My heart is on my sleeve...

[rsudock]

What is going on with me folks?...these last 2 weeks have been terrible. I haven't even wanted to get on IHD... Well I guess it is not b/c I didn't want to but I have been so damn sick. I have been having those dreaded migraines after MONDAY dialysis that have rocked me. After going to the ER I am walking around in this sleepy fog, with my arms and legs weighing like a thousand pounds...I can't do anything. I am freaking out about my blood pressure so my tech took me really low and then the next weekend I felt like sh** the entire time. So this past Monday I was so scared about the migraine coming back that I started to have an anxiety attacks. Gawd I feel like such a drug addict right now. I have a RX for everything....anxiety, pain, 3 different types of blood pressure meds, plus I still take transplant meds....Now the last 2 days my blood pressure has been normal, slightly elevated pulse, but my heart is fluttering out of my chest like a pounding...what now?

On Monday D I came home and just laid in bed and cried to my boyfriend. "I don't want to go on like this...I am becoming just a hollow shell of the person I use to be. What is the point of living if you can't be happy?" I am just so so sad. I don't want this to be my life. I know in my head I need to get control of myself and accept this, but I can't make my heart understand it. I understand now why people go to China to get kidneys. I wish I could learn to stick myself with needles then I could do home dialysis, but I am so afraid....I am never afraid but there is only a scared little girl here right now.

I had 10 good years without D. I was able to go to school and find true love and I know there are many folks on here that didn't or don't get those experiences or chances...and I should be grateful but why do we have to endure these things?! Is there really a God who exists who makes some people life like Hell, whilst others get smooth sailing? It doesn't seem fair to me...I don't think I can believe in a God like that...when I had a transplant it was so easy to believe but now....I guess that's why it is faith I suppose.

I don't want this life, I don't want to endure this, but I must and I will.... <insert sad face with big fat tears coming out of eyes>

thanks for reading my ramblings...I am hoping it pulls me together a bit....

xo,
R

[Des]

 

 

I don't have a lot of words of wisdom but please know that I am here for you and thinking of you ( all the way from across the world)

I really truly hope you feel better soon as you deserve it.

luv

[onestronglittlelady]

I wish I had a magic wand to make it all better. I hope you can find the answers you are seeking. I offer you love and hugs from my end. What you focus on becomes your life. I hope you can find some positive things in your life to think about. Know that people you have never meet care about you and are praying for you.

[monrein]

   you sound dehydrated.  Are they taking off too much fluid at that Monday session?  I hope they can figure this out.  Just Mondays?

[natnnnat]

Big hugs rsdock.  Have they tried adjusting stuff, your meds, your dialysis, your profiles?

[Deanne]

 

If it's just on Mondays, what's different? Is it because they're pulling more fluid off after the weekend? Are there any other differences on Mondays?

[MooseMom]

 

I soooo wish that I could help.

[boswife]

you precious young heart, you make me sad...  Important to keep your faith through it as we have many trials in life for sure.  This is something i read when i was struggling so badly with  something very reciently..... (not to go bible on you but phil 4:8,9)  "think on things true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admireable" etc..... " And the God of peach will be with you"  I was having a hard bout with  obsessing over thoughts, and i kept replacing them with "whatever is lovely".  That word became my mantra.....  I wish you peace and health...   

[DomJDavis1985]

have you thought about PD dialysis.... it requires no needles and you can have responsibility over your own treatment..it is also flexible to your schedule for the most part? i am thinking of starting it in the next few weeks

[YLGuy]

It broke my heart to read your post.  I am so sorry that you are having such a hard time right now.  Hang in there. There are much better days ahead for you. 

[okarol]

  My husband has been sick with migraines this week, they are awful. I wish we had a cure for them.
I agree, your fluid sound out of whack. Or maybe your electrolytes - so sorry you're feeling bad.
Sending lots of hugs - wish I could do more!
 

[AguynamedKim]

I'm so sorry, rsudock.  What comes to my mind is to try to focus on the issue (I know the symptoms stink and again, I'm so sorry), and see if there are some things you try to mitigate the symptoms.  I've learned from reading many people's posts here that there are going to be issues but many of them can be dealt with in time as they try different things to address them.  Whether it be your fluid levels going in (how much fluid are you taking in over the weekend and retaining?) or your fluid levels coming out (are they going too low on Mondays because it's perceived you've taken on more fluid than you've actually taken on?).  Perhaps you need to try to change up the dialysis (longer?  more frequent?) or the type of hemodialysis (I forget the different types of filtration) or even how fast they take fluid off which can drop your BP too far.  I know there are many other settings that can also affect your dialysis.  I wish I was speaking from better knowledge but I would start with what Monrein said about the dehydration - I remember several posts about headaches when they take off too much.  Perhaps persuade them to take off just a little less this coming Monday and see if that helps.  I know I tend to eat more over the weekend so I always gain that weekend weight (there's a joke about me being full of crap in here somewhere) so if I was being brought down to my "normal" weight, it would be too far.  My weight fluctuates a lot and I can easily "gain" 2 pounds over the weekend and "lose" it during the week (I've always been like this as I've struggled with my weight for years and before I developed any kidney disease).  I'm about 185 pounds now (at 5' 10") so I'm a better weight than I have been in a long time but I can still easily fluctuate that much weight-wise.

