My Story

[Billabond1]

Hello all,

I have been lurking about these forums for the past few weeks just
soaking up all of the information and interesting stories everyone
here shares. I have decided that some of you might want to hear my
story (or maybe not ). So, here we go...

My name is Matt. I am a 22 year old college student from
Pennsylvania.  Six months ago I decided to go to the hospital after
about a week of not feeling well (very weak, tired). The onset of
difficulty breathing was the kicker that made me decide to go. After
sitting in the ER for several hours I was about to be sent home with
the diagnosis of mild pneumonia. A nurse then rushed in and informed
me that they had looked at the wrong x-ray and my blood tests were
indicating kidney failure. The correct x-ray showed my lungs full of
blood.  Admission ensued.  The next morning, the neph said he had no
idea what was wrong with me and that he was transferring me to his main
hospital where the rest of his team was.  Two days, a kidney biopsy
and 160mg of prednisone later, the head nehp (who is absolutely
awesome,) said "Hmmm, could be Goodpastures syndrome".

She was right on. They started dialysis, plasmapheresis, and continued
80 mg of prednisone per day. After a day or two I could could breath
again. My lungs responded extremely well, but I was left with two
busted up kidneys. After 13 days in the hospital, I returned home to
my parents house and began my thrice weekly dialysis adventure.

6 months later, I am living at school again and back to work. The
doctors said there was a chance albeit small that my kidneys would
recover. They have recovered a small amount, enough to do twice a
week, 3 hours 30mins per.  Which is an amazing change from 3 a week, 4
hours.

I have my transplant eval in two weeks, as my neph has now decided
that anymore recovery is unlikely.  I suppose it is possible, but we
decided I should be on the list (don't have a potential living donor at
the moment) in the mean time .

Anyway, I may have gotten a little long winded with this, but I had
some time to kill (3 hours and 30 mins to be exact) and thought that
some here might want to hear this story.

I would be happy to share any more info that I may have missed.
Thanks for taking the time to read this.

-Matt P

[Sunny]

Another Goodpasture's Disease person! Me too.
I'm sorry you had to go through this. Only 1 in a million people get Goodpasture's. It is extremely rare.
After my treatment of High doses of prednisone and chemo of cytoxin, I was able to regain some kidney function for many years, although now, after 9 years, my kidneys are dwindling down in function. I want to tell you that Goodpasture's is survivable and you're going to be okey. Get on that transplant list and look for living donors where possible.
I hope you are able to gain even more kidney function, but if not, the transplant list is a smart way to go. Glad to know you are able to go back to school.

[MooseMom]

Thanks so much for taking the three hours and 30 minutes to tell us your story!  Time well spent because you will find many such interesting stories here, told by people who have so much to offer by way of support and information.  Several of us are trying to go the transplant route just like you.  Good luck to you, and please post often.

[galvo]

G'day Matt and  . All that must have come as a horrible shock to the system. You'll find support here!

[Bajanne]

WElcome to our community!  Longwinded?  The founder of IHD, Epoman, would give you an A+.  He loved long and comprehensive intros.  You see, that is the only way we will really get to know you.  I also love the fact that you are now a de-lurker.  It means that you have checked us out and you like what you see, so I don't have to convince you that this is the place to be for anyone facing the renal challenge.  All I have to do is tell you 'Welcome to your IHD family'  
Looking forward to hearing from you.




Bajanne, Moderator

[Rerun]

Billabound1 welcome to IHD.  Sounds like you have been through a lot in a short time.  I'm so glad that you are back at school living your life minus the 7 hours a week on a machine.  Thanks for joining us.  Great intro too.

Rerun, Moderator         

[Billabond1]

Thanks a lot for all of your kind welcomes.  It has been quite the experience for me so far.  I went from being perfectly healthy to this in a matter of days.  Pretty crazy.  But, last week was my first time on twice a week (Monday, Friday), and it was best week I have had in a while and I only put on about 2.2kg of fluid weight. 

@Sunny  I read a lot of your posts on here over the past week or two.  I found your experience and some others here with Goodpastures to be very similar to mine.  I was only on the cytoxan for about 3 months.  It caused my white cell count to drop extremely low (.3 or 30 depending what dr. you talk to) and they decided to take me off of it for good.  That was long enough to make me start loosing my hair, but I fixed that situation by buzzing it all off .  I am also now down to only 10mg of prednisone, but had to endure nasty mood swings and extremely strange food cravings to get there.

[looneytunes]

Hi Billabond and though I'm a little late...I also welcome you to IHD.   

[RichardMEL]

Welcome Matt! You've had quite a ride with this kidney failure thing. It's always a big shock to the system yet it seems like you've handled it pretty well. It's good you recovered some function and this allows you to spend more time doing what YOU want to do in life - which is vital.

 

RichardMEL, Moderator

[Billabond1]

Welcome Matt! You've had quite a ride with this kidney failure thing. It's always a big shock to the system yet it seems like you've handled it pretty well. It's good you recovered some function and this allows you to spend more time doing what YOU want to do in life - which is vital.

 

RichardMEL, Moderator

It was quite a shock.  I have been working very hard to stay positive about everything.  I have always felt that it is a waste of time to get angry or upset about anything, and have been treating all of this the same way.  Although I do find my self getting angry about stupid things these days, but I will blame it on the prednisone.

[RichardMEL]

Matt - great attitude!! Exactly what I try and do - stay positive - because curling up in a corner and feeling sorry for myself, or angry, helps nobody - and is probably worse for me emotionally and potentially physically. Agree sometimes it's really difficult... however all this stuff has also taught me to not sweat the small things so much. You know those little irritating things that happen from time to time.. it's not worth getting worked up over when there's the really big crap going down. I think I stress less these days overall, though waiting for the transplant call is a pretty frustrating thing - but I know I'm far from being alone with that one.

Good to have you on board!

[monrein]

  Matt.  Glad you decided to join us and look forward to hearing more about your journey as it goes along. 

[Zach]

It's good to have you join our community.
 

[Sunny]

Shaving your hair was a good solution to hair loss from cytoxin. Besides,it is the look nowadays. My 21 yr old son keeps his head shaved and he has beautiful hair.
Don't let this event in your life hold you back from all those plans you have for yourself. You're young and probably in very good health prior to your illness so that will all be in your favor as you recuperate. I'm glad you seem to be pulling through all this nicely.

[cloud393]

Welcome to the site and thanks for sharing your story with us.