I've been lurking since Day One...

[huxley634]

Hello everyone!
The title of this site is so appropriate I would first like to mention.

I am 24 years old and living in the wonderful Boston, MA!

Well then, let me begin in telling my story:

I was working on my second master's at the University of Cape Town in South Africa (my research is in gender and African politics). I went to Botswana and Zimbabwe to conduct fieldwork during our "winter" break during the month of June. Towards the end, my friend and I decided to make an impromptu trip to Mozambique where there is an extremely long coastline of beautiful beaches that are undistributed by tourists. Little did we know that those areas have some of the deadliest malaria in the continent.

Upon returning back to South Africa, I felt perfectly fine. Two weeks later, I landed up in the hospital for malaria. Within hours of my admission, I was refused to be discharged after it was discovered that I had elevated creatinine. I was diagnosed with acute kidney failure. My last bladder void was on June 12, 2013. I was started on hemodialysis and malaria treatment immediately. After three weeks, my family had urged me to take a leave of absence from school and return for treatment in the US as I had still not begun to produce urine.

A few days later, I returned to the US and once the doctors discovered it had been a month since I last urinated, they immediately diagnosed me with ESRD. I received a kidney biopsy that revealed that I had collapsing FSGS (and no, I am HIV negative). I was tested for every possible autoimmune condition and every test came out negative. I never had hypertension (normal for me is 110/80), diabetes, or obesity.

They started to speculate about my family history, especially focusing on my older brother who also had kidney failure at a young age, 25 years old. Back in 2005, when he initially discovered about his condition, it was concluded that he had gotten kidney failure due to hypertension. The doctors disagreed as this was a unique case, two siblings - both ESRD in their mid 20s, no diabetes). His biopsy results revealed that he also had FSGS, non collapsing variety.

It's my speculation that he had FSGS for quite some time and the kidney damage caused him to have hypertension, not the other way around. For me, it is concluded that I had kidney disease that couldn't withstand a malaria attack.

For both of us, this came out of nowhere. Luckily for my brother, he received a transplant in late 2010 and it is working well.

A few weeks ago, I was tested for a gene to determine whether my FSGS is familial. It was found that I had received a gene from both of my parents, giving me a 70% chance from birth that I would develop FSGS in the future. Unfortunately, we don't know when the FSGS first occurred in my kidneys.

HOW I AM TAKING THIS:
It has been really hard on me. I am a researcher, with dreams of becoming an academic and UN consultant for the developing world. Even with a kidney, my life is greatly affected by immunosuppression therapy (not being able to travel to vulnerable areas). I'm also concerned about my fertility as I am young. I also can't stand that I can't travel internationally during my wait for a transplant. Despite all that, I am still planning to complete my degree even if I can't return to South Africa and will hopefully start working on my PhD soon.

I just don't know why this happened to me and I'm sure we all feel this way. I feel like my entire life is shattered. As a research minded individual, I delve into the Internet, reading daily about my condition. The more I discover, the worse the news gets.

[Zach]

It is a Brave New World ...

Welcome to our community!
 

[Poppylicious]

  huxley634.  So sorry that you're going through this but you have come to the right place for venting, support, advice and (hopefully, sometimes) a bit of a giggle.

*huggles*

[Angiepkd]

Welcome huxley!  So sorry you have to deal with so much at such a young age.  Sometimes when life throws you such a huge curve ball, it is hard to imagine anything being right again.  Hang in there and try to make it work for you.  Easier said than done, but kidney failure will make you tougher than you ever thought you could be.  You are definitely in the right place for support and information!  Everyone here has been through something that you are dealing with.  Ask questions and vent when you need to.  Hope things work out for you!

[Shaks24]

Welcome Huxley. So sorry for your hardship. I hope your being here helps you deal better with the situation.  Glad you joined IHD.   

[willowtreewren]

  Huxley!

What a story. Research is good, but try to remember that statistics are about averages, and every single person is unique. 

Welcome to IHD!

Aleta

[UkrainianTracksuit]

  huxley634

Wow, that is some interesting and exotic tale of kidney woes.  So not fun.  That being said, you can find a lot of information and caring people here. 

