A horrible beginning- devastated

[kickingandscreaming]

I am devastated and so depressed.  I have been at very low kidney function for years, but stable and with no symptoms except anemia.  Back in April, I had a PD catheter installed so I would be prepared for the inevitable.  It was not installed to be used immediately, but is a "tunneled" or "buried" PD cath where the part that wiill be the tip is tunneled just under the skin and can stay there indefinitely.  A couple of weeks ago I developed what turned out to be pneumonia and was sick in bed for nearly 2 weeks.  During that time I noticed that my legs and feet were swelling up.  I knew that was it and that my kidneys were gone.  I saw my neph shortly after that and she confirmed that my numbers were bad.

I had the catheter "unburied"and prepared, kicking and screaming, to begin my PD training (CAPD).  The catheter isn't working right. It takes almost an hour to fill and to drain-- about twice as long (or more) than it should.  I had several training sessions and then we gave up and decided the catheter needed work.  Of course it's Thanksgiving week and the surgeon isn't available for a while.  Meanwhiie I continued to deteriorate until my neph hospitalized me for both the pneumonia, extreme anemia, swelling and uremia.  She had me get a temp hemo catheter installed in my neck and to start hemo in the hospital.

I had 2 hemo sessions (mild, 2 hour sessions) in the hospital and now I am home and freaking out.  I have lost control of my life.  Now I have to go to the in-center hemo clinic 3 times/week while we figure out what needs to happen to the PD catheter.  I never intended to do hemo and had decided that  if it was my only choice I would rather die.  And if we can figure out the catheter then I have to start training all over be away from home and my dog for weeks on end.  I live alone except for my dog and I just feel so awful about everything.

Even after several EPOs and a transfusion, I still can't walk without running out of breath.  I'm really scared.

[Vt Big Rig]

Hang in there.

You have bee n having issues that make it harder but you will get through this.

I wish you the best of luck.

 

[nursey66]

So sorry you are going through all this awful stuff ! It's bad enough to have to start dialysis, much less having so many complications.

[PrimeTimer]

Sorry for what you're going through. Fear and anxiety are not our friends but...you will have many friends on this site pulling for you. People here understand what you are going through. Hopefully once they get some of the excess fluid off you will literally be able to breath easier. My husband struggles if he puts on just a little more than he should but once it's under control, he is like a new person. Hope you have someone that can look after your dog, if not, maybe contact a shelter and ask if they know of any foster programs, don't be afraid to let them know about your situation. 

Wanted to add that if your clinic has one, ask for a meeting with their Social Worker because this would be right up their alley.

[cassandra]

I'm sorry to hear about your situation Kickingandscreaming, but like PT says, you will feel better after the excess fluid is gone, and your toxins down in your blood. Is it poss to find care for your dog?
And there's no reason for your PD cath to be sorted quite soon so you can start PD.

Wishing you a speedy recovery, and positive vibes, love, and luck, Cas

[kristina]

I am so sorry to read what you are going through and I am also sorry that you are not overly keen to use a dialysis-centre,
but they are very helpful to start the dialysis-process going and it is reassuring to know,
that the dialysis-team observes your well-being very closely right now and they are also very dependably there for you ...
I do hope your health and well-being improve very soon
and I send you my best wishes and good luck from Kristina. 

[okarol]

It's a huge adjustment at first. My sister started dialysis last month and she was a wreck, but now she's doing better and her energy is better.
Best wishes for a good solution for your PD cath, and that you'll be doing better soon. 

[kickingandscreaming]

Thank you all for your good wishes.  My friends are pulling for me too, but they really don't know what I'm going through.  I know that you all do. I just wish I could be on the other side of this crisis and could settle into "mere" drudgery of having to do all this to live. 

My dog will be all right.  I have hired a dog walker for her on the days I will be gone.  I'm just so tied into her as she is the full extent of my family and my home life, and she's 14 and adjustments are harder to make when you're old (I'm 74 as of yesterday, so I know).  And she's a very sensitive dog.  Since last Tuesday and through tomorrow she is staying with a friend.  But I can't keep asking for that, and my finances are very limited now.  It's just another worry that is a BIG one for me.

And now I have a neck catheter and a PD catheter.  So I can't bathe nor shower nor wash my hair.  I feel disgusting.

[PrimeTimer]

  Happy (belated) Birthday, kickingandscreaming! Sorry about the little "adornment" you received for your birthday (neck cath). Your willpower is to be admired...keep on keeping on!

As for bathing and showering, you might look under the "General Discussion" section. There's a couple threads there that might be helpful.
See "Showering With A Chest Catheter" posted by hillary on September 21, 2013 and "Safely Shower With Your Hemodialysis Catheter With Minimal Risk Of Infection".

Some ideas include:
-buying a "korshield" from korshield.com
-using Glad Press and Seal,
-turning a plastic garbage upside down and cutting holes in it just big enough for your head and arms and wearing it like a poncho and using a hand-held shower (those are easy to install but be careful of not slipping and falling in the shower while installing it or perhaps have a trusted friend help you with that).
-you might also look at a drug store or ask your nurse for press on island dressings that have sticky edges that you stick on around your catheter and then peel off and are waterproof.
-as for washing your hair...might not be practical but maybe a once a week wash at a beauty parlor ??