I really hope you can find what's causing the issue soon and we can hear about how you've overcome it.

[PatDowns]

I would be extremely careful before adjusting your weight upward on a Monday, especially if you are on conventional dialysis and that is your long period between treatments.  Most of us are prone to having more fluid build up during this timeframe.

Before doing this, have the "go to" RN in the clinic attentively listen to your lungs and heart for signs of fluid.  She should also look closely for physical signs of fluid build up - swelling in the ankles/feet, hands and puffiness in your face.  However, for me, fluid tends to build up in the abdominal area before showing in the usual spots.

That said, some people can tolerate an extra kilo of fluid.  Yet, you are already on multiple BP meds, so that would be a red flag from what I have learned over the years.


My thoughts would be that these could have an effect on why you get such horrible headaches on Mondays:

1) How closely do you follow your diet over the weekend?  More toxins that have to be removed over a short period of time = headaches, washed out feeling and more.

2) Are you going into treatment with more than 2.5 kilos of fluid? (You mentioned still taking tx. meds, do you still have good urine output?  Has your neph done a GFR to see check your residual kidney function?)

3) How long is your treatment time?

4) Your meds - do you take a certain combination of them on Monday mornings before dialysis than on other days of the week?  Most shouldn't take BP meds (unless to raise it) before dialysis.  If it starts to spike during treatment, the clinic should have something available for you.  Check with your pharmacist on how your meds interact when taken together.

If you aren't following your diet or fluid restrictions as closely as needed over the weekend (maybe because you feel that the residual function of your transplant is greater than it really is?), coupled with an inadequate dialysis treatment time (and a blood pump speed greater than 400), can cause horrible headaches.  The machine is making your body go through too much readjustment - too quickly, especially if your run time is less than 4 hours. 

Somethings to consider and bring to your nephrologist's attention.

[jbeany]

 

I found that regardless of the day, I just could NOT take off over a certain amount without feeling like crap and crashing.  I had a set level that worked for me that was quite a bit lower than what the center said was an acceptable amount to gain over the weekend.  If I didn't want to feel like a wreck for Monday and most of Tuesday, I had to cut my fluid in half over the weekend.  If you are coming in over the weekend with a liter or more over what you take off on the regular days, you might want to try doing a drastic cutback on fluids for one weekend to see if it helps.  Not fun, but better than migraines.

Hope you find something that helps.

[kyshiag]

Just know that people care about you.  This life is worth living even if for the boyfriend who knows you need to cry on his shoulder sometimes.  I'm just a caregiver and I tell my husband all the time, cry if you need to.  You have every right.  I also have to remember that just because we are going through this together in no ways means that I am going through what he is going through.  So I don't even want to pretend I know what you are going through but I do know you need time to mourn.  Take it.

[fc2821]

   rsudock,  I know I am not familair to you.  It has been some time since i've been back at IHD.  But given that just know that if there is a way to help you I will.  You see we are in this thing called ESRD and dialysis together.  Not alone.  Together we can get through it. 
    You have gotten some great advice here.  Are you taking all your meds? getting as much rest as you can?  I know it is hard, I hve insomnia myself.  Following the iet is rough but you can do it.  That accounts for quit a bit of how you feel and will feel after treatment adn during it. 
     Just don't let the fact that youare down get to you.  We all go through this and you can get through it.  Remember if you need to talk to know anything we are all here for you.   

[rsudock]

wow wow wow thank you folks for the outpouring of LOVE!! I am blessed to have such a wonderful online community of supporters. I have to let you know I finally found ONE blood pressure med that is keeping my blood pressure under control. (thank goodness for Norvasc) The last couple of days it hasn't been over 130!! Everyone is right about the diet I do tend to be pretty good about the diet and on Mondays I do come in needing to take about 2 liters off, which doesn't seem that much but I guess my body does have a hard time going without dialysis for that long. So I am just going to have to buckle down even more and watch the liquids...but man it feels like you are dehydrating ya know? :p  Aaron did say he would get trained to do home dialysis with me, but I am scared b/c I don't want to turn him and our home into some medical place. I do take in account that he is young and that is a lot of responsiblity for him. (not that he couldn't do it or doesn't want to but wow what a burden caregivers have to carry)

anyway I think on mondays no matter how much fluid I have I am only going to take liter and a half off. my dialysis tech has been good at turning down my pump speed down but of course she makes me stay on longer so that seems to help too! so on monday it is going to be 3 and 1/2 hours at 350 speed...

