I was diagnosed with S.L.E - APS - Raynauds at 18 I’m now 29! I wish I’d known about this page years ago. I wouldn’t have felt so alone. When I was first diagnosed I was suffering with blood clots in my legs as well as joint pains miscarriages. Swollen lymph nodes. Butterfly rash and enlarged kidneys. Over the years I’ve been on and trialed god knows how many meds and treatments. In 2010 I had to have my gall bladder removed as that had enlarged and the gall stones were causing excruciating pain. Keyhole surgery didn’t go to plan and then ended up having to cut down through my belly button then stapling me back together. Waking up after that was a massive shock and gut wrenching! Fast forward a while I met my now partner in February 2015 and my breathing became difficult and scans showed I had multiple clots in my lungs despite being on warfarin. Eventually I was swapped to a clexane injection daily. Again I was still developing pulmonary embolisms. I was sent for lung and heart function tests at the royal hallamshire hospital in Sheffield in 2016 where they decided I was a perfect candidate for a pulmonary endarterectomy at papworth hospital in Cambridge. I traveled there with my partner for an appointment with the specialists where they offered me the surgery, I was so scared. I’d only ever had my tonsils removed and my gall bladder which was supposed to be keyhole. Knowing they wanted to perform a 9 hour open heart surgery to remove as many clots as they could was terrifying to me esp as there were quite some serious risks. They saw that and offered me a couple of weeks to think about it to which my partner piped up and said she will do no such thing you put her on that list today! I was in no fit state to argue, I was still in shock to find out that it was serious enough to warrant me having this scary procedure. Eventually that evening I was on my way home still in a total state of shock. I now at 25 had to go home to the midlands and tell my family I was on the waiting list and the risks involved. 2 months later I got the call from papworth with a date for surgery 3rd November 2016 a week away! The week flew by! 2nd of November my partner and I packed the car said goodbye to my friends and family and set off for Cambridge! My partner was staying in the hospital accommodation for the week. That evening I had yet more scans and was shown to my bed my partner was given a time that night to come and see me the next morning. 5am the nurse gently woke me to shower and prep me for surgery. My partner came and just held me, I cried he cried the whole team cried. He walked with me to theatre and we said our “see you’s“ I met my surgeon and broke down into sobs pleading with him not to let me die yet. He held my hand and tried to reassure me. He even said he would be at my side when they planned on waking me up 24 hours later, they got me ready and calm, everything went black...............
When I woke there was a nurse stroking my hair saying come on Karrina keep breathing baby. Everything went black again...............
Again there was a nurse stroking my hair when they tried again another 24 hours later. My lungs were so weak I was so exhausted I had to keep on being reminded to breathe as I would just stop. When they were happy I had to cough up the tube out of my throat and as promised the surgeon was standing at my window in critical care. I was so grateful in that moment to be here alive! My partner arrived shortly after all breathless at running from his room to my room in the critical care department when they called to tell him they were trying again to wake me up. He cried and I just smiled at him grateful to have another chance. Later when I was a bit more with it the nurse told me that he had actually come to see me when they phoned him to say I was out of theatre he came into my room when I was on the ventilator looked at me and just said “Nurse! I’m gonna pass out.” The nurse shouted from my door “Help! We’ve got a fainter!” Another nurse had to get him a coke 😂 oh how it hurt to laugh and how embarrassed he was. When they were happy my lungs were strong enough I was transferred from critical care to the ward I’d be on until I was ready to leave. 2 days later I developed headaches and again I got scared. Because one of the risks were that I could develop a bleed on the brain. I was having a scan within hours. I got back to the ward and it was drug round. The nurse gave me warfarin without waiting for the results from my scan. I got the results half an hour later when the doctor saw the images. I had developed a bleed in my brain and he said to hold off on my warfarin for a few days and to see what happens, I of course told him the nurse had already given me warfarin. He was outraged! Needless to say I was scanned again the next day, this one showed it had got bigger. The doctor came again to tell me and he couldn’t apologise enough I said it wasn’t his fault obviously. He insisted that the nurse would be made to apologise too. I felt there was no need though as the damage was done yet she was made to come and apologise. I never saw her again throughout my stay. A day later again I was scanned and this time it showed signs of reducing to the doctors relief, he was becoming worried that they may have to drill a hole in my skull. (No thank you! No more surgery!) a couple of days later I started walking around and was able to go to the bathroom by myself. Nurses were chasing me along the corridor with my oxygen canister as I’d left my bed without it. Lol. After a week my partner had to go back to Staffordshire, Lichfield. As he had to go back to work. Friends and family would make the trip to see me when they could but it wasn’t the same as having my best friend and partner by my side. I wanted to discharge myself. I was seeing patients that had their surgery after me leave before me. Granted some of them didn’t have as many problems as I might have had, but it was still so disheartening. I wanted my body to just get stronger. And everyday insisted I wanted to be discharged. In one last attempt at keeping me in the hospital my partner said he would travel each day to see me. I felt terrible and selfish letting him do it. He would bring my brother with him for company. Eventually doctors agreed reluctantly to discharge me almost 3 weeks after my surgery I spent the next couple of days practicing stairs for when I got home and coming off the oxygen. Finally the day came and I was sad to be leaving the hospital. I cried when I met with my 24hour critical care nurses to say goodbye. I cried when saying thank you to my surgeon and I cried when saying goodbye to my ward nurses. It was a rollercoaster journey but I was going home I was exhausted just getting to the car but I was excited to be going home! I still have yearly check ups now at the royal hallamshire. I still get very breathless because not all the clots could be removed. But I’m here! I dread to think where I’d be at if I’d decided not to go ahead. I still have many problems I have constant headaches, I go temporarily blind in my left eye at times. It comes like a fog down over my left eye lasts a while then as quickly as it came on it just goes. My memory is terrible now. I can’t concentrate very well. And get irritated at the littlest of things.
I had a stroke in November last year at 28 and on the 3rd of November had a massive seizure. I’ve had numerous seizures since and my rheumatologist thinks the stroke triggered them but with having lupus I’m continuing to have them. Life is hard. My mobility is poor, I fall over without warning and continue to have right sided weakness since the stroke. My balance is terrible and I won’t go out unless accompanied in case I fall or have a seizure. Until November last year I always worked full time. I find I mentally struggle with things now and I rage at the slightest of things. I feel angry and bitter at the world. I feel like a burden to family and friends and often feel as though life would be easier for them without me. I’ve recently found out I have a leaky left heart valve too which is now something else having to be monitored. I just feel so let down by life in general!
I’m just so glad I’ve come across this site!
Karrina xx
Strange episode,face looked like I was having a stroke.
Has anyone written to their GP to ask to be referred to a different Rheumy?
Think I have got lucky or unlucky 
new relationship...when do you tell them you have lupus?
