I Can't Believe Its Really Happening to Me

[RichardMEL]

It's not a stupid comment at all and it is very valid.

I think the blessing we have though is that at least we have access to this sort of technology that DOES keep us alive. Other folks, like with serious heart conditions and the like, do not have this option.

And luckily, with the vast majority of members being in western countries where dialysis is available to us that we can keep going on (as opposed to some poorer countries who simply cannot afford to provide these services).

I love Del's comment that her husband does dialysis to live his life and not let it control him or his life. That is exactly the way I see it. I don't live for dialysis I dialyse for life.. If I didn't have it yes I wouldn't be here, but I do have it so I can keep annoying people and stay with my family, friends, do my job, watch my football team lose, etc etc....

if dialysis was all I had in life then yes, I might seriously reconsider things - but it's just a small part of it! When I leave I have so much else to think about and concentrate on... and that's why I have my sessions so I can do all that stuff...

and of course I have the hopeful option of a transplant at some point - while I wait for that dialysis keeps my body in a state to accept that gift!!!

When I wake up on non dialysis days I don't think about D. I think about going to work, or what will I do today(if it's a Sunday) and how will I spend my time enjoying my life and getting the most out of it I can. I don't sit there thinking about the next treatment, or even the last.. even if it was a difficult one.. it's in the past, I got through it and time to focus on what's important!


the focus is most definitely on life and living it - not sitting in a corner tied to a machine unable to do anything or enjoy life.

[girliekick]

well good for u. I still struggle with  'is this life support' every once in a while ..... But its just sugar water. I take take my daily pills, nightly expensive sugar water, and weekly shot.  they are all supportive of my life!   im proud of u. Happy to help or brain storm creative solutions or just listen.

girl

[KICKSTART]

Well Goofy you are one step closer  I promise you if i can do dialysis (im the worlds worst , non compliant patient the unit has ever had!) but i still go in. I think the nurse find me entertaining as i challenge their brain cells !  Then im sure for you it will be a walk in the park!  Just think cup of tea and a sit down !

[okarol]

Reading these posts reminds me of the news an intern gave me after reviewing Jenna's labs: "In 1 to 5 years she will need dialysis or a kidney transplant.' Huh? WTF? I called my husband (he was home in bed on narcotics recovering from his second back surgery.) I was sobbing. We had no clue. The news was devastating. We spent the next 6 weeks going to 3 different hospitals, urologists, nephrologists - and the answer came back the same. I wish I had found IHD before Jenna started dialysis - it would have been such a comfort to see other patients who were doing ok.

I hope you find the answers you seek Goofy, and that you get the support you need.
 

[paris]

Goofy, thinking about you today       I think I was very fortunate to have found IHD before dialysis.  My neph thinks I am one of the most informed patients he has had.  Most of my knowledge is from this site and the great members who have shared what they know with me.  If others hadn't been so encouraging, I would have dealt with all of this differently.  You are very well informed and you and your doctor will make good decisions for you.   Let us know how things are going.  Sending a hug your way   

[tyefly]

 I am certainly one who can say the same as Paris..... I learned of my CKD in April of this year  and found this site and learned all I can and I just started D a couple of weeks ago.....   As always   it sounded alot worst than it has been......  I think you will find the same..... and you will also find much suppost here as I have with some people......   

[Goofy]

Support?  I've received so much more than I expected.  I've come such a long way since I found this site.  I didn't even want to think about dialysis let alone prepare for it.  But through this forum I finally accepted the fact that it will happen and my life is not over.

Although I still have days where I feel like this can't be happening to me.  But now they are few and far in between.

I'm telling you that my body is really "goofy".  I got an epo shot at my last neph visit and I feel so good!  When I went to the doc I was having some signs that it was time to start and I was on the verge of saying OK but then the word no came out of my mouth.

Since I've had the epo shot, I feel like normal again.  I don't feel sick or tired now.  BUT through the knowledge and support I've gotten from the forum, I really understand that does not mean I'm not "sick".

I have a neph appointment early November and I'll have my blood work done.  Even if I feel "ok" but my if my kidney function has declined since the last blood test, I'm finally going to accept it and start dialysis.

Thanks so much for getting me this far!!  My husband thanks you too!!  He's been after me for a long time to finally admit I have kidney failure.