While I cannot understand the sudden shock you must be feeling with such life changing events, I understand your academic situation.  I’m currently on a leave from my PhD studies until my medical situation is sorted.  I also cannot travel internationally to countries that I need to be in or live in for research.  (Or just visit family for that matter.)  It’s been that way for the last 6 years of my education.  Kidney disease has taken away many work opportunities internationally and I’m slowly learning to accept it.  As my nephrologists tell me, with kidney disease, we need Plan B’s to Z’s.  That being said, I think it’s wonderful your dream is to be a UN consultant in the developing world.  Just to look on the positive side, if you haven’t done so already, maybe think about a NY based UN position whilst you cannot travel internationally pre and one year post transplant?  You know, just so that you’re working towards your dream of being on the ground and you’re still in the thick of it.  The internships there were great when I couldn’t travel but wanted to still work in security/disarmament.  But ignore me if you don’t want to hear that, most people call me insane.  Take it from an academic who’s “been there”: things happen, we feel shattered, but we regroup, find another path and get it all done.  We wouldn’t be academics or researchers if we weren’t crafty!  You are not alone and with your determination, you’ll achieve whatever you want to do.  The kidneys are just along for the ride.

Anyways, great to have you here!  Nice folks here. 

[MooseMom]

Huxley, I, too, have fsgs but never knew until fairly recently that there are varieties of this fab disease.   

Most cases of fsgs are not hereditary, but some are, like your own seems to be.

In the later stages of my pregnancy over 20 years ago, I was admitted into hospital with pre-eclampsia.  After my baby was born, there was not the expected reduction of proteinuria, so a biopsy was performed and the diagnosis was fsgs.  I always held the belief that perhaps I was predisposed to this disease and that the rigors of pregnancy tipped the scales.  While this can't be proven, years later when I asked my current neph about it, he said that there was enough anecdotal evidence to make him think this is what happened.  So your theory that malaria was the tipping point for you isn't outrageous and may well be spot on.

Kidney damage in and of itself causes hypertension, and hypertension causes kidney damage.  It's the chicken or the egg scenario.

Kidney failure almost always leads to vast disappointment.  Your ability to travel abroad is greatly curtailed.  I was unable to have any more children, and the tragedy in that is that the one child I WAS able to have is disabled.  Everyone who has posted here with stories about their ESRD has shared their disappointments with us.  You are obviously smart and will find a satisfying goal in life. 

Immunosuppression is the topic of a lot of research and development, so it is entirely possible that in the not too distant future, new drugs and techniques will enable kidney recipients to live a freer life and go wherever they wish in this world.  Don't give up hope.

Also, no one is going to hold a gun to your head and forbid you from travelling to vulnerable areas.  It probably wouldn't be the wisest thing to do, but it's not like anyone will keep you from leaving the US.  If there is a specific place you want to make your base, why not consult a tropical disease expert, tell her/him your story and see if you can get some good advice?  When transplanted, you may be immunosuppressed, but it's not like you'll have no immune system left at all.  Like all tx patients, I get my labs done on a monthly basis (including a WBC differential), and all of my levels are within normal range, and frankly, I haven't even had a cold since my tx.  I know that tropical diseases are more virulent than a common cold...!  Still, my point is that as an academic, this could be an interesting field of research for you while you are awaiting a transplant.  Actually, now I'm rather curious.

Do you know anyone who might be willing to be a donor for you? 

Anyway, a lot of us here know all too well how you are feeling.  I hate to hear of yet one more person whose life is hurtling out of control because of fsgs.  It's a horrible disease that causes such suffering for no good reason.  I'm not diabetic and I've never been hypertensive, but I have CKD due to fsgs.  Doesn't make a lick of sense, but not a lot does, frankly.

[bmrdave]

I don't know if it might be helpful in your finding a diagnosis or treatment, and I AM NOT A DOCTOR, but these symptoms of FSGS sound an awful lot like my diagnosis of lupus nephritis.

[huxley634]

I don't know if it might be helpful in your finding a diagnosis or treatment, and I AM NOT A DOCTOR, but these symptoms of FSGS sound an awful lot like my diagnosis of lupus nephritis.

The doctors speculated that I might have had an autoimmune condition that caused my collapsing FSGS but they discovered that I didn't have any conditions.

There might be a possibility that I might have something though because autoimmunity runs in my family... IDK. But I was specifically tested for lupus, my cousin actually died of it recently.

Ahh the mysteries of science.

[Jean]

At any rate Huxley     to IHD. Glad you found this group. As you have already seen, there are lots of good people here.