So sick of this!

[KatieV]

Once again, my plans have been ruined by kidney disease and I am really mad, depressed, sad, fuming, and plenty of tears!

My parents have thrown a New Year's Eve party for the last couple years.  Nothing too big or fancy, mostly long-time family friends (who I haven't seen in 2 yrs); everyone brings an app or dessert, talk & play card games, etc.  I'm living with my parents again (for help with NxStage) and was greatly looking forward to the party.  I spent Saturday morning and afternoon helping clean the house and prepare food.  As the afternoon progressed, my neck, shoulder, and chest started hurting and continued to get worse.  Instead of the party, I spent the night in the ER with another suspected tunnel infection!  The ER took blood cultures (watched the IV nurse like a hawk while she drew off my catheter - she twice started to remove a syringe without closing the clamp!  Yikes!) and gave me a big dose of Vancomycin.  They then sent me home with a prescription for Cephalexin.  I got home after midnight and they were just finishing cleaning up.  I had frozen oranges and cranberries into ginger ale to keep the punch cold and I didn't even get to see how pretty it looked - it had thawed!

I know it's stupid to be so upset about missing it, especially when I've had tunnel infections go from zero to 103 degrees in no time.  But it's not just this party - kidney disease ruined my honeymoon (2 days in a PA hospital with sepsis), too sick to attend multiple extended family gatherings, haven't had a vacation in years because all my PTO is used up with medical issues (early each year), and I missed my favorite BIL's wedding this summer!

I'm scheduled for fistula revision next Monday and am terrified about the procedure, the recovery, and then using it when healed.  I KNOW the catheter is risky - I just finished 6 weeks of Cefazolin from my last infection - but I really don't know if I can cannulate myself.  I'm stressing over that, wondering if I should bag NxStage and go back in-center (which I don't do well on).  I don't know if I can ask my husband to cannulate.  He's done it before and it was incredibly stressful and hard on him.

And to top everything off: last week I learned my nephrologist is moving across the country!  He is a wonderful doctor, really listens to what I have to say, realizes that I know my body very well, and just plain cares about me as a patient.  They'll be assigning a new doctor to the NxStage program, but I have a hard time trusting doctors.  I have been hurt by multiple doctors through their negligence or mistakes.

If you've gotten to the end of this, good for you!  I just needed an understanding ear to rant to.

[kickingandscreaming]

I'm so sorry, KatieV.  There are times in life where stuff just accumulates and hits a boiling point.  Happens to all of us.  This too shall pass.  I'm sure, when you collect yourself, you will be up for the next challenge on your path.  In the meantime, Happy New Year (with of without a party).  This disease sucks.  You'll get no argument from me on that one.

[nursey66]

Yes, I get it !  Lots of loss and missed out times !  My husband has ESRD and we go through it too! Glad you are able to let out your frustration here !

[Michael Murphy]

Medical problems are a pain in the butt.  But the fistula surgery is not so bad I had mine created about 6 years ago and it has never given me any problems.  Every year I go in and have the fistula sonagramed.  I do this just to be on the safe side. 

[justagirl2325]

"I don't know if I can ask my husband to cannulate.  He's done it before and it was incredibly stressful and hard on him."

As a wife and 'cannulater' for my husband, it is very stressful.  I had such a hard time.  We are 2.5 years into this home hemo and it's only the last 6 months or so that I feel comfortable.  I hope you and he can get there.  It is helpful to be able to schedule your own dialysis and miss less events.

[Angiepkd]

Wow!  You sure have been through a lot. I recently lost my transplant and am doing in-center hemo with a catheter until I can schedule PD catheter placement. I did NxStage home hemo before the transplant, but have used up all the space in my left arm. I am not sure I can stick myself left handed, and my right arm isn't looking too good for another fistula attempt. I have missed a lot these last few months, too. The worst was Thanksgiving. If my attempt at PD doesn't go well, I am going to request a Hero graft. It works like a normal access but is really a catheter with the graft attached. They just extend the catheter tubing to your arm, but keep it under the skin. It supposedly gives you a good access without the high risk of infection, since the tubing is not exposed. I will still have to figure out if I can self cannulate, but sticking a graft is always a little easier for me. It also reduces your trips to the access center.  If your surgery doesn't work out the way you hoped, maybe you could look into that.  Hang in there!  Kidney disease seems to ruin everything sometimes. Sounds like you have a great husband to support you, and that helps!

[Rerun]

Kidney issues suck.  I have missed plenty of things because I have dialysis and can't go.  I've also missed (things I didn't want to go to) because of dialysis.     You can use it both ways.   It just sucks when you really want to go.

I'm sorry you missed it.  Happy New Year anyway.  Hope your fistula surgery goes well.  It is our lifeline.

 

[Charlie B53]

Yes Katie, I read it all.  I am so glad that we have this place to vent.  You gotta get the pressure off your mind somehow.  Ranting at the Husband isn't the best idea, even if he is a very understanding sort of guy, I'm sure it wears on him also.

Glad to be here for you.  I am using a cath and waiting my appointment for vein mapping.  I am paranoid of needles so this will be an experience.   The mapping will be a piece of cake.  Letting the Dr cut my arm open?  Well, that will be the beginning of a whole new chapter in this book.

Very easily one day you will be reading when I let loose.

I seriously Hope the New Year treats you much kinder.

Take Care,

Charlie B53





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