Head Games

[MooseMom]

Despite having renal function that's poor enough to land me on the tx waiting list, I haven't yet experienced any particularly difficult physical symptoms of CKD (the psychological obstacles, though, have been enormous and difficult to cope with).  So, last month I was feeling pretty well walking into my neph's office for my usual lab report.  When I saw my numbers, I realized that for the first time throughout this whole ordeal, my hemoglobin had dropped to below 11, ie, 10.9, and my egfr is now 14 which means I'm officially at CKD5.  Ever since that appt, my butt has been really dragging, and it's all I can do to stay awake during the day.  Remember...I was feeling just fine before I saw that number, 10.9.  I suspect that my head is playing games with me and that it has convinced me that I'm perpetually exhausted.

At what point did you all begin treatment of anemia?  My neph has not mentioned epo just yet.  A little over three years ago, I was having "female troubles" that resulted in massive bleeding and a hg of 7.9, and for several months, I did take epo, so it's not like my neph is ignoring me.  I know that epo is effective but that it also carries risks.  I really can't suss out whether I am really feeling the effects of anemia or if it is psychosomatic.  Based on the evidence, I'm thinking it's the latter. 

Have any of you experienced any psychosomatic symptoms such as this, and what did you do about it, if anything?  Should I say anything to my neph now, or should I just wait until his clinical judgment compels him to begin treating me?  I really don't want to start down the Epo Path if I don't have to, but that's just it....I don't know if I have to just yet.

Thanks for any thoughts/opinions.

[cattlekid]

Hell, I'd kill for 10.9.  I usually am somewhere between 8-10.  Not looking for a badge of honor, but it truly doesn't seem to bother me.  I guess I've been at this point for so long that I don't know any better.  I'm on 12,000 units of EPO once a week.  I think everyone is affected differently by their HgB level. 

[big777bill]

 MM I have been on epo for 2 years prior to starting D. My HG is always below 10 even with the epo and iron supplements and infusions.

[Deanne]

No real answers but 

I often wonder myself how much is head games versus reality. How does one separate the two since you can't separate your head from your body to test out your theory that it's all in your mind? My butt drags, too and I'm at a similar egfr. I don't know what my hemoglobin is right now. I have a neph appointment next week. The end result is the same. Your butt is dragging. Tired is tired, whether the cause is physical or phychological.

[okarol]

Jenna is at 10.5 but when we asked the neph and transplant team about Epo, they said it is now being strictly controlled and barely available. They said perhaps a transfusion would be in the future, which stunned me. It can increase antibodies (as if Jenna's 100% is not enough!) and Epo was the miracle drug in the past, before they realized folks were having blood clots and heart attacks. As of last month the Food and Drug Administration approved that new drug called Omontys (peginesatide), developed by Affymax Inc. of Palo Alto, for use by adult dialysis patients with anemia caused by chronic kidney disease. So far I don't know anyone who is using it.
For now Jenna's anemia is slowing her down, especially during her monthly cycle. But the doc says the is "fine."

[malaka]

I've been given EPO since I started dialysis, but not before I started.  Why?  I don't know.  But, the EPO shots (btw, getting i.v. shots is the one and only 100% good benefit of dialysis I've found -- they don't hurt at all when injected into  a plastic tube!) have bumped my hemoglobin up to a little over 11 and I feel much better.  I was in high 9's, low 10's.  How much of the feeling better is due to increased hemoglobin and how much is due to my "miracle" 35 pound weight loss, I don't know.  But despite the boredom of dialysis (buy an e reader unless you're a daytime/afternoon TV fan) I feel much better.  I even cut the grass yesterday.  A month before I started dialysis, I could barely walk up stairs and needed a rest at about stair #8.  I don't fall asleep during the day any more, and actually remember things now.   

From my reading, Jenna is "in range" so they probably wouldn't get paid to administer it to her, and you'd end up footing the bill for the drug.
 
I haven't heard a thing about any EPO shortage.  I'll have to look.   As for risks, I doubt there is a drug entirely free of risks.  Clotting risk can be simply treated by coumadin/warfarin which I take despite the increased clotting time when the needles are withdrawn. 

MooseMom--I didn't get buttdragging tired all at once before I started diaylsis.  It became progressively worse.  I think you may be right in your self-diagnosis of psychosomatic reaction to the news.  At the end, I was a 12+ hour per day sleeper and sometimes woke up sitting upright at my desk at work.  But that took months of declining kidney function to reach that point.

