Hi my name is Rachael. I’m 22 years old and I was diagnosed with FSGS nephrotic syndrome in April of 2012. I knew I was sick when I was in year 12 (2009). I would get stomach pains on a regular basis I was told by doctors that there wasn’t anything wrong with me and that it was just period pain. The pain started to get worse and traveled to my back and ribs. I then decided to go and see a different doctor but they where all saying the same thing; it was stress from HSC or period pain.
When I had finished year 12 the pains had stopped for a while but I still knew my body and knew there was something wrong. I was getting sick every time I drank alcohol even if it was one cruiser. Then in February of 2012, I got engaged and started planning my engagement party which was set for 26th of April. On that night my feet swelled up and I just figured it was because I had been on them all day so I swapped my high heels for thongs. The next day my legs had started to swell and I knew there was something really wrong. At this stage I asked my mum who was the best doctor in town.
I went go and see my now local GP and he did a urine test which showed I had blood and protein in it. I was then sent to Port Macquarie Hospital and put under close eye of a nephrologist, who during this visit organised for me to have a kidney biopsy (one of the most painful operations ever as I was awake). After this was completed the results took a while to come back. I was discharged from the hospital and sent home when the results came in. I was out on a very high dose of Prednisone 80 mg daily which in three months made me put on 50 kg which was painful on my skin as it didn’t have time to stretch. I now have what I like to call battle scars all over my stomach, my sides, and my arms.
Then in November of 2012, I had what I thought was just a normal cold. I was sitting in the lounge room with a bowl of hot water and Vicks. My mum noticed I sounded wheezy, so we decided to go to the hospital to check it out. They did some blood tests and by this point I couldn’t breath, I was coughing, and I had an oxygen mask on. They then transferred me from AE (accident emergency) to DHU (high dependency unit) when the test results came back. They then told me that I had two blood clots one in either lung and also had a bit of fluid build up in my lungs. I was in HDU for about two weeks before I was aloud to go home. I was then told that the high doses of prednisone was not working anymore and my body had become immune to it. I had to decrease the amount I was taking to in order to be put on a harsh drug called Cyclosporine at 300 mg a day (150 mg twice daily). I was now on a fair amount of tablets (about 22 tablets a day).
Then everything started to get better. All my tests where coming back improving until September 25, 2013. I went to the doctor during the day and told him I was having headaches and he said, “Oh there probably stress headaches. Go home and take Panadole.” I did and I then woke in the middle of the night with a headache and felt like I had been hit in the head with a sledge hammer. We called an ambulance and got taken to hospital. When in the hospital they did a CT scan on my head which didn’t show anything. I was admitted just into a normal ward. Then my nephrologist came and ordered all these tests. I was sent for a MRI when all the test came back it showed I had a blood clot in my brain. Ao here I am on the 29th September 2013, telling my story of how I am fighting. One day I would love to be a motivational speaker and talk to people who just need that one person to say I know how your feeling and actually do know how they feel. 🙂 Also the picture of me is when I was on a heavy amount of steroids for my illness.
Rachael
Australia
Submitted 09/28/2013
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
I am so proud of you Darling, this is my daughter xxxx
Well done Rachael, our NS family are here for you – we understand xx
Thank you Cathy, At times I don’t know what we would have done without the love and support from our NS Family xx
Rachael you are an amazing young lady a true fighter x Keep strong and never ever give up lots of love from your NSS x
Thank you Jayne I wouldn’t of got through this with out the support I get from all of you xo
Rachael: thank you so much for sharing your story. It sounds like you have had to deal with a lot of pain, fear, and silliness with doctors. Good for you just persevering and doing what you had to do. I hope you come through this without further difficulties. You go, girl 🙂
Thank you carol, mum said she shared my story on her page 🙂
Rachel u r an inspriation to everyone. brought a tears to my eyes when reading this. I hope things only get better for chicky because u r a one of a kind person and im so glad to know u. All the best xxx
Thank you Jamie 🙂 we are hoping for good results in 6 months 🙂
Wow, words can’t even explain how I felt while reading. Goose bumps all over my body! Such a sad/unfair journey, but also very inspirational. Xxx
Thank you Maddison it has been a long journey from that day at footy if you remember to hope fully one day getting off all my medications
I shared your story onm my Facebook page “Hill’s Gym Training Squad” – I spoke to your mum last night – and we are looking forward to meeting you. Be strong 🙂
Thank you Ted,
After chatting with you , Rachael’s doctor has said no exercising for the moment, but just as soon as he gives the ok, she will be there <3
Hi, I just found this. I was diagnosed with Minimal Change Disease with Nephrotic Disorder in 2009. I had also noticed swelling in my feet and thought it was because I stand up at work all day, then one morning at work I got really dizzy and I could feel my stomach swelling . It was so bad they had to call an ambulance and take me to the Hospital. The emergency room sent me home and just said I had a case of edema, ( NEVER rely on the emergency room). It was my PCP who I saw the next day and who ran the proper test that caught the protein leakage. By the time she caught it, I was so swollen that I could only fit one pair of cargo pants that had been to big but now fit just right. She sent me back to the emergency room where they were waiting to admit me. By the next day my eyes were swollen shut. I was on 100 mg of Prednisone (a steroid) for three months with a slow taper. The steroids gave me terrible insomnia and I got so fat its ridiculous. I’ve been in remission since fall of 2010, which is great but the side effects of the steroid still reek havoc on me. Its nice to see an adult tell their experience. Its usually children that I hear about.
Hello Anddrea,
Thank you for sharing your story. Sorry for not replying sooner but haven’t checked this post in ages. Rachael is now another year along with her FSGS journey, she is not yet in remission unfortunately. She has a page in facebook Rachael’s nephrotic syndrome, FSGS journey ….. If you like pop over and have a look and read what she has been experiencing through her journey so far. I wish you all the very best and hope you remain in remission
Susie (Rachael’s Mum)