Just some thoughts

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aimsgirl16
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Date Joined Jun 2008
Total Posts : 1470
   Posted 5/23/2012 7:28 AM (GMT -6)   
So, its been awhile posting on here. Have had a lot of stuff I have had to learn to deal with. Seems I have about 1% function of my kidneys left thanks to lupus. I am on dialysis, fortunatly get to do it at home but I am also doing dialysis 15-18  hours EVERY day.
Well recently I have started having brain issues. Can't speak clearly, words not coming out in correct orders, yada yada yada. Turns out I have Lesions on my brain. Treatment is dexamethasone...One of the steriods that actually deals with inflammation in the brain. Well guess what, it also makes me want to end my life. So now we have abruplty come off them and I meet with my doc to talk about what treatment to use for the lesions. I am currently on Imuran along with a bunch of other kidney meds I am allergic to cellcept, can't take mtx because of kidneys, and they said "heLL" no on cytoxan. Benlysta is out cause of the lesions. Looks like rituxan possibly?
 
So my story, I started having lupus symtpoms at 19. I was like Oh well, its lupus...how bad can it get. PLEASE NEVER think that. I did take my medications daily for 3 years (after a good scare) and it still didnt work. Know if you are in bad shape, sometimes you are doing EVERTHING you can but your body has other plans. Don't lose hope. Keep fighting. I promise, the good days are worth it!!!
Amy
Lupus Moderater


dialysis from lupus nephritis

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 5/23/2012 9:53 AM (GMT -6)   
So sorry to hear about the lesions. I hope your drs are interested enough to do some research and find something that can safely help you.

I know how hard it is to have brain involvement - I had it for about 2 years, fortunately Cellcept helped me.

Like you said though -- Lupus is NOT TO BE TAKEN lightly -- it really needs to be kept under control lest it go wild.

I think of you daily, Hugs.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

DB74
New Member


Date Joined May 2012
Total Posts : 6
   Posted 5/23/2012 12:22 PM (GMT -6)   
Sorry to hear of your current state! Don't give up on life! What have you tried other than DR prescribed meds? Have yoiu detoxed? What is your daily diet like? Proccessed foods big in your life? You have to know that Dr meds only treat symptoms and not hte underlying cause! Consistency is key with natural approaches but we have to get out of the mindset of getting a "quick fix". It'll take longer than you want with this approach but you don't get the brain lesions and kidney failure. Keep a positive attitude! That too goes a long way.

I've had a lupus SLE diagnosis since 1996 and have had both hips replaced, shoulder necrosis and glaucoma/cataract issues. I'm only 37! But I vow to keep major surgeries at bay and to cure myself...because i do think that is a possibility...just not using Meds. Rx isn't supposed to cure!

Since changing my diet...eating more fruits & veggies (in addition to meat) and reducing processed foods. I feel SOOOO much better. Look for a diet tht offers you a tapering type of situation as a detox. You basically cut out meats, then you cut out carbs, fruits & veggies down to a broth then you add in those thigs in the reverse order and you'll detox the liver in addition to finding out if any of those food groups cause you to feel more sluggish. Those ar the tnigs ou need to be leery of in the future. If you are home it should be easier to do b/c you don't have the stress/inconvenience of having to work which can make it harder to have the foods available.

With the advent of the internet, it should be easy to find detox diets that fits your lifestyle. You have to cleanse the liver since that's the detoxifying organ. Then it can it do it's job.

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 5/23/2012 12:39 PM (GMT -6)   
oh amy I am soooo sorry and hope that your good hours can be peaceful and full of love/hope. This might be a stupid question but can anyone donate a compatible kidney to you or will the Nephrologists not transplant?
You are right about ppl not taking it seriously too, esp young ppl, Its just frustrating...so frustrating.
Hugs to you!
Angelina.
age 41, Mom of 2 great kids (10 & 8), Diagnosed in 2007
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Pred taper, Nifedipine, estrogen, Cymbalta, hydrocod (NO MORE!), fentanyl patch (NO MORE!), methotrexate - MTX (on hold), clonaxepam (sleep...maybe off soon!), vit D, PRILOSEC, Vit B12 shots.

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 5/23/2012 1:05 PM (GMT -6)   
WOW... I am so sorry to read all this Amy....prayers are being said for you...
hugs and more hugs....

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 5/23/2012 11:16 PM (GMT -6)   
Amy, I am so sorry to hear this. I will keep you in my prayers.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 5/24/2012 6:43 AM (GMT -6)   
Actually being on dialysis, my diet has changed 100%. I only eat high quality protien such as meats. I am not allowed to eat dried beans, any whole grain product, no dairy, icrecream, milk, yogurt, no chocolate, dark beverages, any foods high in sodium. Which pretty much leaves all natural homecooked foods. I do admit, the diet change has helped me feel better. I have to eat most veggies raw as if you cook it, many of the nutrients I need are cooked out of the vegies. Fruits are ok but I am supposed to push more protein and higher potassium foods than anything.
I call my dialysis diet the mans diet (minus salt) I need a huge piece of good quiality portein meat each meal, a baked potoato (potassium) will eat a slice of bread and can have any desert (as long as its in my guidlines). This has been a struggle these last few weeks because of steriods but suprisingly, keeping to it, I havent gained fat weight, just water weight.

We did try detox and I advanced to kidney failure the first time 3 years ago. Then after that, I followed all the meds they reuired me to do.

But just an update. I am now maxed out on Imuran, we will be starting benlysta after the MRI next week. SO I am not so scared anymore :)! Thanks for the support guys.

Just remember....LISTEN to our body! You know what is best for you!
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2012 6:34 PM (GMT -6)   
Are you doing the perotenial dialysis? That's the kind my brother did for years. It caused a lot of water weight gain on him. He's doing veinous dialysis now and skinny as a rail.
He has polysistic and glamerousnephritis (sp?) disease.
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 5/24/2012 7:13 PM (GMT -6)   
yes, I do peritoneal dialysis and it seems to be keeping the excess fluid off all the time. I can't imagine doing hemo dialsyis. Does he get to do it at home or does he have to go to the clinic for weekly trips?
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/24/2012 8:31 PM (GMT -6)   
He goes to a clinic every third day (I think) for three hours. He's having issues with his parathyroid now and is facing surgery on it.
Joy

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 5/25/2012 6:35 AM (GMT -6)   
yup,very common with dialysis. They just started treating me with some rx for my parathryroid and throid. Hey, you are more than welcome to give him my email address. I am always interested in learning the ups and downs with people who are on dialysis for years.
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/25/2012 12:16 PM (GMT -6)   
I'll ask him if he's interested in communicating with you.
Joy
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