Quality of Life

[amanda100wilson]

I switched from PD before the upgrade.  Can you not just bypass the drain by pushing the button so that it cuts to the fill cycle.  I often bypassed to the next cycle with the old software.

[Gerald Lively]

Ah right, listen up!!!!

A while back I managed to get off dialysis and I have stayed off dialysis.  At the moment I am undergoing radiation zappery for Lymphoma and will be on it for the remainder of this month.  I have no posted recently because my efforts to deveop a consensus on an advocacy approach’s was met with grumbling.  Well Holy Crap!  Why would anyone want to sit in that damn chair while some technician who is only passively interested in your presence, waltz’s around a room that could also serve as a warehouse while you have to make loud noises to get any attention?  Huh? Who?  Not me, folks?

And I had this random thought that someone else might also not like the idea of being connected to some damn machine for the rest of their life.

The technology is very old, per dialysis machine.  Why aren’t we pushing for something better?  Where is the research in regeneration?  It happened to me, why not you?  Say, where is your Nephologist?  Once a week?  Once a month?  Come on folks, this is your life.

Someone up there, a few messages ago, commented that meeting privately with your Nephologist means making an appointment.  I did that and it’s $80 more for the privilege.   Doesn’t anyone give a good goddam that you are sick and need something besides a hookup to a blood-sucking machine?  Well, I happen to think you do need something else, something besides a TV with 200 channels and nothing to watch.

Perhaps you have forgotten what life is, or was.  Where the hell is that social worker?

My recommendation:  get cancer instead of renal failure, they treat you better.

Gerald Lively
Mad as Hell!!

[Gerald Lively]

Read "mel75" and ask, Why doesn't someone help that lady? 
Thread "I hate this life."

[MooseMom]

  I have no posted recently because my efforts to deveop a consensus on an advocacy approach’s was met with grumbling.

I think you will find that throughout the "renal community", there is not a consensus about what the goal of advocacy should be because CKD/dialysis/transplantation are bedeviled by a myriad of concerns. 

I personally think that we should be targetting several things.  In order to have more funds and services for people on dialysis, I think we should have as at least one goal keeping as many people as possible from needing dialysis in the first place.  I think the numbers are unsustainable, what with our ageing population and with the increase of diabetes.  We can't afford either financially or socially to have so many people on this very burdensome therapy.  So we need CKD prevention, and we need more people getting transplanted and off dialysis.  Reduce the dialysis population as much as possible, and then advocate for a strategy that works to support those people who either cannot or do not want to go through transplantation.

So, for those patients, what is the goal?  Is it "rehabilitation" like what cardiac patients experience?  How do you define that?  Do we make sure that people get treatment that will enable them to continue/go back to work?  What if the patient is already retired?  What should be the goal of treatment for that population?  Do we just look at Kt/v, or do we look at "quality of life"?  And how does one define THAT?  Well, that's the question I asked in the first place.  So when we start talking about advocacy, I suspect that each of us has our own definition of that.

One group that in very involved in advocacy is Home Dialyzor's United (formerly NxStage Users)...amanda100wilson can tell you more about them.  Rich Berkowitz has made many trips to DC to give presentations to various committees in an effort to promote and encourage home dialysis.  If we could encourage more people to dialyze at home, then again you reduce the inclinic population, thereby freeing up more funds and staff for those patients who are more fragile and need more care inclinic.

There is more "advocacy" going in than you may realize, but there are such big monied interests involved that it is hard to hear the individual patients' voice.  You have Corporate America on one side and Medicare on the other.  A lot of advocacy work gets bogged down in the financials.  Medicare wants to save the American taxpayers money but the Davitas and the Fresenii of the world want to make it.  Patient centered care is the goal, but REAL patient centered care is so hard to come by.

But I do think that each of us can have a role to play.  Every time a new member joins IHD and is greeted by one of us who can give answers and support, we engage in advocacy because an informed patient is a powerful patient.  Every time a patient makes considered and articulate suggestions to their clinic, that's advocacy.

The technology is very old, per dialysis machine.  Why aren’t we pushing for something better?  Where is the research in regeneration?

