A Bit Discouraged/Rant

[joyfulmother]

When I first started PD, the exchanges took some time but not much else changed.  I had energy to do what needed to be done and I felt pretty good.  Now I am one year and three months into it and I feel awful.

Earlier this week I started having kidney pain.  The doctor had me come in and give a urine sample and prescribed antibiotic.  Not much of a urine sample - that's about gone too.

The lack of energy is the worst.  My hubby does the grocery shopping because I can't make it the whole way through.  Shoot, my husband does everything and I feel bad about that.  To make it even worse, my affections are not even there for him and I don't know how to change it.  I love him of course.

I feel like a hypochondriac.  Well, maybe not a hypochondriac because they just imagine something is wrong when it's not.  But I do get tired of calling my nurse all the time - I don't want her to think I am a problem.  I'm also tired of not knowing if every little ache or pain is nothing or something.  For example, for no reason at all I started having pain in my right calf.  Right away I wondered, "what if it is a blood clot"!?  Good grief - I didn't use to think like that.

Instead of high blood pressure, I am battling low blood pressure.  I even passed out for the first time a couple of weeks ago.  That was scary.  I take midodrine sometimes up to 4x day.  Oh and I'm really having a hard time eating right.

There.  I think I said it all.  I knew you guys would at least understand.  If you need to kick my back end, then so be it.

Thanks for listening.

[paul.karen]

Sounds like a tough time Joyful.

The whole lack of energy and feeling down sounds like it could be from low hemoglobin.   How are your numbers in respect to that.

As for bugging the nurses that is what they are there for.  To answer your questions.   And since your urine output is becoming little to none are you taking enough UF off each night?  Maybe try a stronger bag?

I hope things change for the positive for you.

[Lisa]

I'm sorry to hear you are feeling poorly.   
Have you had a PET test to decide whether yu dialysis is adequate?   Is you bloodwork normal (ish) 
Your appetite is poor, are you getting enough nutrients, could you be tired from that?

Unfortunetly depression can exhaust you and cause actual physical pain.  Are you on any medication for you mood?  I  just wanted to offer a few suggestions that came into my head right away.  I am sure others here may some more suggestions for you soon. 

Sometimes just letting out your fears and frustrations can help.
 I do hope you are feeling back to your normal self soon enough and this feeling will pass.

[Jean]

 I so hope you feel better soon. There are lots of medications out there to help you if in fact, your problem is not with the PD. Have a little chat with your Dr. about this. Dont worry about calling the nurses, they are getting paid you know, and that is what it is for. I understand how you feel having Hubby do everything. At my house, I do everything, and I do mean everything. Even tho I have told him again and again, my spousie is in for a rude awakening . Just be glad he can and will doit all and I hope that is only temporary for both of you.

[monrein]

Your back end doesn't sound like it needs kicking in the least.
 I'm more wondering if you are getting adequate clearances and all of the things previously mentioned need to be checked too.  Hemoglobin, iron levels, blood pressure (you aren't taking any bp meds I hope),  your protein levels (remember we need more while we're on D),  phosphorus and potassium levels, and of course depression or mood.   Are you hydrated enough?  I suggest doing a search on here about food, renal recipes and so on...even if the food gets boring, it is so important to get the right nutrition and avoid the things that cause problems in both the long and the short term. Keep bugging the nurses and doctors about feeling unwell.  You may be feeling lousier also if your residual function has declined quite a bit more since you started (there's the inadequacy bit again).
You mention your lack of affections for your husband.  I'm guessing that you're talking discreetly about sex and we have those threads on here too.  Lack of desire is a very common problem for many people on D and sometimes we just have to help our partners out and be creative in this area so that we can keep the intimacy and closeness that we (and they) want and need.   
You do sound exhausted and I hope you can find some solutions to the various issues you've raised.   We want you to be joyful again.   

[jbeany]

If those were my symptoms, I'd be screaming for epo and an immediate dose of iron.  Every time my hemoglobin dropped and my iron levels bottomed out, it felt like my kidneys were on fire, in spite of the first idiot neph I had who insisted that I couldn't be feeling anything, since "failing kidneys don't cause pain."  (Like hell!)

It sucks having mystery symptoms, too, especially when we have so many possible causes.  At any given time, is it a chemical imbalance that comes with kidney failure, or a reaction to something that's part of the dialysis process, or a lack of adequate dialysis, or a side effect from some medication, or, or, or!

 

[galvo]

JM, I've nothing to add to the above replies except

[Meinuk]

Welcome to the world of chronic disease.  It has been a year, and you are mourning the losses and feeling the pain.  First of all, take all of the medical advice offered. A PET test, a full CBC to check Iron etc, everything that can keep your body as finely tuned as possible.  (this also means some physical activity - I can't tell you how many times I had to drag my butt off the sofa for a short walk, just to get out of the house, and get some natural vitamin D in the sunshine)  Just a little bit of exercise (even if it feels impossible) can make a difference.

