is certainly no reason why the general public should be on a first-to-know list regarding these details. The most supportive and respectful thing that any of us fellow sarcoidosis sufferers can really do is to share the fond memories we have of Bernie and his work while we patiently allow his family the privacy they deserve.

The second thing that is bothering me about the events since Bernie Mac’s passing is that there seems to be a sense on this board that he should somehow be redefined by his diagnosis. Bernie Mac was a talented human being who obviously had a compassionate heart and a lot of humor to share with the world; he was a husband and a father and so many other things that to simply try to define him as a celebrity with sarcoidosis is to do him a disservice. Let us not give the disease so much emotional power that it becomes how we define people. Mr. Mac said on several occasions that he was in remission and there would be no reason for him to hide behind that word. Perhaps there is some actual evidence, somewhere, that he had a recent flare or was on some medication but it still should not be of concern to us – he should not be on trial for his claims of remission. There is no reason to think that the hospital, physicians or coroner would break so many felony statutes as to forge a cause of death.

It is discomforting to think that there are those who want to say that the role of sarcoidosis in celebrity deaths is being covered up. To try to suggest that sarcoidosis is a stigmatized disease is to do a disservice to so many people, both those with sarcoidosis and those who have fought so hard to overcome the stigmas of their diseases whether it is HIV, mental illness or cervical cancer. We should rejoice in the fact that we can tell people we have sarcoidosis and they don’t start donning hazmat suits or shielding their children from us. Let us please not try to recast sarcoidosis sufferers as lepers of the 21st century.

There is something else everyone here should know. The most commonly diagnosed illness among patients admitted to the hospital is pneumonia. There are apparently many misconceptions about pneumonia and how lethal it really is. Pneumonia can be caused by a variety of bacteria, each with their own idiosyncrasies. People with chronic lung disease such as active sarcoidosis, asthma, emphysema or COPD are at higher risk of contracting the disease as are people with diabetes, immune disorders, undergoing recent surgery, smokers and anyone who drinks alcohol regularly. The disease can be lethal to any age group from newborn to ninety-nine (or more). Although it may seem rare for someone in their early 50s to die from pneumonia, it is not as uncommon as we all might like to think. Before the advent of antibiotics the mortality rate from pneumonia was unbelievably high and to this day patients who forego treatment are unlikely to get better. The complications that can arise from pneumonia are not exactly a short list, but it does include heart problems, pneumothorax, respiratory failure and septic shock. Any of these conditions increase the likelihood of death significantly and they do happen; I see at least one of these a week on average.

Pneumonia is not an uncommon disease, sarcoidosis is. Just because someone has sarcoidosis does not mean it is the root cause of all other ills in their life, though. I have known patients with terminal cancer to die from pneumonia. The leading cause of death in pregnancy is still car accidents. The single diagnosis of sarcoidosis does not set the stage for everything else. It may be one of many factors that could play a role in susceptibility or in making something more difficult to treat, but I think it is much more likely that the common thing was simply a common thing. Let us please not give this disease such power over us that we blame it for the other ills in our life. Such a mindset will never lead to overcoming the disease.

Ok, I’ve said my piece. Sorry it was so long…

Report post

21 replies. Join the discussion

Paradox,
Once again you have eloquently put things into perspective. Thank you.

Report post

Dear Paradox -

You have so eloquently put into words many of the same thoughts I was mulling over this past week-end but couldn't piece together.

Thank you for your bright perspective and for a clearer understanding of not only what we are going through but others.

Report post

Dear Paradox,
Amen to that

Report post

You are absolutely right. I had been thinking many of the same things. It's wasn't Mr. Mac's responsibility to lead the Sarc. battle...and yet I know when so many of us feel so lousy it's easy to become desperate for anyone to help find a better way. Pat-y

