Hello! warning: long story

[jadey]

Hi everyone,

I joined the forum a few weeks ago just to lurk around and read up on certain things about dialysis. After a bit of lurking, I am truly amazed to see such an active community and wonderful peer support for people affected by kidney failure.

Last month, I went to the clinic at my university because I've been feeling a bit (and I really stress a BIT because I really didn't feel sick to the point where I can't do my daily activities) sick. Ok let's back up...

7 years ago, my younger sister got diagnosed with end stage renal disease at the age of 15. She went on dialysis (switched from hemo to PD and then back to hemo) for about 3 years. Fortunately, she had higher priority on the transplant list because she was under 18 at the time. These 3 years were not easy for her and the family at all. Because she was so young and less understanding, she was not cooperative with the family and health care team. For example: not taking certain medications, not taking medications on time, not eating/drinking enough, not following doctor's orders, etc. It took some time for her to show the doctors that she is ready for a transplant. A few months before her 19th birthday, she got the call and there was a deceased donor for her. This entire situation was really a rollercoaster of emotions for my family and I. The past is truly a nightmare for all of us and we have put it behind and ready to move forward.

If you are wondering what caused her kidney disease... nobody knows. The doctors did not know what caused her kidneys to fail. Her ultrasound did not show any signs of the common kidney diseases (polycistic, etc). Instead,  it showed that her kidneys were much smaller than what normal kidneys are suppose to be. She was the only person with kidney problems in the family. Ok so the doctors just left it at that--can't find cause so we will just treat her.

Ok now fast forward back to last month. I went to the clinic. The doctor told me she suspects that there might be something wrong with my kidneys. I got a blood/urine test. The same evening I got a call from the doctor telling me to hit emergency right away because my creatinine levels were at 700.. (normal levels are below 100) sorry I'm unsure what units they are using here.. I'm in Canada btw.

After a weekend full of testing, the nephrologist came to tell me my kidneys are functioning at about 15% and that I will need to go on dialysis soon. Cause? Don't know. Tests show nothing. But since my sister had something before, they speculate now that it might be something genetic....

Question is: why didn't I get myself checked regularly after the incident with my sister? My nephrologist asked me this. BTW.. he was also the one who dealt with my sister.. hmm why didn't anyone tell met that I should PROBABLY get tested? Beats me! My own logic was: they never suggested that it might be genetic because at the time, no one else in our family had kidney problems. I am 2 years older than my sister so the logic is... if it has happened to her already at such a young age and I'm past that age already.. it shouldn't happen to me right? Oh how naiive was I then.....

So what's happening now? Well I started PD last month. It's been going well so far.. I must say that it is really tough to get used to this new life. Since I am 22 now, and my blood type is O, waiting for a deceased donor will take 6-7 years here. You can probably tell already that my goal is to get a transplant now, somehow.

I'm really grateful that a forum like this one exists. When I got diagnosed, I was so terrified, I didn't sleep all night. I lost a lot of weight and felt hopeless. Knowing that there are others out there who has been through the same situations and understands what I am going through really means a lot to me.

I think this should be more than enough for an introduction..

Thanks for reading!

Janet

[justme15]

hi Jadey!
thanks for sharing your story.  be assured that you are not alone on this journey!  I did PD before my transplant and I had very few problems with it.
I was wondering, did your docs do a kidney biopsy on you or your sister?

[jadey]

After the ultrasound, the next test would be a biopsy. They talked me out of doing one because 1. I was highly anemic to the point where I might need a blood transfusion. They wanted to stay away from doing a transfusion because it can complicate things for a transplant. Doing a biopsy will risk bleeding so they won't want me to go that way.
2. The nephrologist told me that even if he did a biopsy, the chance of finding the "answer" is unlikely. The chance of finding something TREATABLE is even more unlikely.

It seems like they really don't want to do a biopsy on me. He did a good job of listing the pros on cons of doing one for me. I think the only pro was "so I can rest my heart and just accept it"

He compared my kidneys to the aftermath of a forest fire. He said imagine visiting a burnt down forest and trying to figure out who set the fire... impossible right?

Although my hemoglobin levels have been fixed now and they are at safer levels.. I could probably request one. I am frustrated and scared. I don't want to offend anyone. I feel like if I keep "dwelling" on the why, they are going to get sick and tired of me. I feel that the general attitude is that I should just get over it and go on

[jadey]

I just asked my sister if they ever did a biopsy on her old kidneys and she said no. Why? I don't know :S it was too long ago.. but I suspect that it might be because she was in critical condition when she had emergency dialysis.

