Any Northern Cali Sarcis out there???

Just wondering how any of you in Northern California are dealing with all the smoke???? I am in Rancho Cordova (Sacramento) My symptoms of Sarc have been pretty much under control with the help of my meds, but with this smoke I am soo DONE!!! And not to mention the heat and the fact that my house and AC are as old as dirt isn't helping!!! I have been locked up in my house and only go out when neccessary! I also have to deal with trying to keep a 5 and 7 year old locked up in the house too, which is good for only so long!!! I took them out yesterday to go to Chuckee Cheese to play some games and get out of the house for at least a while, but when we came out the smoke was soooo bad it looked like a foggy winter day! My chest is hurting so bad I feel like it is being ripped apart and my voice, well it comes and goes enough with this sucky disease, but right now I can barely speak (it doesn't hurt, I just can't be heard!) Any one else out there dealing with it!Diabetes and didn’t know it he wasn’t feeling so hot and his kidneys gave out on him… ??? If so can you please tell me what you are doing for yourself tofeel at least a little better at least mentally! THANKS!!!

By Chief-2101
Posted July 10, 2008 at 4:18 pm

Hi Tuppermom,

I live up in Trinity County where I currently have fires on all sides. One is about 10 miles away from my house. The smoke is so thick that I can hardly see my neighbor’s house, which is about two hundred yards away. I feel like I have an elephant standing on my chest and the cough has come back very strong. Now my heart is doing all kinds of weird stuff (PVC’s). I don’t know if it’s the disease, the smoke or the meds. Is it really bad down in Sacramento? We were considering going down next week after my doctor appointments.

I'm the only paid fire chief in the county and I haven't been able to go to work becasuse of the illness. Pretty bad when you're a fire chief and can't be around smoke.

Take care and I hope you feel better.

By Teacherteacher
Posted July 11, 2008 at 6:28 am

Hi Tuppermom and Chief,
I'm in southern Cal and went through this last fall. Be very, very careful, use a fine particle surgeon's mask.

When the fires started, it brought on pneumonia and a dramatic negative change in all my sarc symptoms.

Do all you can to avoid going out. It is scary living through the fires and the uncertainty of evacuations.
Take care,

By Chief-2101
Posted July 11, 2008 at 9:04 pm

Teacherteacher,

Thanks for the input. I’ve trying to stay inside with filtered air. It is miserable outside with the heat and the smoke. One of the frustrating things is that I don’t know what is causing the chest pain and PVC’s, the smoke, sarc or meds? This is going to be a long summer and very bad fire season. Two of the fires close by have jumped the lines and it has been very windy up here. Not good. Usually in the summer we can sneak away for a few days and we go to Trinidad on the coast to cool off and get some fresh air. They are smoked in also from all of the fires.

Thanks again and take care.

By Tuppermom
Posted July 11, 2008 at 9:51 pm

Chief 2101 - can you please tell me what PVC's are? I feel for you being so close to the fires must make you feel even worse than I am feeling down here, and I know I feel really crappy! Today my cough is non-stop!!! I haven;t had a coungh like this in a few months and NOTHING seems to be working. The meds I did have were something I have to take 3x a day, I don't know whether to start them again or hope it passes!!!

By Chief-2101
Posted July 11, 2008 at 9:54 pm

Tuppermom,

PVC's are premature ventricular contractions (missed heart beats). How smokey is it down in Sacramento? We're looking for a place to go for some fresher air.

By Tuppermom
Posted July 11, 2008 at 11:43 pm

They say it is going to get better, but as of today the are is still in the "unhealthy for sensitive groups". Hopefully with the little delta breeze we are getting it should get a little better within the next few days. When were you thinking of coming this way? On another note, I amhaving pains in my chest, but I don't think it feels like missing beats, and it doesn't necessarily hurt continuously, but it does some of the time, but is really uncomfortable! Anyways, let me know when you areoming this way and I will keep checking on the airquality for you! Take care

By Teacherteacher
Posted July 12, 2008 at 1:39 am

Chief and Tuppermom,
If you can get an Oxymeter (the finger clip to read O2) it will help you know when you need help. When my O2 drops my PVCs and PACs start leaping all over. I have chest pressure and sometimes pain. Minimal exercise can set it off (bending over to pick up something, walking across the room, talking on phone)

This was really noticeable during the fires. I am guessing the smoke particles set off the inflammatory response. PFTs (lung function tests) dropped big time and first showed restriction and no response to inhalers, now show obstruction with response to inhalers.

Chief, if you have a place, family etc that live out of the area that you can go to until the fires are down.
Go. It is not worth the long term continued exposure.

Imagine your air filters in the house clogging up with all the soot. No doubt the lungs are clogging and keeping the oxygen from the heart the same way.

I'm praying for rain.
Take care.

By gnomelady
Posted July 12, 2008 at 3:42 am

I'm in Magalia, just above Chico and Paradise. We've been hitting the 450 ppm today on air quality-- and it sucks.
I'm on my portable o2 24/7 and still having the chest pain.
Part of it is the inflammation of the lungs, but watch that PVC issue. It can be a sign of cardiac sarc. That along with not getting enough o2, can make the heart work harder to get o2 out to your extremities, and eventually you can develop pulmonary hypertension-- where the main artery coming from the lungs to the heart has to thicken to handle the extra blood flow the heart is demanding, and as it thickens, it narrows-- and we get a blood clot before it or after-- and that is not a good thing..
I have the neurosarcoidosis@yahoogroups.com site-- come on over and see me there!

