Will he "get better"?

[frankswife]

Frank's been on dialysis since September 7, 2012. 7 months. I keep reading on IHD about people feeling better, having more energy, etc, after starting dialysis. This hasn't happened for Frank. In fact, it's the opposite. He sleeps 16 or more hours each day, cant even walk around the stores anymore and now uses the store scooters which he swore he would never do, and is constantly dry heaving and vomiting. It has gotten much worse in the last month or so. Yet the weird thing is he doesn't really seem unhappy. Is there an adjustment period or something for dialysis? Is this normal or should I be worried. I do understand dialysis (literally and figuratively) takes alot out of a person.

[Riki]

What kind of dialysis is he on?  It's possible that dialysis is taking too much fluid from him, and it's literally sucking the life from him.. he'd be dehydrated, and all he'd want to do is sleep

[Henry P Snicklesnorter]

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[amanda100wilson]

 sounds as if he is is under-dialysed (the dry heaving and vomiting is suggestive that this is the case).. Tiredness may be if his Haemoglobon in low.  Does he receive epogen or aranesp injections for this?  if yes, is the dose adequate to bring his hgb to between 10-12?  Is home hemo an option?  this would give more frequent dialysis, and I bet these symptoms would go away.

[jeannea]

Something isn't set right with his dialysis. Time to have a conversation with the doctor about it. There is a period of adjustment and some people never feel super but this sounds worse.

Is his blood pressure in the right range? Something to check along with his lab results.

[kit78]

I have been on HD since June of last year.  If they take 1 liter of water off I do good now. Just a bit tired is all. If they take 2 or more liters of water off, I am wiped for the day.  Back to normal the next day.  Only time I get sick is from pain pills.
My body seems to be adjusting a wee bit more, little by little.  I can only go day by day.  Am hoping it all levels out.

[amanda100wilson]

kit78, what you are saying sounds about right for in-unit hemo where they sometimes take off too much, but sounds different than what frankswife is saying, since this is an ongong and constant issue.

[Sydnee]

Wish I could offer advise.

Is the doc. concerned? Seems to me the three of you should be talking. I don't care what the labs look like if he feels like this the Neph should change something up.
When Ed switched from in center hemo to PD he started feeling somewhat better.
I can't remember what is Frank on PD or hemo?

Praying for you

[lmunchkin]

FW, I can tell you that John is feeling much better than ever before.  Like Amanda, Home hemo has allowed him this feeling better.  But I must tell you, John gets on these coughing spells where he gags.  Like he is vomiting, but nothing comes up.  This is most everyday since 2004.  I don't think it has anything to do with his Dialysis, unless they have the composition of his Dialysate all wrong, and that is very rare.

The being tired could be as Amanda said, his Hgb or maybe his Iron levels are low.  But then again, it could be his Blood Sugars being too high.  I know when John is tired, generally it is his BS are on the hi side.  Also, consider this, maybe he is just bored!  Has nothing to do but sleep.  John sleeps all the time, because quite frankly, its all he can do.

I know after he stopped working Jan 2011, he just fell into Depression.  It has that affect on a man, because they are the natural providers of their family.  They are the protectors of their flock.  Defender of the family.  When something happens to them and those things are stripped away, it is DEVASTING to them.  Almost as bad as the disease itself.

John pulled himself together and excepts the things that he can not change.  He enjoys being alive, except when Im working. I think that it is not so much me, as it is, he feels it should be him! 

Back to Frank.  It could be several reasons for his situation not D related.  I hope he can do D at home one day.  Its not perfect, but better for him emotionally & physically, if just for the simple fact of being at HOME!

Good Luck, FW.  Know that you are in my thoughts & Prayers.  This has been rough for you both, I know!

God Bless,
lmunchkin

[frankswife]

lmunchkin, alot of what you say makes sense and you make me feel better. Frank's dry heaves and vomiting is always preceded by coughing spells. Now that I sit and think about it, that's been going on sporadically a couple years. It's just more frequent now. You're right, he IS bored. We sold our second vehicle so while I'm at work he can't go anywhere. When I'm home he tries to stay up but says he's always tired. All he does is watch tv and fiddle with his fishing poles and wait and hope his son or one of my sons invites him to go fishing. I'm very uncomfortable with him going alone. It's really kind of sad. He says I treat him like I baby. I try not to but I know sometimes I do. I want to protect him all the time and I know I'm driving him nuts. I don't know how to let go a little. Boy, I kind of went off topic a bit, huh?