[MooseMom]

Okarol, I am made uneasy by what you were told about epo now being "strictly controlled and barely available."  Is that true?  Is that because of the new bundling rules?  If that's the reason, does that also apply to those not on dialysis? 

It's my understanding that peginesatide will be used only by dialysis patients, not by pre-D people.  I guess for us, Procrit is the drug of choice?  I'd be very interested, though, to see if any IHD D people are using it yet; I think Amgen has a contract with the LDOs, so maybe the smaller, independent clinics will be the purchasers of this new anemia drug?

Deanne, you are right...tired is tired, and in one sense, it doesn't matter what is causing the fatigue.  But if the problem is psychological only, then using a drug with potentially bad side effects has to be called into question.  I'll be interested to know what you find out about your own hg level.  Do you feel fatigued enough to ask about treatment?  If you find that your hg is below, say, 11, would you want to begin epo?

Cattlekid, yes, you are right that each patient does seem to have a point below which they become symptomatic.  I've read from other IHD members that they really start to suffer below a certain hg level...trouble breathing, etc, and I can't say that I am anywhere near that.  I have to marshall my energy throughout the day, but I've been having to do that for a long time now, and that's not that big of a deal in the grand scheme of things.  That's why I suspect that I get really tired just from visualizing those numbers on the page.  LOL!

Bill, what is your energy level like?  With epo and iron but also with low-ish numbers, are you feeling energetic enough to get through the day without any real trouble, like falling asleep in your spaghetti?   

Malaka, thanks for your response.  I tend to agree with you...I think it may be psychosomatic in my case, but on the other hand, I don't want to be in denial, know what I mean?  I am not yet a 12 hour a day sleeper!

[paris]

Not a shortage of Epo but it has been reevaluated regarding side effects (strokes, heart problems)  and the range of acceptable hemoglobin has been changed.  A few years ago, anytime my hemoglobin dropped below 10, I would get a shot.  This was usually weekly.  Neph even gave me home test kits (experimental but very accurate results).   Then all a sudden, range was changed and at 9.2, I was within range and no more shots.   Now, post transplant, my levels are 10ish and I am good with that.    Things keep changing in the kidney world.  Fortunately, IHD is always on top of the newest medications and treatments.       

[jbeany]

MM,
5 years ago, they probably would have treated you at this point.  Now, most likely not.

I remember being surprised at how much I improved once I got through the first few months of D and things stabilized.  I was sure I was doing okay when my doc insisted I needed to start.  (Part of it was that I had spent years having problems with blood pressure med side effects.  I had finally found a doc who really worked to make them go away.  I was actually feeling better than I had in ages when my neph told me my labs had dropped to a dangerous level.)  The decline is so gradual that you don't really notice it.  It's possible that your knowledge of your lab results and your education on what they mean is simply making you more aware of symptoms you've been denying. 

It is a head game, but I think it's one we're genetically programmed to play with ourselves.  Like buying a car and then suddenly seeing them all over the place.  They've always been driving by in the same numbers, but now you see them all the time.  When you've been tired before, it's because you didn't sleep well, or you had to get up early, or you did a lot the day before.  You are now aware of another possible reason, so you're seeing it all the time.

[MooseMom]

Yep, you're right, jbeany. 

[paris]

Nicely said, Jbeany.   

[Deanne]

When I mentioned fatigue to my neph a few months ago, she asked if I wanted to go out on disability. I didn't/don't. She reduced my dose of Toprol and put me on Cardura. I never remember my hemoglobin number, but my neph hasn't pointed to it as a problem yet. Changing my BP meds helped for a while. She said Toprol slows your heart rate. Unfortunately, Cardura makes my heart race, so instead of discontinuing Toprol entirely, I reduced the dose so the side effects would work against each other - no more racing heart and I wasn't as tired for a while.

I'm tired again now. I don't know if it's from Toprol, or if I'm becoming anemic, or if it's just CKD in general, or if it's phychological. I don't know about using Epo. I don't want to be tired if there are things I can do about it, but if the risks of using it are high.... I tend to trust my neph. She goes over the benefits and risks and I generally take her advice. I'm hoping that with spring/summer coming, I'll be more active. Extra activity reduces tiredness to a degree, or at least if I'm tired, I'll feel like I "earned" the tiredness.

Do you exercise/are you able to? I walk with friends about 4 miles on Saturday and Sunday, and walk my dogs a mile or so during the week. One of my friends and I are adding in an additional 4-mile walk after work on Tuesdays. I think it helps.

