1. < Kidney & Bladder
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What's your experience with dialysis? Give & get support here

Posted by Rosemary, Volunteer Mentor @rosemarya, Mar 7, 2019

Dialysis is required if your kidneys don't function adequately on their own. Your doctor will discuss with you the type of dialysis that's best for you. Dialysis treatment is a serious responsibility, You'll need to work closely with your health care team who have experience in managing dialysis. Open communication with your health care team is essential to your overall health.

Fellow patients are a wonderful source of support and practical information because of a shared dialysis experience.
If you are a dialysis patient, or loved one of a patient, what are some things that you have experienced that might be helpful to someone who is new to dialysis? What kind of life adjustments have you had to make? How has it affected your everyday life?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

bustrbrwn22 | @bustrbrwn22 | Sep 19, 2020

@kamama94 May I ask what a “Death with Dignity” state is? Thanks!

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3 replies
bustrbrwn22 | @bustrbrwn22 | Sep 19, 2020
In reply to @fiesty76 "@kamama94, @bustrbrwn22 and other pet lovers, I hope you'll find the link below watch worthy. Kamama94,..." + (show)
@fiesty76

@kamama94, @bustrbrwn22 and other pet lovers, I hope you'll find the link below watch worthy.

Kamama94, quality vs quantity of life has been a priority of mine for many years. I told my doc son-in-law years ago, I wanted him to insure that I meet the residential requirement of a state that allowed "Death With Dignity". More laws need to be changed to allow this, imo.

When my children moved to Colorado, it was not only closer to me but that state is one of 6 (I think?) that allows this to take place without legal penalty. Son-in-law is probably relieved too because this lets him off the hook....smiles/winks Now it is up to me to decide on timing a move to Colorado.

Pets can bring a measure of comfort and lift to our days like no other. Wish we could clone both companion dog Kerith and her trainer 100 xs 100 for all needing a bit of affection and comfort. Hope viewing this brings a smile to your day: https://www.yahoo.com/lifestyle/golden-retriever-comforts-ca-firefighters-090335730.html

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@kamama94 God bless Keith!!!

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bustrbrwn22 | @bustrbrwn22 | Sep 19, 2020
In reply to @fiesty76 "@bustrbrwn22, Two of my favorite groups of professionals are vets and pharmacists. Better listeners, more compassionate..." + (show)
@fiesty76

@bustrbrwn22, Two of my favorite groups of professionals are vets and pharmacists. Better listeners, more compassionate and responsive than majority of my docs. If one of docs' first tenets is "first, do no harm"; they are missing the boat entirely on pain management and improving quality of life for millions of patients.

Whenever I read of members who have medical specialists "teaming" to communicate with one another and the patient for treatment options and procedures it truly gladdens my heart.

Several years ago I told my young vet, who I'd sat with as he'd euthanized several of my beloved pets, that when my time came, I'd instructed daughter to call Him for help. Poor guy didn't know what to say but to his credit did manage a smile and nod.

Personal opinion is that docs' 1st thought is " what labs/tests can I prescribe". While diagnosis is a primary goal, most have forgotten or never learned that treating the "whole patient" should be their first concern.

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@feisty76. I totally agree! I love my Walgreen’s head pharmacist! When I was prescribed Narcan (?) (routine for my pain mgt clinic) I asked to speak to him privately since this was a new script. I started crying because I am so ashamed I have to take pain meds and even more embarrassed that it’s in conjunction with my benzo. I explained to him that for me life would not be worth living without these meds (I’ve tried many over 10 years) and would he show me how to use the narcan. He told me I had nothing to be ashamed of, these were needed meds for me and that he didn’t judge. What a beautiful person. My husband and I discussed the risks etc and he totally understands the risk as well as my decision. I still am ashamed if I have to pick up my pain or benzo prescription (my husband usually does because of my agoraphobia). I feel people are judging me - that I must be taking for a high when neither one actually does give me any type of high but they work pretty well to keep me from suicidal thoughts Jen

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 19, 2020
In reply to @kamama94 "After the 1st full week of dialysis plus delays & glitches, I got home on time..." + (show)
@kamama94

After the 1st full week of dialysis plus delays & glitches, I got home on time yesterday, gobbled down some pasta then slept from 4:30 to 8 PM, got up briefly then went back to bed and slept until 3:30 AM. Dialysis really takes it out of you. Literally.

Still trembly this morning and still have dry heaves every day but not as exhausted and looking forward to having a bit more energy today.

This is a good day to live!

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@kamama94 I am sorry for how awful that must be. I am praying you feel better today.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 19, 2020
In reply to @kamama94 "After the 1st full week of dialysis plus delays & glitches, I got home on time..." + (show)
@kamama94

After the 1st full week of dialysis plus delays & glitches, I got home on time yesterday, gobbled down some pasta then slept from 4:30 to 8 PM, got up briefly then went back to bed and slept until 3:30 AM. Dialysis really takes it out of you. Literally.