[boswife]

oh frankswife, these things are so hard on us as caregivers too   Up untill Bos hemoglobin drops (he has a seeping of blood inside that is causeing it but through all his tests, some of which were still waiting for results) it has not been found just where that seepage is.  It scares me to death, and i feel it's causing my health decline as well.  We are both such upbeat people but as of late, it has truly taken a toll on us and we're fighting to get some umph back.  It seems one thing after another.  first the drop in hb, made or 'let' him fall, he hurt his tail bone, cant sleep due to disease AND now the pain, is taking to much norco and now is going through withdrawls over that so feeling down AND grumpy, and w/o sleep, oh boy, its been rough... Now, this doesnt help 'fix' any of what your trying to fix, but just so you know, we have been 'here' before, and we'll get through it again.  I wouuld  also suggest that you check that hemoglobin, and dry weight stuff.  It can wipe um out.  Sending love and understanding from boswife   (whos name is actually frank too   )   

[billybags]

I so agree with Boswife. We have been on and on about my husbands HB for months it has been at about 8 UK numbers and  he has been so tired and sleepy all the time. Well at last it has started to rise and gone up to 10, he is so much better. I think the last hospital stay scared him, he was so malnourished I could not get him to eat any thing he just did not fancy food at all. I think the threat of drip feeding got to him and his appetite has picked up alot. Dietitian told him to eat any thing and he is doing that. Franks wife I feel for you both. You will get through this as we always do. Have you thought of a mobility scooter for him. My husband poohed the idea for months, I got him one and he loves it. Goes every where, it has done him the world of good. I will be thinking about you both. Hope things improve a lot for you.

[frankswife]

I think his HG is one of the things they check at dialysis. I know they draw blood bi-weekly. His primary doc gets all his lab reports and specifically checked the HG when I told him Frank was always tired and he said it was ok. But I'm going to ask again. I asked him to try to stay awake today to see if he can maybe "retrain" himself since he's used to sleeping. So far, he's cleaned out his toolboxes and vacuumed the living room. Hmmmm.....

[Riki]

giving him a job is probably a good idea.. nothing too strenuous, but something that'll make him feel useful.. I know that with me, if I know I have something that needs doing, I feel better once I'm doing it, and when it's done, I feel like I've accomplished something, instead of feeling like a turd in the middle of the floor

[lmunchkin]

I think his HG is one of the things they check at dialysis. I know they draw blood bi-weekly. His primary doc gets all his lab reports and specifically checked the HG when I told him Frank was always tired and he said it was ok. But I'm going to ask again. I asked him to try to stay awake today to see if he can maybe "retrain" himself since he's used to sleeping. So far, he's cleaned out his toolboxes and vacuumed the living room. Hmmmm.....

Me thinks he's a bit BORED!!!! Don't You?  His Hgb levels may very well be ok, but have them check his Iron levels also.  If his Iron is low, then they need to give him IV Iron.  Iron is extremely important as blocks for red cells to build on.  EPO is nothing without Iron!!!!  If his Hgb is good & Iron is not, then you will soon find him getting weaker & tired.  Labs are important, please FW, have them check his Iron.

Thinking of you guys!  Let us know how it goes.

God Bless,
lmunchkin

[frankswife]

That's funny, lmuchkin, the first thing Frank said to me when we were talking about him always being tired was "I think I need iron". I'm calling the center right now (he's there now) and asking them to check when they draw again. EDIT: just spoke to Frank's very wonderful regular nurse Jennifer. Iron is checked quarterly at his center. Frank's was done last week and is in normal range.

[Jean]

I am sure this is going to sound like it has been written by a dummy, BUT!!!!! Does hubby have dentures??? Do they fit well?? A denture wearer will sometimes maybe not put some fastening stuff on the denture and it slips more than they realize. I have an extremely strong gag reflex and sometimes when I am trying the clean the goo off the roof of my mouth, I start to gag and dry heave ( or wet). So, just thought I would ask. Also, whenever a denture wearer loses a little weight, they no longer fit correctly.