[okarol]

 

[Savemeimdtba]

Sweetie, I think everyone here is just trying to help you so you don't have to go through the HARD stuff that most of us did.  Not all of us have a choice as to when to start dialysis... and it's hard and it sucks but it becomes normal and in the end, we're alive! 

I know it must be incredibly difficult to have to DECIDE to go on dialysis.. but I promise, it's not as bad as it seems.  You're so lucky to be able to do PD.  I just don't want you to get into an emergency situation where they automatically put you on Hemo cause they can't wait for your catheter to be pulled out and a PD nurse to come do your exchanges... you don't want that. 

Dialysis sucks, it's true.. but you get used to it and most of us live normal lives!  Only time I even think about dialysis is when I'm hooking up at night and unhooking in the morning.  It takes 10 minutes for each - it's a small price to pay to feel good and be able to have a life! 

The sooner you do it, the sooner you get used to it, the sooner you can stop worrying about it and resume your new normal life. 

[Lillupie]

I know exactly what you mean and what this is like, which is a reason why i am writing my book on dialysis. I will tell you my story quickly. I was 24 when i started dialysis, i had a daughter that was going on 2, trying to finish my college degree. I will tell you, hopefully you have by now, seeing that i am a little late on this, decided to start dialysis. Months earlier from my starting dialysis i knew my creatinine level was 4.0. I left with that and ran and didnt go back for  months. At this time I had to do PD 4 times a day (before starting the cycler).
 But let me tell you, what i know now, if i knew then, I would of started dialysis when my creatinine leve was at 4.0. I have met two people who started dialysis early (when their creatinine level was 4.0) and they only had to do PD twice a day! Thats nothing. If i could do PD only twice a day, I would not be stuck on the cycler.
 You might be tired and not know it because your body gets used to feeling tired. If you choose PD, you can still live as close to a normal life as much as possible, and best of all it helps keeps the residual kidney function! Yeah getting surgery for either a fistula for hemo or a cathater for PD does suck as well. But look at which one is going to be best for you and help you have the best quality of life. If you choose PD, it only takes about 20-30 minutes for an exchange. I went to Sicily and a 3 week road trip across the US doing PD in my car! I know it doesnt seem very appealing but I like it so much better then that hemo!

Lisa
Maybe you could do home hemo at some point since you are married. THere is no tubes sticking out of your body for that. THey have short daily home hemo, and i guess you are on that for a few hours a day. That doesnt seem to interfere with work or sleeping. I also have heard that you dont have as much diet restrictions! THat is because you are cleaning out your blood on a daily basis.  Good luck.

My hands are shaking while I'm writing this e-mail. I received the results from my blood test and my kidney function has declined to 6%.  I know in my mind what the right thing to do is but I still don’t want to start dialysis.  I almost picked up the phone and made an appointment with the surgeon to get my PD access brought out from under my skin, but I just can’t do it.

I don’t know what is wrong with me.  I say I’m not in denial, but it sure sounds like I am.  I just can’t do it.  I just can’t change my life.  I don’t want to live on a machine the rest of my life.  I was just thinking this morning while I was getting ready for work.  I was thinking how horrid it would be to have to do all the dialysis crap in the morning in addition to just normally getting ready.

And just last night when I went to bed, I thought how awful it would be to have to hook myself up every night to a machine.  I was thinking about how I fall asleep on the couch and when I wake up, I just go right upstairs to bed.  I won’t be able to do that anymore.

Just say I went out on a Saturday and got home at midnight, no matter how tired I was, I’d have to get myself hooked up. Then I’d have to lay in bed until I do the total hours required.  Then if I had to do an exchange at work, I would have to be in a sterile room.  I know some people say their workplace will accommodate them with a “private” room, but if they can't, I'd have to use the "general" washroom.  Would you want someone at work filling their stomach with fluid and then dumping it in the same washroom you use?  I know I wouldn’t like it.  I believe a lot of people would look at me and treat me like you have some kind of contagious disease.

Although I keep saying I’m not in denial, I still can’t believe this is happening to me.  Things like this only happen to other people.  I knew my results would not be good because for about 2 weeks now, I’ve had a really strong urine/ammonia taste in my mouth and I know that is not a good sign.  And I’ve been having a lot of muscle twitching which is not good either.

My doctor wants to see me tomorrow.  I didn't want to tell my husband but he overheard me talking to the doctor.  Now my husband is insisting on going with me.  I really don't want him to.  I don't want to be bombarded by him, the doctor and the nurse telling me what I have to do.