Still trembly this morning and still have dry heaves every day but not as exhausted and looking forward to having a bit more energy today.

This is a good day to live!

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@kamama94 Loving your indomitable [sp?] spirit! Bet the techs do, too. They like when someone wants to know, wants to be active in their own care and journey.

Would a tincture of belladonna help the dry heaves? Or Hylands belladonna pills? I keep some on hand for days that I am feeling "punky", and use to give my racehorses a drop or two after a stressful race, or shipping by truck. It is a good perk-you-up natural support.

Rest this weekend, except you'll tell us "there is much to do!"
Ginger

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kamama94 | @kamama94 | Sep 19, 2020
In reply to @bustrbrwn22 "@kamama94 May I ask what a “Death with Dignity” state is? Thanks!" + (show)
@bustrbrwn22

@kamama94 May I ask what a “Death with Dignity” state is? Thanks!

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@bustrbrwn22 Not sure what a death with dignity state is. I know that Missouri allows a person to make what's known as a living will and medical power of attorney whereby the patients can legally say no to CPR and other life-saving or life-prolonging measures and name someone to see that the patients' wishes are carried out if the patient is unconscious.Maybe someone else here knows of states which allow this.

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kamama94 | @kamama94 | Sep 19, 2020
In reply to @bustrbrwn22 "@feisty76. I totally agree! I love my Walgreen’s head pharmacist! When I was prescribed Narcan (?)..." + (show)
@bustrbrwn22

@feisty76. I totally agree! I love my Walgreen’s head pharmacist! When I was prescribed Narcan (?) (routine for my pain mgt clinic) I asked to speak to him privately since this was a new script. I started crying because I am so ashamed I have to take pain meds and even more embarrassed that it’s in conjunction with my benzo. I explained to him that for me life would not be worth living without these meds (I’ve tried many over 10 years) and would he show me how to use the narcan. He told me I had nothing to be ashamed of, these were needed meds for me and that he didn’t judge. What a beautiful person. My husband and I discussed the risks etc and he totally understands the risk as well as my decision. I still am ashamed if I have to pick up my pain or benzo prescription (my husband usually does because of my agoraphobia). I feel people are judging me - that I must be taking for a high when neither one actually does give me any type of high but they work pretty well to keep me from suicidal thoughts Jen

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@bustrbrwn22, I can relate, I take meds for major clinical depression but got over any embarassment long ago as I realized it's not my fault my physiology "misfires." As for agoraphobia, I'm a born hermit! With COVID I have a perfect excuse to have my scripts and groc delivered and with phone 7 online bill pay I only need to leave the house for dialysis three days a week.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 19, 2020
In reply to @bustrbrwn22 "@kamama94 May I ask what a “Death with Dignity” state is? Thanks!" + (show)
@bustrbrwn22

@kamama94 May I ask what a “Death with Dignity” state is? Thanks!

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@busterbrown There are several states that allow "Death with Dignity" at this time. Some call it "assisted suicide" but it is not legally considered suicide. There are very strict guidelines involved, including a short life expectancy, and allows someone to end their life, usually with a cocktail of specific drugs. There must be two different doctors sign off on it for a patient to receive the drugs, and conditions have to be met. This is different from having a DNR [do not resuscitate] order on file. The current states are California, Oregon, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, Vermont, Washington.
You can Google "Death with Dignity" and read more. Hope this helps.
Ginger

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 19, 2020
In reply to @gingerw "@busterbrown There are several states that allow "Death with Dignity" at this time. Some call it..." + (show)
@gingerw

@busterbrown There are several states that allow "Death with Dignity" at this time. Some call it "assisted suicide" but it is not legally considered suicide. There are very strict guidelines involved, including a short life expectancy, and allows someone to end their life, usually with a cocktail of specific drugs. There must be two different doctors sign off on it for a patient to receive the drugs, and conditions have to be met. This is different from having a DNR [do not resuscitate] order on file. The current states are California, Oregon, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, Vermont, Washington.
You can Google "Death with Dignity" and read more. Hope this helps.
Ginger

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@gingerw thanks for explaining.

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trishanna | @trishanna | Sep 19, 2020
In reply to @fiesty76 "@kamama94, Knew about the ginger ale but not the compazine tips for nausea. Ahem, a guy..." + (show)
@fiesty76

@kamama94, Knew about the ginger ale but not the compazine tips for nausea. Ahem, a guy I dated long ago suggested a bit of bourbon and coke to settle an upset stomach...it did seem to help the occasional upset. Alas, I later learned he imbibed too frequently of the spirits whether stomach problems or not....bye, bye! Smiles

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@fiesty76 Your date has company. In reading novels based in England, I was amazed to find bourbon a treatment of choice for both upset stomachs (as in seasickness) and chills from exposure!

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