New member - Overwhelmed in Iowa

[knmiller]

Hello everyone,

I tell you, it's been nice to sit down and read some of the comments on this message board. My life has taken a complete 180 in a matter of weeks and my mind is still trying to catch up. I'm on a roller coaster ride, but hopefully, there will be more up's then down's. I keep telling myself that there is a reason for everything, but am struggling to find that silver lining.

I really don't know where to start. It happened so fast. I went golfing with some friends during the weekend and while golfing, my toe started to hurt. The following Monday I went into my doctor's office and they did some blood work. The following day I received a phone call at work telling me to drop everything and get to the emergency room immediately...I was in renal failure. Needless to say, I was in shock.

Since then, I feel like I've become an expert on everything medical dealing with the kidneys. I had no idea what BUN or creatinine meant, let alone the dangers of having too much potassium, phosphorus, etc...add financial burdens on top of that, issues dealing with work, etc...it's too much. I'm only 29 years old, yet I feel like I've aged 40 years in mere weeks.

I guess my question to you all is, how do you deal with the suddenness of finding out you have renal failure? I am really struggling here. I've always been a pretty strong person, but am struggling to find that balance. Any help would greatly appreciated. I look forward to speaking with anyone.

Take care everyone,
Kelley

[hyperlite]

I know exactly what you are going through, that sudden smack in the face of "renal failure"...my best advice to you is to stay busy. The busier you are, the less time you have to sit and think about it...Its not the end of the world, and you'll eventually get used to it. (My grandma used to say: "If you hang a man long enough, he'll get used to it"    But don't think that this is the end of the world, you can still live a pretty normal life and basically do all the things you did before dialysis...so don't worry

[Bajanne]

Welcome to our board.  I came upon it just as I learnt that I had kidney failure last September, and I must say (as I keep on saying!) that this board was a real weapon in my dealing with it.  I had so many questions and I got answers I could use.
However, your strength has to come from inside you.  YOu have to say to yourself that this is not going to beat you.  YOu have made the first important step of familiarizing yourself with those unfamiliar items.  that is how I deal with things - I find out as much as I can.  I even make something unpleasant into something interesting if it can't be pleasant!
But, we are here for you.  Feel free to rant, rave, vent, cuss (with appropriate language of course).
We know where you are from, but we don't know if you are male or female.  Go to your profile and fill that in for us.
By the way, how did you learn about this group?

[knmiller]

Thank you for your kind words.  I appreciate your time in responding to me.  To answer your question, I came across your website while browsing through the NKF site.  The name of the page caught my eye, so decided to check it out.  I'm very glad I did.

Again, thanks for your response.  I look forward to learning more about dialysis and being able to vent from time to time. 

I've already gone through three treatments.  The last one was pretty good.  The first two were  horrible.  I've never cramped like that before in my life.  Does that always happen, or will it subside over time?  If not, I don't know what I'm going to do.

I have an appointment for next week in regards to speaking with a vascular surgeon.  I am planning on doing the fistula/graft in the arm.  Might anyone tell me what I shoul expect?  I'm really out in left field with all of this to be honest.  Too much, too soon.

Thanks again for your help.

Kelley

[goofynina]

Hi Kelley and welcome aboard the best website regarding this matter.  With all of the active members here, you will be sure to find the answers to any questions you may have,  all you have to do is ask.  We all know the reality of that initial shock of being told we have renal failure (well, pretty much most of us do) but i wont forget when one nurse simply told me,  as i lay crying in self pity,  "This is your LUCKY DAY"  she said,  "out of all the organs you can have fail,  you got the only one that has a remedy to help you live....  I didnt find it very amusing at the time but it stuck in my head, and after months and months of thinking about it,  I GOT IT,  and you know what,  IT IS SOOOO TRUE....  I am not speaking for others when i say this, but I am very greatful for dialysis,  it is keeping me alive,  yes,  it is true,  although i may not like it,  i will definetly take it over death anyday....  

[goofynina]

hello again,  it's just meeee, goofynina,     Did you think all of your options through,  meaning Hemo, Pd, and so forth,  it sounds like you are pretty active and you might like the freedom PD gives you a little more.  If you have any questions about it,  dont forget,  all ya gotsta do is ask, k,   we are all here for ya buddy...

[knmiller]

Hi "goofynina"

Thanks for your response.  That's a really great way of looking at things. I'm going to have to remember that quote.  Thank you so much!

I'm overwhelmed at the response thus far on this website.  I just joined hours ago and already I feel a bit better.  People are truly amazing. 

[goofynina]

Your welcome    Look forward to hearing more from you,  just hang in there ok,  and remember we are here for you,,,  didnt i tell ya this website was awesome, lol,   

[knmiller]

Yeah, it was a tough decision.  They sat me down and had me watch three videos and basically said "choose."  The periodental? sp? (PD) scared me to be honest.  I decided that at first, I would go with hemo because I was afraid of infection, etc.  If hemo gets to be too much, they said I could change to PD...  would that be difficult?

