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Lesley’s Fight Like a Girl Story (Goodpasture’s Syndrome)

Lesley's Story Goodpasture's SyndromeHi everyone my name is Les. I am a wife, mommy, and animal lover. I was diagnosed with Goodpasture’s Syndrome four years ago. As a result I am currently a dialysis patient with end stage renal failure (currently on the transplant waiting list).

It all started four years ago to the day. I had been feeling extremely tired for a few weeks but just put it down to working a new job and very long hours. People started commenting on how pale I was and I just laughed it off and said, “Duh, I’m Scottish!” Then on a Friday around 3:45 pm I called my then boss at the time and told her I must finish early that day as I just didn’t feel right, my instincts told me it was something more than fatigue. I managed to get the last doctors appointment of that day. My doctor examined me and just to be cautious ordered me to have some bloods drawn thinking I may be just low on iron or something trivial like that. So went next door at 3;55 pm, the blood place closed at 4 pm but the nurse was lovely and said she would do the test, thank goodness! I was told had I went home that weekend and not had the blood test I would not be here today and would most likely have died in my sleep.

So went home feeling worse by the hour. I crawled into bed, then it must have been about 5:00 am in the morning when my phone started ringing, I barely had the energy to answer it and all I could here was my doctor saying is, “Lesley you must either get in an ambulance now or get your husband to take you to the A&E at The Alfred Hospital – they are waiting for you I’m sorry to tell you but your results are very abnormal and your kidneys are failing.”

My husband and I were in total disbelief . We arrived at the hospital and the full red-carpet treatment was provided. The doctors couldn’t diagnose me for about 10 days as Goodpasture’s Syndrome because it is such a rare condition and they have only seen one case in Australia per year on average. Their initial thought was either Lupus or Leukaemia and decided to treat it the same way. So I had a large course of steroid IV’s then six months of aggressive IV chemotherapy and plasmapheresis. Now the GP managed to do a really good job at wiping out my kidneys and left me with only 20% function which was better than nothing and it certainly ensured I had another 5-10 years without the need for replacement therapy.

Now fast forward one and a half years, September of 2011. I started feeling very nauseous one morning and couldn’t stomach my morning coffee and thought hmm something must be up as I LOVE my coffee. For some reason I thought I’d buy a pregnancy test, even though my husband and I were not trying for a baby my instincts lead me to the pharmacy. Shortly after we saw those two little blue lines and I told my husband, “we are having a baby!”

Both elated and terrified at the same time we made an appointment to see my renal doctor, as were unsure how this was going to work. The doctor told us I would be considered very high risk due to my lack of kidney function and that there was a risk of premature labor. Pregnancy went great up until about 29 weeks when I had my weekly scan there were signs that I was developing preeclampsia. I delivered my baby boy Maxwell at 29 weeks and six days by emergency c-section. In that week the remainder of my kidney function was pretty much wiped out. Max spent six weeks and six days in the NICU which was the most challenging time of our lives and made chemo feel like a walk in the park! I survived on about 11% function and held off going on life support until Max was 14 months old. By then I was just so unwell I was begging for dialysis to provide me with some sort of relief!

So in July 2013 I had my surgery to have my peritoneal catheter fitted in my tummy and began dialysis. I do my dialysis each night for nine hours while I sleep, which works out great and allows me to work and live more of a normal life.

Now to my workplace. I work for one of my dream organisations World Vision where the staff values shine through to the core of what World Vision stands for. There are three angels where I work that have all offered to be tested to see if they are a suitable match in order to save my life. I have been blown away by this utterly selfless act of human kindness and no matter what the outcome I will never forget how special these ladies are.

Wishing you all peace, love and happiness,

Lesley
Australia
Submitted 01/18/2014

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.

11 comments

  1. Good for you, Lesley. I too was diagnosed with Goodpasture’s along with Wegener Disease a year ago this week. Ended up on dialysis and the transplant list, but then out of the blue my numbers started improving to now I’m at the point I’m ineligible for a transplant. Feeling great. I was treated with Cyclosen and Pregnisone, along with plasmapheresis 3 times a week. Doctors are still scratching their head about the recovery. So keep up the fight.

    • Gordon, my son four years ago this month was diagnosed with Goodpasture and Wegener at the age of nine. Same treatment as yours, other than have plasmapheresis for 14 day in a row. He now for the last three year has been on methaltrexa and off prednisone for the two. The same with his doctor. Can’t figure out his recovery. Lesley glad you and max are doing ok. Sound like your co workers are some amazing people.

      Take care

    • Hi Gordon,

      How’re you? My sister was diagnosed with anti-GBM disease in Aug and her number also improved a lot that she didn’t even need dialysis now. The doctor said her renal function restored to 30%. Is your recovery going good now? Keep up the fight!

    • Gordon , it is so amazing to learn about your fight with the disease. You are Indeed a great soul . As my sister too has GP , and is on dialysis from past 6 months , I was wondering if there could still be chances of recovery of Kidney function? After how many months did your kidney function come back ? God bless you .

  2. Hello Les,
    I was diagnosed with Good pastures.or anti gbm, 90% crescent 8 weeks after giving birth to my youngest son at the age of 27. I’m now 34. I had a transplant after 18 months of dialysis. I had over 9 Ivig treatments in order to accept my brothers kidney. I’m not sure if they have Ivig where you live…but it’s an amazing thing..it lowered my anti bodies. It’s nice too meet other people with GP.
    Take care,
    Rachel

  3. Good Pastures Disease is tough!

  4. Just diagnosis with goodpasture syndrome. Trying to learn as much as possible about the disease. Dr. Says i don’t. fit with the disease Im a 53 years woman.Healthy until 1 mon

  5. Healthy until 1 month ago. Looking for any kind of info on it. No sure what to expect

  6. I was diagnosed almost 17 years ago, mine only affected my lungs ( which I was told is super rare). I too almost died, thank God for specialist and Mayo Clinics of Minnesota! I under went treatment for almost 2 years with many many transfusions, and countless pills. BUT I AM HERE and have been symptom free and considered in remission since. I was told I would never have children again, but happy to announce that I have 4 since. I believe God looks over all of us, and I will pray for all of you as well.

  7. I am so thankful to having been able to find you people . My younger sister was diagnosed with Good pastures 6 months back. We are totally shattered . She is on dialysis sinse then . As I read some amazing stories of recovery here , are there any chances of Kidney function coming back ? Are there any support groups where we can learn more about the disease? Or patient support groups ? I will be grateful for the help .

  8. I request people here to help and guide me for my sister. She was diagnosed with Anti -GBM and C Anca 8 months back . She is on dialysis now and on transplant list. Those people who have recovered, are there any chances of recovery ? Can we still be hopeful ? She is a young girl and have reposed her faith in God. Please guide us. You people can give someone a ray of hope to continue their battle . Please help .

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