Report post

Hi Paradox,

I think there is a tendency by doctors generally to make light of the suffering of people with sarcoidosis. It is fine to take a positive attitude to the disease and beat it. But not everybody does.
Whether Bernie died of sarcoidosis itself, or whether it was due to drugs weakening his immune system, it was sarcoid-related.
My dad had lymphoma but had no sign of it in his body at the time of his death. He died from Hep C contracted from a blood transfusion. The doctor still wrote Lymphoma on his death certificate. Although we know lymphoma didn't actually kill him, his death was lymphoma-related because it was due to the lymphoma that he had the transfusion in the first place. As I saw one guy write, if Mac was found out to have sarcoid, he may not have been able to work, or get insurance. He may have lied about being in remission in order to advance his career, or took drugs to keep the disease at bay for the same purpose. When I was admitted for mediastinoscopy, I shared my pulmo ward with two ladies who had pneumonia - so yeah, it is common. If my dad's liver hadn't packed it in, either his heart or pneumonia would have got him anyway. I could hear him weakly coughing at night the week before he died. It doesn't matter what killed Dad or Mac, lymphoma and sarcoid probably set them on a course for death, even if it technically didn't kill them.

Pris

Report post

Thank you all for your very articulate posts. I myself was very angry yesterday regarding what I thought was a cover up to the cause of Bernie's death. What started my anger was my brother-in-law. He waltzed in my room as if he was of royal superior blood and announced to me that Bernie did NOT die from sarc and therefore my disease was not as bad as I made it out to be. It is this type of attitude that wounds me. I suffer every day. I'm in horrible pain and my doctor refuses pain meds and at times I feel so out of control. This lack of control eats at me along with all the other crap sarc brings. Then, to have my supposedly genius IQ brother-in-law tell me in a round about way that my suffering was a tooth ache or a headache sent me to a very dangerous place. I wanted to lash out. I wanted to know why Bernie or his family would want to sweep this disease under the rug. But after calming down and reading everyone's wonderful posts I realized there is nothing simple about this disease and life is complicated at best.

Thank you and you have my deepest regards.
Jackie7

Report post

I agree with all of you. Thank you Paradox for your input. Now that I have seen more info about Bernie I feel better. I do feel for his family and want them to get the time they need to deal with his death. People choose being a celebrity for many reasons. Talent is a big one but they choose to be in the public eye. I hate most of the tabloids but I am guilty of wanting more news when it is something that I share with that celebrity. I am hoping that after the dust settles the public will know more about this dreaded disease. The fact that he suffered so makes it no longer just a little annoyance we have. If I died tomorrow nobody would know how I suffer or what this disease is about. With Bernies popularity at least there are discussions and the info will get out to the public. That is all I can hope for.
Bunkie

Report post

Pris,

Some interesting theories there regarding what Bernie Mac might have done or been taking, but they are purely speculation. No one knows if he was taking any medication for sarcoidosis at this time, although rumors do abound and continue to feed the machine. As for denying the disease to further his career it makes absolutely no sense. There is nothing to be gained for an actor by lying about the disease when he could have gotten so much more publicity out of having a rare disease. As for insurance, this wouldn't be a problem for him in any case and I have yet to see anyone turned down for insurance because of carrying the diagnosis without having an oxygen requirement.

I am truly sorry that your father suffered from lymphoma and hepatitis C, but I can guarantee you that in the US you can not attribute a primary cause of death to a condition that can not be currently identified. Physicians are required to fill out the death certificates here, but are not the final authority on them. As for sarc starting Mr. Mac on the way to dying, I think that his birth would have initiated that journey. Every single experience we have ever had has culminated to bring us to where we are right now. To pick one of those past events out and somehow hold it above all the others is selective and certainly not scientific or supportable. There may be a thousand other things that made Bernie more susceptible to pneumonia, the truth is that no one on the board knows and speculating about it will not help anyone's cause.

Report post

I know exactly where you're coming from. When I heard about Bernie Mac's death I felt sick at the stomach. I knew that I shouldn't be selfish and think about myself but I did. I'm thankful to God every day but i'd be lying to you if I told you that I wasn't scared when I heard about his death. I've gotten it into perspective now and am okay.

Report post

JBrock, I'm with you. When I read he had sarcoid and that his immune system could have been weakened by the meds for sarcoid, thereby making it easier for him to get pneumonia, I got scared. I have been feeling lousy and I've been seriously considering allowing my doc to put me on something more than the inhaler and the Advair. Now I'm scared. If the drugs break the immune system down that much, I'm not sure if feeling better is worth it. But then at the same time, some days I can barely breathe. I sure wish I knew what to do. I'm very sorry about Bernie Mac's death and I too hope his family has time to breathe and to mourn his passing. But I also hope this allows sarcoid more notice and research by the medical profession.

