Starting dialysis soon... got questions

[donnia]

Well, the time has come...... I will be starting dialysis soon.  My doctor has kinda left it up to me as to when I will start... and I have not been ready.  Honestly, I am not ready now but my body is.  I have felt awful for the last week.  My function is down to 9% and I can sure feel it.  We have been waiting because I have 2 people being tested and we were hoping that would come through before I needed to start, but I wasn't so lucky. 

Anyways... I had a fistula done in March, but it quickly clotted    My doctor doesn't really want to try another fistula in my dominant arm if we don't have to.  We have talked about doing a graft in my lower left arm.  I think we are going to start off with a cath tho.  I know many of you have experience with the cath.  I need info... all the info you can give me.  Pro's Con's ....etc....

I thank God every day that you guys are here to talk to.  Some things you just cant talk to anyone else about!

[MyssAnne]

Oh honey. First of all. BE COMFORTABLE! Plan ahead, bring a blanket/pillow/books/dvd player, whatever. Bring a bottle of water/hard candies. Others will tell you about the treatment itself, and what to expect, I only had to do it for two weeks this Jan, so I am not an expert there!  ASK QUESTIONS!!!!

[Rerun]

Tell them to get their ASS in gear and get you the kidney.  You have TWO possible donors?  What is the hold up!  Oh, yeah you probably have insurance so they are going to do ALL the possible surgeries and then transplant you.

You get on the phone and get some answers NOW!  You should not have to wait for test results!  You had your fistula put in when?  MARCH??

Come on!     

[donnia]

Yeah, I have 2 people who want to be tested.  One filled out the paperwork and sent it in 3 weeks ago.  I swear these people drag their feet!!!  She and I have not  heard one thing back from Baylor.  I am going to call Baylor on Monday, and I'm gonna be ready to throw down.  These freaking people do not understand that they hold our lives in their hands!!!!! 

[okarol]

Call and ask what the time line is from the time the donor submits paperwork until a blood test is done. Ask what you need to bring your file current. If they are missing something, get it and fax it. Be sure your dental and gynecological stuff is up to date, and your vaccinations. If you have a living donor you should be able to get through this process but don't let up! Good luck! 

[Sluff]

Good Luck Donnia I hope you get answers quick. 

[boxman55]

as far as the catheter, using that is painless but you have to be careful so it doesn't get infected. No swimming and taking a shower, requires you not to aim the water on the cath. Depending on were they put it it can effect what you ware also. You don't want to relay on the cathheter for your long term access so I would continue to discuss other options...Boxman

[jbeany]

I wrote about my first day on hemo - here at http://ihatedialysis.com/forum/index.php?topic=2004.0

If you can, arrange a visit to the clinic before your first appoinment.  Ask about their rules on cell phones, laptops, internet access, and snack policy.  Prepared to be even sicker for the first couple of weeks.  None of the docs ever think to tell anyone that it is completely miserable at the beginning, but gets better as they get your dry weight figured.  Arrange to have someone drive you for at least the first week or two.  All you are going to want to do after is crawl into bed and sleep.  I was cold all the time, and my arm drove me crazy without heat on it.  I made a rice bag that heated up in the microwave.  It kept my arm from hurting the whole time I was in the chair.

Don't wait too long to start, especially if you are already feeling bad - it will just make the first few weeks even harder to deal with.

Good Luck!

[donnia]

Thank y'all for the help.  I know I will take a blanket with me:)  Thanks jbeany, I'm going to check out your post now.

Does anyone know how the cath surgery goes.  Is it a day surgery?  Recovery pretty easy?

[kitkatz]

Catheter placement is an out patient procedure done at the bedside.  Hurts like hell but is over quickly.

[Adam_W]

When I had my first catheter done (I had two) it was ABSOLUTE HELL. The procedure itself was fine (God bless the man who invented sedatives), but it hurt so bad for the next several days, I could not even move my right arm. I must say though, I don't believe all cath insertions are as bad as mine was. I was already very sick and had been in the hospital for three days when it was put in, and because I was so loaded with toxins when I first started dialysis (one day after the cath was put in), I had to receive dialysis three days in a row just so I wouldn't die. All that put my body through so much stress that it made the catheter hurt so much more. When I had it replaced about three months later, it hurt for the rest of that day, then it was just fine. I now have a graft, and although it's not as good as a fistula, it's so much better than a cath. If your arteries and veins can take a graft, that would be the best access if you can't get a working fistula (I had one put in my left forearm, but it was probably clotted before I even left the hospital). Good luck with starting dialysis. It's a tough time but we're here for you  .

Adam

[donnia]

Yes, I think we will probably put a graft in sooner or later.  I think my doctor is just hoping we will get a transplant before they have to put the graft in.  I am kinda glad they are doing the cath first.  I am scared to death of the pain from the needles. 

Why does the procedure hurt so bad?  Don't they knock you out, or give you enough drugs to stop the pain.... gosh I am such a wuss!

Edit:  Also, I have heard about people "unblocking" their fistula.... is that even possible?

[Laurie]

When I had my cath put in, I was sedated. I really didn't have any pain afterwards, it was just a little sore, but not painful.
I had mine in for 9 months and never had any infections. I had a fistula done, but it never worked. I loved having the catheter because it took no time for them to hook me up and take me off. I also liked the fact that an RN had to do it and the techs could not. I hope this helps ease your fears a little bit.

Good Luck Donnia, I hope everything goes smoothly 

[jbeany]

The unblocking is called a fistulagram.  The grafts and fistulas can sometimes begin to narrow - the tissue around growing together to cause a blockage.  They go in with a balloon just like they do for the heart, and expand the narrowing.  If it's really bad, they can also insert a stent.  That's another outpatient procedure.  They aren't thrilling, but not too bad.  It beats having the fistula close down and having a new one put in.