My Doc Says I Need Dialysis But I'm Feeling Well

[Goofy]

This is my first post and one of the main reasons I've joined the forum.  My doctor has been telling me for the past few months that I need to start dialysis.  I have the peritoneal catheter in place and all it needs is to be taken out from under my skin.

My labs have been running pretty constitant for the last four months.  I keep telling him I don't feel too bad but he keeps telling me that I don't know how bad I actually feel!  He is starting

My current labs are:  potassium 6.0, phosphors 6.9, BUN 74 and my creatinine is 6.5.  He has been not happy with me for the last few months and then at my last appointment I told him I was starting to have muscle twitching.  He went through the whole "start dialysis" talk and I still said I'm not ready and then he really got upset with me.  I've been going to him for 10 years and I really like him and respect him.  So you are probably asking "then why don't you listen to the doctor?"

I'm still not quite convinced that I need to start.  I think I feel good most of the time.  The only problem I see is that I just don't have as much energy and I sleep a lot.  But other then that, I can't justify starting.

I know have a disease and I'm not trying to run from it but then I think to myself, maybe I am in denial and that's why I won't start.  He tells me all the bad things that can happen but I really don't believe they can happen to me.

So I'd like to hear from others if they think I'm fooling myself or is it really time to start.

[dh514]

As to when to start that will have to be your decision. I went about a year after I was told to start because i told myself that I felt fine. The reason I finally decided to start was because it was becoming difficult to work because I was having problems thinking clearly. I  gave in and started PD and within a couple of weeks I realized that I had just forgotten what feeling  good actually felt  like. I can think clearly again and all of my lab numbers which were high like yours are now all in the correct range.

The physical part of PD is not hard at all for me, but the mental aspect did take me awhile to come to terms with. Other than lifting and swimming there is nothing that I cannot do that I did before, I just feel a  lot better doing it.

[dwcrawford]

All I can do is relate my personal experience which was very similar to yours.  I felt fine.  Creatine, Bun and proteins were very high.  My neph whom, like you, I respected and trusted said I was going down fast and the sooner I started dialysis the better off I'd be.  I resisted seriously but started a few weeks later.  He was right.  My other doctors, Internist, etc. rave about how much more healthier I appear.  Unlike others I know, my diet has not been restricted and my monthly labs are near perfect except for low phos and proteins.  I am at an advanced age and I'm told by leads in the center that I am an example for starting early.  Will it be the same with everyone?  Who knows, but if you truly trust your doctor then I'd listen.  I've been on dialysis for a little over two months, so I hope you get responses from those who know better than I.

[KICKSTART]

You have said two things ..'i dont have as much energy and i sleep alot' so doesnt that tell you all is not well. Maybe you know that once you start there is no turning back and you have to come to terms with things?  I didnt get a choice on a start date , i quickly went downhill and had to start straight away. Its going to come round sooner or later  , if you leave it will you feel worse? Only you can decide but sooner or later you will have to. 

[willowtreewren]

My husband did not realize how bad he was feeling until he started dialysis. Then he said like he felt 10 years younger. He was sleeping all the time, too, and just had no energy. Now he is back to his old self and doing all the things that he used to do before he started going down.

Aleta

[jbeany]

I wish I had started sooner than I did.  I kept putting it off because I felt "fine" too.  The problem is, the illness comes on so slowly that you don't realize how bad you feel until you experience something else.  I do think your doc is probably giving you some good, sound advice. 

That said, I totally understand not being ready to start, and wanting to push it off for a bit longer.  When the symptoms get bad enough, you'll go ahead, mentally ready or not.  Starting when you still feel like you are coping okay without is a big mental step to take. 

You might want to consider setting a start date for a month or so away.  That gives you time to get organized and mentally ready.  And remember, starting while you still have a bit of health makes it easier to adjust to the physical changes that come with dialysis.

[Rerun]

I can see from your labs that you need to watch your potassium.  If nothing else, get to know your high potassium foods and "avoid" them.  French Fries (Potatoes), Milk, cheese, dairy are high in both potassium and phosphorus.  All of the diet you will need to learn.