Report post

Just for the record... I don't think there is one person on this site who wants the time taken away from Bernie's family. They are human, they have lost their family member and they need their time. I don't think comments on this site are going to take anything away from his family and their grieving time. This is a site for individuals to share their pains, their happinesses, their experiences and to be there for each other. I agree we shouldn't take something we hear in the news for complete reality (like Bernie trying to cover up meds, to get jobs, etc...). But I think we should continue to share our fears, concerns, and happiness if that's what helps get you through the day.

This is a bad disease and there are various individuals who are suffering more than others. I'm sure everyone here wants to think positively about the diesease, their disease, but their are individuals who are in pain, who are depressed, the list goes on (just reading the posts) who are in an unbearable situation and others who are still able to lead their normal life with minimal changes.

What I'm getting to is the fact that it is real easy to say focus on the positive and the world will be a better place. While I happen to personally agree with that -- the world isn't always a happy place and when you have pain, and fatigue like so many of you do - it is okay to want the media to focus on this disease in this situation. Whether Bernie died of Sarcoid or Pneumonia really isn't the issue that keeps coming up... the issue is more that the disease exists and it isn't something simple and there needs to be a whole lot of research done before someone states people go into remission with 2 years - that's bogus information for the here and now!

So for those of you who feel more should be coming out in the media - don't feel bad for any statements you have made! You are human and I know there was no ill intent or loss of thought for Bernie's family in your statements.

I hope those who are in remission stay in remission! I hope those who have minimal issues with this disease stay at a minimal issue or go into remission. But for those of you who have been living the hell for years - I pray for your hourly, daily, weekly, etc. relief!

Take care!

Report post

Paradox,

Thanks for helping us bring this very distressing situation into perspective.

Michele

Report post

Everybody deals with stressful situations with their own beliefs..

I havent chimed in on the B.Mac stuff as I just dont like dealing with people dying. It happens. Sad.

He was a funny man. No doubt.

But I will stick with my beliefs on this final note...and I believe Im gonna go have another cup of tea and move on.

Hope you all are doing well.

And Paradox. I hope the taper is going well with you. Dont work to hard.

Report post

Hi Paradox,

Of course laws differ in varying countries. I am in Australia, and for all I know, the law regarding death certs may have changed here since my father died. They change the immigration laws so often it would make your head spin.

I can understand where your coming from Paradox. I also understand you are trying to dampen people's anxiety. I have to say, I for one have never been afraid of having sarcoid. In fact, I was more afraid not knowing what I had. I think Australia's population being a 10th of the States' means our doctors out here are less experienced and knowledgable on the sarcoid front. I often wonder how people on this site "know" they have sarcoid in the liver, spleen, lymph nodes etc. because doctors out here don't seem to want to do anything invasive at all, or even consider trying to find out about things, as Tawney is finding. It can be very frustrating from a patient's point of view.