[justme15]

I can relate.  last week I found out my hgb was 6.8. prior to finding out this value I felt ok. after finding out this value I started to get SOB, and even more tired. who knows, maybe I was exhausted, 6.8 is pretty low. I went to my hematologist earlier this week and it had dropped to 6.5.  I got a transfusion today.  epo doesn't help me. I get 50,000 units weekly and my hgb remains in the 7-8 range. 
I guess my body has accommodated to this range, because I work full time and try to keep my house up too!  but periodically it drops to the 6's, at which time I have to get a blood transfusion.   

[MooseMom]

Oh my...6.8!  That IS low!  I am going to stop complaining now!

Deanne, yes, I exercise regularly.  My daily walk used to make me feel more energetic, but since I saw my numbers, I really have to push myself to get going.  It is a vicious cycle of my own making.

[MaryD]

At one stage I had a reading of 6.7 and I was surprised because I felt fairly OK.  Another time I had to rest between taking a plate out of the sink and putting it in the drainer, and taking another plate out of the sink - my reading then was 8.5.

I started PD last December.  For about four years before that (and even now) I was giving myself an Arenesp shot every 3 - 4 weeks.  My readings hung about 10.5 to 11.5 for all that time.

I think there are two types of "tiredness".  There is Hg tiredness, which is sheer exhaustion, taking dishes slowly out of the sink tiredness.  And there is a confused, thinking through a fog tiredness.  Having to read a sentence five times to get its meaning, having problems with getting organised.

Within a week of starting PD, my confused tiredness was gone.  My readings hadn't changed, but suddenly I was alert and clearheaded for the first time in years.

My current Hg is 11.  I have six months supply at a time Arenesp in the fridge, and still use it every 3 - 4 weeks.  If I get beyond 11.5, I'm told to leave off for a while.  I really don't notice the difference between 10 and 11.5

[natnnnat]

Gregory's Hg was 94 in September last year, and his eGFR was 16 in December.  I didn't realize how old this blood results page was.  I wonder where he's at now.  He doesn't ask for information, its only me who's into measuring and that.  Funny thing about him having haemoglobin at 94, he was on Aranesp weekly.  They dropped it to once a fortnight.  mumble.  Why is he still taking it mumble side effects MUTTER

[MooseMom]

At one stage I had a reading of 6.7 and I was surprised because I felt fairly OK.  Another time I had to rest between taking a plate out of the sink and putting it in the drainer, and taking another plate out of the sink - my reading then was 8.5.

I started PD last December.  For about four years before that (and even now) I was giving myself an Arenesp shot every 3 - 4 weeks.  My readings hung about 10.5 to 11.5 for all that time.

I think there are two types of "tiredness".  There is Hg tiredness, which is sheer exhaustion, taking dishes slowly out of the sink tiredness.  And there is a confused, thinking through a fog tiredness.  Having to read a sentence five times to get its meaning, having problems with getting organised.

Within a week of starting PD, my confused tiredness was gone.  My readings hadn't changed, but suddenly I was alert and clearheaded for the first time in years.

My current Hg is 11.  I have six months supply at a time Arenesp in the fridge, and still use it every 3 - 4 weeks.  If I get beyond 11.5, I'm told to leave off for a while.  I really don't notice the difference between 10 and 11.5

That's really interesting!  I have read from other IHD members about the "confused, foggy thinking", so of course I examine my own brain for such symptoms.     I can't say that I have a universal problem with this, but I am convinced that general anesthetic I had 3 years ago caused some problems with word retrieval.  I don't think my brain is foggy, but I have noticed that it seems to have sped up. 

I've also noticed that my attention span is shorter and that I have to make a conscious effort to slow down when reading.  But with the way information is disseminated these days, I'd bet that most people in our society experience the same thing.  Mostly, I think I feel that I don't have much time left on this earth and can't be bothered with dull stuff, so get on with it, please.

[MomoMcSleepy]

Jenna is at 10.5 but when we asked the neph and transplant team about Epo, they said it is now being strictly controlled and barely available. They said perhaps a transfusion would be in the future, which stunned me. It can increase antibodies (as if Jenna's 100% is not enough!) and Epo was the miracle drug in the past, before they realized folks were having blood clots and heart attacks. As of last month the Food and Drug Administration approved that new drug called Omontys (peginesatide), developed by Affymax Inc. of Palo Alto, for use by adult dialysis patients with anemia caused by chronic kidney disease. So far I don't know anyone who is using it.
For now Jenna's anemia is slowing her down, especially during her monthly cycle. But the doc says the is "fine."

