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Dialysis Discussion => Dialysis: General Discussion => Topic started by: kickingandscreaming on June 23, 2016, 10:22:15 AM

Title: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 23, 2016, 10:22:15 AM
I have just begun to consider the possibility and wonder if anyone has any experience or knowledge about how it works.  Is it hospice care? Is it palliative care and if so what kind?  Where does it happen? What is the goal? What do they do that is different from what's done before initiating dialysis? etc.
Thanks.
Title: Re: What does Conservative Care look like for ESRD?
Post by: cassandra on June 23, 2016, 10:58:10 AM
Dear KaS, I hope you get your answers, Is there no Patient Association near you, to ask?
I would think that you wouldn't get an access made, and that they'll keep you comfy (pain 'free') till you're dead.

Love and strength, Cas
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 23, 2016, 01:30:57 PM
I don't know of any Patient Association.  There may be one, but I don't know about it.  Actually, I guess it's withdrawal from dialysis that I'm thinking about.  The reason it is coming up now is that my dog-- who is my real life companion-- has recently diagnosed Lyme disease and she is refusing to take any of the medication.  I've tried everything to get her to accept it including the old fashioned forcing it down her throat.  And I'm clear that I don't want my last days/weeks/months whatever with her to be spent in that kind of relationship.  So I assume that she will die.  She is 14+ but I know Lyme can ravage a body and soul.  I have one more thing to try and if that fails then I will have to let her to and let fate decide what happens.  If she dies, then basically  my only reason for struggling through dies with her.  So I am trying to understand my options.  Probably hospice and palliatiive care is more correct a term than conservative care which is what people do instead of dialysis.
Title: Re: What does Conservative Care look like for ESRD?
Post by: cassandra on June 23, 2016, 02:05:06 PM
KaS I hope that the 'one more thing to try' will work for the both of you, and I think I understand now.

Lots of love, strength and luck, Cas
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 23, 2016, 03:44:03 PM
Thank you, Cas.  I hope so too.
Title: Re: What does Conservative Care look like for ESRD?
Post by: Fabkiwi06 on June 23, 2016, 10:37:53 PM
I'm so sorry K&S. Watching a pet near the end is one of the hardest things. I hope she takes her pills well tomorrow.

I remember reading a little about hospice options when I was originally in the hospital. It seems like they do what they can with treating the symptoms. I think I read it tends to be a shorter duration if you were on dialysis and stop than if you didn't do any dialysis at all.

I also feel like I was reading a old thread on this board about this subject not too long ago. I can't for the life of me remember the name of the thread, though.  :embarassed:
Title: Re: What does Conservative Care look like for ESRD?
Post by: Charlie B53 on June 24, 2016, 07:58:50 AM

It is very difficult to lose a 'fur' baby.

She won't take her pill?   I assume you have tried wrapping it in a piece of cheese?  That worked for 'Jack' and "Herbie".    Vile tasting if you try to crush them to mix with wet fogs?

I hope you find a method that she will accept.   Have you tried preparing it without her seeing?  They are too smart, often know exactly what we intend to do.   If you use the bathroom without her maybe take (sneak) the mixings in there and prepare it.  Sneak it back into the kitchen, then she may not be as suspicious.

Good Luck with your deception.