By Chief-2101
Posted July 12, 2008 at 4:40 pm

gnomelady,

Thanks for the info. You must be really smoked in over there. It's pretty nasty over here and supposed to get worse today. We have about 1/4 mile visability right now.

I'm seeing a cardiologist in Redding for the heart issues. The doctor doesn't seem too concerned about it though. I feel that each new doctor blows things off as soon as I mention that I have sarcoid. My guess is that they do not understand it or have enough knowledge about it.

Take care and I hope you are feeling well.

By Chief-2101
Posted July 12, 2008 at 5:10 pm

Teacherteacher,

Thanks for your response also. My family all live in Northern California and there appears to be smoke all over. I do have access to a pulse oximeter. I’ll have to check it out. My daughter came home last night with a fever and a productive cough. A lot of people have the same symptoms because of the fires. I’m trying to stay indoors with filtered air (air conditioning). If the power goes out I’m in trouble.

By adventurer
Posted July 12, 2008 at 9:47 pm

Hi Tuppermom,

I don't have sarc, but am trying to be supportive. I live in bishop (east side of the sierra). Reminds me of the old days growing up near los angeles on very smoggy days. Yuk. I work in a physical therapy office & a lot of people are suffering with chest pain.

good luck.
adventurer

By Teacherteacher
Posted July 13, 2008 at 9:20 am

All sarcies in the smokie areas,
Pay attention to the color of sputum you cough up and your temperature by thermometer. If sputum changes color, one of your docs need to know. Infections develop quickly and you don't want to have it get out of hand. A doc that knows you and will handle some over the phone during the fires will save you from going out in it.
The stress on your body will make you more susceptible and your weakest system can flare. Stay hydrated, watch funny movies and be kind to yourself.
Take care,
TT

By gnomelady
Posted July 13, 2008 at 8:00 pm

Yeah, the smoke has us at Hazardess for air quality-- about 470-- no deep breathing going on here.
I too just went thru a cardiac workup-- found that the valves in my heart are all not closing off fully, and sticking when reopening. I also had an pericardial effusion spot on the back side of the heart-- and that was the source of my chest pain.
That is when the inflammation gets into the heart sac, but the cardiologist blew it off, nothing to worry about until it makes the heart beat irregularlly--- or stop beating all together.
Get the Cardiac Sarcoidosis Brochure from FSR-- as well as the one on Sarcoidosis--- and educate those suckers-- they haven't a clue that this is the signs that happen when sarc is effecting the heart-- a 24 hr holter monitor will show them alot more of what is going on with you that a regular ekg won't show.
Yesterday late, they lifted the evacuation warning, so we're still hoping the wind doesn't change and blow the fire across the Feather River and straight up to us.
It's nerve racking-- and all the important stuff will stay in the trunk of my car until these fires are out.
Take care,
gnomelady

By janemlr
Posted July 13, 2008 at 10:43 pm

We're in Newcastle just below Auburn. My husband was first diagnosed in 1985 and has had eye, neuro, heart, lung,sinus and who knows where else involvement. Current issue is pulmonary hypertension....does anyone know a physician that's knowledgeable in our area? We last went down to see Dr Sharma at USC but it's such a long trek!

By Chief-2101
Posted July 13, 2008 at 10:51 pm

Hi janemlr,

When I first got sick and had x-rays taken I was told that I had pulmonary hypertension. Two radiologists, one ER doctor and my family doctor said that is what it looked like. I was sent to a pulmonologist in Redding, CA, Dr Lupercio. He told me that I did not have pulmonary hypertension and I’m pretty sure he said that he was the pulmonary hypertension specialist in the north state. I will see him on Tuesday and I will ask him for you.

Take care

By janemlr
Posted July 13, 2008 at 10:56 pm

Thanks Chief! My husband had a heart cath 2 months ago and pulmonary hypertension was confirmed but his cardiologist doesn't know what to do!!

By stewarcl
Posted July 14, 2008 at 8:02 pm

Good Afternoon,
We (my husband and I) live in Sacramento as well. My husband has Sarc and he is miserable. He has been using his inhaler quite a bit due to the excess thick smoke and really down and sick for days. But nothing seems to be doing the trick. If he goes outside for even a couple minutes he starts having chest pains due to lack of air.

The smoke is a little better today after after the wind that blew some of it out last night.

By stewarcl
Posted July 14, 2008 at 8:05 pm

Additionally -- We haven't found a specialist who is well-versed in Sarcoidosis in the Sacto area, however my husband is seeing Dr. Brent VanHoozen located next to Sutter Roseville Hospital. He is a pulmonologist and seems to understand and know how Sarc can cause symptoms everywhere at anytime - and a nice guy too!

By gnomelady
Posted July 14, 2008 at 8:17 pm

I make the journey down to UC-Davis-- Dr. Stanley Naguwa. He's a Rheumatologist, allergist and secondary immunologist.
He has been excellant in getting my care and using alternative meds other than Prednisone.
I'm on Plaquenil, Methotrexate and Remicade.
He requires that you be referred to him by your regular MD.

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