You are right.  Just 20 years ago, I was stuck in the hospital in the UK for six weeks with preeclampsia and then recovery from a C-Section.  My family was back in Texas, and I had no access to a phone.  So, my then husband rented one, and it was the size of a brick.  Look how far mobile communications have come in that short time, but there has been no equivalent progress in dialysis technology.  But again, I think the system will soon be so overloaded that we will need better machines particularly for home use so that people can dialyze optimally at home.  Researchers at Wake Forest have constructed a biocompatible bladder that has actually been transplanted, but constructing a kidney is far more complicated.  I have heard rumblings that new machines are on the horizon with new technology that address the water problem.  It's not enough, but necessity is the mother of invention, and I feel that the necessity is quickly approaching DEFCON 1.

[Bill Peckham]

Just because it wasn't already complicated ...


Most people who have CKD3/4, millions of people, will die of heart failure before needing dialysis. If we did a better job treating CKD 3/4 those people would live long enough to be on dialysis.


We should screen and treat CKD 3/4 but it is likely that if we were successful more people would need dialysis and those people would be sicker and older.

[purgatory]

Amanda, that is the point - you can no longer bypass the initial drain on the upgraded Baxter at all.  The program does not allow it.

Moosemon, thank you for your compassion.  I posted a different thread under Home Dialysis in April explaining the cycler issue in depth.  I have looked at different cyclers, the Liberty and the Newton IQ, both made by Fresenius.  Coming from the Baxter, it's a long step down.  I don't feel either of them would work for me, plus Fresenius has just started implementing the same "upgrades" as the Baxter, so it too will be of no use to me.

And you are right, missing a blood draw means the center won't get paid - at least that's what they say

[Gerald Lively]

FYI

Bioengineered kidneys
 
Currently, no viable bioengineered kidneys exist. Although a great deal of research is underway, numerous barriers exist to their creation.[5][6][7]
 
However, manufacturing a membrane that mimics the kidney's ability to filter blood and subsequently excrete toxins while reabsorbing water and salt would allow for a wearable and/or implantable artificial kidney. Developing a membrane using microelectromechanical systems (MEMS) technology is a limiting step in creating an implantable, bioartificial kidney.
 
The BioMEMS and Renal Nanotechnology Laboratories at the Cleveland Clinic's Lerner Research Institute have focused on advancing membrane technology to develop an implantable or wearable therapy for end-stage renal disease (ESRD). Current dialysis cartridges are too large and require superphysiologic pressures for blood circulation, and pores in current polymer membranes have too broad of a size distribution and irregular features. Manufacturing a silicon, nanoporous membrane with narrow pore size distributions improves the membrane's ability to discriminate between filtered and retained molecules. It also increases hydraulic permeability by allowing the mean pore size to approach the desired cutoff of the membrane. Using a batch-fabrication process allows for strict control over pore size distribution and geometry.[8]
 
In recent studies, human kidney cells were harvested from donated organs unsuitable for transplatation, and grown on these membranes. The cultured cells covered the membranes and appear to retain features of adult kidney cells. The differentiated growth of renal epithelial cells on MEMS materials suggests that a miniaturized device suitable for implantation may be feasible.

[Gerald Lively]

SAN FRANCISCO (KGO) -- A breakthrough technology under development in the Bay Area could eventually free thousands of kidney patients from the bonds of dialysis. Instead, a device would handle kidney functions inside their own bodies.


After a transplanted kidney gave out in 2007, David Anderson spent three days a week hooked up to a dialysis machine.

"I don't leave San Francisco very often," he said.

But in the near future, thousands of patients like David could be freed from dialysis by technology being developed by researchers at UCSF.

"This is the device that will have filters that will remove toxins," Bioengineering Professor Shuvo Roy, PhD said.

Roy has a prototype of what could become the world's first, implantable, artificial kidney. The device uses sophisticated nano filters -- sheets of silicon etched with millions of microscopic pores.

"Only toxins and waste water will go through them, the rest of the blood will not," he said.

After it's purified, the blood flows through a second chamber, called a bio-reactor.

It's filled with bioengineered kidney cells that react with the blood. The living cells perform many of the same functions as a healthy kidney, including regulating blood pressure and producing Vitamin D.

