Question about your first time doing dialysis

[Riverwhispering]

For the people that had a fistula ready to go and were going to do in center dialysis...

Did you go to the center the first time or did you have to go to the hospital for a few days so they could keep a watch on how you're doing.

[HILINE]

mine was done at the Center. they are experienced at this sort of thing

[Traveller1947]

My graft was ready to use when I started dialysis, and although I was very sick and had a very rocky start,  I started in-center.  With hindsight, it probably would have been better to start in the hospital.  I would never have accepted that at the time though.  Interesting question, Riverwhispering: it gave me pause for thought...

[Riverwhispering]

The reason I'm asking this is last time I saw my Neph Doc about 6 weeks ago he said he'd like to have me in the hospital for three days when they do start me on dialysis.  I kinda freaked and said I can't do that cause I can't afford it and i have dogs and cats that need to be taken care of and no one to do that for me. 

I see him tomorrow and am going to talk more about it with him.  I want to know why he even suggested it.  Is there something about me that would be cause for concern?  So much to ask him tomorrow.  He also mentioned to me that I should consider losing this weight so I can maybe have a transplant before I get to old for one and he said it would be my best option.    Why didn't he mention that before?  I've been seeing him for over 6 years now.

See?  I'm stressing again 

[lmunchkin]

Don't stress River, you might be able to wait a little longer before doing D.  I hope so at anyrate!  I can't answer your original question because husband was admitted into hospital and diagnosed with ESRD.  Upon his release (about 2 weeks) he went to see his neph; who inturn sent him to Fres. Med. ctr to learn his options.  We decided on PD.  Never started in a dialysis clinic.

The only thing about starting in a hospital, I quess, would be in case of an emergency.  But the one who will do the dialysis will be a Dialysis Nurse, so Im not understanding why the hospital first.  Since you are eligible to be listed in time, I would suggest PD to start with (if you are not Diabetic).  It is a much gentler form of dialysising and is less likely to hurt what ever kidney function you have left.

Not to be rude Riverwhispering, but you have got to take care of yourself first, cause without you, what good would it be for your dog Or cat?  Get yourself better now, so that you can be there for your CHILDREN. That is exactly what your pets are. They are like family.

lmunchkin
 

[MooseMom]

Oh geez, I've been "preparing" for dialysis for 7 years and have had my fistula ready to go for almost two years.  At no time has anyone suggested that I would have to go to the hospital to initiate dialysis!  In saying that, though, my neph did at one time told me that he wanted me to go ahead and get my fistula created because he didn't want to have to see me in the ER, but he was sort of joking.  But that's a moot point now since, like you, I have a fistula ready for action.

I'm not planning to do incenter D, though, although I realize I will possibly have to dialyze in clinic until I can start home hemo training.  But again, there has been no mention of hospitals.  How weird.  I am eager to find out why he thinks that's necessary for you.  Let us know, OK?

[lmunchkin]

If I may interject here, MM, you may never have to go in-center for D at all.  You have your fistula already w/ the butterfly fluttering profusely.  Just get your neph to send you to a clinic that trains in NxStage.  Those training nurses are Dialysis nurses too.  Most RN nurses who dialysis, start in dialysis clinics.  You can avoid the whole In-center experience all together. When we started D. we never went in-center for 5yrs.

Now maybe you should go there first, just to see what a lot of the "horror" is about, but you do not have to start in a Dialysis clinic.
When you train for NxStage, you will be dialysising everyday you go there. The nurse can show you everything you need to do.  Then you and your buddy (Machine) can go in your own home without ever going into a center!!!!

I personally hope that you can avoid it a lot longer, but you know eventually it will happen.  I know of no one else who is as prepared as you are, and you are going to see in time, that it will definately benefit you cause you did your homework very well.

Now Your Emotional Side, well no comment!!!!         You know I love you Moosey, from my very first post! 

lmunchkin
 

[MooseMom]

Oh munch, you're so sweet!  You've always been so encouraging, and I know I am not the only person who has benefitted from your constant care and attention.

I am not terribly sure how the logistics will work out re: NxStage training.  My neph and my PSP own/manage two dialysis clinics that are for-profit but are not one of the LDOs.  I would like to believe that this is a good thing; it's good that they are not Davita/Fresenius, but I'm not sure it's good that they have their fingers in their own pies, if you see what I mean.  But I DO know that my neph has managed to keep me off D for a LOT longer than he thought would be possible, and I am constantly hearing from many sources that I am lucky to have him as my neph.  So, I choose to believe that this is all a good arrangement.  But since it is a small practice, they might have their own way of fitting training in with actual treatment.  My husband has already spoken with the trainer, and where I will train will depend upon where most of the new trainees are located at the time I need to start D.  It could be in the clinic that is only 5 minutes away from me, or it may be in the other clinic which is 30 minutes from me.  Since I won't know until I start, I don't worry too much about it.  I'll just do what I have to do and get on with it.

