Does this get any better?

[Quickfeet]

My creatine fluctuates between 3.5 and 4.5. GFR 15% to 20%. I feel miserable all the time. I take twelve prescriptions. when I am not sick, I feel like I have the flu, when I have the flu I feel like my life is being drained out of me. I'm only slightly anemic. I take a pill to keep me from thinking about death all the time, but it makes me vomit daily. I can't go up the stairs with out taking each step slowly. I have gout and other joint problems. I could continue, but I think most here already know the other affects on the body. 

Do I beg my doctor to start me on dialysis, or wait until my kidneys are much worse? Will it even make me feel better? From what I have seen here my numbers aren't that bad. I feel like a cry baby. I'm not nearly as strong as i was.

Will PD get my creatine below 2? If I feel this bad at 4 how much worse will I feel when it hits 8 or 10?

Sorry, my post isn't well structured.

[RichardMEL]

In my view the choice about starting dialysis is as much about quality of life as it is about lab numbers like GFR or creatanine.

You're saying that your quality if life is going downhill right now and you feel miserable all the time, specially feeling ill. That would be a major reason to at least discuss dialysis with your neph. They may not agree given your GFR is still fairly high, but everyone is different. Perhaps there are some unintended reactions between all those meds you're on? I am not sure.

Numbers are just numbers. It's how you *feel* and how it is affecting your ability to live your life that should also be taken into account. I know you probably want to do anything but start dialysis, but it may well be that it will stabalise you and allow you to not feel so ill/tired most of the time.

[Quickfeet]

Thank you Richard. I want to start PD as soon as possible because I pray it will make me feel better, but I'm afraid things will only continue to get worse even with PD. I'm also afraid that I will become a burden at work if I don't go on disability soon. I use to have good and bad days, now I only have bad and worse days. Sometimes I think I'm just being a baby. Other times I wonder how I'm doing as good as am keeping my life from falling apart. Every time the change my meds I'm messed up for a week. One day I went to work with out taking a shower, didn't comb my hair and didn't wear my uniform. I didn't even care emotionally. Mentally I was thinking, "Oh, crap. This is not good."

[monrein]

The time before some of us start D is the most difficult there is as so many things are happening and changing at once.  And we're definitely NOT crybabies for feeling the awfulness of it all....mentally, physically, emotionally....you name it, things are upside down.  We're full of toxins, dealing with losses and things can look bleak.  This often improves if we get over the initial hurdles and start getting adequate dialysis.
Thinking of you and sending hugs.   

[MooseMom]

Quickfeet, once my creatinine went above 3.0 and my egfr went below 20, my neph started talking about dialysis.  I don't know what your neph is waiting for, especially since you feel so unwell both physically and emotionally.  I've got my fistula, so I'm as ready as I can be.  I think this is the perfect time for you to start talking to your doc about dialysis.

From what I have read on this forum, the first few months on dialysis are not easy, so you will probably need to be patient with yourself until you start to feel better.  I really do hate thinking of you suffering this much!

There are many people on this forum whose numbers are worse than yours but who feel better than you do, which goes to prove Richard's point that numbers eventually become somewhat irrelevant.  It doesn't matter if you're a "little" anemic if each day is worse than the one before.  If your quality of life sucks, then it's time to investigate what can improve it.

Re gout, I used to have awful attacks, but now I take allupurinol each day and have not had an attack in years.  Could this help you?

[Sunny]

I know how you feel. I am pre-dialysis with 15% GFR.
Lately i am made to feel maybe things are all in my head and i make too much of my kidney disease. OMG, if people only knew what it was like, they would probably jump off The Golden Gate Bridge. (i jest). Like you, i am not sick enough to start dialysis so i plod through my days hoping tomorrow will be better. I wanted to let you know it's NOT all in your head. Your complaints are real and valid. Is it possible to get a reduction in the physical activity you are required to do at work? If your doctor signed off on it, they would be required to accommodate because of the Disability Laws.

[MooseMom]

Lately i am made to feel maybe things are all in my head and i make too much of my kidney disease. OMG, if people only knew what it was like, they would probably jump off The Golden Gate Bridge.

Sunny, nonononononononononononononono!  Don't you dare EVER let other people make you believe something that just is not true!  Keep reminding yourself that they do NOT know what it is like!  They have absolutely NO RIGHT to dismiss your illness so cavalierly.

