View Full Version : Has anyone had there organs affected?

01-28-2009, 08:37 PM
I am new to this site. I was just wondering if anyone has had their organs attacked by Lupus. About a year and a half ago I had it attack my brain heart, lungs and liver. I am terrified that it is going to happen again. I am in pain 99% of the time and tired all the time. Its so hard to get people to understand what it is that I go through that I've started to just give up on life. I hardly ever leave the house other then to go to work or pick something up from town. I'm scared that if I go somewhere that I could have a bad flare so rather then go out and try and have a good time I stay home which makes my depression even worse. I am currently on prednisone, plaquinal and a couple other drugs. I have been diagnosed with Lupus, RA, Reynoids, and most recently tendanitis. I am 23 and feel like im 80. I'm so scared that it will hit my brain again and next time I wont come through it. I just need to talk to someone who can relate. Thanks for listening.

01-29-2009, 09:48 AM
There are many members here who have their organs involved due to Lupus. Many with pericarditis (the heart), pulmonary hypertension (the lungs), nephritis (the kidneys), and Central Nervous System dysfunction (the brain). So, you are not alone.
However, with proper medication, treatment and self-care, many of those with such involvement have found ways to maintain a reasonably normal lifestyls.
Hopefully, some of them will be along to share with you their experiences and provide some suggestions on how you can manage your life with organ involvement.
It is not at all uncommon for Lupus to damage our organs. But, there are medical treatments available for each organ involved. Please speak to you doctor about appropriate treatment and let us know how you are doing.

Peace and Blessings

01-29-2009, 11:04 AM
Hey there susie,

/the lupus has affected my brain too, i used to have a lot of seizures due to this and wouldnt go out or socailise, i got so scared of leaving the house incase i had a seizure or bad flare, now a days all my friends know about my lupus and on the chances that i get to go out and party i do so, because they know and i feel safe with them, also i recently got a medical alert necklace i never leave the house without it, just in case you know! try and get out susie you will feel alot easier and happy if you do,

01-30-2009, 10:33 AM
I have SLE and shortly after my DX it attacked my kidneys, spent 2 months in the hospital, they put me on dialysis and my kidneys started working again. But six months later they shut down again and i was put on dialysis AND on the waiting list for a kidney (luckily my father was a match).
I am sorry that your lupus(and other DX) is causing you so much heartache, it truly is a frustrating disease! I used to feel the same way, not wanting to leave the house for fear of something going wrong while out. Im glad to see that you have gotten the med ID necklace. Dont let this disease take over you, (i know its hard), but do like "iseedeadmonkeys" and take advantage of those good days, i know there are not many of them, but the ones you do have should be dedicated to YOU!
I hope that this helps. I wish you the best. We all know what your going through, even if not all of use have the same symptoms. We know and empathize your frustration.
Good Luck and Lots of Love!

01-31-2009, 11:55 PM
I am sorry you are going through this. I have had problems with my lungs and all of a sudden extremely high blood pressure. Hang in there and always know there is someone here to talk to and we will all help you get through all of the bad times :wink:

02-01-2009, 02:30 PM
Oh my goodness, I'm so sorry you are going through that. I will keep you in my thoughts. I have thus far not had any organ involvement that we are aware of, but I can only imagine how scary that might be.

Gentle hugs!