Yo from Pennsylvania

[PaDude]

Well I've been looking this board over for several weeks and have finally decided to jump into the deep end of the pool.  Not that easy when I consider I've never been one to join an anonymous group, but this kidney thing has me ready to vent and get some real life answers.  So if I sound stupid or ask something that's been retold a thousand times please excuse me in advance

I was diagnosed with CKD back in 2005 with about 47% of function.  Then I lost my job and medical benefits.  Time marched on and I finally went to work for a large home improvement company which once again gave me medical benefits.  This past March i was able to return to my neph. And was shocked to learn I was at 21% of kidney function and dropping.  Right now my creations is about 16 and I'm going through the steps of transplant evaluation (hoping for a miracle with that).

At the same time I've attended a treatment options at the local ;
Fresenius clinic and have it in my mind to do peritoneal dialysis.  It seems that between that and HD I can better continue working and get the benefits of dialysis.  Any comments on my thought process would be appreciated.

My most compelling issue at present (I have others and will touch them in the future) is when to set up for the surgeon visit and install of the catheter.  My diuretic neph is of the mind that I can go as long as possible and if time becomes short I can have the neck catheter (I don't know what that procedure is called) installed and then add the stomach catheter.  Sounds good but I'm really concerned that I may be waiting to long to get to the best result.  At present I don't have any of The external signs of the disease such as fatigue, nausea, or itching.  My question is when did others take the step and get their catheter installed.  Boy, would i appreciate feedback.

Sorry for droning on but like the sign said - "Color me Curious".

[willowtreewren]

My husband got his access placed when he was at about 15% function. We thought we still had years to go, but in fact, he went from 15 to 10 in about 9 months.

Welcome to IHD! The deep end is not so bad is you go with the flow. 

 

Aleta

[Poppylicious]

I'm afraid I can't answer your question because my Blokey wasn't really aware of his kidney problems until it was too late; he had no choice as to what happened, where and when!

However, here's a big fat  to ihd.com! You'll get the answers that you want here.

 

[kporter85db]

Welcome to IHD PaDude. I grew up in Maryland but my mom grew up in Philly and all her family lived there. I spent most of my new years when I was growing up in South Philly.

I'm not sure why your Nephrologist is suggesting you wait with the possibly of getting a neck catheter but there was no way I was going to take the chance of needing a neck catheter. From what I understand, they are prone to infections and why would you want to subject yourself to ANOTHER procedure. You can get the PD catheter put in and the surgeon will leave it burred just under your skin. When it's time for you to start dialysis, you will go in and the surgeon will make a small incision to expose the catheter and you will be all set.

If you get a neck cath you will have to do in-center dialysis until your PD cath is ready to use. I'm doing everything I can to avoid having to do in-center dialysis. If it was me, I would be calling the surgeon today to schedule the surgery.

Just my 2 cents.

[MooseMom]

PD is a good choice for people who want to keep working, but before you make a final decision, do check out the possibility of doing home hemo with NxStage.

You are lucky enough to have time to create your access, whichever kind you choose, in what looks like will be plenty of time before you need it.  I am not on dialysis yet, but as soon as my egfr went below 20, I started the process to get on the transplant list, and then I got my fistula created (I'm going to do home HD).  That was over a year ago.  There was no way in hell that I was going to get a neck cath.  Those are done on an emergency basis.  That's tubing going in to your heart!  Not for me, thank you very much.  That's the worst kind of access to get, so don't get one unless you absolutely have to.  The risk of infection is quite a bit higher than it is for other types of accesses.  I can't for the life of me understand why your doc is telling you to just wait and get a neck cath and THEN get your access created.  That's just bizarre.

[Ang]

 


as to your compelling issues, be guided by your nephrologist, see which modality works best for
your lifestyle.As poppy said don't leave it too late or you won't get a say in it.
you'll have a good idea when the time comes because you will feel it.

[Dannyboy]

 

[PaDude]

Thanks to all especially kporter85db.  I wasn't aware that the procedure was possible.  Go ahead and guess what I'll be talking with my neph about on the next visit.

[drgirlfriend]

 
Boyfriend was in a similar situation but once his kidney function got to the point the neph was worried about, he had the catheter operation 2 weeks later. We were just then starting to see outward symptoms, so those 2 weeks were an eternity. The surgery was on the 30th and we're hoping to get pd started in a couple weeks. It all seems like a very long time and process, but the neph doesn't seem worried about it. We're just trying to do what's in front of us and trust that we aren't in dire straights.

Please tell me you aren't a Steelers fan..... 

[lmunchkin]

Welcome PaDude. I bet your world is spinning right now with all this "scary" stuff!  But listen and learn from these people cause they have been through it and can really give you the advise you seek.  My husband had no warning whatsoever, and they admitted him and ESRD is what he had, due to diabeties and high BP.
He went to a Fresenius clinic to learn PD.  I can't remember just how long after cath put in stomach that he was able to start, but I don't recall it being very long.  I also do not know why neph is pushing "perm cath".  That is for emergency only, is what I understand.  There are others on here that can tell you better than I about that, but I do know that they do not recommend those for permanent access! Sounds like he wants you to do hemo instead of PD. 
Do discuss this with him/her.  My husband did PD first then later went to hemo.  He now does Nxstage at home!  What ever you do try to get D. at home!  I believe it is the best dialysis you can get because you control your own treatment. 
Do you have anyone to learn this stuff with you?  It never hurts to have a back up in case you can't do it.  In fact, alot of trainers prefer it!
Keep us posted & definately let us know what neph. says!  Ask here of anything and someone will have an answer.  Sorry for the bad news, but it can and will get easier!  Just settle down and take one step at a time!
We are here for you!

GOD BLESS,

lmunchkin   

[tbarrett2533]

 

If I had to do it all over again (and thank god I don't) I would get my fistula (and yes I heard you say that you are going to do PD) the reason I say get the Fistula now is that you need to remember that their is no cure for Kidney Failure only treatment options and although PD is a great option (I am in the transition from HD to PD right now and officially if everything goes good will be doing PD by August 1, 2011) you do not know for sure that you will ever need to stop PD in the event of Peritonitis or anything else.....And do you really want to go in and have your access placed in your neck in a hurry?  I think not...... plus it takes several months for your fistula to mature enough to use..... neck cath = NO shower, Fistula = SHOWER........ just remember that   

One thing I learned about Kidney Failure...  always, ALYWAYs have a plan B because nothing EVER goes as planned!

If you get a minute go check out my post, "step by step PD experience" in the Home dialysis thread and hopefully that will help yousee what you will be facing

Good luck in your dialysis experience!!

any questions that come up.... use all of us as a resource!!! 

[kellyt]

   I was all set to do hemo, but fortunately transplanted before having to start D.  I have the lovely, and large, scar from the fistula surgery, but it just adds to my story.   

[Rerun]

Hi PaDude and welcome to IHD.  You have been given lots of advice here.  So, here I go.....  PD is great, especially in the beginning.  It is easy on you.  Get the surgery scheduled and if the cath can be buried under the skin until you need it then great.  Sit back and drink milk and eat chocolate because that will be the first things they rip out of your hands!!!  LOL

You will do fine.  With dialysis patients Medicare comes on board 3 months after you start dialysis, but I think if you are going to do home dialysis then it starts immediately.  So you have benefits from your work?  That will be primary and Medicare will be secondary so you will be covered.  That is good.   There is more to this, but for now it is all good.  You will get a Social Worker to tell you more, but come here to check with us for the truth.   

Rerun, Moderator      

[looneytunes]

Hi PaDude and welcome!