I started dialysis in January

[meme8583]

Hi Everyone! I started emergency dialysis in January for FSGS, I was told yesterday that this is not a cause so now I still don't know why my kidneys failed. I am 33 years old live in Houston and WANT to have a kidney transplant so I am not on dialysis longer than I need to be.
It has been a rough start vomiting, cramping, headaches, numbness, tingling sensations. I have had a blood transfusion, and many iron injection treatments. My blood pressure runs low now all the time, and when it drops cause too much fluids are being pulled off I am spinning. My doctor wants to keep us all bone dry. He put me on Topamax yesterday anyone know about that??

One thing I have to say is my family has been rock stars they are so supportive!! My mom and dad have been there for me every step of the was and so have my sisters and brother also my extended family.. it really helps to have them!! I love them so much 

[billybags]

Hi meme8583, Welcome to our family, you sound like you have been having a rough 2 years, are you feeling any better now you are on dialysis. Dont be afraid to ask lots of questions on this site, there is always some one here that will give you an answer.   

[aharris2]

Hi meme,

  Welcome to the neighborhood.

Just a short comment here. I read in another post about a seizure -Topamax appears to be for seizures. I want to comment further on this, but in your other post. The med is also for migraines. 

[MooseMom]

Hiya!  I'm from Houston and still have family there.  I also have FSGS.  I'm not 33 years old, though...unfortunately.   So, has anyone given you any idea why your kidneys failed?  It's odd that it seems to be such a mystery.  Anyway, welcome to IHD!

[monrein]

   and I hope that you will find both information and support on this forum.  It really does make a huge difference when our family and friends are supportive of us as we navigate ESRD and I'm glad that yours have stepped up to the plate.

[galvo]

G'day and .

[Rerun]

Hi meme and welcome to IHD.  I hope you find the site interesting and helpful.  Dialysis sucks so I hope you get your transplant soon.

                                     

Rerun, Moderator

[Bajanne]

Welcome to our community!  We are so glad that you found us, and decided to join us.  One of the buzzwords in IHD is 'Knowledge is Power!' and that is what this site does - it empowers those dealing with this renal challenge.  This is just the place for information and lots of support.  I have come to find it not just a website, but a real family    You will soon find out this.  We are all in this together.  So keep reading and keep on posting.  Let us know how you are doing.




Bajanne, Moderator

[paris]

We are so glad you joined us.  I have a daughter your age, and I am so very sorry you are dealing with this.  It does sound like you have had a hard 2 years.  You will find so much information here and also a lot of support.   I think many of us relate to your list of symptoms. It isn't fun, is it?   Ask lots of questions here.  Everyone is very willing to give answers.  Looking forward to reading more of your posts.   Welcome to IHD!   



paris, Moderator

[looneytunes]

Hi meme and I also welcome you to IHD which is a great place to find support from others how are walking in your shoes.  I'm looking forward to getting to know you from your posts.   

[RichardMEL]

G'day Meme, and welcome to IHD!

Seems like you had a rather rude introduction to the wonderful world of dialysis (don't mind the sarcasm) and that's unfortunate. I'm interested that you had a diagnosis of FSGS but they're saying that's not the "cause" of your kidney failure? I'm a FSGSer myself, and I guess that's the result, rather than the specific cause, but if you ask me it's six of one and half a dozen of another.

Sorry about the cramping and low bp - perhaps you should ask for a BVM/crit line analysis during a session so they can get a better idea of how dry or wet you are to reassess your dry weight. You shouldn't be vomiting or cramping on dialysis and if they're doing nothing much about it I think that's a worry (and it's horrible for you!).

Anyway good to hear from you and have you on our site. I've been to Houston a few times in my life - interesting place! Someday I may return!

 

RichardMEL, Moderator

[MooseMom]

Richard, I just have to ask...what made you go to Houston?  It's not exactly a tourist mecca!  What did you do there?  Did you go in the summer?  Ah, Houston in August....OMG!

[kidneyboytrip]

Hello 8583 im 34 sorry to hear u hav been havin such a hard time ask ur doc 1st but if possible try gatorade for that low bp it quickly replaces the electrotytes that the dialysis machine removes its high in sodium and potassium so ask ur dr 1st gud luck

[meme8583]

Thanks everyone for the welcome! I am upset with my doctor I told him the side effects I was having with the Topomax- hallucination, numbness, tingling sensation, dizziness, confusion, I could not think straight and I was only on it for two days. He claims he told me to ease into it and take half a pill every night but I was in the hospital when he prescribed it and on the prescription it says take two a day. So I told him about the side effects and he just told me to lower the dose, I told him I don't want to take this I would rather take another medication for migranes. There are many other things that upset me about this doctor and his dialysis center, anyone know of any good docs and centers in Houston?

[RichardMEL]

Richard, I just have to ask...what made you go to Houston?  It's not exactly a tourist mecca!  What did you do there?  Did you go in the summer?  Ah, Houston in August....OMG!

weeeeelllll this is MANY moons ago but I have been to Texas a number of times (everything's bigger in Texas, baby!!). Once to Dallas to meet a friend who was going to go into the Marines. We spent 4th of July there. It was a blast. I visited Houston another time, I think it was 1994(!) to meet up with another friend (well OK, a gal friend I was flirting with - nothing changes with me  ). Anyhoo the flirting part didn't work out, but we had an absolute blast. I remember one night she took her little dog, and me, to a pretty seedy part of town. The sort of place where it was like "OK after we cross the train line here you want to keep that window UP and door locked" and wound up at this biker bar. Well I thought I might get my head kicked in! However the big softies fell for the little dog and we ended up having so much fun. I think my aussie accent helped a little bit, so rather than beat up the nerd, they were all very cool. It was a lot of fun.

That's also where I acquired a taste for Dr. Pepper....