[Bajanne]

I'm overwhelmed at the response thus far on this website.  I just joined hours ago and already I feel a bit better.  People are truly amazing. 

And you are yet to meet Epoman, who started this, and Rerun, the Global Moderator.
You have come now that we have over 5600 posts.  So you have quite a job reading some of these posts.  In especially General Discussion and FAQ - Frequently Asked Questions you should find much to help you.  For instance there is a thread about fistulas.  That was a question I had when I knew nothing about it.

[goofynina]

i can almost guarantee you that if you do hemo and then switch to PD, you will probably ask yourself why you didnt just choose PD in the first place,   I did hemo for 3 years,  i got my PD catheter in April and began using it in late may so even though i am fairly new to this PD,  i use the cycler,  I LOVE IT...   I hope to never go back to hemo,  but even if i have to, i am glad i got a chance to do the PD, its great staying at home and i run the cycler at night while i sleep so its not so bad, not so bad at all, while on the cycler  i can even get up and get on my pc or go to the kitchen and sneak something i should not be sneakin,  "put down what shot of tequila"  lol    But i am sure everyone is different and i am just giving you my own personal opinion,   whatever you choose, i just hope you are comfortable.

[Epoman]

Hello everyone,

I tell you, it's been nice to sit down and read some of the comments on this message board. My life has taken a complete 180 in a matter of weeks and my mind is still trying to catch up. I'm on a roller coaster ride, but hopefully, there will be more up's then down's. I keep telling myself that there is a reason for everything, but am struggling to find that silver lining.

I really don't know where to start. It happened so fast. I went golfing with some friends during the weekend and while golfing, my toe started to hurt. The following Monday I went into my doctor's office and they did some blood work. The following day I received a phone call at work telling me to drop everything and get to the emergency room immediately...I was in renal failure. Needless to say, I was in shock.

Since then, I feel like I've become an expert on everything medical dealing with the kidneys. I had no idea what BUN or creatinine meant, let alone the dangers of having too much potassium, phosphorus, etc...add financial burdens on top of that, issues dealing with work, etc...it's too much. I'm only 29 years old, yet I feel like I've aged 40 years in mere weeks.

I guess my question to you all is, how do you deal with the suddenness of finding out you have renal failure? I am really struggling here. I've always been a pretty strong person, but am struggling to find that balance. Any help would greatly appreciated. I look forward to speaking with anyone.

Take care everyone,
Kelley

Hello Kelley,

Welcome to the site, I'm glad you found us. I want to take the time to let you know that you are not alone, everything you are feeling we have gone through, it's an emotional roller coaster. Read MY intro to read how I was 21 and a newlywed, here's a link http://ihatedialysis.com/forum/index.php?topic=25.0 One thing about our site unlike other dialysis message boards is we have very ACTIVE members, meaning our members post here DAILY. This site has only been online for about 11 months but we are growing FAST! We are averaging 1 new member a day now for the last 60+ days. Plus we offer things other sites don't offer, 1st is we ALLOW venting and ranting unlike some other sites that edit or delete posts. 2nd is have a games section where our members can compete against each other to help keep our mind off of kidney failure. Plus we have a new CHAT room which is still in it's infancy but is getting more populated. We are a site FOR patients BY patients without any corporation telling us what to do or censoring us in anyway. If you want to talk bad about a dialysis company or supplier feel free. But anyway not to overpower you with information on your first day but take a look around, use the search feature and don't forget to look around our HOME page and play "Kidney Kickups". Also remember you can ask ANY question you want here, also we have a great off-topic section where you can ask other questions not related to dialysis. Again WELCOME!

- Epoman
Owner/Admin

[Rerun]

Hi Kelley and welcome to our site.  There is no "easy" way to get use to dialysis or the idea of it.  You kind of have to try things to see what is best for you.  I too was surprised to find out I had kidney failure 20 years ago.  And, I too was scared of CAPD, but ended up going to it and really liked it compared to Hemo.  I've now had too many abdominal surgeries for it to work, but if I could be on it I would. 

This site must also be overwhelming with all the posts.  Maybe try the chat room if you want answers and dialogue.

[Sluff]

Welcome Kelley.

[RichnStacy]

Kelley, welcome to the I hate Dialysis family.  We have all been where you are right now, dealing with the news that we had renal failure.  It is scary, but you have a family here for you to help in any way possible. 

I am sure you are overwhelmed right now with all of this so take your time, read through some posts, write down your questions and then come back and we will help you anyway we can.  Again, welcome to the family my friend

[knmiller]

Hello everyone and thanks for responding to my post.  I appreciate your time in answering some of my questions and letting me know things will be ok.

I'm feeling a lot better about things from reading through the many posts on here.  I still have lots of questions, but will hopefully have some answers very soon as I have a meetng scheduled for this Thursday with both the vascular surgeon regarding my fistua, as well as the transplant specialist.  I'm looking forward to getting those answers and moving forward.

