active lupus and kidney transplant

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haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/20/2008 5:46 PM (GMT -7)   
Hello everyone
 
I have been told to get an evaluation for a kidney transplant but am concerned since my lupus is still active. The prognosis is decent for transplants in general but I read on the internet that a transplant is unadvisable when the lupus is active. Does anyone know anything about this? My creatinine is not dangerously high (3.9) but my nephrologist is suggesting the transplant anyway. Has anyone had a kidney transplant associated with lupus that can share some details?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/21/2008 7:03 AM (GMT -7)   
Haji,

Have you discussed this with your rheumy? That would be where I would start.

I have no kidney involvement so I don't know what to tell you except that I'm so sorry you're going through such an awful predicament. Hang in there and get plenty of medical opinions.

(((((Hugs)))))

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 4/21/2008 8:00 AM (GMT -7)   
Haji, I'm really sorry your are going through this. I wish I could give you some information, but I don't know much about transplants. There are a few members here who have had successful transplants, so hopefully they will see your post and be able to tell you more.

I just wanted to let you know that you are in my thoughts. Take care and please keep us posted on what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2008 11:35 AM (GMT -7)   
Haji,
   Hopefully the older members that have had transplants will come around soon to help you out. Two that I remember right off are Laurie and Sandy. Maybe they will see this soon.
   I'm sorry your having to go through this ordeal....((hugs)). Please keep us updated and take care. You will be in my thoughts and prayers.
                                                                   Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 4/22/2008 7:43 PM (GMT -7)   
Hi,
i had a kidney transplant in '06 and during the whole pre-screening the transplant docs I was seeing had to check to make sure that my lupus was not active because I am pretty sure that they will not due the transplant while your lupus is active. It is very dangerous to have major surgery like a transplant during a flare and more than likely they will wait until your "lupus" panel is stable before they will do the surgery. It is sometimes risky on its own for lupus patients to have surgery when they are not in a flare, but extremely dangerous when we are on the flare.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain


haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/23/2008 8:40 AM (GMT -7)   
That's fairly distracting news then. my Doctor's know full well that my lupus is still very active...why would they want to evaluate me for a transplant if they won't even be willing to do one? Work has been a living hell with the fatigue and my anemia causes me to have no life outside of work. It's like I'm stuck in the middle of nowhere and I can't do anything to improve my situation. The nephrologist swears I don't want to do dialysis but if I keep going at the rate I'm going without a transplant that's where I'm going. I take aranesp for anemia but it doesn't seem to do much for my energy levels. I've also developed some type of lupus related gastritis and have lost so much weight that I'm basically anorexic. I'm 118 lbs 5'8" male ....was 155 lbs a year ago, have lost all my vitality, muscle and will to do anything. I just want to give up sometimes...these doctors are full of crap and make me more sick than the Lupus.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/23/2008 9:44 AM (GMT -7)   
Hi Haji:

I'm so sorry that you're feeling so poorly. I truly understand how you feel. I can't offer any advice as to your kidneys as I don't have kidney issues, Thank God, but I have many many other issues. I have severe anemia like you have. Do you know what your hemaglobin and hematocrit are at. If your down in the 7/20's they could give you a blood transfusion and it would give you a real boost with your energy. I get blood transfusions about every 8 to 10 weeks. My hemaglobin has to be 8.5 or lower and my hematocrit must be 22 or lower. It's just a thought that you could talk with your doctor about.

I'm terribly sorry that you're dealing with it all. It's so hard to be so sick and feel so bad all the time. I'm wishing you well and please keep us posted.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/24/2008 10:23 AM (GMT -7)   

Thanks Barb

Some days are harder than others...I guess I just needed to vent. My hematocrit gets pretty low 25-27. They have mentoned transfusions before but it all seems so excessive to me.

I am going back to the midwest to do my transplant evaluation here pretty soon. I really hope I can get into a remission state here pretty soon....fingers crossed


haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/25/2008 1:44 PM (GMT -7)   
 
Did you find that before your transplant you had a hard time eating protein? I limit my intake by eating vegetarian primarily. I notice that anytime I eat meat I get tired and lethargic. I think it must be because my kidneys are working so much harder to clean the toxins that it uses up more energy. Any thoughts?

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 4/26/2008 10:57 PM (GMT -7)   
My situation was a bit different then most, I think. When I had my transplant I wasnt in complete renal failure, my kidneys were getting worse but they were still filtering so I didn't need dialysis, and I told them I wouldn't do it anyways, but I did start having trouble with some foods, and I stopped drinking, not that I drank alot, but even one drink would make me feel sick and hung over the next day. And as I was waiting for test results and screenings and everything they do before they schedule a transplant, I was not really eating much, and when I did it was more veggies and fruit and cereal because my body wasnt handling meat very well.

Now a question for you, for your anemia, are you taking iron supplements? And are you aranesp because of insurance issues. I was taking procrit (epogen) before my transplant and with those injections you have to talk a lower dose because of your kidney issues. And I ask about the iron supplements because when your anemic you may also have a problem getting the oxygen to attach to the blood cells, the iron supplements help the oxygen adhere to the blood cells. So if you are not feeling better that may be a reason.

