View Full Version : My Partner has just been diagnosed with Lupus nephritis SLE stage 4
05-11-2011, 04:17 AM
As mentioned above my partner was diagnosed in April 2011 and i want to find out as much as i can about this disease how it will affect him,myself and our family and way of life so that i can help him get through this as best i can.My partner is Alan age 48 he was diagnosed with CKD stage 3 in 2008 prior to 2006 he was a very fit very healthy very active man with over 20 years work experience in the sports industry qualified Gym instructor,qualified swimming instructor black belt in Shoto budo karate past tri-athlete on 4/11/06 he was involved in a motorcycle accident where he sustained multiple injuries he broke his neck in 2 places C1 & C6 he broke both his hands fractured his sternum smashed his left leg (which has been re-built twice) and tore the main artery (aorta) in his heart i was told to say my goodbyes at 4am but miraculously he pulled through but things havnt been easy he can walk a little using a walking stick and when outdoors he uses a wheelchair as mentioned above he was diagnosed with Lupus nephritis SLE stage 4 in April 2011 he was given a kidney biopsy in Jan 2011 the reason it took so long is because his consultant had to get his blood pressure under control before she was able to do biopsy anyway i have joined your forum as i want to be able to help him with this as best i can i found your forum while researching Lupus on google but who best to teach me than people who already have been diagnosed or people like me who are caring for someone who is suffering we know absolutely nothing about Lupus he has been put on Mycophenolate 250mg twice daily we believe he is going to be put on steroids and is now having weekly bloods done at hospital any info/help would be greatly appreciated.
Hi Mary. First I want to welcome you to the WHL family. It is clear that your family has already gone through so much and now with the Lupus diagnosis, it is another set of trials. It is believed by many that the Lupus trait, as you will, lives in many people via heredity, but it takes some kind of catalyst to turn it on. Some of the suspected catalyst are chemical exposure, stress, injury or many other type stressors. Your post above shows that your partner has suffered some of those.
I am so glad that you found us and I hope that you will find not only some answers but some comfort in having kindred spirits around to support you on this journey. Please make yourself at home. Feel free to look through the old posts or start new ones if you wish. I look forward to getting to know you and please do not hesitate to contact me at any time. Once again, welcome to the family
05-11-2011, 05:55 AM
there is a quite a few males here. lupus has no boundaries as to who it effects.
at the start of each section, there are "stickys". these are threads that have very useful information in them. they are a good place to start reading.
thank you for caring for your partner. he is lucky to have you.
05-11-2011, 05:56 AM
I was Dx May 2nd 2011 and I haven't learn much about this disease, I wanted to welcome you and glad you had found this group of wonderful people. For you coming here show love and support for your partner that is a wonderful gift to give.
05-11-2011, 09:59 AM
A lovely warm welcome to WHL and i'm so happy you found the site, to support yourself and your partner on what to expect where Lupus is concerned, as you'll see from viewing our threads and i'm so sorry for Alan and what you and your family have been through besides having to deal with Lupus now, after what's happened to him.
Your partner Alan as gone through so much shock and stress which as kicked off the Lupus and like tgal said it's heredity as mine came from my parent's but Lupus does thrieve on stress and depression.
I will mention this to you also, Alan is having bloods done and if any come back negative they could possibly be false reading's because Lupus plays with your blood and fluctuates so much it can give off false reading's, so sometimes more bloods do have to be taken to make sure of symptoms.
Mary i'll add some info below for you to understand it more and it will help you get your head around the disease also.
((Hugs to you both)) Terri xxx
05-11-2011, 10:00 AM
LUPUS NEPHRITIS SLE
Lupus nephritis is a kidney disorder that is a complication of systemic lupus erythematosus.
Causes Systemic lupus erythematosus (SLE, or lupus) is an autoimmune disease. This means there is a problem with the body's immune system.
Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. As a result, the immune system attacks otherwise healthy cells and tissue.
SLE may damage different parts of the kidney, leading to interstitial nephritis, nephrotic syndrome, and membranous GN. It may reapidly worsen to kidney failure.
Lupus nephritis affects approximately 3 out of every 10,000 people. In children with SLE, about half will have some form or degree of kidney involvement.
More than half of patients have not had other symptoms of SLE when they are diagnosed with lupus nephritis.
SLE is most common in women ages 20 - 40. For more information, see: systemic lupus erythematosus.
SymptomsSymptoms of lupus nephritis include:
•Blood in the urine
•Foamy appearance to urine
•High blood pressure
•Swelling of any area of the body
For general lupus symptoms, see the article on SLE.
Exams and TestsA physical exam shows signs of decreased kidney functioning with edema. Blood pressure may be high. Abnormal sounds may be heard when the doctor listens to the heart and lungs, indicating fluid overload.
Tests that may be done include:
•BUN and creatinine
•Urine immunoglobulin light chain
A kidney biopsy is not used to diagnose lupus nephritis, but to determine what treatment is appropriate.
This disease may also affect the results of the following tests:
•Complement component 3
TreatmentThe goal of treatment is to improve kidney function. Medicines may include corticosteroids or other medications that suppress the immune system, such as cyclophosphamide, mycophenolate mofetil, or azathioprine.
You may need dialysis to control symptoms of kidney failure. A kidney transplant may be recommended. (People with active lupus should not have a transplant.)
Outlook (Prognosis)The outcome varies depending on the specific form of lupus nephritis. Patients may have acute flare-ups with alternating symptom-free periods.
Some cases of lupus nephritis may progress to chronic kidney failure.
Although lupus nephritis may return in a transplanted kidney, it rarely leads to end-stage kidney disease.