MOST IMPORTANT NEWS...the night I wrote this I took this sad energy and refocused it on something positive. I made a team for the 2011 kidney walk in Cleveland, OH!! I am halfway to my goal of raising money to kick kidney disease's ass!!!     It has made me feel a lot better giving back to our community even if it is in a small way. I am not going to let this stupid disease win!!! I will rise above because I ALWAYS land on top!!!

YOU GUYS ROCK!!!
xo,
Rachel

ps-if you want to donate to my team PM I will give you the info!!! xoxo

[MooseMom]

Good for you for channelling you anger toward a positive accomplishment.  That's not an easy thing to do; it's much easier to wallow and become inert.

There is no perfect way to do dialysis.  There are pros and cons to every modality, and sometimes you choose one way thinking it will be a good fit, but it ends up not working well at all.  I would encourage you to think a bit more about home hemo; you don't have to make a decision right this instant, so you have time to do some research.  While some people understandably don't want their homes to be tainted by reminders of dialysis, others feel much more comfortable and safer in a familiar environment.  One guy I know says he likes home hemo because he can just do it in his underwear if he wants.   You seem to be a very capable and intelligent young lady; you probably could set up the machine in no time flat once it becomes routine.  And the thing is, you may feel so much better.  If you try it and decide it's not for you, they can't force you to continue.  I know of quite a few people whose lives have changed for the better once they've brought D home because it gives them a feeling of having more control over a situation that so often robs you of a normal life and of normal choices.

The important thing is that both you and your clinic keep working to find that magic combination of speed, etc that gives you the best health. 

[fc2821]

rsudock   may I say    about your kidney walk plans. and when you said, "I am not going to let this stupid disease win!!!"     It is not easy but it's a fight worth fighting.   

[rsudock]

hey loves just wanted to let you know I have raised $900 out of $1000 for kidney disease!!! waa hoo!!!   

About the fluttering heart...I went to the ER and they said my anemia is low. (8, down from 16) and that since I stopped taking the metroprol cold turkey it causes an elevated heart rate. so I have been taking the metroprol and the flutter is better. so a $1000 for an ER visit where I sat in the hall way for 6 hours for a pill! blah!!!!

the mirgraines well I see a neurologist April 15 so we will see....I had a headache after D this week, thankfully it didn't turn into a migraine, but the doc gave me Reaglan for it though.

xo,
R

[Brightsky69]

Sounds like things are look up. 
I use to get really down on dialysis too. I always use to tell my self God wouldn't be putting me thru this if he didn't think i could handel it.

[fc2821]

hey loves just wanted to let you know I have raised $900 out of $1000 for kidney disease!!! waa hoo!!!   

About the fluttering heart...I went to the ER and they said my anemia is low. (8, down from 16) and that since I stopped taking the metroprol cold turkey it causes an elevated heart rate. so I have been taking the metroprol and the flutter is better. so a $1000 for an ER visit where I sat in the hall way for 6 hours for a pill! blah!!!!

the mirgraines well I see a neurologist April 15 so we will see....I had a headache after D this week, thankfully it didn't turn into a migraine, but the doc gave me Reaglan for it though.

xo,
R

Glad you know wht is wrong dn soudns like you are geting back on track.   

[AguynamedKim]

So any change to the dialysis routine rsudock or did it just not evolve into the nasty migraine this time?  Either way, I'm glad you didn't have the migraine and I really hope you can keep going in that direction.  Sorry you hit the ER again but better to be safe.  Hopefully your heart rate gets to where you're feeling good about it.  Great job on the kidney walk - I look forward to sending you a PM to get the info for it and we'll see if we can't get you to that target.

[rsudock]

So any change to the dialysis routine rsudock or did it just not evolve into the nasty migraine this time?  Either way, I'm glad you didn't have the migraine and I really hope you can keep going in that direction.  Sorry you hit the ER again but better to be safe.  Hopefully your heart rate gets to where you're feeling good about it.  Great job on the kidney walk - I look forward to sending you a PM to get the info for it and we'll see if we can't get you to that target.

Hi Kim no change to the dialysis routine but like a half an hour before I was suppose to get off I made them turn the UF off...I am wondering if that had anything to do with it. My heart rate is down to 80 since I started back on the metoprolol...let's hope things are going to keep in the right direction!!

xo,
R

[rsudock]

well I think I got this mirgraine figured out...I am really trying to watch the fluids on the weekend and on Mondays I set the goal for 2 liters and then a half an hour before the end of treatment I shut the UF off....I still come home with a little headached but it hasn't turned into a full blown migraine the past 3 Mondays!!!! YEAH!!! Let's hope I got this under control!!!!

xo,
R