HSP kidney disease

Hi, im a 37 yr old female with HSP. I was diagnosed in 2001 with it. It is a very hard disease to live with, I was very sick when i was diagnosed, i had all the syptoms, arthritis in my joints, the rash, and severe abdominal pain, it was so bad i was in and out of the hospital for almost 2 years for pain management then it got very aggressive and my kidneys shut down, i almost died from it. they put me on chemo therapy for a 2 year treatment, i only made it thru 4 months of it because it was so harsh on my body. they had me on steriods,fish oil and blood pressure medication for treatment. all that medication was worse then the disease so i stopped taking all of them except the fish oil and immedietly after my disease went into remission. i believe it was mind over matter with that because i was so sick of being sick from the disease and the hard meds, I have been battling this for almost ten years now and it comes and goes in flare ups with my arthritis and stomach pain, i actually just went thru a series of tests to see if it had come back full force because ive been so sick with the stomach pain for months now. its almost unbearable and all they prescribe is pain medication that doesnt work. now they tell me to go to the hospital for pain management. Im very frustrated because not many docs know about this disease so i find myself educating them on the disease which doesnt do me any good for treatment from them. I do see my kidney doc who was the one who diagnosed me so he knows my whole history. but again there is no cure so all i can do is receive pain management. so what i do is smoke marijuana for the stomach pain and arthritis pain and it works the best for me. plus i can smoke a small amount and still be able to function verses the pain pills that make me dizzy and more sick to my stomach. its very disheartening when you research this disease because it doesnt look good for adults who have it on the aggressive side like me. all i can say is it does get better but it doesnt go away. my knees are damaged from the arthritis now and ill need a knee replacement sometime down the road for both knees. but my kidneys are functioning fine now but i still have the protien in my urine. youll have to be your own advocate with this for the rest of your life and i believe all natural medication does work best for the symptoms.what kind of diet are you on now? maybe that would help me with my stomach pain. as adults were a very rare case of this because its a childs disease so im glad we found each other to help and support each other!! your the first person ive found thats my age that is suffering with this illness like me..but do stay positive because it will get better its just a matter of time.

So, about a year ago, I posted a summary of my wife's situation (in a different HSP thread) after she was admitted to the hospital and doctor's couldn't figure out exactly what was wrong. Long story short... she had been diagnosed with HSP about 9 years ago. There were clear signs of other consequences of the HSP such as protein in the urine, IGA deposits, etc. but none of this was ever brought to her attention.

Signs began to appear as her blood pressure increased, headaches became common, dramatic weight loss occurred, and fatigue came on. This all began to make sense as doctors looked back at the old records from when she had HSP. From there, they determined that her kidney's were severely damaged and was diagnosed as HSP with Stage 4 Kidney Disease.

About a week ago, an HSP flare up came on with severe stomach pains and her renal doctor sent her to to the ER where they basically had no idea what was going on for two days thinking initially she just had a bad UTI. They helped her manage the pain and kept her for 4 days. They also found something abnormal with her colon and have her coming back in a few days for a colonoscopy.

As a past smoker, I mentioned the benefits to her but don't think she's completely convinced.

@CAITLIN: Would greatly appreciate if you could elaborate on this further so I can show her and talk to her doctor about it.

@Beaty: You mention you were at stage 3/4 last year. My wife was diagnosed in may 2013 at stage 4 (16% function) and maintained this up until this last flare up. It appears function has decreased further and they may have us take steps to proceed with the transplant. It scares me because while of course I'm going to give her my kidney without question, what happens when she has another flare up? I'd be curious to know if the donated kidney in other kidney recipients with HSP last as long as those without HSP?

As you know, there's just not a lot of info out there! Frustrated...

I forgot to mention, when she was diagnosed with stage 4, they had her take steps to prepare for transplant. I was soon qualified as a complete match.