ok, I've been feeling weird all day and I thought it was cause I  had too many pretzels and other sodium-heavy food yesterday, but not to get too personal, I started yesterday, and my blood test on the 11th of this month said my hgb is 10.2, so could that be why I'm feeling off?  I am tired, but I also feel like I've got something on my forehead almost, like there's sun in my eyes and I  have to squint, but there isn't?  Tired.  And fuzzy in the head.  Is that what it feels like to be anemic?  I think it might be the sodium, atticus notice my hgb and hematocrit  were low.

ps I felt this before, and often before, and haven't felt it much since I got my gallbladder out, so I figured it was brain fog or something from having my digestive system out of whack.  Of course, my tummy was upset and I stayed home fro work yesterday...now too many things.  Is what I received something like how others with low numbers are feeling or do you think it's unrelated?

I agree on the transfusion, okarol, a strange thing to suggest for someone looking to get a transplant or keep one.

[big777bill]

 Moosemom my energy level is not good at all. My last hemoglobin was 9.7 up from 9.5. I usually get up everyday anywhere from 6am to 8:30am and go to bed between 8 and 9pm. Getting through the day can be tough if I have very much to do. I used to do all the grocery shopping. Now someone has to go with me because I start to run down about half way through. I've got more going on than the CKD. I had a liver transplant in March of 2005. I felt weaker after the transplant but the anemia and CKD has really zapped me. My neph says as long as I'm near 10 on my hgb she's happy with that. I personally feel it should be a little higher but I have a hard time getting it higher. Sometimes feeling like this really scares me because I used to be very strong. Now I can't even keep my yard up. It makes me feel like an old man way before my time. In many ways the CKD is worse than the liver disease was.

[MooseMom]

big777bill, I can understand your neph maybe hesitating giving you more ESA to try to push your hgb higher because of CV risks, but that doesn't really help you much, does it.  It becomes a quality of life issue.  I can see how you would find the CKD being worse than the liver disease.  Have you come up with any tricks of the trade that can give a bit of an energy boost during your day?

[big777bill]

 No real tricks of the trade to speak of outside of pacing myself and knowing what my limits are. The mornings are the best time for me to get anything done before I get too run down. My neph has been voted "TOP Doc" for nephrologists in the Philly- South Jersey area multiple years now. I put my trust in her abilities to help me deal with this disease. The thing I like about her is she limits the number of patients she treats. You actually get the feeling she cares. That in itself is amazing in this day and age. I don't know how it happened, it wasn't intentional, but now all of my Drs are women. I like it because they are a lot more compassionate than the male Drs I've had. I wish there was some type of trick that could be done to boost energy levels. I guess I'll just have to play the cards I've been dealt and make the best of it. Aint much sense in complaining. That seems to make things worse.

[wvgirl]

Moosemom, I started epo 2 years ago. I think it was about 9 when he started me on it, but was about 10-11 for a few years before that. I would get tired doing simple chores like folding clothes. My arms were more tired than my legs so anything involving using my arms was tiring. I did notice it when it was in the 10's. Even now, I go in to the clinic for my injection. I have to have lab work done first. If it is over 12, I get nothing, if 11-12 I get a smaller dose and if under 11, a larger dose. I had some lab work done last week, not time yet for the epo and sure enough it was 10.7. I have been really tired the past week. Gotta get one tomorrow morning. I also have noticed when I drop below 10 I get really mean!! I fight with everyone I know.   

[mamagemini]

Jumping in on this...since the surgery walking more than a block I am tired. In my legs and shoulders. Today I was walking back to my car from my lab and carrying a backpack with laptop, ipad and folders. My legs were yelling. Like I had run a race. Weird or me because I usually can walk all over Vegas before I get tired! Now I could walk maybe Fremont street. I have started waking up nauseous, tired and achy. Everyone is telling me it is from the anesthesia but I had Profanol, not the knock you out kind. I'm just confused. I am planning on getting blood work on Friday in hopes that it is not my kidneys. What do you all think? 
Mmom, I can relate to hearing something and thinking thats it! I think we need to stay positive that all will happen as it is needed. You've been ready for this for awhile....You can do this!!!

[MooseMom]

Mamagemini, any kind of anesthetic and surgical procedure can do really bizarre things to you.  I would be surprised if your kidneys just suddenly tanked, based on your history, so I'm inclined to believe that it's the anesthesia plus surgery plus poor renal function all combined that makes you feel this way.  Let us know what your blood tests show.

[natnnnat]

Have you gotten more normal by now mamagemini?  As MM said, the surgery+anaesthetic takes a few days and throws all your numbers awry but then usually the old system gets back in shape.