[sullidog]

I can't answer your question, that in my oppinion the only reason you should be dialyzed in the hospital is admition do to illness and finding out you have ESRD like me I had to go on emergency dialysis.

[lmunchkin]

But at least you KNOW your choices!  You have researched to your hearts content, and Iam telling you that this is to your benefit.  I give you more credit than you give yourself.  We were thrust into ESRD without knowledge.  Why it happened that way, is not for me know, but you at least have been given time to reasearch and you will do very very well.

If it were me, looking back, I would insist on straight to NxStage training, or if you want to go in-center, insist on it.  It is your life, and you are the one who controls it.  Seriously, You can tell your neph what you want to do.  After all these years, surely he knows your strong will.  Heck, you probably know more about the D. side of nephrology than he does. He may know of all the options, but you will be doing the option!!!

lmunchkin
 

[Traveller1947]

Riverwhispering:  I've been thinking a bit more about my own early experiences beginning dialysis in-center.  There was so much fluid accumulated that it was hard to determine a dry weight; they started very conservatively, but I still collapsed in front of the center on two occasions while waiting for my ride home; once I got home, it was an hour's work to climb the one flight of stairs to my second-floor apartment; once I was there, I had to go straight to bed, with chills and trembling and light-headedness. I had a really bad start and do believe now that it would have been easier for me (and less dangerous) in the hospital.  I don't mean to frighten you with my experiences, but I think it's important for you to ask the doctor why he thought the hospital would be a good way for you to begin.  We all hate hospitals as much as we hate dialysis, but sometimes it's the safest place to be.

[MooseMom]

Munch, I want to be clear...I do NOT intend to have standard inclinic thrice weekly dialysis as my modality.  If at all possible, I will immediately begin with NxStage; that is my intention, and that is the intention of the training nurse.  BUT I do know that on occasion, the timing might not be perfect, and I know that there is a chance that I might have to do incenter D for maybe a week or two.  I will certainly make my wishes known, and I will make sure they accomodate me if at all possible.  But if I happen to have to start D, say, the week the trainer is on vacation, well, I might not have a choice.  So don't fear!  It will be NxStage for me as early as possible and as soon as necessary!

Traveller, thanks for posting about your experiences.  The day before you started D, did it occur to you that starting in a hospital might be best?  Did anyone ever give you the option or even discuss it with you?

[lmunchkin]

Traveller, I certainly understand that side of it due to the stumbling and falling, but there is a more serious side of doing it in a hospital, infections!!!  Hospitals are notoroius for infections.  As a kidney patient, you want to avoid them as much as possible due to immune system so low.  I know first hand what happened each time my husband went in for what ever reason, he would get something.  He would go to different hospitals and it never would fail, he would get an infection thus causing his release to be delayed.

I will never forget J going into hospital to have a couple toes amputated. He went in hospital in Aug 2008 and was released 2 days before Christmas. Eleven weeks all together all because of a bacterial infection: vancomycin-resistant enterococci (VRE).  The clinics were not set up to receive a patient like this with this infection.  He would probably still be in there, if I had not agreed to PD on him at home.  He was doing PD when he entered but do to a reaction to the drug "Baclophen" that put him in a coma for 3 days.  He had to have a perm cath put in to remove this drug from his blood stream faster.  The moment they did the Hemo, next morning he was coming to.  I still tear up just typing this, cause I am remembering a very tragic time for us both!

Anyrate, they amputated his toes and he got that infection and could not be released until it was gone.  As I understand it, it was at the point of where they amputated and got into his bone.  Awful thinking about it.  So much anguish for him at the time.  Amazing how he has pulled through all of this with his sanity in tact.

Well, Iam drifting somewhat, but the point Im making is, those with ESRD, should do their best to avoid Hospitals.  I know that there are times it can't be helped, though.

Sorry for the rambling!

lmunch
 

P.S. MM, I do understand that.  I just want to save you alot of hardships & regrets, if you get my drift. Don't want you to look back, for anything!

[Lillupie]

Oh munch, you're so sweet!  You've always been so encouraging, and I know I am not the only person who has benefitted from your constant care and attention.

aint that the truth!