[boswife]

oh my goodness...  Why oh why and so young.  I feel that it has to be genitic but i surly dont know of course.  I mean two of you so young.  I have a 'dr' who when he addresses my 'issues' sais, it doesnt matter now the reasons, just the how to 'fix'.  I m not one to accept that fully, so i would have a hard time in your spot.  I wish you the best ever and im so glad you found your way here.  we have other youngens that i hope are hanging around that can give you some comfort and encouragement in all this.    and post away.. As you've seen, theres lots of experience and open arms here...    

[amanda100wilson]

I cannot understand your doctor's reasoning why he wouldnot want you to have a biopsy once your anaemia is stabilised (i take it that you are on epo?). It is important to try and find out what your underlying disease is (unless hefeels that at this stage, the damage will be too extensive to be able to determine this) for two reasons :  1) kidney disease can reoccur in a transplant depending on the type of disease, and 2) you need to know if it genetic for the sake of decision- making shoul you want to start a family down the line.  It is pretty standard practice to do one.

[jadey]

amanda that is a very good point you brought up. I will see if I can speak to him again about this concern. I definitely want to start a family of my own in the future (hope that I am fertile..) and now I am concerned about receiving a transplant and risk losing it because of some unknown underlying disease

he is named one of the best nephrologists from where I live so I really trusted his words and advice..

thank you =)

[Razman]

  Hello from Toronto , It's great that you joined. I haven't been to Winnipeg for quite a few years but I still have finally that live there.  I hope that you will visit often.  There are a lot of people that have been through the same situation as yours and we all have a lot of questions as to why.     

[Katonsdad]

Welcome, Your story is truly amazing  and in the future may save someone the same fate,
Thanks for joining the forum and sharing

Katonsdad

[MooseMom]

jadey, welcome to IHD!

At first, I agreed with your neph that a biopsy may be counterproductive, but after I read some other replies on this thread, I, too, think if you are contemplating a transplant, then it might be a good idea to know what the underlying disease is.

Your neph's "forest fire" analogy makes me suspect a sclerotic disease like fsgs.  But fsgs is a relatively common disease, and it can recur in transplanted kidneys.  If you sister has had a transplant, and if she had fsgs, the doctors would know about it and would be looking out for its recurrence in her new kidney.  Since there is not a specific disease that your sister and her docs are keeping an eye out for in the allograft, then that makes me think that they really don't know what caused her ESRD, and so they probably are assuming the same in your own case.

I can't imagine that anyone would be transplanted without having first ruled out the renal diseases that can recur.

Well, now I'm curious!!  I really hope you can get some answers.

[jadey]

I don't know anything about FSG. So does that mean people who have fsg will not likely be good candidates for a transplant?

[MooseMom]

I don't know anything about FSG. So does that mean people who have fsg will not likely be good candidates for a transplant?

FSGS = focal segmental glomerulosclerosis.  If you google it, you'll get a better explanation than I can give you.  There are quite a few IHD members with fsgs who have had successful transplants.  If you have fsgs, the transplant team will know what to look for should it start to attack a new kidney, so this is why it is important to know what is damaging your kidneys in the first place. 

[Poppylicious]

  jadey!

[justme15]

I had a kidney biopsy when they first discovered I had protein in my urine and kidney dysfunction.  I was diagnosed with FSGS. I currently have a transplant, I'm at 10.5 years.  My transplant is failing now, but biopsies of the transplanted kidney showed it was Not due to FSGS, but because I am forming antibodies against the donor kidney.
So you can have a fairly successful transplant with FSGS...if that is what you have.

[Cordelia]

Welcome, Janet!     

I'm from Canada too, from Ontario     

I understand your creatine levels. Mine was as high as 2400 when I started dialysis, I was a walking dead woman, my kidneys were functiong at 12 per cent is what my neph determined. I had about an hour or so before dying and didn't know it.

Thanks for sharing your experience with us.   

I'm so glad they didn't let you get as sick as I did.

I know exactly how you feel about waiting. My blood type is O  positive and I have the same length of time to wait too.

It's comforting to know there are others in the same boat, being young also myself, that's what I like so much about this little place I call my second home        Hugs to you Janet!   

[jadey]

thanks for the warm welcomes everyone!

[sullidog]

I have glomerulonephritis (gn) I had a byopsy but I don't believe that it is correct, it showed my kidneys reacted to a medication, but before my kidneys failed I was healthy as healthy can be and wasn't taking anything at the time not even over the counter at the time of my acute kidney failure. Even my neph was stunned by this one.

[willowtreewren]

Hi, Jadey!

Welcome to the forum.

I hope you can get some answers, not only for peace of mind, but for helping you through your future plans.

In the mean time, learn as much as you can because knowledge is power. 

Aleta

[RichardMEL]

Jadey/Janet - welcome to IHD!