[Dana Renee]

Goofy, I know this sucks for you I think it sucks too, however, its very necessary. I am only 25 years old and I was first diagnosed with kidney failure when I was 17, I did hemo. for a while and then it went away. I got taken off dialysis and was goon until a couple years ago. I was home from work sick for about 4 days. Suddenly it got so bad that my whole body felt like I had been beaten and I could barely walk to the bathroom, then I started coughing up blood. Thats when I knew something was wrong and I had to go to the emergency room. They siad my kidneys had shut soen again and my lungs were filling with blood. I had to have a blood transfusion and was hopitilized for alomost one month. I did hemodialysis for over a year and then I decided to switch to CAPD. Ive been doing CAPD for almost a year now and just recently I switched to CCPD. Im not sure I like the CCPD, it seems to have a greater risk of infection than CAPD. However, I definately think that CAPD is a great form of dialysis. I agree it does suck having to hook up to the machine everynight no matter how tired you are, but it is saving your life. Now I have to admit that I am young and I do slip up every now and then, you know how young people cant be told nothing...lol. So sometimes if Im extremely tired or if I spend the night away from home I skip a few treatments every now and then, and I also dont always do my midday exchange. Im not by any means reccomending that you skip treatments or anything like that Im simply just saying I have been doing it for a while now and I am fine. Each persons body is different and handles things differently, I have found that for my body I am ok missing a treatment or two here and there if I feel its necessary. I definately think you should not put off getting treatment any longer though, the longer you put it off the worse you are going to feel. It will not fix itself. I was in denial for a while too thinking that it would miraculously go away and it did once, but now its back and its gonn be a part of my life for the rest of my life, I have accepted it and Im dealing with it on my own terms. I hope you make the right decision and start getting treatment as soon as you can.

[Goofy]

Dana Renee, Thanks for you words of encouragement. I’m sorry to hear that you are so young and are on dialysis.  I’ve lived 53 years without it and don’t want to do it and you are so young to have that burden.

I still don’t know what to say.  I’ve been trying to “lay low” on the board because I feel that I want feed back from people and then I don’t do anything about it.  I think right now I’m looking more for people to say you’re sick but you still have time.  On the contrary, I know I don’t have much time.

I’m being perfectly honest with everyone here.  I flip flop every five minutes in my head.  One minute I don’t feel good and I want to pick up the phone and call the doctor.  Then I think to myself, if I do call what is going to tell me………he’s going to tell me the only thing that can be done is dialysis.  So then I think that if I am not ready to commit, what’s the point of calling, so then I don’t make the call.

I KNOW, I KNOW what I need to do; I just can’t do it right now.  I know people will say you’ll never be ready but I really believe that when its time, I will feel right about my decision.  I have to be in that “place” in my mind or I will always second judge myself.  I’ll always wonder how long I could have gone with out dialysis.

I pray to God each night to please help me; not to cure me but make me realize I need to make the right decision.  I truly believe God will let me know when its time.  I really didn’t want to share this with anyone but that’s how I really feel.  You may say He’s already telling you but you’re just not listening.  Trust me, I’m not a kookie religious fanatic, but I do believe in God.  I believe we only have so much control over our lives.  I also believe things happen for a reason.  When I am meant to start dialysis, I will feel it in my heart……….OK now don’t say…….sure you’ll feel it in your heart because your heart will just stop!!  Seriously, I still am not at the point where I feel I’m ready.

I understand if people disagree with my “thought process” but I’m really being perfectly honest.  I have not told any of my friends or family what I feel deep in my heart and Its seems odd that I can share my deepest feelings with people whom I’ve never even met but I think partly its because you can judge me and I have to keep in consideration that you don’t know “all” of me but my family and friends do so I guess I don’t want them to tell me I’m nuts.  With this forum its not like anyone is just giving me their unsolicited opinion, I’m the one asking for help making my decision.  So I need to take whatever comes my way.

Or perhaps, I’m waiting to the point where “I” don’t have to make the decision; one day the decision may be made for me.  I’m absolutely going out of my mind with this.  I know I contradict myself a lot but that’s part of my struggle.  And did you notice I always say “I think its because of this or that” then I turn around and say “or maybe, this is why….”.  I think (here I go again trying to figure out why I think the way I do) I really don’t know any reasons why I think like I do.  It’s because I really don’t know!  I’m trying to find the answers but I don’t think I ever will.