[RichardMEL]

I had my fistula for 2 years before I finally had to "do the D Dance" - my D unit is IN the hosital itself, though it has spots for regular outpatients who live in the area. Originally they wanted to send me to a satellite unit, but I live literally across the road from hossie (it is why I bought there because I knew I would need to be close for D and the hope of a tx) and luckily my neph just hapens to be the boss ofeveryone there, so common sense prevailed and I was allowed to stay in the hospital unit. Having said that I was treated pretty much like at a satellite unit. Sure, the div 1 nurses doing needles and stuff had absolutely years of experience and many of them were so good at their craft I felt a bit spoiled, and they were used to more extreme/emergency situations so I always felt confident that if anything ever went wrong I was in the right place. They were very gentle when they popped my D cherry (and indeed so cherry did come out that time and they claim I almost fainted! LOL). I would have to say my first time, and initial weeks were good because I had some great staff looking around me, and I guess it was easier because my fistula was mega mature by the time they got to deflower it with their big hard long... needles....

[Traveller1947]

MooseMom: I wasn't offered the option of starting dialysis in the hospital.  For me, it's one of those "if I'd known then what I know now" situations.
Imunchkin: Those were horrendous experiences that you and J went through: I'm so sorry to have reminded you of them.  Ironically, in the seven years I've been on dialysis, the times I've had serious infections, including C.difficile that took four months to clear, they were acquired in-center.  My hospital stays, all also for serious problems, including a very recent stint in the ICU with hypovolemia (I had resisted going to the hospital), luckily, have all been without complicating infections.  None of us wants to go to the hospital, but sometimes it's necessary, and we have to take our chances...
Riverwhispering:  Talk to your doctor today, and find out what his reasons are for recommending a hospital start.  Then you can make the best decision for you.  I'll be thinking of you...

[carol1987]

My doctor likes to start in the Hospital.  I was so happy that I did...  My doctor and 3 nurses where there when I first went on ... they explained everything and one of the nurses was able to sit with me thru the entire session.

After a few treatments inn the hospital... i went to the center...   Personally I would have hated to start there, they infiltrated me the first time they tried...

[Riverwhispering]

I'm more concerned about the cost.  I'm so in debt right now with no medical insurance.  I'm sure i could find someone to take care of my critters somehow.

I don't understand why I can't get any help from the dialysis social worker until I start dialysis.  No way could I possibly pay the 20% that medicare doesn't cover.   It makes me wonder if I will have to end up on the streets before I can get help.   How do people not end up thinking of ending their lives when there seems to be no way to pay for this treatment?

 

[Rain]

I was admitted into the hospital with failed kidney and stayed a weekend, on the monday the put in the line and sent me home with a time and spot in center to show up the next day for my first treatment.
I took a few days off work to get use to dialysis, but was back to work within a week.

Just before my first treatment I was throwing up for 12 hours straight cause the hospital gave me pills with codeine for pain from the line.  My neck was swollen.  And it turns out I'm allergy to codeine.  It wasn't fun, dragging myself to in center after that.

[MooseMom]

I'm more concerned about the cost.  I'm so in debt right now with no medical insurance.  I'm sure i could find someone to take care of my critters somehow.

I don't understand why I can't get any help from the dialysis social worker until I start dialysis.  No way could I possibly pay the 20% that medicare doesn't cover.   It makes me wonder if I will have to end up on the streets before I can get help.   How do people not end up thinking of ending their lives when there seems to be no way to pay for this treatment?

That's a valid concern, and you DO need to speak with someone about this.  I'm sure you are not the only person in this predicament.  Could you contact your ESRD network, maybe?

[Riverwhispering]

I just got home from seeing my Neph Doctor and boy do I feel great mentally!!! Thanks everyone for the advice and suggestions.   I asked him why the three days for me and he said it's just what they usually do up here in this area but it's nothing to do with me personally.

I also asked him about taking TUMS as a pre dialysis Phosphorous binder and he said that is done sometimes but my Phosphorous is back in the normal range since I changed my eating choices and he said it could mess up other things that are getting better for me like my calcium / bones etc. 

My GFR went from 11 to 12.6 this time so that's a relief, more time before I start dialysis 

I don't see him again until April unless I feel sick, then he will see me sooner.  He's doing that because he knows I don't have insurance and it's expensive for labs and office visits.   

All in all I'm doing much better then 6 weeks ago and I'm totally convinced it's because I'm being very anal on what I eat.

Oh and the Transplant thing... I'm going to work hard to get my weight down so I can give it a go.

Love to you all

River

[Traveller1947]

Riverwhispering, I'm so glad your doctor's visit went well!  That your blood chemistry is improving and you got answers to your questions and that your doctor understands your situation well enough to be flexible are all reasons to celebrate. and you've even made plans that will bring you closer to being on the list.  What an eventful day!  You must be feeling so good...

[MooseMom]

Very good news all around; thanks so much for posting this!