High potassium can stop your heart.  High potassium can weaken your muscles in your legs and your heart is a muscle. 

I guess you could wait until you are puking up your guts like I did.  Not fun.  Start while you still have a clear head and can learn what you need to.

Just Do It!!!                           We are here to help you through it!

[Zach]

My current labs are:  potassium 6.0, phosphors 6.9, BUN 74 and my creatinine is 6.5.

A 6.0 potassium is getting dangerously high.  The normal reference range is 3.5 - 5.1 mEq/L
And a phosphorus of 6.9 can begin causing problems with your bones. The normal reference range is 2.6 - 4.5 mg/dL.

Don't put your health in jeopardy just because you're "feeling well."

[Ang]

better  to  start  when  your  feeling  ok  and  adjust  to  the  changes

if  your  feeling  like  crap  and  have  to  adjust  to  the  changes  that  is  D,you'll  kick  yourself  and  ask  why  did'nt  i  do  this  earlier

good  luck  with  your  choice.

[chris73]

Like rerun said dint wait until you start puking it really isn't fun at all!!!I too had high potassium  and was told it was getting to a dangerous level that i needed dialysis.My neph told me that a high dose of potassium is what is given to death row inmates as part of lethal injection and thats why i started dialysis.You will start to feel really bad if you dont take it.Good luck in choosing what is right. God Bless!!!  Chris

[Hanify]

I think you should seriously think about starting too.  It must be such a hard decision to make.  Thinking of you.

[Lucinda]

I am going to be coming from the other side of the spectrum here.  I think I started way too early.  I felt 100 percent better before I started dialysis and i have been on it now for five months.  The hardest part of starting early is getting your dry weight and hours right.  I did not want to lose the residual function I had before I had to so I did my own homework.  Most important thing to remember is that not everyone is the same.  Five months down the track I think I am getting into a routine that suits me.  I reduced my hours to three hours a session and I do that every second day.  I put fluid on rather than take it off and I keep my pump speed quite low.  The only issue that I really have is potassium clearance so really I am only on dialysis for that reason.  My creatinine hovers around 400 and my urea around 12.  My hemoglobin is a bit low and a few problems getting it up but almost sorted that out.  If I go away for the weekend and take a two day break from dialysis I feel absolutely terrific and I weigh about a kilo lighter than I did when I came off the machine the previous treatment.  I will probably get kicked around the head for saying this but I don't believe you should start dialysis when you are feeling really well.  My relatively healthy, fit body rejected the treatments and I really don't see me losing my residual renal function any time soon.  Everyone is so different though.....it really is a toss to decide whether you start earlier or later.  If I had my time over again there is no way I would have started so early.  It is really a choice you need to make (obviously with the help of you neph) but at the end of the day, especially if you are not feeling too bad, you need to call the shot.

[del]

I know it's a hard decision but you should really consider starting soon. My husband put off starting and he had a miserable year before he started.  12 years ago there were no sites like this to get info. He was stomach sick, itching, no energy, cramping, and no appetite.  We didn't even know that a lot of those symptoms were from kidney failure!!!  For most people the longer they wait the worse the symptoms get and it takes them a lot longer to get 'good" results from dialysis.  Dialysis does change your lifestyle but hubby always says it may be a major inconvenience but it is a whole lot better than being sick!!

[dwcrawford]

At the end of the day, everyone has an opinion too.  Bottom line is, as stated a few times, the decision must be yours.  All any of us can do is to related our own personal experience.  Good luck in your decision.  Keep asking and you'll surely make the right one.

[Stoday]

I find this thread very interesting because I expect to start HD before the end of this year.

I've known that my kidneys are failing for six years and now I get tired easily, so get lots of sleep; can't concentrate for more than 1/4 hour; have no appetite. Some of my labs are slightly worse than Goofy's, K and phos slightly better. But I feel OK and I'm not yet getting nausea. I think that when nausea hits will be the time for me to start.