*big hugs for you!* your family (and you) have been through so much what with your sister and you now with kidney disease. I was reading your story and at the point where you said the doc sais there may be a problem with your kidney I could just imagine you probably thinking "Oh no... crap no... not me too!" kind of thing. Of course since you were on here posting I knew it would be the "kidney card" but still, unhappy all the same.

I'm so glad your sister got a tx and sounds like she's taking good care of it and knows how precious a gift it is - have you found her experience with dialysis of different sorts to be any help to you? Has she been able to discuss with you what it's been like? In a way that may help having someone so close having "been there, done that" as sort of your guide.

You didn't say how old you are, and it's not polite to ask a young lady her age, but I'm guessing you're in your mid 20's or so (please, no offence intended!) - you seem to be dealing pretty well with this stuff - I'm so glad you came here and have joined our community - just know that you're not alone and any silly questions or concerns or whatever you might have - chances are many of us have some idea of what it's like.

Oh, re the creatanine measure - you in Canada are like us (Australia) and the UK etc and use metric - the yanks use the other system. Either way we pretty much understand the various measurements - so don't worry on that score

Re the biopsy - I can see both points of view on this one. I would think at this point it is probably more important to get you stable with dialysis and all that before worrying about a biopsy per se. I had my own 5 or so years after I was diagnosed (but that was like 9 years before I had to start D - I was "lucky" to be diagnosed early). Prob the doc also is concerned about causing stuff like bleeding and possibly affeecting any residual kidney function. Definitely ask the question though with the thought of children etc in mind. That seems reasonable.

As for FSGS - it's not a barrier to tx at all. Indeed just yesterday a senior neph told me that it's a "blood factor" that can and does leave the body - so even if it is what has caused the problem with your kidneys it may not touch a transplant (but it may do).

The thing I am thinking though is that FSGS is not, as far as I am aware, genetic in nature - and since you and your sister have both suffered from kidney disease it seems there could well be a genetic factor involved - perhaps another "pro" to get a biopsy and a better idea of what is going on with the view of children down the track. Do you have any other siblings who maybe should be tested?

Anyway again welcome to IHD. You're amongst friends!!

RichardMEL, Moderator

[jadey]

hi Richard,

Thanks for reading my story. My sister did play a role in helping me learn what to expect. She did PD for a while so I knew quite a bit about the procedures already--training for me only took 2 days!

And yes you are close. I am currently 22. And no I don't have any more siblings. After I told my family about it, I really advised everybody to go get a blood test done.. because you never know right?

I am definitely working real hard to cope with everything. I returned to school a week after my PD catheter insert. Although I missed about a month of classes, I'm still striving to finish my courses this term so I can gradate in April. Of course, the times that put me down are when I think about the future and fear for myself 

[RichardMEL]

phew - you're so young to have to deal with this - just like your sister. It's so much to deal with when you should be enjoying yourself with the biggiest worry about which person to date or craming for a test or something!

What course are you doing? I hope you can finish OK. You're clearly a tough cookie to deal with this so quickly and get on with it....

... and this is exactly why i am sincere and serious when I write now that I would not worry quite so much about your future. Don't get me wrong - Kidney Disease SUCKS even worse than my love life - BUT I am a firm believer that attitude has SO much to do with it. You're clearly a fighter and someone who wants to LIVE not just exist. You also want to understand and make the most of your situation (I can tell, I am psychic - my psychic told me that! - and she predicted by trabsplant!  ) - I think you will make the most of whatever life throws your way. Don't get me wrong I am sure it won't always be easy - we all face that stuff - but I have the feeling that you will get through as best you can.

I'm waving my Vancouver beaver at you and wishing the best!

[jadey]

I'm currently doing an undergraduate degree in microbiology. My goal is to get into medical school afterwards and become a physician. What is kind of funny/ironic is that when I was hospitalized last month, med school applications were due. I was typing up my personal statement while in my hospital bed. At the time I was anemic and full of toxins so my essay was shit. Although I did mention that I am currently writing this statement at the hospital, with renal disease...brownie points?

It's cool that you're from Australia. I have a good friend who just got accepted into the university of sydney school of medicine. I think it would be sooo awesome to have an opportunity to study in Australia

[MooseMom]

You'll certainly have a unique perspective.  I'd bet that your experiences with renal disease will make you a very compassionate physician.

[chook]

  Jadey
Thanks for sharing your story.
The thing I want to comment on is at the start where you say you weren't really that sick - to me, that is renal disease in a nutshell: a sneaky slow loss of feeling healthy that you adjust to and don't even really notice.
Keep posting. All the best!

[Traveller1947]

Hi, jadey!  Glad you discovered this forum.  You'll find lots of encouragement, ideas, support and information here, from people who know your situation and are generous in sharing their experiences.  Difficult as it is to be going through all of this at such a young age, now that you've found us it will be easier.  All the best to you on your journey.