[Quickfeet]

My ex-girlfriend was one of those "all in your head" people. When I first started taking cardura I would collapse on the way back from the restroom at night. She would say, "If you had tried at all, you could have made it to the bed." She had other things to say like "drama queen" etc. The whole time she is saying these things, I literally am unable to move  . I will stop there. The things I put up with because I loved her are too embarrassing to say. She had problems. Now I feel like I wasted the last bit of good health I will ever have on her  . I know I have to change my out look, but the last few months it has been almost all I can do to not kill myself. I don't want to die. I don't have any reason to die. I'm just crazy . I'm taking Prozac and welbutren they help, but at the cost of vomiting every day.

[monrein]

Sounds like you're far better off without her, things are rough enough without being told that if only we tried harder we could whip these poor bodies in line.  "Normies" can really struggle to have a clue about this stuff and most of the time I'm glad they are so healthy they'll never really "get" it.  Having said that I do wish they try a little harder sometimes to educate themselves about what can be expected.

It sounds as though the black dogs (of depression) are still nipping at your heels and have you thinking at times that leaving permanently is the only way out.  Please consider talking to your social worker (yeah yeah I know they can be useless but some can be quite excellent also) and see if you can find someone to talk to about this stuff.  Also ask your doctor if anything is available to help with the effect of those meds on your stomach.

Please know that we care.   

[sullidog]

I'd beg him about dialysis, I felt the exact same way but dialysis took care of that.
Troy

[MooseMom]

Chronic ill health is the quickest way into depression.  If what you have most to look forward to each day is counting how many times you vomit, life truly is not worth living, so it is not terribly surprising that you feel as you do.  Your body is bombarded with toxins, and this cannot be good for your neural chemistry.  It's good that you are taking action (via meds) to battle depression, but logically you cannot expect them to be of much use if they end up down the toilet quite literally.  Perhaps your doc can prescribe some anti-nausea med that will help keep the others down.

[Quickfeet]

Thanks Sullidog, that gives me some hope.

Moosemom, I usually just "dry heave." So far I haven't seen any pills come out, but that acid can't be good for my teeth or throat. I will call tommorrow and ask to try a different antidepressant. Hopefully it will work better and without all the vomiting.

I had surgery scheduled march 29th to put the PD tube in my stomach, but my neph had me cancel it because my kidney function went up. Normally I put on a happy face and tell her I'm doing OK because I don't want her to think I'm a complainer. But I realized that I had to tell her everything. She sympathized but said that Medicare and insurance companies were strict about when to start dialysis.

Sunny I feel bad that you are in a similar situation. But it is good to know that I'm not alone and not crazy. I'm afraid to ask to reduce my hours, because they might realize how bad I am. I think its a pride problem. I don't want them to pity me. When I have to vomit, I just say I have to go to the rest room. Plus I can't afford not to work full time.

Thank you everyone for your input and support.

Thank you to everyone that help keep ihatedialysis.com going. Thank you moderators for keeping order. Thank you posters, i have learned so much from all of you over the past few months.

[Joe Paul]

IMO - Crying does help you feel better, after you cry, you can then have a clear enough mind to accept your new lifestyle, and try to make the best of it. Laugh when you can, cry when you want, there is no shame in tears. Good luck, Joe

[MooseMom]

Quickfeet, I understand that we are social animals and that in our daily lives, we need to behave in such a way that makes it possible to live and work successfully with other people.  That said, though, sometimes we can place too much importance on what others think of us when, actually, others are usually too busy with their own lives to spend much time thinking about us.

In my very humble opinion, you are doing yourself a disservice if you do not tell your doc what is going on with you.  She probably does not possess either a crystal ball nor a lie detector, so if you do not tell her how you are feeling, she will not be able to give you the treatment you deserve.  You are not "complaining", rather, you are giving her valuable information that will enable her to do her best job.  It is only fair that you help her do her job.

As for your workmates, I understand you not wanting their pity, but their pity would probably last all of 2 seconds before their minds move to their own problems in life.  What you may define as pity is probably really sympathy, a very human emotion.  Sometimes if you trust people with the truth, they reward you with understanding and assistance.  I don't know your co-workers; they may be a bunch of miserable gits, for all I know, but don't let their "pity" stand in the way of your good health.  You deserve better.

[murf]

I remember that just before dialysis, I was so sick one day that I couldn't get out of bed to telephone that I would not be into work. Once I started dialysis my well being improved. It ain't no cup of tea but at least there are days where you feel OK. As Richard says number are not the be all. It's how you feel that counts. If you think you are ready for dialysis, insist to your neph.

[Lisa]

Hello quickfeet,   

In my very humble opinion, you are doing yourself a disservice if you do not tell your doc what is going on with you

I agree with this.  I think if you feel that poorly, you should reschedule your PD surgery an have a permacath inserted to start hemo right away...
You, unfortunetly will not get better and the sooner you dialyze the sooner you will feel better. 