[Goofy]

Thanks everyone for the replies.  It looks like there is a lot of support here!

Yes, this is a very hard decision.  That's part of my problem too.  I still feel like I have a choice and like Kickstart said, I feel once I start, there is no turning back.  It's almost like I'm waiting until there is no longer a decision to make.  My neph said that is the worst thing to do.  He's frustrated with me because he keeps saying I've had a lot of time to get ready and he is so afraid that I'll end up in the emergency room.

It took him months and months to convince me to even get on the transplant list.  I fought him on that but now that I look back, of course, I wish I would have listened and I would have more time in right now.  It also took him a while to convince me to get the PD catheter.

People always look at me and they say that they thought I was sick but they say I look good.  I don't see myself as "looking" sick either. 

I probably shouldn't even admit this but my daughter is getting married March 2010 and you would think I would just do it for her to make sure I'll be feeling well enough for the wedding.  I didn't think about that until a friend of mine mentioned it.  That's what really pushed me to join this forum.  She really made me start to think about the benefits of starting soon.  I try not to say to much to my family because I don't want them to worry.  I know my daughter will try and work the wedding around me and I don't want that.  I want her to enjoy it and not worry about me.

I know people are correct when they say to start while you're feeling well so I can start with a clear mind.  My doctor knows I'm not trying to be non-compliant but I'm really struggling with the decision. 

I know its my decision but I like to hear different views.  Maybe something that will be said will trigger something in my head to make me finally make a decision.  Thanks so much for listening.  I can see this is a great group!
 

[RichardMEL]

Welcome Goofy. You face a difficult decision - and one that a lot of us have been through in one form or other.

I am more of a conservative person myself and I would urge you to seriously consider starting - while you are "relatively" healthy. You might feel OK but remember if you're like a lot of us your kidney function has been going down fairly slowly so you wouldn't notice the changes in how you feel very much - soon you think "normal" is sleeping a lot and feeling tired more - definite telltale signs of ESRD. I know when I started I felt fine too, but my GFR was 6 and my labs were starting to show it - much like yours were. Ironically I was in a test program testing people's quality of life due to later start of hemodialysis, and they only started me because my labs were telling them "this is serious"

I also see folks come into the unit for their starting sessions and they are not in a good way - with the bad nausea, vomiting and all the rest. Trust me - it's scary enough as it is to have to deal with starting dialysis, but to do it when you feel like that would be doubly worse IMHO. If you're clear headed it will be that much easier to handle everything that occurs.

I understand you need to be comfortable in yourself with starting dialysis, but the longer you leave it, the worse it will be in the longer run for your body - those labs are somewhat worrying (as Zach) said and I'm not surprised your neph is pushing you.

Remember your doctor doesn't want you to start because it makes him feel better about life or get more money or something. It's because he recognises your body needs it - and you need it to keep you in the best shape to accept a kidney transplant when that magical call comes.

I know it's scary for you and a big step but I definitely recommend you give it serious thought.

[TiffanyJean]

Goofy,

Firstly let me say Welcome! This is a great family to join! Secondly I can only share what my husband (who has ESRD) and I have gone through. I'd like to point out that you are SO lucky to have a choice, both on what kind of dialysis you do and when you start it. Richie had no choices. It was down to life or death, we had one day to decide if he was going on HD or not. When Richie was diagnosed his numbers were through the roof, the doctors hadn't seen anyone with numbers so high, and Richie was walking around - he got winded easy like just walking from the bedroom to the front room. but he still kept saying "I'm fine" when i was telling him to go to the doctors. it wasn't until his dentist said 'you look horrible - you should see your doctor' that he went. When he went to the ER they were shocked to see him walk in. He had 2/3rds his blood missing and had to have 2 transfusions back to back. his kidney function then was at 5% now its at .5% maybe less.

I know how hard a decision it is to suddenly be faced with needing a machine to keep you alive; Richie does PD which has let him lead a mostly normal life, when he was on HD it was much harder... on his body and spirit....


