[sassafrass]

My name is Sassafrassy and I am new here. I have been in denial about lupus for quite a while now ... I believe because I was fighting other issues. I will tell the shortened version of my story.....:sad:

Skin Lesions several years ago...probably 2002. Diagnosed Exernal Lupus through skin biopsy. No issues skin wise since. Denial by Sassafrassy

Had Open Heart Surgery April 06 and two weeks later developed two pleural effusions. Fluid tested positive for lupus. Still in denial. Figured my lungs were traumatized by the OHS.

Lymphoma- N/H Diagnosed July 06 through the removal of paratid gland.

Had pre-op blood work for chemo port in August 06 and two doctors told me while I was being prepped for surgery that kidney function was low. Turned out it was at 56%. Had too much on my mind from heart and lympho to take on anything else.

Injured knee April 08. Pre-op work showed kidney function at 39% GFR

All this has thrown me back into the medical world of the unknown....kidney biopsy Friday. Ultrasound today. Gallons of blood Friday. Appt with kidney specialist to review results next Tuesday.

Help me! What am I looking at? We are in process of ruling out lupus but I am finally out of denial and feel about 99.9% it IS lupus. Dr. mentioned no dialysis at my age...transplant...but he told me i was totally jumping the gun by even talking about such things. I went into the appt well read and probably asked questions I shouldn't have.

Tell me what to expect at 39% function.

Thank you so very much!

 

[sassafrass]

Oh one more thing. I don't have any rheumatoid arthritis issues.

 

[bugsy]

Hi sassafrass :hello: :wavesmile: :hello:

First of all

to the lupus site.

I am so sorry to hear what you have been going thru, geez you have had it rough.

I really hope everything goes alright for you on friday with the ultrasound and the kidney biopsy.

I hope by becoming a member of this site it will help you come to terms with whats happening and i hope you find the care, help and support that many members offer.

I will be keeping my fingers crossed :fingers: for you.

Take good care of yourself :hug: Jo :hug:

 

[sunflowergirl2]

:welcome:To this site! Sounds like you've been thru a hard time, and more to come! Best wishes! Lupus is a hard disease to deal with! You will find alot of support and good advice on this site! I don't have organ involvement, but serious RA problems. My bones in my feet are separating, going to have major fott surgery, with rods and screws put in. Join us in chat, you will meet alot of great people! Cathy

 

[Maia]

Here's a good link on kidney loss and functioning:

http://www.med.umich.edu/opm/newspage/2002/kidney.htm

It's reassuring that you probably won't have any symptoms for your kidney loss until you are in the lower 30's. In the meantime, it's imperitive that you ask how to best take care of your kidneys at your appt on Tuesday after they have all the tests run. Avoid NSAID's like the plague is one thing for sure!

I can understand how you dismissed the lupus findings... your rationales made perfect sense to me too. When you don't have ongoing symptoms like fatigue and joint pain and rash... I imagine I'd do the same thing as you. I'm glad you're now getting a full workup and will be able to take steps to protect your kidneys from here on out.

Good luck at the appt and please let us know how it goes! I hope the lymphoma is in remission? Take care...

 

[sassafrass]

Thanks Maia for the support. I appreciate it. I am very nervous about Tuesday. I have kind of beaten myself up over the lack of pursuit of my lupus so at least you have taken some of the guilt away. :blush:

Happy to report that the lymphoma is in remission. I still have maintenace chemo which is fine...it is a miracle drug so I am going with it! Every three months til next November.

Thanks for the link....I am going there right now!!!!



Debbi