If you begin while you are 50% then it will take less time to get you feeling well!!

[Quickfeet]

As for your workmates, I understand you not wanting their pity, but their pity would probably last all of 2 seconds before their minds move to their own problems in life.  What you may define as pity is probably really sympathy, a very human emotion.  Sometimes if you trust people with the truth, they reward you with understanding and assistance.  I don't know your co-workers; they may be a bunch of miserable gits, for all I know, but don't let their "pity" stand in the way of your good health.  You deserve better.

The people I work with are great, for normies. They don't baby me, but if I say I can't do something, we find something I can do to help them get the task done.
Moosemom, I'm taking Uloric and prednisone for my gout. It has gotten better.

[MooseMom]

Well, I'm glad to hear that your workmates are supportive.  All the more reason to trust them and not let pride get in the way of you getting the best treatment possible.  I'm sure that they care enough about you that they want more than anything to see you as well as possible.  I'm sure they don't want you to suffer. 

[MooseMom]

If "normies" is the word used to describe people with normal renal function, what word describes us?  The "renally challenged"?  The "abnormies"?  The "toxics"?

[clappedout]

Like you before I started PD I was was itchy ...sick...gouty..( if there is such a word as gouty ??) and you tell em hun..if you aint had gout you aint felt anything like pain LOL. My neph kept my kidneys going to the best of his abilities for 5 years nearly and then I thought ..what a guy!!!!!!!!...now in hindsight I think I would have run him over with his own Dialysis trolley.
On a serious note ..push to these people how you feel and what it is doing to your life. i know the rules are different in the States than here in the UK but still if you make enough noise etc etc. I feel for you I really do, I have had PD for approx 1 month now and am still waiting for these .....(you will feel better soon)....results everyone tells me that is gonna happen...hang in there kid you aint on your own..so I think you need a Steve cyber hugzzzzz... x

[Quickfeet]

MooseMom, we are toughies! I once had a customer tell me he was going to file a compliant with the lottery commission because he had to cross the street to cash in his $100 lottery ticket. I wish that was my only problem.

Also, I broke down at work march 31. I called my neph and she filed paperwork the next day. I'm now on medical leave and I will be starting PD soon.

[MooseMom]

MooseMom, we are toughies! I once had a customer tell me he was going to file a compliant with the lottery commission because he had to cross the street to cash in his $100 lottery ticket. I wish that was my only problem.

Also, I broke down at work march 31. I called my neph and she filed paperwork the next day. I'm now on medical leave and I will be starting PD soon.

Oh, I'm not tough.  Not in the least.  But I'm not going to apologize for that.  I am what I am.  But like you, I find it easier to put "problems" in their proper perspective.

I am so sorry that it took a breakdown for you to finally get what you need, but sometimes it does come down to that.  You shouldn't have to beg to be given the chance to feel better, so I am very glad that your neph is now getting it done.  I'm grateful that you are on medical leave because now you have a chance to regroup and do what you need to do.  You are truly a toughie!

[carson]

Are you 100% certain its the  meds that are making you sick? As my creatinine rose I became nauseous and threw up every day after breakfast. Once the PD started clearing the toxins the vomiting stopped and once my body was cleaner I felt a MILLION times better, maybe even more! Wait, you'll see!

[Quickfeet]

Carson, I agree with you. Before I started the welbutren I vomited at least once a week. But now that it is daily, my neph feels it is the medicine. I hope pd works, it will be nice to see what my upstairs looks like .

MooseMom, I feel like a wimp (sometimes a big baby). There are so many people on this board that have it way worse than me. Yet I still manage to complain.
Dealing with kidney disease is tough. So even though you don't think so, you are tough. How tough do you think Rambo would feel if his kidneys didn't work.

It's nice to know that I am not alone, but I wish there wasn't so many of us.

[MooseMom]

MooseMom, I feel like a wimp (sometimes a big baby). There are so many people on this board that have it way worse than me. Yet I still manage to complain.
Dealing with kidney disease is tough. So even though you don't think so, you are tough. How tough do you think Rambo would feel if his kidneys didn't work.
It's nice to know that I am not alone, but I wish there wasn't so many of us.

One thing I've learned..your own suffering should never be compared to that of someone else.  If someone else seems to be suffering more than me, that fact surely doesn't make me feel better.  It is what it is.  Your suffering is painful TO YOU, and that is all that really matters.  And yes, everytime I see a newbie introduce himself to IHD, it makes me feel bad.  I try to avoid that particular forum.  Perhaps there is strength in numbers...