Possible Complications•Acute renal failure
•Chronic renal failure
•End-stage renal disease
When to Contact a Medical ProfessionalCall your health care provider if you have blood in the urine or swelling of your body.
If you have lupus nephritis, call your health care provider if you notice decreased urine output.
PreventionThere is no known prevention for lupus nephritis.
Alternative NamesNephritis - lupus; Lupus glomerular disease
05-15-2011, 02:43 AM
Hi everyone I'm hoping you can all help me or rather help Alan he is in complete denial of his diagnosis he wont "read up" on Lupus he wont join your forum as i have asked him to as i feel it would help if he himself spoke to other people in his position but he refuses he's admitted to me he's in denial and just cant face this disease as he's already suffered so much since his motorcycle accident and his biggest fear is he's going to die very soon i have told him there are people on here who have been fighting Lupus for over 10yrs but this hasn't helped can anyone advise me as to what to say or do to get him out of denial and into a mind set of fighting this or facing this i try to read things out to him that are in your forum but he won't listen i think its denial or depression but i just dont know how to help him .
Linda From Australia
05-15-2011, 03:05 AM
Hello Mary. You must be going through such a difficult time. I can only imagine being married to someone with Llupus is a bit like when we are having a baby, and our husbands just stand by us and hold our hands not really knowing what to do to help us through the pain. Besides, just about everthing they did seemed to be not what we wanted and we just got angry at them. Some even swear at them saying "It is all your fault - you put me into this *&*^&%$@ situation!!!"
Your husband is probably going through denial. And there really isn't much you can do except to educate yourself as much as you can about Lupus, and hold his hand when he needs you. As well as put up with any of his outbursts when he feels down and angry about not being able to do the things he used to. If you force him to educate himself you may run the risk of him isolating himself. It is still early in his diagnosis, and he will eventually want to talk to you. And when he does, you will know what he is talking about. Love him, support him, care for him, and remember how you first fell in love and treasure those memories, because they are still alive today.
05-15-2011, 07:08 AM
Thankyou so much Linda for your message this site has been an absolute godsend to me as I feel I have no-one to talk to around me as Lupus is very rare in a man and also in this country when I tell people they immediately ask "whats Lupus" . Alan has gone through so much in the past four and a half years since his accident he was always saying " I thought by now i'd be better " and now with his diagnosis he feels he's got no fight left in him its as if he's given up and I don't know what to say or do to make him realise he's still got his life to live as best he can to enjoy the good days and fight the sick days it is so hard as you said to sit there and watch the person you love suffer and there's nothing you can do to help and I've learned over the past few years to to accept that when he vents his anger verbally he doesn't mean what he's saying what is it they say "you hurt the one's you love the most"!!! and believe me all his anger,frustrations,fears and worries over this diagnosis have been coming out in the last week or so .
So thankyou once again for your love and support Mary.xxx
05-15-2011, 07:32 AM
So to hear mate, that Alan's situation is so flustrating for you both and he won't take on board chatting with us or wanting to acknowledge it.
Lupus can cause so many things and i don't really like saying this he's in depression at the moment because of what he's gone through already but something to do with the lupus might come along and shock him into realizing he needs to talk with someone suffering the same.
I've had years of ailments, seizure's, strokes/ etc from when i was 18 till now at 42 and my lifes not been a bag of fun instead it was ripped away from me and to finally find out i had this 3yrs ago and everything i'd gone through was all connected to the Lupus, you would'nt believe how distraught it made me ontop of everything else, my hubby found me WHL and it's the best thing i did.
It's all about knowledge of the condition and there'll only be so much pain he'll be able to take before he's turning for help wheather he's had it 10yrs or not, something will break him out of this concerning the Lupus, i hope it does'nt in one way that he can see sense himself but something will break believe me.
((Hugs & Kisses to you dear friend)) plus we all know what your going through. Terri xxxx
05-15-2011, 11:22 PM
when alan is ready, there are quite a few of us men on here.
until then, i know it is hard, you have to be his friend.
one of the hardest things for someone to admit, is they will no longer be able to care and protect there partner.
alan will have to come to terms with this, then he will be ready to ask for help.
until then, you will just be pushing him.
it is not easy.
Linda From Australia
05-16-2011, 05:55 AM
Mary I know your husband must be feeling terrible at the moment, but how are you feeling? What sort of things do you enjoy doing together? If you try and spend some time together enjoying the same things, you can enjoy each others company without worrying about being sick. You are both special and you need to recognise what is unique in each other and focus on that, instead of being totally absorbed in the sickness that is surrounding your family.
Early into being diagnosed with any illness totally consumes a person and their relationsips with others. That is what they think about most of their waking moment. What you need to do is try to distract yourself and find something you enjoy. This will help you to relax and work through the process with less anxiety.
05-17-2011, 11:28 AM
I'd say Linda as said a great deal and (hit the nail on the head) you still need to do things together and don't let him sit and constantley think about it and if you get the attitude off Alan it's alright for you, if you try and push him into carrying on what you both enjoy in life, well then stand up and say WELL DO SOMETHIING ABOUT IT then you've put your hubby in a situation.
Alan's being how i was when i had my seizure's develop because the one lot of seizure's is rare and causes me to have Autissum, where i don't know what i'm doing i actually kept myself in my home and my dad did my shopping the lot, until one day the enclosure i'd put myself into made me realize what i was doing to my life. The seizure's was put to the back of my mind and i carried on and it was the best thing that woke me being enclosed and not living my life properly and i still think now to this day if i fit, i fit and whatever the outcome it's carry on.
~Hugs Terri~ xxx