[Grumpy-1]

While I was on PD, I felt better than on Hemo (which I'm on now). I think it is because of the ups and down of fluid retention.  Doing hemo, I go every other day and so in between I gain fluid, then at dialysis, they take the fliud off and that wipes me out.  On PD, the dialysis is taking place 24 hours a day 7 days a week and is more constant.  So, there is less ups and downs. 

Couphing and such - I too have been experiencing the couphing and having dry heaves.  It starts with a dry throat and then I'm trying to turn my stomach inside out.  No DRs have figured that one out for me.  The only thing that helped was when the family DR put me on some strong cough meds.  That helped a lot but didn't completely stop it. 

For being tired, that for is because of low hemoglobin.  I keep trying to tell the DRs that I feel better if I'm closer to 11 verse 10 (or below) as the FDA has recommended.  BUT the cost of EPO and such, the DRs don't want to keep that high so I'm on a roller coaster ride with that.  They keep off EPO until my numbers drop so low (last go round they dropped to 82.) and was dragging - no energy, no drive, wanted to sleep all the time.  Now I'm back on EPO and the number are coming up and I'm feeling better.  Iron (as mentioned) has a lot to do with too.  When they start EPO, they include adding iron to the mix as well. 

Grumpy

[lmunchkin]

I am sure this is going to sound like it has been written by a dummy, BUT!!!!! Does hubby have dentures??? Do they fit well?? A denture wearer will sometimes maybe not put some fastening stuff on the denture and it slips more than they realize. I have an extremely strong gag reflex and sometimes when I am trying the clean the goo off the roof of my mouth, I start to gag and dry heave ( or wet). So, just thought I would ask. Also, whenever a denture wearer loses a little weight, they no longer fit correctly.

I don't find this DUMN at all.  In fact, my husband does have dentures.  He rarely has them in, but does glue them in before he eats.  I will pay a bit more attention to him.  But he coughs and gags all the time, so maybe not!

Interesting though!

God Bless,
lmunchkin

[Speedy1wrc]

That's funny, lmuchkin, the first thing Frank said to me when we were talking about him always being tired was "I think I need iron". I'm calling the center right now (he's there now) and asking them to check when they draw again. EDIT: just spoke to Frank's very wonderful regular nurse Jennifer. Iron is checked quarterly at his center. Frank's was done last week and is in normal range.

It is not uncommon for the lab results to indicate good or decent Ferritin and stored iron reserves while on dialysis. One of those "things" that is just different for "us". My numbers are just dandy yet I get a hefty dose of Venefir every month. Along with the iron though, he needs a mega dose of vitamin D as well as the EPO. You can get all the EPO you want, but without those other two it won't be very effective. That said don't take too much iron, It messes with the heart and muscles, so let that be a discussion between the three of you. As well as oral iron isn't absorbed anyway. If he takes binders, it'll all get soaked up just like phosphorus.

As for vitamins, B(Folic acid) and D are an absolute must.

[lmunchkin]

I agree to the Vit. D.  John takes them religiously.  Never get Iron injections if levels are okay!  That would be nuts!!!! Your clinic should know if IV iron is needed, surely. 

God Bless,
lmunchkin

[Henry P Snicklesnorter]

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[frankswife]

What is this "epo"? Whatever it is, I'm fairly certain Frank doesn't get (take?) it. Oh, and yes, Frank does have dentures... He's had them about 20 months. I thought the coughing had been going on like 3 years, but he says no, only like 1 1/2 to 2 years. In other words, denture time. He was taking calcitriol at home but now gets it at the center, and takes 2 800mg Renvela with each meal.

[Henry P Snicklesnorter]

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[frankswife]

If it's something given with his treatments then he may very well be getting it. I spoke out of turn. I will have to ask. He wont ask. That's the one thing I wish he would do, ASK! I think they do explain stuff but he forgets by the time he gets home and then I have to call them. GRRRR! lol You mentioned something about the liver, Frank has Hep C with a current high viral load and we are seeing a heptologist on the 29th and praying there's no liver damage. Does this epo do anything to the liver?