Connect
← Return to Pulmonary Sarcoidosis: How are you dealing with it?
Discussion
Pulmonary Sarcoidosis: How are you dealing with it?
Lung Health | Last Active: Sep 23, 2023 | Replies (126)Comment receiving replies
Hi I wanted to introduce myself. I am a 45 yr old female that has dealt with various autoimmune diseases since I was 15. My current battle is with stage 4 liver cirrhosis and after biopsies on my lungs and liver it was due to sarcoidosis. I have a liver that is full of granulomas. My autoimmune journey started at 15 with Psoriasis, then at 21 after my first child I developed the Psoriatic arthritis to go with it. Then I was diagnosed with Fybro at about 30. The sarcoid started about a year and a half ago when they diagnosed my cirrhosis and that it was not alcohol related. I don't drink. So now I am looking at a transplant list. I have ever specialists imaginable but they all seem not to know how to help me. Starting this month, my feet began to swell and ache. And I mean BAD. at first I thought it was my PA and I was having a flare but after a week and a half of intense pain and ER visits I am exhausted. I just saw my PCP and he is referring me on to more specialists. None of them want to touch me. I also am dealing with acute kidney failure no one seems to understand and on my last MRI they found a mass on my pancreas. Is anyone dealing with this level of extreme autoimmune disease? I am 40% covered with psoriasis and can't walk, on pain meds (which I have never taken regularly even with my history but now have no choice but to take opiates) and don't know where to turn. Is there someone out there that just deals with autoimmune disease? I really don't think in my experience that anyone is looking at someone like me and that all this is related somehow. I have been saying that my whole life. HELP. Thanks for reading.
Replies to "Hi I wanted to introduce myself. I am a 45 yr old female that has dealt..."
@kindtmdar1 Hi! I’m glad that you’re reaching out and looking for answers! You do have many issues going on. If I were you, I would get a second opinion at the least, or if at all possible get to a Mayo Clinic. I say that because they have what they need as a team. What I have experienced so far is they are thorough and get to the bottom of the problem with solutions. Get all the information you can from reliable sources on the internet on your condition to be educated on your conditions. It can get very overwhelming to feel hopeless. I don’t know if your on oxygen for your sarcoidosis or not. Don’t give up whatever you do. You need to stay strong and fight to get better answers. Good Luck in 2019.
Hi @kindltmdar1 Thank you for sharing your journey and I am sorry you are feeling such pain and frustration. I am a post heart transplant patient - almost two years now. Had the transplant at Mayo Phoenix. I have had sarcoidosis since the birth of my second child, very mild, and then in 2004, after the death of my father, it flared and affected my eye, my right lung and my heart. So I understand your dilemma.
What meds are you on for the sarcoidosis and wh manages it?
Thank you for sharing. I was just recently diagnosed with sarcoidoisis and have been told nothing about my disease or the prognosis. I ask questions and can't seem to get a straight answer. One doctor just told me to continue living life as I was, that nothing can be done. I was treated with steroids at initial diagnosis for 2 months which did take the swelling down, but I wonder now what? Is there any precautionary measures I can take? Is there anything that can slow or stop the progression of this disease? Any info would be of great help. Any resources I can get would be of great help! Thanks for reading!
@jessicap42 here,s another website http://www.WebMD.com/sarcodosis. Nhlbi.nih.gov/sacodosis
Hi, I’m Rod. I was diagnosed with S last year. I have posted earlier. My case is not even close to yours but I’m here to talk. I feel very bad for you. One of my kids has auto immune problems as well. This has gone on his whole life but he is young and Drs. can’t pinpoint anything that puts it all together. I have problems believing it’s not environmental or diet somehow???? Don’t know but I hope we can keep sharing our stories and maybe come up with something. Rod
Connect
Hello @kindltmdar1, welcome to Connect. You certainly have a lot going on and have seen a lot of specialists without any of them coming up with a treatment plan. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments
Here is a Mayo Clinic page that provides more information cirrhosis:
-- https://www.mayoclinic.org/diseases-conditions/cirrhosis/diagnosis-treatment/drc-20351492
@kindltmdar1 are you able to have your primary care doctor refer you to Mayo Clinic?
John