Good luck. Glad you have someone caring for your dog right now, you'll have to give her lots of hugs and treats when she gets home, which I'm sure will cheer you both up. You have a beautiful dog! She looks like a real "cuddler"! Sometimes our pets make for the best "nurse" we can ever have!   

[kickingandscreaming]

Thank you for the suggestions.  I DO have a beautiful dog-- inside and out.  She's truly an angel. And my best healer.

[Rerun]

Being on HD you can adjust to this new life and THEN bring it home with the capd.  You furbaby needs you.

Take care.         

[Hootie]

Trust all of us on this point....It gets easier over time. The worst part of getting started is the fear and anxiety....Once you get comfortable with what you are doing and settled in on the process, you will feel much better about your situation. That is regardless of which method you end up choosing.

[Charlie B53]

It's been a L O N G time since I have been in school, unless you want to count Grandparents Day, but there is something like SEVEN levels of emotion when dealing with a life-changing event.  Don't quote me as I'm sure I won't get them all, or even in the correct order.  Denial, Depression, Defense(?), Anger, a couple more until finally Acceptance, and Learning to Cope.

You may feel a lot like the Lone Ranger as no one around you has dealt with this and haven't a clue what is going on with your body and within your head.

Here at IHD we ALL have been there, done that, and survive.  Some easier than others. But all have gone through all those emotional periods.  This is the place to share and learn from each other, to help begin that Acceptance, and begin Learning to Cope with the affliction of Renal disease.

Come here often.  Read what others have posted.  Post your own experiences, problems, possible solutions, however you feel appropriate.  Ask questions freely,  We love to share what we have learned.

Take Care,

Charlie B

[kitkatz]

Somedays it is all I can do but take it one second at a time.  I know it sounds silly, but each second that ticks by and I find I am still okay, helps to keep me going.
I have had days when it was so bad emotionally and physically I thought I was going to just go up in flames or disintegrate right in front of everyone.
It has not happened yet, so...must be doing something right.

Sometimes when I cannot take anymore especially at dialysis in the chair, I will close my eyes and count backwards from 1000.  It helps to calm the brain down and gives it a focus. 
Or recite the alphabet backwards, or sing a silly song in your head.  Sherry Lewis'  "This is the song that never ends"  works for me.  It is so silly and I sing it in my head.

So seriously,my best advice:  Take it one second, one minute, one particle of time as it comes.  Soon you will find you have made it through days of lousy stuff and you actually feel better.

[Whamo]

   I felt like the guy getting the bat on the head for a long time.  I've found following doctor's orders and thinking about doing things correctly is the best thing I can do to adapt to this therapy. 
Life gets better, but bad days still strike when you least expect them. 

[bjp81757]

Just switched from Hemo to PD and like you having problems. Have faith in the Home Dialysis nurse, these people are wonderful, caring, and have your best interest at heart. They know you much better that the Neph. I was miserable when I started Hemo. Blood pressure bounced up and down during treatment. I would get sick and spend the rest of the day throwing up. Couldn't eat on treatment days. The Techs at my clinic worked the tails off trying to make things better. Things eventually got a little better and I learned how to tolerate it. One day I discovered the music of the Avett Brothers. I just put my earphones in and listened for hours. It helped me find peace and come to terms with fact that this is my reality. I need dialysis to stay alive, but I don't need dialysis to live. You will find your way. You will come to realize that you are not defined by your disease. The problems will pass or you will find a way to deal with them. Then one day you will realize you are still who you were, that dialysis is just apart of you.

[Simon Dog]

Or recite the alphabet backwards

Good practice in case you are ever stopped for DUI.

[bjp81757]

Just wanted to find out how your doing. Have things gotten better? I am on Liberty Cycler and things are going fine. Hope your situation has improved. Your struggles are my struggles. I keeping waiting for them to develope that magic pill that will make this all go away. Until they do I will continue to take life one wonderful day at a time. Having my daughter home from college for the holidays has been a welcome relief. She is my touchstone. If she is alright then I am too.

[kickingandscreaming]

Just wanted to find out how your doing. Have things gotten better? I am on Liberty Cycler and things are going fine. Hope your situation has improved. Your struggles are my struggles. I keeping waiting for them to develope that magic pill that will make this all go away. Until they do I will continue to take life one wonderful day at a time. Having my daughter home from college for the holidays has been a welcome relief. She is my touchstone. If she is alright then I am too.

Thank you so much for caring.  Um...I'm not sure it things have gotten better, but they do keep changing. Since my catheter wasn't working, I have been doing in-center D. Feeling pretty wrung out from today's treatment.  And that's how it is. But I can honestly say that between treatments I feel pretty normal, so I guess things are going OK.  My dog (like your daughter, the one who keeps me going) has been having a rough time.  Since I'm a freelance Web designer, I work at home and she's used to having me there a LOT.  So she's grieving and spends a lot of the days howling.  That really concerns me.  I am hoping my days in center are numbered.  I'm now waiting to begin PD training if we can ever schedule it. I still have a fair amount of apprehension about it as I have had some issues with fill pain (http://ihatedialysis.com/forum/index.php?topic=32902.0) during a catheter flush.  So I'm hoping that was just a one off experience.  But only time will tell.

I'm looking for the same pill.  Haven't see hide nor hair of any sign of it though.  Take good care.