Help my 35yld son has Lupus and now it is attacking his heart and lungs

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tnwalkinghorse 6
New Member

Date Joined Sep 2010
Total Posts : 2
   Posted 9/5/2010 9:39 AM (GMT -6)   
Hi, My son has Lupus and it started with his kidneys and we got that better. Now it is attacking his heart and lungs I'm so worried On top of all this he is in review on his ssi and we don't no if he will be getting anymore ssi. My husband and I cannot afford the meds for him. I'm very worried because my uncle had Lupus and Lupus got so bad attacking his organs that he only lived 8years after being diagnoised. My son is so young and he wants to work but he can't there is just no way. Can someone please help or give us some insite on this Please

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/5/2010 2:11 PM (GMT -6)   
if the lupus is attacking his heart and lungs then it is unlikely they will take away his SSI. You need to make sure that his doctor treats his problems agressively. I hope someone with more experience will come along with advice.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Forum Moderator

Date Joined Jun 2006
Total Posts : 1532
   Posted 9/5/2010 4:50 PM (GMT -6)   
Welcome to our forum tnwalkinghorse. I'm so sorry to hear about your son. It sounds like he has a great Mom. I suggest you obtain copies of all his medical records since his ssi was approved. ER, hospital, doctors visits including all doctors notes in each chart. Hound each medical records/office if you have to. Make 2 copies. Personally take one to your nearest social security office and explain the situation. It may be lots of work, but I think it will give you peace of mind. Love, Butterflake 

tnwalkinghorse 6
New Member

Date Joined Sep 2010
Total Posts : 2
   Posted 9/5/2010 6:19 PM (GMT -6)   
Thanks to everone for the help everthing that has been done for my son has been through his kidney Dr. His medical Dr is of no help. And according to the kidney Dr. We do not have a rheumatologst in our area that is well versed in Lupus. He has no insurrance and ssi stopped sending check this month

Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 9/6/2010 12:05 PM (GMT -6)   
my doctor put me into a nursing home in order for me to apply for SSDI and medicaid..of course it had to be a medicaid pending nursing home.. i left with medicaid and since i had sooo many medica records i got approved first time for SSDI... i would appeal SSI decision it may be alot of work but worth it in the end..

Forum Moderator

Date Joined May 2005
Total Posts : 6935
   Posted 9/6/2010 2:20 PM (GMT -6)   
There are 2 programs - SSD (Social Security Disability) and SSI (Supplemental Security Income). I think this discussion may be confusing these 2 programs.

SSD aka SSDI -Social Security Disability Insurance pays benefits to you if you are disabled and you worked long enough and paid Social Security taxes. Medicare is the health insurance here.

SSI - Supplemental Security Income pays benefits based on financial need, it does not matter if you paid into SS. Medicaid helps with Medical costs with SSI.

If the 35 yr-old is disabled & paid into SS, he should be eligible for SSD. If disabled & no income & did not pay into SS, he should be eligible for SSI.

If you or anyone are being REVIEWED by SS, if you are still disabled, your benefits will remain the same. Sometimes payment is suspended while they do the review (they do these every 3-5 yrs), but once you are reinstated you will receive back pay. This applies to both SSD & SSI.

Unless you are no longer disabled, you will continue to receive assistance. (Unless you are working while disabled!)

Hope that helps
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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