I hope I stick to my word about my next blood test which will be next week. If my kidney function has declined even slightly, I will make the decision to finally do it.  Thanks so much everyone for being patient and still helping me.

[Sunny]

I'm not a religious fanatic either, but I do agree with your point of view God will guide you in this journey.
I admit, I have spent time asking God to just take me before I am forced to make the decision about starting dialysis. He seems to have other plans for me, and I am supposing he has other plans for you too. You have gotten this far for a reason, and it looks like you are meant to go the distance.

[Brianna!]

Goofy- I knew I was going to need dialysis sooner or later. My doctors keept saying "take care of yourself, and you can postpone dialysis" I was in dienal for a long time. I thought I would never need it. But then they said "you're going to need dialysis now." My creatine was 11 or 8 I can't remember. They said unless your creatine went down to 6 within one day, we're going to put the permacath in. They kinda lied to me though. I got my blood tested on a friday and my creatine was really hig. they said if it went down a little by monday, I wouldn't need dialysis. It did go down, but they still started dialysis on me. And I never felt sick. So that didn't help with my danial. I'm 16. I started dialysis when I was 15. You're so lucky you have somewhat of a choice when to start dialysis. And you're lucky that you aren't starting dialysis at a younger age. Like 15 lol. And you're going to do PD right? I didn't even know about that option. Until I joined IHD. From what I hear PD is a cakewalk compared to hemo. It's better to start dialysis sooner than later.

Are you eligable for a transplant? If you are, get on the list asap. I was told I couldn't get on the list, even as inactive, until I started dialysis. psh.

[RichardMEL]

Or perhaps, I’m waiting to the point where “I” don’t have to make the decision; one day the decision may be made for me.

No. You don't.

I don't think you can quite conceive of just how dreadful you will feel when that time comes. I haven't been there and can't even, but I have *seen* it in my hospital unit. It is not pretty. It is not diginified and it is not something ANYONE wants!!!

I have seen people brought in in acute renal failure. They have no warning. They wake up feeling like death warmed over, and sadly that's pretty much where they are at.

YOU have had the luxury of knowing what is coming and being able to prepare in many ways for it.

You do NOT want to be that person wheeled into ER because you can't breathe and you would rather someone put you out of your misery because it is so bad just so that you can rationalise to yourself "I had to start because the decision was made for me"

I'm sorry but I just can't be any stronger on this point because it scares the living crap out of me.

[carson]

When I was 14 I was on PD for the first time - that was in 1982.  When I was 15 I got a transplant which lasted until I was 30.  One day I went to clinic and told my doc it was "time". I couldn't take feeling so bad any longer.  I felt as though I had had a death in the family - and in a way I guess I did because my beloved kidney of 15 yrs had stopped working. I chose to go on PD again.  I have a terrible, terrible phobia of needles and told them I would die before going on hemo.  So there I was on PD for 10 yrs.  My antibodies kept creeping up.  My parathyroid stopped working properly.  I was retaining water and feeling very unwell, and that's when they broke the news - I needed hemo.  A permacath was put in my chest a week later and I've been on home nocturnal hemo ever since.  That was 2 yrs. ago - 2 years that I could've been dead but they worked with me and here I am.  12 yrs on dialysis, no transplant in sight. Antibodies are at 100%.  I am now 43 and plan to live for another 43.  I guess it'll be on hemo, but I'm having the time of my life.  I feel amazing. I dialyze 3 nights on, 1 off for 8 hours very slowly.  Easy on the body.  Closest thing to transplant, and I don't take any of those dangerous drugs.  My parathyroid is back to normal. I work full time.  I have a high energy dog and a horse, both who need looking after and exercise.  I work out.  I eat what I want, drink what I want. I don't look sick.  I'm totally for this program.  Lately the hemo team has been hinting I should get a fistula in the event my line doesn't work or gets infected at some point.  I'm working on getting past my fear of needles because I look forward to swimming so much!!!  And I can't forget to mention I have the best guy in the world who is there for me all the time!