Sometimes it is necessary to be slightly devious.
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 24, 2016, 10:58:18 AM
Thank you, Charlie (and fabkiwi).   I have been extremely devious.  I have a fridge full of morsels I've bought to hide pills in (cheese, liverwurst, hot dogs, cat food, pill pockets,  peanut butter, sardines, chicken hearts, beef balls-raw and cooked) and she won't eat any of them now.  She thinks everything is suspect. And she has very little appetite to begin with so there is nothing that looks so good enough to override her suspicion.  I just had her switched to another antibiotic that has less GI side effects, and I'm having it compounded into a liquid emulsion (beef flavored) in the hopes that I can incorporate it in something she'll eat.  I'm not hopeful this will work.  I really don't want to force it on her and have that be the way our relationship ends.  On the other hand, the Lyme will probably kill her if I can't treat her. It sucks.
Title: Re: What does Conservative Care look like for ESRD?
Post by: Michael Murphy on June 24, 2016, 12:49:40 PM
I have a cat who hate pills, I talked to my vet and got approval to grind pills or open capsules and put the powder in a small amount of water.  Place the water in a syringe and squirt into the animals mouth.  It works for my cat I don't see why it won't work for your dog.  The pharmacy sell things to do this.  In fact with some drugs the vet will give you a syringe,
Title: Re: What does Conservative Care look like for ESRD?
Post by: DayaraLee on June 24, 2016, 01:54:11 PM
I've used the syringe (sometimes just an eye dropper) with two small yorkies for years, for all kinds of medications. Praying that you find something that works! With few exceptions, our pets love us unconditionally, and straining that bond of trust is a hard thing to do, especially when you can't explain to them why.  :pray;
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 24, 2016, 06:03:43 PM
I'm afraid to speak too soon, but I just rushed home from the compounding pharmacy who made the new antibiotic(amoxicyllin) into an emulsion that is beef flavored.  I lightly cooked some nice ground beef and squirted the emulsion into it and said a prayer (something I am not given to doing on a regular basis) that she would eat it.   She lapped it up with gusto.  Thank heavens.  But there's always tomorrow morning when I have to do it all over again.  She tends to eat at night and is rarely hungry during the day.  So I'm not sure the magic will work again and again.  One down....
Title: Re: What does Conservative Care look like for ESRD?
Post by: LorinnPKD on June 24, 2016, 06:10:35 PM
That is excellent news!  I have been thinking about your post and wishing you and your doggy well.  Your dog is fortunate to have someone so loving and caring!
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 24, 2016, 06:14:38 PM
Thank you for your good thoughts and kind words.  I just love her with all my heart.  It's as simple as that.
Title: Re: What does Conservative Care look like for ESRD?
Post by: hatedialysis2 on June 25, 2016, 09:28:49 AM
Dogs, animals in general , have an amazing capacity to heal. Not eating is one way the body conserves energy to fight.  The fact tha she ate last night is FANTASTIC news.   Best wishes for her fast and speedy recovery.  Are you considering probiotics for her to counter the the damage of the antibiotics, and strengthen her immune system? Also omega 3s for inflammation.     I add ground flaxseed to my dogs meals.   
Title: Re: What does Conservative Care look like for ESRD?
Post by: Charlie B53 on June 25, 2016, 09:40:35 AM

Very glad to hear you have found a delivery method that has worked.  Hope it continues to be successful!

Our little dog, well, 25 pounds, rarely eats during the day.  Often I see him when I get up in the middle of the night snacking at his dish.

He is a bit more than spoiled.  Getting something from each of our meals.  We always save him a bite, even when we go out to eat.  Which is way too often as She rarely cooks any more.  And those occasions when out if we don't save him anything we stop by McD's, as he loves a McChicken.

I keep telling Her that he should eat bread.  Too many calories in breads.  Dogs do not need 'processed' foods.  Their system isn't designed for it.   But I'm just as guilty.  I buy them for him, and cut them up into little bites so to slow him down a bit.  Otherwise he tries to gulp it down in a huge bite.   I would hate to see him choke.

Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 25, 2016, 01:43:44 PM
Quote
Very glad to hear you have found a delivery method that has worked.  Hope it continues to be successful!

Our little dog, well, 25 pounds, rarely eats during the day.  Often I see him when I get up in the middle of the night snacking at his dish.

Not so fast...  As I dreaded, she had no appetite come breakfast time.  I think that is simply her preference, and her weight is fine so she's probably correct.  But if she has NO appetite at all in the morning I can easily give her her meds which need to be given every 12 hours.  I asked the vet for an RX for a drug that arouses dog's appetites and I started her on this today.  Hopefully it will click in and I can get her into some schedule that coincides with the meds.  This is exhausting.  On top of everything else...
Title: Re: What does Conservative Care look like for ESRD?
Post by: Simon Dog on June 25, 2016, 06:20:53 PM
I asked the vet for an RX for a drug that arouses dog's appetites and I started her on this today.
One of my dogs is older (15), and was losing weight due to low appetite.  I found a drug that I sprinkle on his food that makes him eager to eat and, fortunately, it is inexpensive and easy to get - A blend of grated Parmasean/Romano cheese commonly used on spaghetti.

My other dog was reluctant to take an prescription he had been given, and I found the solution was to wrap it up in a slice of deli ham.

That is a beautiful dog.
Title: Re: What does Conservative Care look like for ESRD?
Post by: Charlie B53 on June 25, 2016, 06:43:30 PM

What can I say but ALL fur babies are beautiful, some may seem nore than others, but in each owners eyes, they are Family.

I recently saw a picture of a small mixed pup so cute I really would like to have one.  Til I saw the price.  A Qwap!  I hate it when I forget a word.  A cross between a Husky and a....  POM   don't expect me to spell out Pom________ien correctly.  So they called it a Pomsky.   CUTE.  All in Capital letters.   Eats small.  Poops small.  Less to clean up.


I also saw a picture of what is supposed to be a dog but was so big that many people confuse it with a bear.  Of course I forgot the name.   But was still a good looking animal.  I just cannot imagine affording to feed anything that size.  Or to clean up after him when taking a walk.  May need a wheelbarrow!
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 25, 2016, 06:53:10 PM
Quote
wrap it up in a slice of deli ham.