And I just want to add that I have no medical background but these are the things that the doctor told me, and I am just repeating what I was told. I just dont want anyone to think I giving out medical advise, because I know that it is against the rules.

So Haji, you may want to talk to your doc about this, and also talk with your transplant doc and pointedly ask them if they will do the transplant even though you are in a flare.
good luck, and if you want to compare notes or just have other question, my email is on my profile.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/27/2008 2:20 AM (GMT -7)   
Haji, it is possible that your doctor wants a kidney transplant eval because he/she expects you will definately need one sometime in the near future. If that is the case then this may be about laying the ground work to avoid a delay when your kidneys fail. There is also the chance your doctor believes that the transplant might help get your lupus under control- this would likely depend on what anti-bodies and blood work is triggering the request to do the consult.

I had surgey twice despite being in a flare. One was to save my life- they removed my gallbladder. The second was to reduce pain and relieve stress on my spine because there was serious concern due to old damage (breast reduction from a G to a D). The second surgery was done last June and ironically within 2 weeks post surgery I went into remission for no apparent reason. On the other hand, following the gallbladder surgery I was left so weak it took more than a year to begin to recover.

I would accept the blood transfussions because if your anemia is allowed to continue uncontrolled it can cause serious harm. Anemia affects oxygen transport throughout the body and that affects everything- energy, brain, organs, etc... You want to be as strong as possible and having organs, brain, or muscles lack enough oxygen to function at full capacity may very well make your flare worse or longer in duration. I watched a family member deteriorate from anemia because her doctors would not give her a transfussion for months and when she finally got one there was permanent damage. It may seem extreme but it is in fact better than the alternative.

I moved to the midwest to get treatment, I hope your transplant work-up goes well and the doctors figure out something to help you.
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, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


haji0410
New Member


Date Joined Jan 2007
Total Posts : 17
   Posted 4/27/2008 10:13 AM (GMT -7)   
appledesk82

I also am not in renal failure yet. My creatinine has been as high as 3.9 lately but ent back down to 3.4. I have definitely noticed sensitivity to what I eat lately.

I take the aransept because it is what was recommended. I honestly don;t know much about the difference between it nd procrit. They basically do the same thing right? They stimualte your bone marrow to make red blood cells since the gland on top of your kidney is weakened by the disease activity.

I have started to take folic acid and iron supplements with some orange juice to help with the absorption.

My hope is to stave off dialysis for as lon as I can with nutrition and stress reduction so I can get into a quiet state for transplant consideration.

My understanding is that end stage renal failure is on of the few chronic llnesses that are covered by medicare before you are 65. If I lose my job I hope that the state can help me with insurance and medical costs.

I live in Las Vegas but all my friends and family are in Indiana. It kinda stinks beccause I feel that if I am to become better my best chance is to be home surrounded by people who care about me.

I have a job selling new homes and even though it is not back breaking it is hard to 'perform and act' having kidney complications. One has to have energy and attitude to do their job effectively and I am already seeing how difficult it is to keep up at work.

I have FMLA leave and some long term disability but pretty much after three months on leave I have to pay COBRA.

I have some pretty big decisions to make about whether to stay in Vegas and trying to work or going home. It's not a simple decision.

loriWBL
Regular Member


Date Joined Dec 2004
Total Posts : 121
   Posted 5/7/2008 8:47 AM (GMT -7)   
Hi Haji,
I've also had a kidney transplant, forgive me for not responding sooner, but I've been really lax about checking in here with all my lupie friends...

You're absolutely right about the medicare thing, you will be eligible for medicare before age 65 with kidney failure, or a transplant. I had to fill out all the forms prior to my transplant. Please don't hesitate because of the insurance issue, that will be taken care of.

I don't actually have a definite diagnosis of lupus, I have a "lupus-like" auto-immune disease--however, whatever it is, it affected my kidneys and I needed the transplant. My creat got to about 6.7 prior to the transplant, and now I'm running 0.8 - 1.0. My son was my donor. He's actually expecting a baby girl any day now, my first grandchild and I'm so excited!

As far as the blood transfusions, I would definitely go with what your doc says, I didn't need to go that far, but like applesk, I had several injections of the procrit and it really helped with the anemia.

My diet didn't seem to be affected by what I ate, but only by the medications I was trialing. I was unable to take cellcept, anything I ate went right through me, no matter how I staggered the doses. I don't think I had any issues with meat, just had to watch the salt, phosphorous, etc.

If you have any questions, please don't hesitate to email me, my email address is in my profile. Take care,

Lori

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 5/7/2008 3:32 PM (GMT -7)   
Yes, Lori is right about the insurance thing, as soon as you start dialysis or have the transplant, medicare will call you and set up a phone interview to review your case it may take a month or two but they will end up covering all the transplant costs (minus the meds) and you may qualify for disablity. And yes arenesp and procrit do the same thing, probably just different chemical compounds. But unlike lori, with the cellcept even though it gave me bowel problems my docs would not take me off of it because it was controlling the lupus so well. They just said to take Imodium or something like it. Good luck and take care,
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain

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