I'm scared and confused

[Tinah1968]

Not sure if this is considered a rant or just getting things off my chest. 
I did lab work last week and yesterday i get a call from the nurse that my creatnine is bad (5.5) So  they tell me to come get a shot. The shot was actually for my Iron which was 9.2 Okay I am not sure what the iron was supposed to be. the last time i went it was 15 so i am confused.      Well the nurse calls me again today and asks me to come in at 2:00 the dr. wants to talk to me and give me another shot. I assumed i was going for a shot and he asks if my sister is with me? No i am alone i was at work. He said I think we need to registar you and get you in the hospital to start Dialysis if we can not get you in at the Dialysis Center. So i freaked out started crying.(why didn't they tell me to bring someone a family member a friend anyone??) For 2 months they said i was going to start and i had not started I thought i was beating the odds. I was at the dr's office for 2 1/2 hours waiting for a decision. The Dialysis center called and they are taking me in Friday at 2:00. I'm very scared but I know in my heart that it is the only way doesn't mean that the what if's are not lurking around from every corner. But I guess Dialysis here i come..

[kitkatz]

Oh Babe! What a way to get the news.  I am sorry it has happened so quick for you.  Just remember ask questions and do not let them do anything they have not explained fully to you. Good luck and have some chocolate! 

[paris]

Oh Tinah, I wish you had someone with you.  I am sorry.     I think we all are full of "what if's" in this whole kidney journey.  We will be here for you and I'll be saying lots of prayers on Friday.   

[Sunny]

You are starting a new journey in life starting dialysis, but everything will work out fine. Maybe you can have someone with you next time so you won't feel so overwhelmed. Hang in there, ask questions to ease your worries. We are here for you.

[willowtreewren]

Tinah, Tinah,
We are here for you. Of course you are scared. But look at all the positive, wonderful people here who have gone through this and are pulling for you.

Kitkatz is right. Keep asking until you KNOW that you understand everything they are telling you. If something doesn't make sense, tell them to slow down.

Keeping you right up at the top of my thoughts, right along with Chris.

 

Aleta

[G-Ma]

I'm so sorry Tinah...that unfortunately is how many of us heard we had to start NOW.  You will be ok, just lean on us.   


 

[monrein]

I'm so sorry that they weren't more sensitive to how this would feel to you Tinah and the whole starting thing is always hard.  Know however that we are here to go through it with you and will be always wishing for you to have the easiest time possible each step of the way.  If there are bumps in the road we'll be there for those too with suggestions, advice, support and a list of the crucial questions to ask.   I will be thinking of you all day Friday and waiting to hear how it went.   

[Hanify]

Sorry you had to get that news on your own.  Very thoughtless of them.  However, just think of how much better you'll start feeling once you get going with the dialysis.  We're all thinking of you, and sending positive thoughts your way.  Once you get started, it's not so scary.  Honest.

[staceyand joe92]

I found out the same way and it was awful.  I'm sorry this happened to you.  Dialysis can be stressful in the beginning. I spent the first few dialysis treatments in tears , but it gets better and you feel better and you realize that it isn't that bad.  Hang in there and keep a positive outlook and you'll be fine. 

[dwcrawford]

Tinah, trust me... it isn't nearly so bad as I had imagined.  Mainly, it is just a hassle.  Since you already have your fistala there will be little or no pain.  The need might hurt a little but get a really good tech or nurse and it will be almost painless.  It is boring.  I just made friends with the staff and that helps a lot.  If you treat them with respect you will get anything you need.  Stay warm, get comfortable and think positive thoughts.  I made so many plans as to what to do and really all i needed was my ipod.  I promise.  Not to worry.  The trip down, sitting there four hours is not  much fun.  It's kind of like attending a very long seminar or a long winded sermon where you day dream a lot.  And with your cooking abilities you will come up with some terrific recipes.  Be brave my  friend.

[David13]

Tinah, I am very sorry about how this situation was handled by your health care team.  It does not appear that they do a very good job of educating their patients.

Fortunately, you have IHD!  We are all here for you and you have so many examples of people who have been in similar situations and are doing well.  You will do well, too!

Ask a lot of questions and don't let them do anything unless they explain it to you and you understand why they are doing it.  Bring your blanket and something to do while you are there. 

[dwcrawford]

Tinah, I send you a message with my phone number.  If you want to talk about it tonight, feel free to call.  Of course I didn't want to put my number in here because there are some real weirdos on here (you know who I mean --David13).  Just joking David.

Really, really... I promise you its not as bad as you expect.  Four weeks (almost) later and I even have a new group of friends from the center.

[twirl]

I think it is hard to stay in the chair for 4 hours but you get used to it -
ask me about the cream I use on my arm -
you will be alright -
it is not fun but it is life -
 and you are young - you have many years left
I know you are afraid -
that is normal -
but the fear will pass -
it is not an easy life but it is life
twirl

[dwcrawford]

I need to know about the cream.  I start with needles in four more weeks.  Is it prescription?  Is it expensive?  Will insurance cover it?

[willowtreewren]

I need to know about the cream.  I start with needles in four more weeks.  Is it prescription?  Is it expensive?  Will insurance cover it?