Ham didn't work.  Liverwurst did for awhile and then she got suspicious of it. Cheese wasn't OK in that context because it interacts with doxycycline and blocks its effect. I switched her to amoxicyillin and got it compounded as a beef-flavored emulsion.  I think it tastes good, but I just can't make her eat in the morning when she has no appetite.
Title: Re: What does Conservative Care look like for ESRD?
Post by: DayaraLee on June 26, 2016, 09:39:20 AM
I hope the med to stimulate her appetite worked! I hear so frequently about people who have dogs that are food-driven and will eat nearly anything at any time. Unfortunately, we've never had this in our family and continue to be challenged with several little guys who refuse to eat at least 3 days out of the week. It's a constant worry, and when medicine must be given with food, it makes it even worse. I keep returning to this thread, hoping for good news. A friend sent this to me in an email years ago. I don't know where it came from... I tear up every time I read it, but it surely does ring true for those of us with fur babies.   

He is your friend, your partner, your defender, your dog.
You are his life, his love, his leader.
He will be yours, faithful and true, to the last beat of his heart.
You owe it to him to be worthy of such devotion.


Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 26, 2016, 10:57:46 AM
Thank you all for caring. I am having an easier time getting the meds into Roxie since I switched med and format.  Still an issue at breakfast--since she absolutely has no interest in that meal.  Dinner is fine and I can squirt the med emulsion into her food.  The morning dose I have to syringe into her mouth.  I hate doing it and she doesn't like it either, but it must be done.  So far I can't see any effect from the hunger-stimulating drug.

I think she is doing better, although she really didn't have typical Lyme symptoms to begin with-- just a positive test that warranted treating. I won't really know if it worked or not until I retest 6 months from now.  If she tests at 1/2 of her current score or less that means it was successful. We'll keep plugging.

When I don't have to give her meds. I totally trust her choice to eat or not.  I used to be very attached to it and concerned.  Now I assume she is good at self-regulating.  She's never been one of those dogs who would eat anything anytime.  I've had 3 Labradors in the past and they are the very definition of gourmand.  Totally food driven.  Roxie is a mutt and her mother is/was about 70% Whippet (I think there's pit bull and shepherd in her also and who knows what else).  I've had Greyhounds in the past and there were not at all food driven and Whippets are related.  She's a very sensitive, tuned in and "thin-skinned" dog.  That's one of her most lovable qualities, but also difficult in certain ways. Labs are made of asbestos.  Not Roxie. She's subtle.
Title: Re: What does Conservative Care look like for ESRD?
Post by: LorinnPKD on June 26, 2016, 01:53:11 PM
>>She's a very sensitive, tuned in and "thin-skinned" dog.  That's one of her most lovable qualities, but also difficult in certain ways. Labs are made of asbestos.  Not Roxie. She's subtle.

It seems like the most quirky and complicated animals are the ones we can't help but love the most! :)

My little dog has been leaving her food dish untouched sometimes lately, and I think part of it might be the hot weather we're having in my part of the country.  She seems to eat more when it's cold out...

Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on June 26, 2016, 02:47:21 PM
The body needs less energy in hot weather. As long as the dog is maintaining a good weight and getting a basically good diet, and seem basically healthy,  then I wouldn't worry. Animals often have a lot more body wisdom than we humans. 
Title: Re: What does Conservative Care look like for ESRD?
Post by: DayaraLee on June 26, 2016, 03:26:13 PM
Animals often have a lot more body wisdom than we humans. 

Boy, that is the truth!!!    :shy;
Title: Re: What does Conservative Care look like for ESRD?
Post by: beckums70 on July 01, 2016, 05:54:13 PM
I've never heard it referred to as "conservative" care, but having worked in the hospice field for a long time, I do know that a patient with ESRD who is recommended for dialysis but refuses it or chooses to stop it, automatically qualifies for hospice care.  It is covered 100% by Medicare if you are over 65 and most insurance plans cover the cost entirely as well.

I would encourage you to talk this through with your social worker before making a rash decision in the midst of grief.  I know all too well the feeling of "waiting around" to die, and not feeling as though your life can continue in any normal way with ESRD.  Three years ago I struggled with the idea of starting PD, and only chose to go ahead with it because of my son who was 6 at the time.  Since then I have suffered many losses; a relationship, my home, and financial security among those losses.  However, I do not regret my decision.  My son was my primary reason for living, and still gives me inspiration, but I know that I am still who I always was and that I have some valuable qualities to give to the world around me.  I know that sometimes we feel like that "other" out there, be it a child or a pet, is our only reason for existing, but if you are still here, you have something to give the world.  Life still has joys and triumphs for you! 

I know it is a very personal decision, but I hope you will consider that your worth and your purpose in life extends far beyond the relationship you have with your precious dog.  I urge you to give it time, and give yourself a chance to heal emotionally before you decide. 