I know it's easy to say, but please don't think of it as a bad thing.  I haven't felt this good in years, and I bet you wish you felt like me!!
All the best to you.  I know you'll decide it's time soon.
Lisa

[kitkatz]

When I was 14 I was on PD for the first time - that was in 1982.  When I was 15 I got a transplant which lasted until I was 30.  One day I went to clinic and told my doc it was "time". I couldn't take feeling so bad any longer.  I felt as though I had had a death in the family - and in a way I guess I did because my beloved kidney of 15 yrs had stopped working. I chose to go on PD again.  I have a terrible, terrible phobia of needles and told them I would die before going on hemo.  So there I was on PD for 10 yrs.  My antibodies kept creeping up.  My parathyroid stopped working properly.  I was retaining water and feeling very unwell, and that's when they broke the news - I needed hemo.  A permacath was put in my chest a week later and I've been on home nocturnal hemo ever since.  That was 2 yrs. ago - 2 years that I could've been dead but they worked with me and here I am.  12 yrs on dialysis, no transplant in sight. Antibodies are at 100%.  I am now 43 and plan to live for another 43.  I guess it'll be on hemo, but I'm having the time of my life.  I feel amazing. I dialyze 3 nights on, 1 off for 8 hours very slowly.  Easy on the body.  Closest thing to transplant, and I don't take any of those dangerous drugs.  My parathyroid is back to normal. I work full time.  I have a high energy dog and a horse, both who need looking after and exercise.  I work out.  I eat what I want, drink what I want. I don't look sick.  I'm totally for this program.  Lately the hemo team has been hinting I should get a fistula in the event my line doesn't work or gets infected at some point.  I'm working on getting past my fear of needles because I look forward to swimming so much!!!  And I can't forget to mention I have the best guy in the world who is there for me all the time!

I know it's easy to say, but please don't think of it as a bad thing.  I haven't felt this good in years, and I bet you wish you felt like me!!
All the best to you.  I know you'll decide it's time soon.
Lisa

Come on over and sit in the corner with me. November 2, it will be eleven years straight on dialysis.  What a thing to celebrate!

[jennyc]

Hi Goofy,

When my Kidneys went kaput for the 2nd time i left it until i walked in to see my neph and he almost died of fright he told me i looked like death warmed up. I though I felt ok. I was still working doing everything I could. I actually didn't realise how bad I felt until that first week of PD training was over and I started to really feel human again. Now I've done it again. Pd is failing and a month ago my neph gave me the "choice" to go onto heamo- No choice really creatine up to 1100 so 2 weeks later i had my fistula put in.

We all feel for you, it's the hardest but most desperate decision to make. The way i explained it to my husband was that i felt like my body had betrayed me, the one thing i thought i could count on to get me through to the end of my days had let me down. So, I let myself grieve as though for a loved one then i try to find the silver lining before i run head -on into it. My neph gave me a month to think about the change, like you i was scared but i had to decide. so two days after the appointment I sent my neph an email. Pretty much told him what I was afraid of and why about the change but i had decided to go ahead and wanted it asap. He was the one who got me into the surgeon a week and a half later, the surgeon then had me on the list for the following wednesday (5 days after my visit to him).

I think PD is a nice easy start to dialysis. It's a good transition becuase you can do a lot and you can remain independant the whole way through. I have also done bags whilst driving in the car like another lady mentioned. I have also taken my cycler interstate (to melbourne) on a holiday. We load the boot up with solution and go (baxter would help but my hubby is very spontaenous!). I've heard of people camping whilst doing manual eschanges. they take water bottle to wash and lots of hand cleanser and off they go. I've even heard of a company in Canada who have an rv rigged with a Heamo machine that they hire out. So it's not all bad, dialysis itself may not be the ultimate solution but it does improve your quality of life.

[Savemeimdtba]

I have a hard time with this thread... cause on the one hand I feel horrible for you, I know it's hard, we all do.  But when you say you want someone to MAKE the decision for you, it kind of makes me mad.  I'm one of those who didn't know it was happening til it happened and it was AWFUL.  You feel terrible and it takes a long time to come back from that, I understand your in denial, but how many people do you need to tell you that it's time?   I'm 25 years old.. and I've made the decision to do PD and made my peace with it.  life's not over.  You're 53... all this time, I thought you were a young person (as in teenager, early 20's), you really have no excuse to be acting naive like this.  Life is hard... but it's gonna be even harder if you have a heart attack or a stroke because you want do what needs to be done to help yourself. 

I don't mean to sound harsh.. but I stay up at night thinking about you and the decisions your making. And it's hard because I can't make you understand what it's like... I can't convince you that it'll be better.  And I don't even know you, it's just frustrating. 

[girliekick]

Goofy-

Just want to let you know I still support you in your decision.

Much love
and always in my thoughts
Girl