As far as hubby doing the shopping, I get it.  I love grocery shopping (it is almost a fetish for me) And I understand if this wasn't the original role in your marriage.  But, we always need to adapt.  I was at a PKD event earlier this month and in one of the speeches, a woman talked about her grandparents relationship. (it was her grandmother who was on dialysis) Her grandfather took her aside before her wedding and told her that in a marriage, you have to give 95% to your spouse.  They had a happy marriage, and they both gave as much as they could to each other, as they were able. I was really touched by that. So, you feel guilty that he is doing so much for you?  My guess is that he is doing it because he loves you and that to me, is beautiful.  It can also be incentive for you to do more for him when you can or just let him know how much you love him. - you can take that any way that you want, I am not married.  But I am a hopeless romantic, so there is that....

I don't know your original diagnosis that brought on the CKD, but it may be time for an overall physical. Often, we focus too much on our kidneys and the whole package gets neglected. (I have a whole speech about taking care of our teeth!)

I hope it all works out.  It has been a long, cold winter and Spring is finally here.  CKD is a rollercoaster, and right now, you are in a dip on the ride.  I hope that you are on the upswing soon.

[okarol]

How often do you get labs done? Just curious what your RBC and hemoglobin has been lately.
I am glad you have a good hubby - they can be hard to find!
Best wishes to you. 

[MooseMom]

There is a whole team of people who are working to keep you feeling your best, but if you are suddenly not feeling your best, how are they going to know this unless you tell them?  Your calls to your nurse are not a problem, rather, they are your responsibility.  I'm sure you've heard the whole speech about how we patients should be active in our own care.  Well, calling your nurse when you have a problem is being active in your own care.

Kidney failure robs you of your ability to know your own body.  It's as if your body has suddenly started speaking in a language you have not been schooled in, and it can be scary and frustrating.  But it does seem that your body is telling you that it is not happy with the results you are getting from PD, and this would be the perfect time to have all the tests done and evaluate the results.

At the center of intimacy is communication.  Marriage is sterile without it.  Have you told your husband what you have told us?  If he were ill, I'm sure you'd go beyond the call of duty to pick up any slack.  His doing the shopping is just him picking up the slack for you.  It's really rather intimate.  Go and find out what is at the center of your malaise, and you will probably find that it is temporary and treatable.  Good luck, and please do keep us informed about what you find out.

[Brightsky69]

I know how you fel. I've been on PD for a little over a year. (MY 2nd time on PD)
Normally I feel pretty good. But here lately I have been waking up several times during the night. No fun! Iam starting to get use to it. I wake up and take a drink of water and force my self to go back to sleep. Half the time I do get worn out during the day.

Let you nurse and doc know what is going on. They are there to help you feel your best. I kow my nurse will notice stuff going on with me that I don't even notice. She see my face getting fat and say "you look like your carrying fluid...do a red bag tonight" I do a red bag and start to feel better.

[Quickfeet]

I feel like a hypochondriac too . And a burden on everyone around me. Let your husband know you appreciate him every chance you get. I got too caught up in all my problems that I forgot to do the little things for my GF.

[calypso]

Calf pain sounds like cramping from dehydration and/or hypokalemia (low potassium)

[murf]

I find that low blood pressure makes me extremely tired all the time. Whilst on hemo, I would go low but by the next day, I would be back to normal. On PD, If I take off too much fluid, I continuously remain effete. Just like you described, I couldn't even do the shopping. Sometimes, I found it hard to get around the house. I really do empathize how you feel. Perhaps, put in a little less fluid so you take less off? I also found having a rant (whinge in Oz) helped a lot.

[looneytunes]

Oh Joyful....I read your post to hubby and he was amazed that there is someone out there that feels like he feels.  He also hates it that I have to do everything for him.  He normally doesn't have the energy to even go to the pharmacy to pick up his rx's.  There are days he sleeps as much as 12  to 14 hours and still feels exhausted.  And all the little ticks and twinges he gets, he worries about.  Most of his have been tracked down to some imbalance in his chemistry or low hemoglobin.    I sure hope your neph and nurses can get you back on track and feeling better. 

[murf]

It's strange that just knowing that there others who are going through the same hell as you seems to help. As Von Daniken would paraphrase: "We are not alone".

[Meinuk]

This really is a case of it is always darkest before the dawn. As I type this post, hopefully you are home after your transplant!

The thread about JoyfulMother's transplant:

http://ihatedialysis.com/forum/index.php?topic=18409.0

[MooseMom]

Isn't is amazing how quickly things can improve?!!!!!