Thanks again for your help everyone.  Have a great day.

Kelley

[anja]

Welcome knmiller,  Glad you came to this site, it has been a vast wealth of knowledge for me also.  I have been on peritoneal dialysis for a year this month and have not regretted my decision one bit!  I did my research on here and learned all I could and when I had my neph. visit I told him that I preferred to try PD over hemo.  He was not crazy about it but said I could try. I have had several abdominal surgeries and had heard that it may keep me from filtering well.  That has not been the case, my labs are wonderful and I only had infection when the catheter was placed, none since.  My dad is on hemo and has many issues, such as severely fluctuating blood pressure, an unwell feeling after hemo., passing out on the machine, terrible cramping, to name a few...  I did not want to follow in his footsteps and have been thankful every day for the PD opportunity !!!  Someday, I, too may need to go to hemo,  but I hope that day is far, far in the future!  Think hard and long on your decision, you can always change your mind down the road to hemo. and I believe you will be happier with the less restrictive diet, fluids, and freedom to set your own schedule.  Please ask more questions if necessary, before you commit to hemo.  Wishing you the best,  Anja

[anja]

By the way, I am also a fellow Iowan !   

[kevno]

Welcome to the site knmiller,

Was on haemo from 1977. I first did CAPD for nearly 1 Year in 1980 got transplant end of that year. Went back on CAPD 1988 was on it until 2000, now been on Heamo eversince. PD is OK, felt 100% better than on haemo, but not for long term, as I found out. I ended up with encapsulating peritoneal sclerosis (EPS) You need to get all the facts and unfortunately the decision is yours to which dialysis you go on. Really only two HAEMO/PERITONEAL. Both have there pros and cons.

Kevno

[MelissaJean]

Kelley,
I am going through a similar situation, and feeling very overwhelmed.  Two months ago, I was at a work retreat and was throwing up.  I thought it was a side affect from getting my wisdom teeth removed.  The next Monday I went to the doctor for a regular check up and the next thing I knew was admitted to the hospital with Renal Failure.  On top of all this, my fiancee and I broke up and I will start my first job, my dream job, in August.  I am scared dialysis will interfer.  Anyway, to cope I have watched the first season of the TV show, Lost (their situation is so much worse than mine), go on a lot of hikes enjoying nature, listen to a lot of music, and cry.  I am also reading about suffering from a Buddhist point of view, praying, and reading the Bible.  I am not sure how well I am coping, but I do have those rare moments I feel extremely happy.  Hope this helps.
Melissa

[angieskidney]

I just want to make a short comment here in regards to renal failure effects dream jobs. I worked 9 long years toward a promotion and I was finally up for it. Then I lost my kidney (in my case it was a transplant but still it was 11 years that I had it so it sure felt like a permanent one even though they never are) and I had to give up the promotion, the job, everything! I had to even claim bankruptcy! Not to scare either of you but you must realize one important thing from the get go:

Health is Wealth! Not the other way around! A high school teacher was the one who put that into my head! Good luck!

[jdat]

I feel for you and the turnaround your life might have to take because of this.

But try to keep plowing through. There are ways!

Be strong! 

[deej]

Hi Knmiller from Iowa. I also know what it was like to be suddenly told your have kidney failure. It really sucks!    Try to keep busy and it helps ease the shock. Shortly you will figure out all the new terms and the situation won´t be as scary.  Good Luck! You came to the right place.

[Mom3]

Welcome! One of the things I have found helpful about this site as a PKD mom of a 27yr old hemo pt is the fact that he really is not alone. Many younger folks are struggling (and have struggled) with the challenges! When I go to the clinic and see the many many folks 50 and up...
But just the reminders that he is not alone are helpful! And the information you can glean here, information from real life experience has been invaluable.

I have no doubt you'll meet these renal challenges heroically!

Mom 3

[knmiller]

Hey Melissa,

Thanks for your reply.  I'm sorry to hear about you having to go through a similar situation.  It's true what they say, it definitely makes you into a stronger person.  I have my up's and down's, but lately, more up's which is good.  I lean on my friends quite a bit and enjoy being outdoors as well.  I find just being outside puts a smile on my face, so it's pretty good medicine at this point.  I also enjoy reading...that's about the only thing I can do during treatments.  I think I've read close to 20 books since all this began...I guess that's another positive...  =)

Congrats on your new position.  I hope everything works out well for you.  I was very concerned about work when all this began.    They've been outstanding through all of this, so am very lucky.  I know things will go well for you as well.

Again, I appreciate you taking the time to reply to my post...strength in numbers I guess.  My friends are great and all, but speaking with someone who is going through the same thing as I am is completely different. 

It's nice to meet you and remember to keep your chin up... =)  I now go by the mantra that each day is a gift and a smile goes a long way.

Take care and good luck with everything.  I look forward to speaking with you more.

Kelley