Because of that ability, researchers believe the implantable device would not only free patients from dialysis, but it would treat them in ways traditional dialysis machines cannot.

"So the kidney does two main things, so one is it filters all the blood in the body and then it fine tunes the chemical levels in the body. What we do in dialysis is we do filtration part, but we can't really fine tune the chemistry very well," nephrologist and UCSF professor Dr. Lynda Frassetto said.

Frassetto said patients can experience a variety of symptoms in between dialysis sessions and some need drugs to perform functions normally handled by the kidneys.

"I think the most significant thing would be that we would d be able to adjust chemical levels all the time; that should make them feel a lot better," she said.

Unlike the mock-ups in his lab, Roy says the implantable model would work with the body's natural blood pressure, instead of using a pump and without using electricity it could theoretically be implanted in patients for the long term. It could potentially provide a breakthrough alternative to dialysis, which now accounts for $25 billion a year and 6 percent of all the money spent by Medicare.

"These things are very difficult and very expensive, but cheaper than $20,000 a month for dialysis," Anderson said.

Roy believes with adequate funding, his team could potentially have the artificial kidney ready for clinical trials within five years.

Written and produced by Tim Didion


(Copyright ©2012 KGO-TV/DT. All Rights Reserved.)



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[MooseMom]

Just because it wasn't already complicated ...


Most people who have CKD3/4, millions of people, will die of heart failure before needing dialysis. If we did a better job treating CKD 3/4 those people would live long enough to be on dialysis.


We should screen and treat CKD 3/4 but it is likely that if we were successful more people would need dialysis and those people would be sicker and older.

I have heard this before, but I wonder if it is really true?  If we treat CKD 3/4, doesn't that essentially mean treating diabetes and hypertension?  If you successfully treat these diseases, why is dialysis inevitable?

If after years of treated diabetes and hypertension, you have patients who are sicker and older, perhaps we should question whether or not they should be made to endure dialysis in the first place.  I think sometimes that we are so loathe to stop battling death and disease that we put our sickest and oldest in the torture chamber that is the dialysis clinic without thinking long and hard.

Gerald, yes, you got my point.  I really do believe that dialysis as we know it is merely too burdensome and way too expensive, and that's what will spur researchers into innovation.  This is where federal money could come in.  Spend money in this sort of research instead of handing it all to Davita and Fresenius.

[tbarrett2533]

First, I feel I must say that I am speaking from only my personal experience with Dialysis.

I started dialysis at a time in my life when my career was just starting off in the right direction (I just started when I was turning 31) I went to college, never got married because I was busy working and going to college planing my future then BAM Kindey failure so my quality of life well it went right in the toilet right along with all my hopes, and dreams!!

now you add body scars, caths, loosing hair, acne, fat, mood swings, non working organs, bitterness, resentment, anger, tiredness, side effetcs, pills, piils, pills, pills and more pills the realization that I will more than likely now be too old now to even have children (if I ever do get a transplant and can even get pregant after) so all that work and going to college to build that career which BTW I am just to tired to go to so I ended up leaving anyways so I did it all for nothing Kidney failure took it all from me!!! my career, my ability to have children and now i am left over a 100K in student loan debt, and a sh*t hole of a future.
now as for being "sick" well now that has improved from about 10% to 90% from in center hemo to CAPD and I am telling you that my overall quality of life has improved so much since starting CAPD!!! and if I ever have to go back to Hemo........... well rest assured I wont, you wont be reading my posts anymore b/c I will not be here anymore!!! no way I am putting myslef through that EVER again!!! death has got to be better than that!!!!!!!!   

and if one more person tells me to be positve I think I will scream!!!   
I think I do pretty good with the postiveness most of the time, but c'mon people I am friggin normal!!! need to vent too!!! 

[MaryD]

Three years ago when I was having chemo for non-Hodgkins lymphoma, I felt so crook that I sat down and worked out exactly what I needed to regard life as worth living.  I came up with three things.

