April's Blog (Part 2) - Aaron's experiences of being a male with lupus

[Paul_Howard]

For the last article in our series of stories from men with lupus, Aaron has shared an account of his experiences. Thank you Aaron for taking the time to share your story.

Like most of people, I had never heard or come across lupus before I was diagnosed. It all began for me back in November 2011 (22 years of age) where I was initially diagnosed with a simple chest infection; the doctor disregarded my joint pain as a result of my job (supermarket team leader). Over the next six weeks I was given four different antibiotics which failed to work and my condition continued to deteriorate, so much so I was admitted into hospital on Dec 27th.

After two weeks I was discharged with no diagnosis given. Over the next three months, I was admitted a further two times to hospital but still no diagnosis. My physical condition continued to deteriorate and I had lost three stone in body weight and muscle mass.

Now that brings us to April 2012 where I was admitted yet again to hospital. Finally I was diagnosed with lupus SLE after I developed severe mouth ulcers alongside crippling joint pain all over my body. Lupus SLE had now started to attack my kidneys (as well as my lungs). It was decided that I’d undergo a kidney biopsy. As a result I suffered an internal bleed from the kidney which sent me to intensive care where I stayed for four weeks.

Intensive care is a big blur for me, so I’m relaying this part through my family's experience. The first two weeks of ICU I had to be fully sedated but began to attract infections and complications due to SLE. The doctors had provided me with the most powerful drugs to deter the SLE but if I didn't respond to them there was nothing else they could do. Luckily I responded.

SLE had now attacked all my major organs and I was given less than 50/50 chance of survival on three occasions. I suffered a further setback when the SLE attacked my heart. Immediately a drain was inserted and two pints worth of infected fluid was emptied. Following this, my vitals began to improve and I was on my road to recovery.

Being in intensive care for a month resulted in my body becoming that of a ten year old boy. I had lost the majority of my muscle mass and in total weighed less than 60kg; therefore left totally dependent on the nurses. One month later I was transferred to a rehabilitation hospital for six weeks where they helped me on my road to recovery; mainly learning to walk again.

I was finally discharged home at the end of 2012 with various medications. I was on 2g mycophenolate, 30mg prednisolone steroid and lansoprazole; also I'd had a five dose course of cyclophosphamide whilst as an inpatient. After nine months I was stable enough to wean off the steroids and to this day I'm solely taking 1g mycophenolate twice a day, which I've been told will be a long term solution so long as it is effective.

Living with SLE is a very strange thing. I can go weeks feeling relatively normal with next to no symptoms but then there are days I wake up feeling heavily fatigued for no apparent reason; to a point where it is a struggle to even get out of bed. For someone who was fairly active and social it is incredibly frustrating considering I cannot do most things I could prior to my illness. I particularly find this hard to explain to friends and family because for all intents and purposes from the outside looking in, I'm 25 years old and should be living my life to the max but in reality I've become somewhat introverted and very safe in my decisions. What I do find with SLE is when I do fall ill it takes a whole lot longer for me to get over the illness so this is another reason why I try to be preventative in my life rather than reactive. I'm currently on annual check-ups with my consultant; extended from six monthly and before that monthly.

My message to fellow people with lupus is to continue the good fight, try and keep your bad days to a minimum and to never ignore any obvious symptoms. For me it has been a long hard road but I’m steadily improving. It's definitely a road I don't want to go down again!!!

Tough times don't last; Tough men DO!

If you'd like to learn more about lupus in men, you can read our factsheet online at lupusuk.org.uk/images/pdf/1...

[Andrewc]

Hi Aaron I am a 40 year old male with lupus I was diagnosed with it about 15 yyears ago now and have ended up with both kidneys failing and have been on dialysis for over 10 years was originally in dialysis that uses the peritinium round your stomach till for serious sclorosing peritinitis infection and ended up in intensive care and operation resulted in having a Stoma bag which I still have to this day and a football size scar where my belly button used to be still have problems with pain in my bowl when it gets obstructed quite easily, have lost a lot of weight as have no appetite and am a 6ft male under 60kg also have servers rhymatiod arthritis in both knees and cannot walk without crutches and in servers pain. I now so my dialysis at home and am struggling to get any help with pain relief, because I suffer with unexplained low blood pressure so will not operate on my knees or give my kidney transplant as having any kind of general anaseptic would lower it even further and could kill me, so am left in constant excruciating pain every waking moment of every day and that with constantly being so tired as can't sleep at night also suffer with terrible twitchyness in arms and legs and feet constantly have a numb feeling also started with epilepsy back in 2011 seems to have subsided now. Fingers crossed. Sorry to rant on feeling a bit sorry for myself and getting depressed with it all. Glad your on the mend Aaron fingers crossed it stays that way for you

[Amethyst in reply to Andrewc]

Bless you hun. I remember the constant pain as the saddest part of my life

Hooe you get some relief from it soon

[lyndyjane24 in reply to Andrewc]

Hi Andrewc,

I am sorry that you have suffered and continue to suffer so much with lupus. There is no need to apologise for the 'rant' and it is more than understandable to feel a bit sorry for yourself and fed up with it all. I have lupus myself and so does my 26 year old son. It is horrible watching him have to deal with this difficult illness. I wish you well

[Andrewc in reply to lyndyjane24]

Thanks for your support I wish both you and your son well. Am off to watch my youngest [8 yrs] play in her first football tournament this morning, just wish I could run around with her

Andrew c

[JasonLupusJourney]

Hello mate, I am 30 year old male. I was diagnosed last year, and have my kidney biopsy on Monday. As awful as it sounds, I am relieved to have found someone who is also struggling. Id be interested in getting in touch, I have a You-tube channel (i've been useless on it recently). I hope to hear from you

[Fighting]

Wow, I admire your attitude: Tough times don't last. Tough men do. I wonder if there is a variation on The Tulip Bouquet for men.

[Bronagh2015]

Hi Aaron it was brilliant to read your story. You really have been to hell and back (a couple of times) yet you still end on a positive vibe I take my hat of to you.

[lyndyjane24]

Hi Aaron,

I am so sorry you have and are continuing to suffer so much with lupus. This disease is very difficult to live with and is particularly hard for young people. My 26 year old son was diagnosed when he was 11 years old. Thankfully, he was diagnosed fairly quickly as I have lupus myself. It is heart-breaking to watch my son have to deal with this unpredictable illness and reading your story makes me sad. I hope you have good support from your family and friends as this is very important. I don't know where you live but Lupus UK have a young person's support group based in London, which Paul has probably told you about - if not check out their website. My son was very active and sporty up until the start of his illness and now many things have been taken away from him and he has had to sacrifice doing so many things by prioritising so he can achieve other things. Just like you, getting over any 'simple' illnesses like colds or sore throats takes so much longer for my son than for healthy people. This can be very draining and frustrating. I can understand your 'safety' in decision making and to a certain extent you may always have to be more considered rather than being more spontaneous but you are relatively new to this situation (although 4 years wont seem new) and I think as time goes on you will become more confident. Being so ill does affect your confidence and you mustn't be too hard on yourself. I admire my son so much for how he handles his illness and I hope your family admire you too. Best of luck