The other thing that gets thrown in our face is science, methodology and probability. i.e. "We won't do that test because the probability that you have this is infinitesimal." I understand doctors are governed by laws and spending considerations, so they cannot always do what they would like for their patients. Many of us (that is women with sarcoidosis especially) have had to put up with doctors telling us we are hypochondriacs, menopausal, hysterical, depressed, imagining the numbness and tingling, or that where just getting a cold, or that waking in the middle of the night gasping for breath was merely a bad dream - on the way to being diagnosed. In some cases, the process may have taken years. I know we cannot blame doctors if we don't have obvious symptoms or when consults average less than 10 minutes. But how often these days does a PCP examine a patient? When you go to the doctor complaining of a sore throat for the third time in a month you might expect a doctor to at least take a look at it. In my experience and that of friends and family, they rarely do. Many patients are actually afraid to ask a doctor to do such a thing in these circumstances. When I have had problems like this and I have plucked up the courage to ask they have often refused to examine me or do a particular test. This is annoying when you go to another doctor and they do examine you and find there is a problem, because often you have had to wait to get into see them. I can quite understand why a doctor would refuse antibiotics when a common cold is obviously viral. However, when you have a chronic illness, a refusal to look at a lump, gland or swelling could send some patients off to quacks, alternative therapies, the internet, herbal self medication or over-the-counter self-medication. Having a chronic relapsing illness is a trial when the system is set up for acute care. It seems to me that many sarcoid sufferers end up in acute care because specialists and PCPs have not taken their complaints or concerns seriously. I read a sociological study about people with chronic illnesses who self-medicated. I have been driven to it myself. I am happy to report that none of the doctors actually scolded me for doing this. But I am also sure many patients would be scolded for doing this. It is understandable if you did this with a new symptom. When you have several doctors dealing with different specialities and none of them can agree on your diagnosis or treatment, you soon learn that medicine is as much art as science; and that a specialist's opinion is just that - an opinion. Faced with this sort of thing, I decided to educate myself about sarcoidosis so that I could at least make informed decisions about treatment, or doctors' opinions of my diagnosis. I am very lucky that I have a good PCP, because some of the specialists I have seen have not only had a poor bedside manner, many have made up their minds within the first ten seconds of the consult and no additional information could sway them from that initial opinion. It is very difficult for us lay people, who have been ridiculed by doctors in the past to ask questions, give additional information about symptoms, or tell the doctor a certain treatment didn't work. As I say, I am generally mousy and deferential, but I now will speak up if I think a doctor is completely off the track, has misinterpreted something I have said, or is just plain looney. You may think looney is too harsh. However, when you work in a lab and only ever see two types of tests requested by a particular doctor (urethral and vaginal swabs), then you go to her medical centre with a sore throat, and all she is interested in doing is a vaginal swab, you hit the floor running. I guess being a path technician and then being a patient with a chronic illness has made me very cynical about doctors. When you find good ones you stick, when you meet bad ones you don't go back. I guess what I am saying is that sometimes statistics get in the way of doctors seeing patients as individuals, and it can be an excuse for witholding treatment and thus exacerbating illness or not investigating valid complaints. Furthermore, patients with sarcoid who have been ill for several years notice patterns which they attribute their illness, regardless of current science, and no amount of reassurance or refutation from their doctors will dissuade them that these phenomena were not caused by the disease. Have you seen the article in the Chicago Tribune?http://www.chicagotribune.com/features/health/chi-bernie-mac-sarcoidosis,0, 4304063.story
Sorry if I appear to be a doctor basher, but I bet every sarcie here has come up against this refusal and resistance at some troublesome stage of their illness. And it is not only sarcies and sarc, it is now something that appears to be commonplace.
Pris

Report post

Dear Paradox,

My Dad was diagnosed in 1986 with Waldenstrom's Macroglobulinemia. It is a rare? form of blood cancer. He used to tell me with a grin that it was turning his blood to mud. I so loved my Dad.

As a flight attendant with free flight privileges and my Dad having the same benefits, I convinced him to fly with me to Houston,Texas for a 2nd opinion. I wanted him to be seen at the best cancer hospital and receive the best treatment.

At that time, the 2 big names in cancer treatment were: Princess Margaret in Canada and MD Anderson in Houston. We wanted to stay in the states, of course, and so off we flew to Houston.

I subjected my Dad to his 2nd bone marrow biopsy and they are oh, so very painful. We had his diagnosis reconfirmed and flew home after 3 or 4 days of testing.

The time was not wasted, as we had our evenings free and had some wonderful moments together, some wonderful suppers. We dined, we talked, we spent private time just being together.

I am the eldest of 6 children, so we rarely had time alone together. My parents were divorced and I also wanted him to realize how much we all cared for him and that he was not alone.

His kidneys begain to fail and he spent 5 years on dialysis. They dialize patients through the placement of shunts under the skin in the inner part of your lower arm.

In 1991, after both shunts had failed, and the doctor began dialysis through some type of contraption in his neck, he told the ICU nurse to call his children, get the things out of his neck that made him "look like Frankenstein." He wanted to go home.

He was gone in 2 1/2 days. The blood cancer had been the cause of my Father's death. His death certificate read "Cause of Death - Renal Failure." I didn't care if it read skiing accident. My Dad was forever gone from my life.

My Aunt Helen - cause of death read: Pneumonia. She died from lung cancer (small cell) We all know how virulent that is.

My friend Sarah - cause of death read: Accidental overdose of alcohol combined with a lethal dose of Ativan, a benzodiazepine. Accidental or not, she was also in the final stages of lung cancer.