The most important thing was my curiosity.  Without curiosity I might as well be dead.  I have always been extremely curious - about everything - science, politics, economics, current affairs, etc - anything except what Brad and Angelina are up to.  I felt a deep disappointment last week when there was an announcement about a space flight to Jupiter's moons.  It was to be ten years to lift off and ten more years till images come back, and for the first time for this type of event I realised I would probably not be around to see them.  At the moment I still have an overabundance of curiosity.

The next requirement was that I should still be useful.  I became a sole parent from when my two children were about to reach high school.  I had always worked full time, and I always did-it-myself around the house.  I would lay pavers, carry railway sleepers for the garden, run round on the roof looking for broken tiles, grow our own vegies, keep chooks - everything except electrical work and heavy plumbing.  I cared for 100+ foster kids.  My definition of useful has been bent to the point of breaking.  It has shrunk to 'I'm able to look after myself'.  Now it is being shrunk even more - I have applied to the council to have a cleaner come to help with my housework.  In Australia the federal and state governments pay the local councils to provide subsidised home help - cleaning, minor maintenance, gardening, transport - to help keep us oldies at home instead of in nursing homes.  It was an enormous step to take - almost an admission that I can no longer look after myself.  But what a relief that it has been taken.  Another useful thing I still do is design and knit exotic garments for an upmarket shop in the city.  I think that still counts as useful and it is also a form of meditation.  Oh and I still feed the cats!

The last requirement for a decent life was that I still have all my marbles. I am missing a few.  My main problem with this requirement is that I might not realise that I've lost more marbles than I am aware of.

When I was in my very late teens I almost died three times (one drowning, two skydiving accidents).  Then the only other girl who was skydiving at that time was killed.  She was a lovely girl and would have made the most wonderful mother and grandmother.  Ever since then I have been very aware that I have had 50 bonus years and 2 bonus children.  Just about every day has been valued and most appreciated.  I am still getting a lot of pleasure out of life in spite of dialysis (PD) - I'd like another ten years so that I can see my two cats off to the Great Cattery in the Sky.  My children and sister (a doctor) all know that if I need more than two days in ICU and if the medical staff can't guarantee that I'll come out better I went in, I'm not to be revived.  I don't feel at all morbid about this.  I've even outlined my funeral plans.  There will be no funeral - my ashes will be scattered near the Black Spur where I will be trodden on by lyrebirds and possums - nibblies will be served and champagne will be drunk - picnic style.

Death is life's last great adventure.  I can wait a few more years to try it.

 

[Bill Peckham]

Unlike the mock-ups in his lab, Roy says the implantable model would work with the body's natural blood pressure, instead of using a pump and without using electricity it could theoretically be implanted in patients for the long term. It could potentially provide a breakthrough alternative to dialysis, which now accounts for $25 billion a year and 6 percent of all the money spent by Medicare.

"These things are very difficult and very expensive, but cheaper than $20,000 a month for dialysis," Anderson said.

I worry when I read these numbers because they are not right, in that they are not the numbers that matter to anyone trying to bring a dialysis alternative to market.

The cost of dialysis, the Medicare allowed rate for a year of dialysis, is about $39,000/year (Medicare pays 80%). That $20,000 number could only be what a private insurer pays (over $1,500 per treatment) and the 25 billion is what Medicare pays for the medical care of beneficiaries with ESRD - all costs, Tx and dialysis.

These new devices have to come to market with a business model that is realistic. That's one of the barriers. It has to replace existing therapies so it would have to have similar reimbursement. Can it be done for ~$30,000/year?

[boswife]

oh MaryD, i loved reading your writing.  It sounds vaguely familiar too.  I love what you had to say and how you feel and wish that the times when i feel this same way, i could hold it always.  Theres 'those' times, and there others where im so uncomfortable with it all.  I will take this and read often.. 

[sandyHD]

Hi am am 26 years old and have been on HD for almost 3 years, and I can tell you that being on dialysis has its ups and downs (mainly because of the toxins piling up) but I choose to see things on the brighter side, so I can tell you that being on HD is not as bad as it seems to be.

Now you are on HD, your health will not be as stable as before so choose activities that are less physically draining, don't plan vacations for months ahead because you'll never know when you will get sick/weak.. A week in advance or two is ideal when planning out of town vacations.

Choose to do your errands in the afternoon or early morning where the sun is not at it's hottest, Hot temperature mean wanting to drink more water.

Accept within yourself that you are a patient and have to take a little more precautions than when you are not. This way, you can tailor your activities and plans based on the reality of your situation rather than making big plans and get frustrated when your body could not keep up.

In all, my life as a patient, is a little laid back than most of my friends, but i still get to enjoy the leisures in life like doing groceries, eating out, go to the beach.. i don't exercise but i make sure i get my walking to maintain my muscle mass, eat the right food, and avoid instances where i could get infected with airborne diseases.

they say getting a transplant is better than on HD. But right now, I am fine with having HD 2x a week. I used to be 3x but for cost constraints, I had to do with 2x..

and oh, i blog about my journey as a dialysis patient at this young age. some of it are during my 'depressed' mode,  that's when when toxin levels are high.. then i have happy blogs, that's when blood is clean.

for some reading, do view www.averysandygirl.blogspot.com for inspiration and reflection

[dialysisadvocate]

Quality of Life -- defined differently for each individual as individuals are unique unto themself with their own needs -- perhaps, a simple explanation is 'quality of life is being able to do the things you want and experiencing pleasure from such' the second part of QofL is to have delivery of care support such whcih would mean less complications that would interfere with your QofL and feeling more energized, perhaps by longer treatments, or home dialysis.. (just a brief overview). and the second part should be the first.

I always had to laugh when the Social Worker came around with the many papers that patients needed to fill out related to their  quality of life -- all about paperwork and being sent to CMS for analyzing etc.. but was anything ever done ,,,e.g. how can we get you to be able to enjoy more life activities? not really.

Providers can profess all they want about being focused on quality care resulting in quality life, however, as I continually stress, the day to day care often is NOT conducive to one's quality of life

opinions of Roberta Mikles www.qualitysafepatientcare.com

[jadey]

from my personal experience... my quality of life ever since starting PD has gone down the drain. However, I still don't think it is "that bad" because I am grateful that I am not on hemo.
I love eating out, travelling, staying out late. The PD cycler doesn't allow me to do any of this (conveniently). Although I am grateful that I still have good enough energy to go to school and study. Summer is coming and I am saddened that going to the beach wearing a swim suit will just be a dream for me because no one would want to see a catheter hanging out of my belly.

I feel like I'm a different person with my social network. They know about my condition but I think that they feel bad for bringing it up and talking about it with me. I also feel bad for bringing it up because I don't want to make it seem like I'm trying to make others feel sorry for me. It has been silence and a lot of keeping things inside.

Being young, you often get pressured onto doing certain things and it's really hard to say no to certain things by providing the reason of "because my kidneys don't work anymore"... example: being pressured to drink alcohol at a party.

Some days I feel ok.. some days I feel like shit. The past few months feels like I've been living in a nightmare and hoping that I will soon wake up.

[MooseMom]

jadey, I wish I could give you the benefit of all the wisdom of my years.  LOL!  But your post reminded me of a party I went to when I was in college, so I guess I was about your age.  This girl came in who I knew but didn't know well.  I noticed that she had these really cool rings on her fingers.  Each ring was like a triangle, surrounding the middle knuckle on each finger.  So I walked up to her and said that I really liked her rings, and where did she get them?  They were just so unique!  She smiled and explained that she had rheumatoid arthritis and that the rings helped keep her knuckles from becoming deformed.  I have no idea if these rings had been specially made for her or if they were prescribed by her doctor.  But they were cool.  Anyway, my point is that she just calmly explained her condition, and no one really thought twice about it. 

I really hate to think of any disease causing social isolation at a time when friends are really the center of a person's life.  The old me would like to tell the young you that people are rather self-absorbed and probably would be cool with your dialysis if you helped put them at ease.  If you don't think it's a big deal, then they won't, either.  I'm sure your friends care about you and so don't want to make you feel bad, but...well, you're feeling bad.  What can you do to change that, do you think?  They are young and inexperienced in dealing with people with chronic illnesses; they don't know what to say, so they say nothing.  I'm afraid that they are going to look to you to give them a clue in how to deal.

If you could be assured that they'd be ok with everything, what would you ideally like them to know?  What would you want to say to them?

[Grumpy-1]

I would be willing to bet that all of us when we first found out we had kidney failure were concerned at to what others (friends, co-workers, etc) would think or react.  The motorcycle group I ride with has always been supportive of me and even to the extent to remind me that it is time for an exchange.  Example:  we had ridden out to this nice coastal town for lunch and it was time for an exchange.  This would be one the first times I had done an exchange while with the group and I was concerned about it.  I told the group to go ahead and get a table, order and all that stuff and I'd be in when I could.  NO - all of them stayed outside with me while I did the exchange and then we all went in together.  No one seemed at upset or shocked at what I was doing.    As has been said, if you aren't embarrassed about it, then others won't be either.  Grumpy

[jadey]

jadey, I wish I could give you the benefit of all the wisdom of my years.  LOL!  But your post reminded me of a party I went to when I was in college, so I guess I was about your age.  This girl came in who I knew but didn't know well.  I noticed that she had these really cool rings on her fingers.  Each ring was like a triangle, surrounding the middle knuckle on each finger.  So I walked up to her and said that I really liked her rings, and where did she get them?  They were just so unique!  She smiled and explained that she had rheumatoid arthritis and that the rings helped keep her knuckles from becoming deformed.  I have no idea if these rings had been specially made for her or if they were prescribed by her doctor.  But they were cool.  Anyway, my point is that she just calmly explained her condition, and no one really thought twice about it. 

I really hate to think of any disease causing social isolation at a time when friends are really the center of a person's life.  The old me would like to tell the young you that people are rather self-absorbed and probably would be cool with your dialysis if you helped put them at ease.  If you don't think it's a big deal, then they won't, either.  I'm sure your friends care about you and so don't want to make you feel bad, but...well, you're feeling bad.  What can you do to change that, do you think?  They are young and inexperienced in dealing with people with chronic illnesses; they don't know what to say, so they say nothing.  I'm afraid that they are going to look to you to give them a clue in how to deal.

If you could be assured that they'd be ok with everything, what would you ideally like them to know?  What would you want to say to them?

Thanks for sharing that MooseMom!

Ultimately I want them to know that I can;t do certain things anymore and why that is. But at the same time, I don't want to be left out because I won't be able to do certain things. For example, going out late at night, going swimming at the beach in the summer. I don't want to make others change their plans for me, but I also feel bad to always be the person who is like "it's okay you guy's have fun". It's a complicated feeling.

and Grumpy-1 -you're so lucky to have such a supportive group.
I've always been afraid of being judged. Realistically, a lot of people who are not exposed to sick patients or hospital settings would be totally freaked out if they saw my catheter.. never mind me doing an exchange. If I wasn't in this situation, I would feel squirmish too. I don't want to make others feel uncomfortable.. so I always feel like I'm constantly hiding or doing things discreetly.

[MooseMom]

Oh jadey, being young can be so much fun but can also be so stressful.

That desire to want to keep from making everyone else uncomfortable...that never goes away, really, no matter how old you get.  But I have learned that you just cannot be responsible for everyone else's feelings.  If you were to stand up on a soapbox and tell all of your friends your story, some of them would be very sympathetic and would want to do everything possible to make you feel included, others would thing, "Oh, ok," and then would just get on with their lives, and one or two might feel uncomfortable.  So, how do you control what EVERYONE feels and how EVERYONE reacts?  Well, you can't.  All you can do is join in life as much as your physical condition will allow.

If your closest friend found out she had cancer, what would you want her to share with you?  Would you rather her not tell you about it, or would you want her to confide in you and feel comfortable with you?  Would you be squeamish if you saw her losing all of her hair?  If so, do you think you would "judge" her or start avoiding her?

I understand your fears about being left out or being judged or making everyone uncomfortable, but do you REALLY think that would happen?  I mean, just how GOOD are these friends of yours?  You may be right...maybe they WOULD shun you.  I don't know them, but you do.  So I'm really sort of curious...do you really think that they would be so thoughtless and unkind and that they would expect you to hide yourself away just for their own personal "comfort"?  Gosh, you don't have anything to be ashamed of.  I know that when you're young, it's hard when you think you are different, but your friends have to grow up some day, you know?  Maybe you're not giving them enough credit.  Or, maybe you know them so well that you KNOW they will "judge" you.  I sure hope not.  What do you think?  Do you think you can trust these people?