Yes, yes, and yes. At least our insurance covers it. But many folks don't use it. And when we forget to put it on in time (an hour before needed), we go ahead with the sticks and they don't bother my husband too much.

Aleta

[dwcrawford]

If it hurts less, I want it.  So does Tinah... right?

[twirl]

    I am one of the weird ones and I am proud of it ---
      crawford -- so are you    and that is why you are so much fun

cream -  Lidocaine and Prilocaine Cream 2.5%/2.5%
it is by prescription -- $30.00 on my insurance for two tubes -- one tube is also $30.00 so my perscription is written for 60 grams    ( one tube is 30 grams  )  and it saves me money
some patients do not get it b/c of the cost -- get it anyway
do not rub in it
smooth in on about and hour and a half before your chair time -
wrap it in Saran wrap - tape it to keep it secure
the techs will unwrap you and wash it off
one tube will last you a long time

the little needle shots they give at dialysis burns and stings me -
they spray perscription you can get also stings-
the techs will spray it on you and it freezes the skin

I rarely feel the needles and usually that is on a new spot to be stuck

it does help
and you are not a sissy or whatever
I have hear grown men dialysis patients yell in pain with needles

take care
weirdo --


being called weird is a compliment

about the sticks
my nep doc does not like them b/c that is 4 needles a visit instead of two

[twirl]

oh and once you get used to the cream -
you will not leave home without it

I used to put in on during one of my classes at school when I was still teaching

[dwcrawford]

I readily admit to being a wuz when it comes to pain and blood (expecially my blood).  My tech assured me they weren't drinking the tubes and selling the blood.

I been called a lot worse that weirdo.  Actually I don't mind it at all.

I just wish Tinah wasn't so scared. 

[willowtreewren]

Four weeks from now Tinah will be giving you a run for your money on giving pep talks to others, Dan.

Tinah, you go girl!

[dwcrawford]

I know....she'll be fine...

[Lucinda]

Hey Gorgeous... I am in to my 10th week on dialysis.  The first day was not nearly as bad as I was anticipating.  Your mind is probably doing strange things to you right now but I doubt it will be as traumatic to you on the day as you might be expecting.  I am at home now doing it at home and sometimes I think it must be really nice to sit there and have someone else do it for you and set up the machine and clean it down.  My advice is that you don't even look at the needles on the first day and gradually you will want to take a bit more interest in what they are doing.  Don't stress yourself out.  One lady at the centre that I did my training at wore a black eye mask for the first three weeks.  Now she is absolutely fine.  Just remember, your mind is playing tricks on you and the reality is not going to be nearly as daunting as you are probably thinking.  All the best and lots of love, Cindy. xx

[petey]

Tinah,
When I think back to the four days' warning we had that Marvin would have to start dialysis, I remember very well what you're feeling now.  We were scared -- no terrified.  We didn't know what to expect.  We were clueless and felt like we were being sucked into a dark, dark hole.  But, then we didn't have IHD back then (1995), so you are so much more informed.

The other posters here are right -- the thought of dialysis is scary, but once to go one time, the scary part eases tremendously.  Also, all the others are right again -- watch everything, question everything, ask every question you have (however silly you may be thinking it is).  You can NEVER know too much about what the nurses/techs are doing during YOUR treatments on YOUR body.  Knowledge truly is power!  Remember that.

dwcrawford is right -- Be brave.  Hold your chin up.  Take a deep breath.  Put one foot in front of the other.  Take one day (one hour, one minute, if you have to break it down more) at the time.  Say to yourself, "If so many other of my friends at IHD can do this, I can, too."

You gotta get the lidocaine cream -- Marvin uses it every treatment.  When he first started, they were using the shots, but he's been on the "cream" for about 12 years now.  We pay a $30 co-pay for four big tubes (it is prescription).  One tube will last Marvin a little over a week (that's five treatments a week).  He puts two big "blobs" on his buttonholes, wraps his arm in Saran Wrap, tapes the end, and leaves it on for 45 minutes to one hour before treatment.  Right before I cannulate, he washes his arm thoroughly to get the cream off.  He won't have a treatment without his cream.

[Tinah1968]

Thank you everyone for the good thoughts been a tough day. just trying to keep my head above water away from bad thoughts. I'm sure after the first day i will be alright i hope so anyway. i'm sure i will have lot's of questions for you guy. When i joined this IHD it helped me see i was not alone. Now i hope it helps me with this as well. Thanks again

[dwcrawford]

Don't let yourself get depressed...  Hey,  I really didn't have to give up anything in the way of food or drink.  May I have to adjust some stuff but all the good stuff is still in reach.  If you can sit through a 4 hour movie, or a 4 hour sermon or a 4 house lecture (or even a trip in the car), you can make it.  I never thought I could be still that long (probably the first time in my life I ever have) so I find people to talk to.  I giggle in the chair a lot and the techs help me readjust from time to time.  Most people sleep, but I can't.

Hey, I was real sleepy the first few days.  Know what I did when I got home and my days off?  I slept.  It was nice.  Hey, people will bring you food.  Keep it even though you are hungry.  Appetite will come back.