Goofy, I hope that you choose to start sooner rather than later; because not only will it be much better for you - but it will be much easier on your family. If for whatever reason you do feel that starting in the near future is not what you want to do - then at the very least start following the diet, because then at least your toxin levels wont just be building, and building. Also you should talk to your family, get them involved in your care, IHD is a great family for supporting you and your loved one (I keep trying to get Rich on here, but so far no luck).

Take Care and Good thoughts your way.

TJ


ps - starting dialysis is a big decision but like kickstart said - its going to come sooner or later - and the sooner you start the sooner you will start to feel better (even better than you think you feel now)

[Chris]

Surprised no on asked how your GFR is.
 As rerun said, you want to start before the numerous  begins. That happened to me and I just thought it was a bad flu. Started to feel better again, but noticed ankles swelled thru the day. At the time I was also having a lot of unawareness of hypoglycemia attacks due to diabetes and thy became more persistant. One got so severe I had to go to the hospital by having my mom call 911 from her work. Then right then and there (well after I was treated for the hypo) I found out I had renal failure and ended up staying a month in the hospital.

Have you tried limiting your phos, potassium, and salt yet?
I posted some charts and listings of what foods are high to low in those catagories at  http://ihatedialysis.com/forum/index.php?topic=14600.new;topicseen#new

[Ken Shelmerdine]

Goofy I know exactly how you feel. I only knew about my kidney condition from a routine medical for an insurance policy 18 years before I actually started dialysis. In all that time I never developed any symptoms and when they told me it was time to start dialysis I was cycling a 12 mile round trip to work. Did Pd for 3 years never felt either better or worse just normal although I did tend to feel sleepy quite easily but I just put that down to age.

It was only after starting Haemo this last six months that have I noticed quite a significant boost to my general energy levels which I thought where OK but now I realise how well it is possible to feel and no more late afternoon naps. I like you have been in a semi state of denial until just recently but now I know what a differnce dialysis has made to my general well being.

[KICKSTART]

I have also noticed you have opted for PD ? and would like to say that if you can put up with a few weeks of manual exchanges (till you get going) you could then change to a cycler , which will do your dialysis for you while you sleep. PD to me is far less invasive and gentler on the system , also the cycler gives you the option of carrying on during the day as normal ..if thats any help?   

[chris73]

And another note... when i was referred to transplant clinic i was in denial of dialysis too and the surgeon there told me she would NOT transplant unless i have taken dialysis that i would die on the operating table with my potassium so high.She scheduled me to have a HD catheter placed that afternoon and start hemo 2 days later.If you get real sick and have to go to hospital they place it right there in ER dept. and my neph said he would not  recommend that.Main thing to think about is need to be healthy and have good labs for surgery.Sooner your start "cleaning" your blood better it will be and the better you will feel ,and able to get on transplant list.God Bless!!  Chris

[Jie]

Goofy,

After read this thread, I understand your situation better. Although many people would like to start sooner than later, I think there is a case to be made that you can postpone dialysis. With PKD, you can start dialysis a little later than most other kidney diseases. As long as you are feeling good and the disease does not prevent you living your daily life, it is ok for not dialysis. When it is the time for dialysis, you can feel it.  I think it is ok to go by your feeling.

You do need to take care of your diets though. If your potassium continues to increase, you may end up in the emergency room soon. So reduce the intake of potassium rich foods and take your pho. binders with your meals.

[Goofy]

After reading the posts and giving it a lot of thought, I called my neph today and got the name of a surgeon to have my PD cath brought out from under my skin to get ready for dialysis.

I made an appointment for 7/31 to see him.  I will be going to Cedars-Sinai in August (that's another posting subject) and when I get back, maybe then I will have the surgery.  At least I'm making the first attempt.  I'm the type of person who needs to take baby steps to get to where I need to be.

I have my monthly labs at the end of this week so I hope everything goes well.  Thanks everyone for your support and I look forward to being a contributor to the forum!

[kellyt]

     Good Luck!