I do hope your doggy recovers and continues to have a long, healthy life.  I hope you have a long, healthy as possible life too!

ETA:

As far as the treatment you'd get from hospice or palliative care (which are basically the same thing), they would manage the symptoms from ESRD that would cause you pain or discomfort.  If you have fluid retention that puts pressure on your lungs and makes you uncomfortable they might offer paracentesis (removal of excess fluid from the abdomen) to make it easier for you to breathe.  They would cover the costs of any treatment you'd need to give you comfort or pain relief.  If you had itching from excess phosphates or symptoms from hyperparathyroid, they'd cover any medications you needed to help with those symptoms (like vitamin D, sensipar, and maybe even a phosphate binder).  Depending on how much renal function you still have without dialysis, you might live six months or less.  Hospice evaluates patients on a 3 month, and then 60 day basis for the first 6 months and then every month thereafter.  As long as your health continues to decline you will still qualify for hospice care.  Popular belief is that dying from ESRD is painless and peaceful; however in my experience with people whom I have seen die from ESRD, it is not.  It is often very uncomfortable toward the end, with all the symptoms of ESRD, including severe fatigue, becoming overwhelming and very hard to tolerate.  People who die from ESRD most certainly suffer, but hospice does everything they can to alleviate as much suffering as possible.
Title: Re: What does Conservative Care look like for ESRD?
Post by: kickingandscreaming on July 02, 2016, 05:03:56 AM
Thank you, Beckums.  I'm sorry about all the losses you've endured.  I have gone through long stretches of that kind of thing myself and know how hard it is.  There was a period, some years ago when I lost my husband, my 2 dogs, my mother, my financial security and my profession.  But I was younger then and didn't have this disease at the time. Now, at 74, and with this foul disease, my prospects for a "restart" after another major loss will be much less.  A lot will depend on how I'm doing with PD at the time.  But I do have a sense that my " work is done," and that I would be overstaying my welcome (and usefulness) on the planet by stretching out my lifespan.

I appreciate your words and description of hospice for ESRD.  Isn't there such a thing as sedation to make one unaware of all those terrible symptoms ?  I have no desire to be awake through my death. I'd much prefer to be "out of it."

I realize my terminology in my OP was incorrect.  Conservative care is what is offered if someone refuses dialysis in the first place.  Palliative/hospice care is what it's called after someone has been on dialysis and then refuses to continue. 

I have often wondered whether it is possible to take advantage of the Dr. assisted suicide that is now legal and available in some states (altho not my Massachusetts).  But they do have it in VT and I could move there or visit--if that's possible-- and die there.  Anyone know what the rules are about that?
Title: Re: What does Conservative Care look like for ESRD?
Post by: beckums70 on July 02, 2016, 06:25:36 PM
Many hospice patients are indeed very sedated at the end with pain medications (usually morphine based) and/or medications to treat anxiety.

I didn't mention before, but I also work with seniors and have done so in some capacity my whole career.  I used to think that people in their 70's probably had little to offer the world anymore--that was my youthful ignorance.  I have learned and benefited so much in my lifetime from all the varied personalities and life-stories of the elders with whom I've had the pleasure of working.  I am now of the belief that we are never too old to learn, grow and contribute to the world around us. 

This disease challenges us all with limiting beliefs about ourselves, our abilities and our purpose in life.  I truly understand that.  I am 46, so not a spring chicken but not yet an elder.  I already struggle sometimes with believing in the "usefulness" of my stay here on Earth.  I really do empathize with you. 

I'm also very proud of you for opting to go with PD.  It is much easier on the body, especially in someone of your age.  Most people in their 70's or older who opt for hemodialysis later regret starting dialysis at all.  If you are doing well on PD, that's a good thing.  If, however you still feel like crap all the time, I completely understand why you'd want to stop.  It is a highly personal decision and many seniors choose to stop so they can have a better quality of life for the rest of the time they have left.  In a similar situation I'd probably do the same.  To me quality of life is far more valuable than quantity.

I don't know about assisted suicide in your state.  I have known of people who moved, to another state to take advantage of the laws there.  The drawback of that, for many, would be having to weather those last days and moments away from home and what is familiar to you.

If you do decide to cease dialysis, please take time to make sure it's what you really want to do.  You can go on hospice and then change your mind later.  Signing up for hospice is not necessarily a death sentence and you aren't obligated to stick with it if you change your mind and want to go back to dialysis.  They really do all they can to make you as comfortable as possible.  Hospice utilizes an interdisciplinary team to address all the needs of the patient and family, not just the physical ones. You'd have a social worker, chaplain, volunteer services. a nursing assistant, nurse and hospice medical director to help you.

I wish you and your dog the best,, and hope you both survive this tough time.