Email George Clooney. He was a good friend of Bernie Mac's, a dear friend. Maybe he can get all of the Hollywood players on our sarcoidosis bandwagon. This would give him something productive to do with his life, besides dating 29 year olds and looking in the mirror.

Yea, I know about his involvement in Darfur, but it's not enough. He has stacks of money and I guarantee nothing but the Venice Film Festival and possibly Bernie's funeral will get George out of his Lake Como villa this summer.

I don't know if Bernie wanted to hide his disease or not, but at the end of the day, it's none of our business. Let the Family bury this man in peace. Call on his big hollywood friends to honor the man by setting up a fund to attempt to eradicate the disease that he suffered with, whether it played a hand in his demise or not. The only thing Bernie Mac owed us was to be a good entertainer and he certainly was that.

Thanks Paradox for the heart and soul that exists under that "White Coat" and may God bless and take care of all of us... JanetG

Report post

another online article - interesting interview w/ om sharma - is:

http://www.sciam.com/article.cfm?id=experts-sarcoidosis-bernie-mac&sc=rss

Report post

Dear singernomore,

Thank you for sharing an excellent, informative article from a very reputable magazine with all of us.

I think Paradox will agree.

I've printed the article to save in my file. I hope you are doing well... JanetG

Report post

Dear Paradox: Thanks and when can I become your customer? I love every take that you have on stuff for sure!!!!!!!!!!!!!!!!!! Quiet sarc, eyes for now, got that cancer off; now it is on to dr. cancer for some good chemo so thanks for being there.!!!!!!!!!!!!

Report post

This is from an article and is a quote from a family member. The sister-in-law says Mac's inflammatory lung disease contributed to his death. "He had sarcoidosis, but it was in remission," she says. "But because he had it, his immune system was compromised. He had an infection ... He was on a new medication that suppresses the immune system, and that's where the pneumonia came from."

I says, "He was on a new medication that suppresses the immune system...". That does not sound like a disease in remission.

We all will miss Bernie Mac, he was a straight forward very real comedian. I feel for his family and they do deserve their time to grieve. However, we living with sarcoidosis don't have much of an opportunity to have it in the spotlight, if you just give it time, it will not longer be in the spotlight and the opportunity will have passed. Most of the doctors interveiwed stated it was a benign disease and that it mostly went into remission. I was at a new primary care doctor yesterday and he could not even pronounce it correctly (my other released me because he doesn't want to work with other doctors, the note said he was a "family practitioner") anyway, that is sad. I live in a state that is very difficult to find a doctor that will treat it or even take the time to look it up and with SSDI fighting me every inch of the way, who can afford to go out of state to a proper sarc facility.

Anyway, now that I have rambled, I don't think anyone means to make less of Bernie Mac's death or label him differently. We expect celebrities to be role models in life and they all support their causes. He created a foundation for the disease so I would hope that he would be proud to help shine a light on it.

Report post

This is from an article and is a quote from a family member. The sister-in-law says Mac's inflammatory lung disease contributed to his death. "He had sarcoidosis, but it was in remission," she says. "But because he had it, his immune system was compromised. He had an infection ... He was on a new medication that suppresses the immune system, and that's where the pneumonia came from."

It says, "He was on a new medication that suppresses the immune system...". That does not sound like a disease in remission.

We all will miss Bernie Mac, he was a straight forward very real comedian. I feel for his family and they do deserve their time to grieve. However, we living with sarcoidosis don't have much of an opportunity to have it in the spotlight, if you just give it time, it will no longer be in the spotlight and the opportunity will have passed. Most of the doctors interveiwed stated it was a benign disease and that it mostly went into remission. I was at a new primary care doctor yesterday and he could not even pronounce it correctly (my other released me because he doesn't want to work with other doctors, the note said he was a "family practitioner") anyway, that is sad. I live in a state that is very difficult to find a doctor that will treat it or even take the time to look it up and with SSDI fighting me every inch of the way, who can afford to go out of state to a proper sarc facility.

Anyway, now that I have rambled, I don't think anyone means to make less of Bernie Mac's death or label him differently. We expect celebrities to be role models in life and they all support their causes. He created a foundation for the disease so I would hope that he would be proud to help shine a light on it.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders