I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on May 25, 2012, 07:01:06 PM
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I apologize for the length of this post. I've learned a few things over the past few days that I thought might be interesting to some of you.
As you may or may not remember, I have been listed at Rush for almost 2 years. When I went for my pre-tx eval in Feb 2010, they discussed with me the ECD list. I agreed to sign up for it because, well, it seemed a good idea at the time. At no time did they push me into it or try to talk me out of it. I've received several calls but have turned them down because I am not yet on dialysis and so do not feel so desperate quite yet.
I have just returned from UW-Madison because my neph wants me to be double listed there. I spoke with all sorts of people, as you do at any pre-tx eval. I spoke with one of the tx nephrologists (I had not had the chance to talk to one at Rush, so this was interesting), and she gave me two bits of info that were particularly interesting. First, she said that she did not feel that an ECD kidney was appropriate for me. I appreciated her candor and in fact had been thinking for some time now about getting off Rush's ECD list (and I will when/if Madison officially accepts me).
Next, she explained more about kidneys from donors who die from "cardiac death". She was quite blunt and told me to avoid such a kidney if at all possible. She explained that if a potential donor spends too much time with erratic and insufficent heart function before death, the kidneys can be affected and can be ruined. If a donor is instead brain dead, his/her body is "kept alive", the heart is kept pumping and the kidneys can still function.
This had never been explained to me before. I frankly had not really thought about it.
So today, my husband and I were enjoying a relaxing tram ride through the arboretum, and I got a call on my mobile from Rush. They had a kidney and wanted to know if I would be interested. I said, "I assume this is an ECD kidney", and she replied, "No, it's a CDD kidney, which is a bit different."
The donor was a 12 month old baby. Isn't that just so awfully sad? She explained that I would be getting both kidneys and that they would grow to accomodate my body size. But she was very thorough in explaining that the parents had decided to take the child off life support, but no one had any idea how long it would take for the heart to stop beating. If it took too long, blood would pool and start to clot throughout the body, and all organs would be either damaged or rendered useless. OR, the baby's heart could stop immediately after withdrawal of support, and the organs would be fine, but no one could know for sure.
I couldn't believe that I was hearing the very scenario that Madison's tx neph had warned me about.
Here I was, having a peaceful day, while there was a set of parents out there who were having to wait for their baby to die. This is all just so cruel.
Rush's coordinator went on to call to my attention that the renal vessels in the baby were, of course, very small, and this might complicate matters should I accept the kidneys.
In the end, I declined, hoping that someone else might be a more appropriate recipient.
Anyway, it was all very sad, but I did want to post about it because I thought it might give some helpful information to a fellow IHDer.
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I've never heard of CDD. The whole story is very sad. I would have hoped they could offer the kidney to a child who needed it. I saw a girl, maybe 8 yrs old, at my transplant clinic the other week.
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I'm surprised you didn't meet the transplant neph. When I went to Loyola, Northwestern, and UIC all meetings had the transplant doctor there. Rush had a doctor do a presentation at my dialysis unit tho.
I agree with the Madison doctor about you shouldn't be on the ECD list and glad you learned something from the trip.
Good Luck with that center MooseMom.
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I've never heard of an adult being given children's/babies' kidneys before, is that normal practice wouldn't a child or baby be better off with them? you're right it is really sad, my daughter is 12 mths next mths Can't imagine it. my friends boy is 14 mths & has been told he'll need Kidney transplant in near future :(
How have you dealt with having 6 i calls & nothing coming of them?
Do you thinK you'll come off the ECD list then if Madison ?When will you know ? good Luck , x
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We have had another member receive both of the baby's kidneys, although she is in her early 20's.
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I've never heard of an adult being given children's/babies' kidneys before, is that normal practice wouldn't a child or baby be better off with them? you're right it is really sad, my daughter is 12 mths next mths Can't imagine it. my friends boy is 14 mths & has been told he'll need Kidney transplant in near future :(
I'm sure that if there was a baby or child who was a better recipient than me, the kidney(s) would have been offered to them. I don't think it is "normal" practice, but what is "normal" about any of this? It's entirely possible, even probable, that the kidneys were offered to other babies or children but were declined by their parents. I have no way of knowing how many other people were called before my name popped up.
How have you dealt with having 6 i calls & nothing coming of them?
Do you thinK you'll come off the ECD list then if Madison ?When will you know ? good Luck , x
I have never been first in line for any of the kidneys I've been offered, so I never got my hopes up.
The transplant board at Madison meets every Monday, but since this coming Monday is a holiday, the board will meet on Tuesday. My coordinator will try to get my case scheduled for presentation Tuesday, but there is a possibility that the board won't get to hear my case until the following Monday. Once a decision has been made, my coordinator will call me and let me know. I will then get a confirmation letter, and at that point, if I am accepted, I'll ask Rush to take me off the ECD list.
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I'm surprised you didn't meet the transplant neph. When I went to Loyola, Northwestern, and UIC all meetings had the transplant doctor there. Rush had a doctor do a presentation at my dialysis unit tho.
I agree with the Madison doctor about you shouldn't be on the ECD list and glad you learned something from the trip.
Good Luck with that center MooseMom.
What was/is a bit weird was that at Rush, I didn't meet with the transplant neph but I did meet with one of the surgeons. At Madison, I met with a tx neph but not one of the surgeons. I guess they have me meet whoever has shown up for work that day. LOL!
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I should have said team because I met all involved with the process, but each does their own thing. Of all the centers at the time Rush was or is the only center who will not take in a transferred transplant patient. Meaning if someone moves to Illinois, they will not accept them to take care of their post transplant care.
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Giving 2 infant kidneys to an adult is not unusual.
There are very few babies waiting for kidney transplants, and they do get priority.
You can see the breakdown in the pie chart below, by age.
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How is it possible to be transplant listed if you are not on dialysis? Here in Ontario you are only listed once you begin dialysis.
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In the US, you can be referred for a pre-tx evaluation once your egfr drops below 20. You do not have to be on dialysis yet, although most people end up on dialysis while awaiting a cadaveric transplant. My neph has been expecting me to go into complete kidney failure for almost 8 years now. I've had my fistula up and running for over two years.
I don't know why the rules in the US are the way they are. I know it is not the same in Canada nor in Australia, but I thank God every single day that I at least have some small hope of being able to avoid dialysis. I doubt that dialysis will never blight my life, but at least there is some small hope.
You have to remember that dialysis as delivered here in the US is close to barbaric. We're not civilized like the rest of the developed world.
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You have to remember that dialysis as delivered here in the US is close to barbaric. We're not civilized like the rest of the developed world.
With all due respect, don't you think "close to barbaric" is a bit over the top?
8)
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Moosemom, why do you think that care in the US is barbaric? What makes it barbaric when compared to other countries? Where is your evidence? I am just interested to know?
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I think in some dialysis centers the care is awful. I had a great center. But I suspect there are also uncaring doctors in England or Australia and if you get one of them it feels barbaric there too. But I thought the 3 days a week thing was standard in most countries.
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LOL...Ok, "barbaric" may be too strong a word, but don't forget that dialysis practice in the US, unlike that in Canada, Australia and the UK, is a for-profit enterprise, and there is therefore always that temptation to maximize profits at the expense of patient safety, especially if you are sicker or more vulnerable.
Outcomes are better in clinics that are not-for profit. The profit motive, I believe, is a disincentive to provide the best care at all times. Please, someone, tell me I'm wrong.
When I talk about "barbaric", I'm referring to inclinic D, not home hemo or PD. The very fact that you can get life saving treatment ONLY on certain days and at certain times is barbaric. The fact that clinics will not dialyze you on a Sunday is barbaric. We have become so used to this paradigm that we don't even bother to question it. If you want to have the best, safest and most effective treatment, you have to dialyze yourself at home, and the fact that more clinics do not support this is barbaric.
Most people who post here on IHD are educated and determined to get the best treatment possible. We are generally younger and less sick. We are in the minority.
I'm sure a lot of you read the same nephrology blogs that I do and keep updated with the newest thinking in the field. Unfortunately, there doesn't seem to be a lot of "new thinking" nor a lot of new practice and technology unlike what we may see in the treatment of cancer, baldness, obesity and other more "popular" ills.
Of course there are uncaring doctors in other countries. I don't care if my doctor "cares", but I want him to be efficient. That the "3 days a week thing" is standard in most countries is also barbaric, but at least they don't have two standards of care, one for people with private insurance and another for people on Medicare or the equivalent.
Amanda100wilson, I don't have the time at the moment to provide links with evidence that American outcomes are worse than that of other countries, but go over to Fix Dialysis or Hemodoc's blog or The Kidney Doctor and other blogs that are listed on those sites, and you'll find all of the evidence you need. Or what would be really fascinating is to go over to Home Dialysis Central and ask Dr. Agar what makes dialysis in the US so awful. He's Australian and has travelled all over the world, particularly Asia, and would be delighted to answer THAT question! LOL! Ask him to tell you about dialysis in places like Hong Kong and Singapore.
If you are lucky enough to have a great center with caring people who will let you self-cannulate and who will be happy to give you all of the information you need and who will listen to you when you sense something is not going right with your treatment, a center that has in place rigid infection control protocols AND FOLLOWS THEM no matter how much it costs, a center where all of the staff is educated and dedicated run by a company to whom profit is of secondary importance, then you have hit the jackpot! Consider yourself lucky.
My mother was on SHD for five years, and what I saw was barbaric. One clinic in particular was actually quite good, though, to be fair, but her clinic at home was awful. But she was elderly and, therefore, disposable.
As long as people are making money off of your illness, it's barbaric. How many times have our Canadian, Australian and British members been astonished by how "free market principles" are applied to something like dialysis?
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This should probably be posted in the news articles forum, and maybe when I have time, I'll post it there (or a mod can move it), but here is one bit of "evidence" of how dialysis as currently practiced in the US is harmful. If you choose to use that a synyonym for "barbaric", I won't argue. True, the thrice weekly template is used in other countries, but you stick in the quest for profit and you will get a system that all too often leads to patients being debilitated by the very treatment that is supposed to help them, and no one seems interested in change. That's barbaric in my world.
Stunning Consequences of Thrice-Weekly In-center Dialysis
Joel D. Glickman, MD
Posted: 04/27/2012
Cardiovascular disease is the leading cause of death in patients receiving dialysis, accounting for 40% of all deaths. The usual risk factors of hypertension, sex, smoking, diabetes, and lipid levels do not account for these extraordinarily high cardiovascular death rates, which are scores, if not hundreds, of times higher than those of the general population.[1,2] Recent studies examining cardiac function during thrice-weekly in-center hemodialysis have exposed some of the dangers of hemodialysis as well as potential strategies to reduce these risks.
A series of interesting studies on the nature and sequelae of dialysis-induced myocardial dysfunction reveal a silent killer that occurs all too frequently during hemodialysis. During this treatment, patients with normal coronary arteries experience regional wall-motion abnormalities and myocardial stunning that are associated with a decrease in myocardial blood flow.[3] A study using positron emission tomography demonstrated that dialysis induced regional wall-motion abnormalities even in nondiabetic, relatively young adults (average age of 45 years). Even though ultrafiltration volume and intradialytic hypotension were determinants of myocardial stunning, significant decreases in myocardial blood flow could be detected within 30 minutes of initiation of dialysis when ultrafiltration was only 100 mL.[4]
Furthermore, over time, patients who experience stunned myocardium during dialysis develop a fixed reduction in systolic function, with a significant decrease in ejection fraction that does not increase at times of peak stress during hemodialysis.[5] Mortality was higher at 12 months in patients who had myocardial stunning.[6] Finally, Holter monitor studies show that patients experiencing dialysis-induced myocardial stunning also have increased ventricular ectopy.[7] Thus, the dialysis-induced decrease in myocardial blood flow can lead to myocardial stunning and cardiomyopathy and increases the risk for ventricular arrhythmias and death.
The story gets scarier. In a pediatric hemodialysis population -- patients aged 2-17 years, who should not have coronary artery disease -- 11 of 12 children experienced intradialytic myocardial stunning. Children, therefore, are probably at the same risk for persistent cardiac dysfunction and arrhythmias as their adult counterparts.[8]
It seems, then, that myocardial dysfunction during dialysis is not due to coronary artery disease but to the treatment itself. In comparison, regional wall-motion abnormalities were not observed in a study of patients receiving peritoneal dialysis.[9] More recently, in a study of patients receiving home hemodialysis (both short daily sessions and nocturnal sessions), regional wall-motion abnormalities were much less frequent than in patients receiving in-center hemodialysis, and the frequency of regional wall-motion abnormalities correlated with ultrafiltration rates.[10] One cannot help but draw a parallel with a recently published study in which high ultrafiltration rates (greater than 13 mL/kg/hr) were associated with increased all-cause and cardiovascular mortality, and rates greater than 10-13 mL/kg/hr were associated with congestive heart failure.[11]
It appears, then, that high ultrafiltration rates are associated with cardiovascular disease and that one of the etiologies may be intradialytic ischemia and myocardial stunning. Other factors must also contribute, because wall-motion abnormalities were noted even in the absence of ultrafiltration.
What can we do to decrease myocardial stunning during hemodialysis? Common sense suggests that we need to limit ultrafiltration rates to less than a reasonable 10-13 mL/kg/hr, which is quite hard to do if patients eat foods high in sodium, drink too much fluid, and are prescribed short treatment times. Cooler dialysate temperature may ameliorate intradialytic myocardial stunning,[12] as will biofeedback dialysis, during which ultrafiltration rates and sodium conductivity is adjusted according to changes in blood pressure.[13]
Maybe we need to abandon thrice-weekly in-center hemodialysis in favor of peritoneal or more frequent home hemodialysis, which admittedly is my bias. Certainly, we should encourage better modalities for patients who are capable and interested. It would be interesting to see whether in-center long-duration nocturnal hemodialysis avoids these wall-motion abnormalities.
Perhaps other vital organs are similarly affected by the ischemic consequences of in-center hemodialysis. It doesn't take much imagination to consider that the rapid decline in residual renal function in patients receiving thrice-weekly hemodialysis as opposed to peritoneal dialysis is mediated by renal ischemia during hemodialysis. Finally, it has been suggested that the cognitive decline we observe in patients receiving dialysis may be due to dialysis-induced cerebral ischemia.[14] Although patients may look comfortable during hemodialysis, in reality this innocuous-appearing procedure has a much more stunning effect than meets the eye.
Medscape Nephrology © 2012 WebMD, LLC
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Transplaning two baby kidneys into an adult is done with some frequency. There are a couple of members who can tell their journey of receiving 2 small kidneys. Remember, you are not called unless your name has come up. You will not get the kidney if someone is a better match or just because they have more time on the list.
I met with every neph on the transplant team and each surgeon so we could all have some kind of connection. They don't want surgery to be the first time they have ever seen you. I am surprised, Moosemom, that you hadn't met everyone at your first center.
I am always surprised when Americans complain about their medical care. Yes, we need insurance and all of it is expensive BUT, no one would approve for the sales tax to be raised to 17 to 20 percent on the dollar. A lot of countries have high taxes to pay for their medical systems. And if they want "private" care, that is out of pocket. And what is dialysis like in other countries? Ask around. What about China, mid-East, Africa? I think sometimes we read too many reports and research results --- like reading too much about how to be the perfect parent! Any research paper can be written to meet any objective. But compared to the majority of the world, we still have it good. My neph's family is in Egypt. He personally bought a NxStage set up a few years ago, had it shipped to Egypt for one of his relatives and then went to train him. His relative is lucky that he has a rich relative in the US!
I have been a member here for 6 years. "Back in the day" a member getting a transplant was rare -- maybe a handful a year. Now many more are getting new kidneys. Also so many are doing home dialysis. That has grown greatly. To me, so much has changed in the 10 years since I was diagnosed. My nephrologist had never had a patient with a PRA of 100%. Now he knows all about it and ways to treat it. Things have progressed. Look at our member who was part of a trial and is doing good, helping make new ways for transplants. My best friend in the 60's was diagnosed with kidney failure ---- things have really changed since then!
Yes there are docs, clinics, centers who are in it for the money. I think I'll still stay here for my treatments, medicines and keep trying to make a difference in any way I can. Barbaric does sound like an extreme term. And I agree that dialysis can be harmful, as well as the anti-rejection meds, chemo, IVIG --- they all can do harm. But, do you choose to try to live or just let nature run it's course? I know that I am always on the sunny side (well, usually!) and I try to be positive. So these are just my opinions on how I see the situation. :thumbup;
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Oh, I forgot ---- 6 CALLS!!!!!!! That is amazing. You must have a great PRA and a good blood type. Good for you!!!! The right one will be coming before long. Mine isn't a perfect kidney, but it is a perfect one for me. Best of luck! :2thumbsup; :clap; :yahoo;
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Yes, Paris, you are right in that we have it better than in most third world countries, but that's not good enough. I don't want to be told that I should be happy with what I have simply because this is not Iran or outer Mongolia. LOL! We can do better. There is no reason that clinics should be closed on Sunday simply because dialysis providers don't want to have to pay to open and staff them. We all know that CV deaths peak after the two day break, so why don't we get rid of the two day break? Jeez, even my local grocery store is open on Sundays because people need food every day just like they need their kidneys to function every day.
Why are we so married to this thrice weekly template? It's because of money. And THAT is the barbaric part.
It's not the treatment or the medicines that are the problem, rather, it is the way that they are administered, and they are administered with an eye on profit. We all know about how some clinics overdosed their patients on ESAs because that was a good profit stream for them, but now that this med is bundled, dosages are dropping. And that's just one problematic element of for-profit dialysis, American style.
Of course, not all clinics operate this way, but the fact that there are good clinics and bad clinics...that there are ANY bad clinics at all...is just not right.
I have a friend in Norway who came to visit me recently, and we talked about tax policy in our respective countries. Norway has high taxes, but they also spend a lot on their medical care and other benefits. That is a choice that that particular electorate has made. They can change their minds if they want through democratic elections, but they like not having to worry about whether or not an illness with bankrupt them. I personally would not mind paying more in taxes if I could be sure that it would buy peace of mind for all, but that's not going to happen here in the US. Instead, we have to rely on our health care providers to look at us as more than a bag of insurance money.
With more and more people facing ESRD because of the epidemics that are obesity, hypertension and baby-boomer ageing, we are going to have to find better ways to treat people. I'm sure that "back in the day", tx was rare, but so was dialysis.
I can see why one would be annoyed by "rich Americans" complaining about their medical care, but the dialysis population is particularly fragile and voiceless. So many patients are elderly or are from a minority group who don't get the same quality of care as those who are more educated and more insured. I'd like to think that my complaints are more than empty words. I can't do much for people in China, but I can try and advocate for people here.
I'm glad, Paris, that you are generally optimistic because I am most assuredly not, so you bring balance to my emotional state. LOL! Thanks for that! :cuddle;
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The last I heard there were nearly 400,000 Americans on dialysis, with Medicare paying the bulk of the cost.
I imagine the bill is staggering.
In other countries it is just not available to so many.
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Why are we so married to this thrice weekly template? It's because of money. And THAT is the barbaric part.
Does "every other day" in-center hemodialysis regularly occur in countries with better mortality rates? Or does Japan, England and basically the rest of the developed world still use the thrice weekly template?
8)
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The norm here is thrice weekly also but the last time I was on D in a self-care clinic in Toronto I was not feeling very well on that formula so I asked my neph if I could do more frequent dialysis and started on 5 times a week pretty much immediately. I think that the main issue here is space at the hospital centres. We don't have for-profit dialysis centres so it comes down to space and numbers. However, if a person does home hemo for example I think that the number of times per week could be very flexible. Many patients want to do as few sessions a week as possible so not sure how many requests are made for more frequent dialysis.
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I think everyone would love a better dialysis system, but I think we are also glad we have (for the most part) clinics that can help us. And when I say "back in the day" I meant from when I joined this site. Few did home dialysis. Little information was available. Now, it is more readily available and patients know to research it and find it.
In the past 6 months, we have had about 20 international graduate students with our family. We have had great discussions on politics and health care. The countries represented were: France, Argentina, Peru, Columbia, England, Mexico, Chile, and Spain. They all have high taxes, but many do not have the medical rights in exchange. Most said they can get basic care, but specialty care costs them extra. These aren't third world countries. Chris from France, said he would rather be here if he had a major disease. So, anyone's view will be different. They also think we don't want to part with our money to pay 20cents on the dollar for taxes. We all complain about any tax and most of us feel we pay too much already. There are lots of diseases not getting the proper treatment here. Too little resources for too many people. My sister in law (who died of breast cancer) was a wealthy woman. She didn't have to settle for the treatments that were offered in her city, Atlanta. She was privately available to go to the same Doctor's that Lance Armstrong went to, then to Houston for other cutting edge treatments, and then to Ohio State University for a trial. I could never afford the same. Nor would I expect my insurance to send me from state to state looking for an answer. And we are back to money! Even with insurance, the money has to be spread around.
I don't think our system is the model to follow. We have a long way to go. But, I will acknowledge that in 10 years, things have improved. And with more people being educated, it will continue to improve. If Diabetes could be better controlled, it would help the number of renal patients. Lots of things have to be in place. People continue to move here for better medical treatments. If one thinks another country would be a better fit for them, maybe thoughts of immigrating should be entertained. I'm staying and trying to make a difference. It is all how people look at things. Half full or half empty.
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I'm not sure it is true that people move here for medical treatments. I don't think they can, unless they are very wealthy. You can't just move here and access Medicare, and most insurance companies have a residency requirement before they will begin to insure you (I know this to be true because when I first returned to the US, I bought a health insurance policy, and when I tried to make claims, they tried to deny me, claiming that I was not a citizen and/or did not live in the US for 12 consecutive months before making a claim).
I don't doubt that some non-Americans would rather be here if they had a major disease, but that's contingent upon being able to access the system in the first place. We can have all sorts of political discussions about THAT if you want, but I don't feel up to that, but I will say that I don't think anyone in the US, no matter with which side you align yourself politically, truly believes that our current medical system serves everyone equally well. As you know, I lived in the UK for a long time, and at just about every election, politicians would fall all over themselves ensuring people that they would NOT be considering the "American system" as a guide for reforming the NHS. There is a reason no other country functions in this regard like we do.
It is absolutely true that patients nowdays have much more access to information, but I know that in my case, that information has come from the internet, not from my nephrologist, and I don't think that's particularly unusual. I've ready too many posts on IHD from people who have said that everything they've learned about CKD/ESRD has been from this site or from other such sites. This information really should be coming from our medical community, and the fact that it does not raises some red flags. However, I do believe that all of us can pick up the slack and do our bit to inform and educate.
I would really like to know from those of you who have been on dialysis for over ten years which improvements you have seen over the past decade. I know that some would argue that we have actually gone backwards, ie, that we should be practicing dialysis in the same way that it was practiced when dialysis was first "invented". I know that some would argue that ultrafiltration rates are too high and people are dialyzed too quickly, mainly because there are so many people to be treated in a day. Of course,NxStage is an enormously important stride forward, but when you think about how quickly we have come to the age of iPads and iPhones, technological innovation in dialysis seems to be rather stagnant. Perhaps, though, we are on the cusp of breakthroughs that will make dialysis obsolete.
Hemodoc has an interesting entry, Zach, on his blog comparing US dialysis compared to Asia. If you read the comments following the blog entry, you will see that he specifically addresses the difference in the mortality rates between Japan and US. You may have to look at the DOPPS study for more specifics, though. I'll leave that for you as I need to go do other stuff. LOL!
http://www.hemodoc.com/2012/04/is-american-nephrology-falling-behind-asia.html
Perhaps it is true that I read too many blogs and research papers, but I like to see what others in the renal community are thinking and doing, and what IS interesting is that I sense that there is more and more evidence being gathered that more dialysis really is better dialysis. This is important for those people who want more dialysis in the first place. I think it is important for patients to be educated if they have a chronic disease, and I'd wager that most renal patients in the US have no idea that the nephrology community is even considering and studying this issue. I do read a fair number of abstracts for papers that seem to be written solely because the authors want to be published, but there are other, important studies out there that will impact upon what modality choices we will have in the future. These studies would not exist if everyone was complacent and satisfied with American dialysis practice. It's not a case, in my humble view, of seeing any glasses as being half full instead of being half empty, rather, it is a matter of wanting to serve a fragile population as well as possible with the best treatment as possible, not only for ethical reasons but also for financial ones. If poor dialysis leads to suffering AND more expensive hospitalizations, then none of us win. We should always strive for better care.
One last thing..."too little resources for too many people." That may be true. I honestly don't know. But I have observed a couple of things in my life. I've seen men who can kick, throw, hit or dribble a ball paid millions upon millions of dollars; I like to be entertained as much as the next person, but maybe the money we have in this country could be better spent. Also, I got a statement of benefits from my ins co outlining what they were charged for my last set of cardiac tests. Almost $12,000, half of that for the 25 minute use of the thingy you lie in while pics are being taken of your heart. Really? Does it really cost the hospital so much to use that machine on me? No wonder there are too little resources! And I don't think money is "spread around"...it is pooled and is allocated to those who pay premiums and are lucky enough to have insurance. If you are talking about Medicare, no one seems to want to pay for that anymore, anyway.
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I just wish in center hemo dialysis centers would give patients options like doing daily short treatments or nocternal 4 days a week...I didn't like going without D 2 days during the week and I wasn't mentally up for learning how to needle myself...
xo,
R
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I'll let the discussion rest. There are changes to be made. It needs to be better for eveyone. In the long run, the odds are still better here. Regarding immigrants: Doesn't everyone complain about the border and people crossing it to get dialysis from the US.
We all look at life differently. Move on, make changes happen, be a part of the change. I have done tons of research from the first day on, but I research the positive results --- how long can I expect an ECD kidney last? What can I do to over come the side effects of treatments, meds, etc? So I know how much I have to get done on my bucket list! lol And to prove their statistics wrong.
So here is better treatments for all in the future :wine; :beer1;
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Hear hear, Paris! :cuddle;
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So here is better treatments for all in the future :wine; :beer1;
I'll have what they're having!
:beer1;
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:thumbup; Keep up the good fight Moosemom. I enjoy and support your views. Just sayin'.
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@Mr. B 123, I hope you didn't think Moosemom and I were arguing. We actually like each other and respect each others views. We had the pleasure of meeting last year at Las Vegas and she is so much fun to be around. I think because we respect each other, we can freely say how we feel and still be friends. It really is a family here -- we disagree but we love each other through thick and thin!! And if you ever need an answer or research done, she is the one to go to!! :2thumbsup;
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Paris, I also got a chance to meet her this spring at the Chicago lunch and I agree with her. From what I have read over the past 12 years the dialysis world has a few things that need to be improved and until we try to improve it things will just be the same and not get better. She and I are at the same stage of kidney issues and are not looking forward to the future of our health care issues. I have not been on the site too long but I respect everyone and am learning new things every day and really appreciate the dialog everyone adds to the discussion. I have read many of your post and appreciate all the information and help all share. Hang in there, God Bless.
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Oh, I apologize for sounding so bolshie. I've not been on dialysis yet, so what the hell do I know, really?
I was in Madison last week for a pre-tx eval. There was a couple who was also there for the same reason. We ended up following each other around the hospital as he was getting the same tests as I was having to get...EKG, chest X-ray. I took the opportunity to ask him about his dialysis (me? Nosey?), and his wife explained that he had been on dialysis 7 years and was now on PD as his hemo accesses had all failed. We talked about NxStage and various other things. This whole exchange really upset me because this man, after 7 years on D, was in a wheelchair, and he was grey. I mean, he had NO color in his skin; he was literally grey. I was so shaken by my short conversation with him. Now, I know that he might have other problems other than ESRD, but I wasn't going to ask about his whole medical history. But I couldn't escape the fact that this man had turned grey. And dry...like the wind could turn him into dust.
The same day, I spoke at length with the tx nephrologist. She is originally from the Sudan which is neither here nor there but was still of interest to me. Anyway, I was talking to her about my fear of dialysis and told her that I had watched my mother suffer through it, and she told me that she had spent some years as a neph in a dialysis clinic. She said that it was such a depressing experience that she went into tx nephrologist because she preferred "working with patients who have some hope." And that's a direct quote...devastating honesty.
So now, a week later, I still am feeling the after effects of these two occurrences; they left me rattled and probably overly sensitive and horrified. It makes me mad at this disease and the toll it takes, and then I hear these stories from people I have come to care about here on IHD who have suffered at the hands of "the system". If I am not careful, I fall victim to anger and resentment and general frustration. Fortunately for me, Paris is always there with her optimism and with her different way of looking at things. I relish posts from people who have different views from mine because I live with my views every day, and I get bored. LOL! There is always something that others here can teach me, especially lessons about improving my general attitude which can be truly dim all too often. ::)
But it is true to say that there are professionals out there who are questioning the status quo and who are working to improve things. We have wonderful advocates right here on IHD and, say, Home Dialyzors United who are all doing great work at the local and at the federal level to improve the lives of renal patients.
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First off, I'm really glad to hear about you getting another call. That's just wonderful.
Secondly, thank you so much for sharing information on the "cardiac" event kidney versus other types. The double kidney transplant from a baby was something I had not heard of either.
Finally, while I know an experience like seeing the gray man can be really upsetting, please remember that you're not him in so many ways. I don't know what the fates will bring you but I sure as hell know you have a massively higher chance of being infinity healthier after 7 years on dialysis should you end up doing that. You're education, self-advocacy, determination, health and community, are all huge factors you have in your favor. I know dialysis can be extremely tough, but you are so much tougher.
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You're education, self-advocacy, determination, health and community, are all huge factors you have in your favor. I know dialysis can be extremely tough, but you are so much tougher.
Hear hear.
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Now I am spending all my time helping my husband be positive and look on the brightside and he hasn't even started any chemo treatments. I have to stay up most of the time. Just a peak inside my life --- last week (seriously all in one week) , my 38 yr old son emails (really? an email?) to say they are expecting baby #5 (they live 10 minutes from us). Next day he says his life is full and he doesn't need the stress of surrounding family, so he won't be communicating for awhile. He has done this before, so now it is hard to ever trust when he comes back. Second thing --- my 35 yr old daughter and her two children moved in with us after her husband left her and cleaned out all the money. Then, Barry was diagnosed with Lymphoma on Monday. The world has stood still while we are processing this info. If I let go and get down, there may be no going up again. For me, looking ahead with dread doesn't help me. I can get through this. And the kidney stuff has been an interesting time period. So many times I got kicked in the teeth and then I would do more research to learn what was the next new thing. Sometimes here, I get down, but I can leave it here.
Moosemom, you can handle any thing that comes along. Look what you have lived through so far. And you are so close to getting the right transplant. You know this game inside out already. Remember that things are better since your Mom was on dialysis (Bless her heart). I know you will be in charge of your care and nobody better mess with you. lol I'm patiently waiting for your call -- the one where everything is perfect. There will be some celebrating around here that day! Enjoy your weekend. Hope you have a nice one.
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okay by no means am I an expert but I do want to say 1 thing....our training nurse told us that even though the hubby's prescription for HHD is 5 days a week....if he feels he needs to do a treatment on an off day by all means do it because the patient ALWAYS knows their body better than anyone else...even if we do not need to remove fluids and just need a cleaning.....that is why I like HHD.....WE are in control of hubby's health care
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Aguynamedkim and natnnat, thanks for the encouraging words. About the grey guy, well, my neph is in a group practice that includes my PCP and various other docs, so when I go see him, there is always a pretty full waiting room of patients. I try to pick out which ones are there to see my neph so that I can get an idea of how long I'm going to have to wait for my turn. The last time I saw my neph, I was being escorted by his nurse from the waiting room to one of the examining rooms, and I passed a gray man. I was appalled to learn that he had just finished seeing my neph and that he was a dialysis patient (why he was seeing the neph at the office and not at the clinic, I have no idea). And then when I saw the gray man at Madison, I just got very despondent. I'm constantly being told by medical staff how well I look, and it makes me realize that I'm expected to turn gray, too.
I know I am a different patient from the gray men, but it's still a sobering experience.
Paris, I really don't know where you find the sheer force of will to be "up" all the time. I will flatly admit that I couldn't, wouldn't do it. I would find it utterly exhausting. I don't know how your son can live with himself...what is this bs about him not "communicating for a while"? I'm gobsmacked, which is rare. I confess to not even knowing you had a son. I knew about your daughter who has had to move in with you. Is her presence of any comfort to you at this time, or is it just one more thing you are having to cope with?
I sometimes wonder if having to be "up" all the time has one advantage, that being the possibility if you pretend long enough that a bright side exists, you eventually believe that it is true. I wouldn't want to have to find out, though.
You are a better person than I am because I strongly suspect that if I'd been through CKD and transplant (especially in such emotionally fraught circumstances as you and your 100% PRA!), only to have my husband struck with lymphoma, I'd be so bitter and twisted I'd be unrecognizable as human. I think you are wise not to look too far into the future because no matter how hard you look, the future still will remain shrouded in mist.
eeyore, you have been blessed with a training nurse who trusts your intelligence enough to let your hubby tailor his dialysis needs as he sees fit. You ARE an expert when it comes to his unique needs. There is a lot of complaining about "cookie cutter treatment", and what you are doing is the very antithesis of that. Good for you!
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If you attend the annual AAKP Conference, you won't see too many "gray" people there.
The American Association of Kidney Patients is pleased to announce its 2012 Annual Patient Meeting: Kidney Care - Innovations for a Changing Enviroment, will be held Aug. 9-11, 2012 in Atlanta, Georgia.
http://www.aakp.org/events/convention/2012-convention/
http://www.flickr.com/photos/kidneypatients/page6/
With better dialysis filters and more treatment time, most people on dialysis look "normal."
The only way you might be able to tell they are on dialysis is if you catch a glimpse of their fistula.
8)
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Zach, when I met everyone at the IHD meetup last year and also at our little Chicagoland meetup a few months ago, no one was gray! LOL! In fact, everyone looked really vital and healthy. So I DO know that good dialysis doesn't make you gray, but on a more primal level, the gray that I did see made me feel apprehensive. I can't claim to be always logical. haha
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"Surely you can't be serious?"
"Yes I'm serious and don't call me Shirley!"
This seemed appropriate for last sentence MooseMom :rofl;