[jadey]

I actually do have a close friend of mine who was diagnosed with rectal cancer just a few months before my own ckd diagnosis. In my nature, I asked her all sorts of questions and made sure I know every single detail of her condition. I'm so glad that she was comfortable with sharing that information with me. However, when I visited her and see how much she has changed, how much weight she has lost--I feel heart broken. It definitely makes me feel very uncomfortable to hear about her condition but it does not stop me from listening or supporting her.

And ya you totally have a point in your last comment. I know that a majority of my friends are sympathetic and will not feel uncomfortable because of my condition but I think it is really my own insecurities that make me think this way. I trust that I will not be judged by my friends but I cannot say the same for feeling uncomfortable. Everyone has a different tolerance level and although some may feel uncomfortable, they are still willing to step over it and face the problem...while others would rather conserve themselves and avoid the situation. Like you said, I cannot control how others feel but when I see how they react or a lack of reaction to what I have to say--it doesn't feel good.

[Whamo]

I wish I felt uncomfortable!  I am anemic.  My wife says I should check my hemocrit numbers.  I went to the beach house yesterday to visit my mother for her 89th birthday.  We ate lunch at Fisherman's on the pier overlooking the waves.  I had scallops and rice.  It was wonderful.  It was great to see my sister again, and I was glad my mother liked her gift, a wine basket.  The weather was fog and sun mixed together.  But afterward I just kicked back in the chair and dosed off.  I spent most of today in bed, falling asleep, dreaming, waking up, then dosing off again.  I jumped on the treadmill for 20 minutes and walked a mile.  I usually walk two or three times that.  I hate being anemic!

[jadey]

Whamo,

Are you taking eprex to control the anemia?

[MooseMom]

It definitely makes me feel very uncomfortable to hear about her condition but it does not stop me from listening or supporting her.

Good for you.  What a wonderful friend you are to put her needs before your own discomfort.

I know that a majority of my friends are sympathetic and will not feel uncomfortable because of my condition but I think it is really my own insecurities that make me think this way. I trust that I will not be judged by my friends but I cannot say the same for feeling uncomfortable. Everyone has a different tolerance level and although some may feel uncomfortable, they are still willing to step over it and face the problem...while others would rather conserve themselves and avoid the situation. Like you said, I cannot control how others feel but when I see how they react or a lack of reaction to what I have to say--it doesn't feel good.

You are absolutely right, and I apologize if you felt that I was pushing you into doing something you don't feel comfortable doing.  Your feelings are important, and you have the right to protect yourself, and if that means staying silent about your dialysis, then that's what you do.  But I would encourage you to hope that one day soon, your relative discomfort will largely disappear, and you will finally say, "Well, screw this.  I don't need to avoid my friends anymore."  It takes time.

You know, I was thinking about you and all of this earlier, and it strikes me that our young people have always been the ones who have advanced the notion of tolerance and acceptance.  Young people have been at the forefront in the fight for civil rights for all kinds of people, depending upon the time in history...civil rights for African Americans and the LGBT community, for example.  Each generation seems to be more open to accepting differences in people.  Maybe your friends will be more accepting of you than you think.  I hope they will help you with the insecurities that come with being young and "different'.

I wish I could think of something to say that would be more helpful to you.  I just hate the idea of you missing out on the fun of being young. 

[Grumpy-1]

maybe it is old age, but I not longer care what other folks think about my condition.  Example I was a Myrtle Beach Bike week rally last week and time came for an exchange.  I just moved my bike to a shady spot in the parking lot and unpacked the supplies and dialysis bags. Hooked up and let it do it's thing. Folks of all ages walked by and looked, but no one seemed to be too concerned or taken back at the supply bag hanging from the handle bars or the drain bag on the ground.  While I don't make a big deal of it, I'm also not afraid to explain to someone who asks.  Grumpy