I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: NickL on February 06, 2007, 08:25:31 AM
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Just putting this out there.Extended protocol transplants are done with kidneys which would normally have been rejected for use. There are from donors who are > 50yrs old and or had blood pressure problems, diabetic pblms etc. but are still considered viable for use by parameters which i think vary according to surgeon. This type of txp has been used in Japan for years . If any of you have signed the form saying you will accept one of these kidneys (you might not be aware you did or forgot as the time goes by) you should be aware of certain things. First, you will not be told it's an extended protocol kidney until you are about to sign the pre op waiver saying you'll accept the risk of this type of transplant. So when you get the call that they have a kidney for you - ask. Otherwise you will find out as I did after waiting 36 hours from the moment i got the call ,until right before i was to go to surgery. At which point it's pretty hard to walk away - even though everyone says you can. Also find out how long that kidney was on ice because that will directly effect it's viability in the long run - even if everything else goes perfectly. I just went through this process and believe me when i tell you that coming back from rejected kidneys ( in my case I had a double transplant - the thinking i guess is that 2 somewhat compromised kidneys would equal one good one) is a long row to hoe. If it's any indication I was glad to be back on dialysis. So be warned, and be aware
EDITED: Moved To Proper Topic - Sluff, Moderator
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wow thanks for that post! :thx; :2thumbsup;
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I know all about this type of Transplant. My surgeon told me about it during my eval... and he told me because I am so young he will not allow me to even be on that list, even if I had wanted too, which I wouldnt at this age.
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I was also informed of this. I guess it is fine for some people; I just want the best kidney I can get. Maybe I will feel different as time goes on. Thanks for sharing the information.
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Thanks NickL, for speaking truth to power!
The Renalist. 8)
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I know all about this type of Transplant. My surgeon told me about it during my eval... and he told me because I am so young he will not allow me to even be on that list, even if I had wanted too, which I wouldnt at this age.
Are these then used for the elderly who might die from old age before the kidney fails?
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Yah
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These kidneys are being transplanted in patients as young as in their forties. I don't think someone in their forties is considered elderly.
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Its suposed to be for elderly ppl, or ppl who have other medical issues who have a hard time getting a transplant... I would never except one myself unless i was over 60 and needed one.
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and I was thinking even older than 60 :P
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lol i plan on being dead before im too old... :P
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It's amazing the younger you are you think you'll die young but the older you get you start thinking you'll live forever.
I personally would not go through a surgery after a certain age because I believe when it's my time to go it is natural selection. Now speaking of age..maybe thats typical thinking for my age category.
Like everyone else I may change my mind if I was faced with the issue.
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Oh, I don't think I will die young, however I will not allow myself to be too old and have to live in a nursing home or be wheeled to dialysis and not really know whats going on.. if I EVER get like that, I will stop dialysis, or make sure someone stops it for me if I dont know whats happening... that's just not living to me.
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Its suposed to be for elderly ppl, or ppl who have other medical issues who have a hard time getting a transplant...
I'm sorry Angela, that's not correct.
The protocol today is being used on patients in their mid-forties and older ... not just elderly or patients with other medical issues.
So for those of us "young enough" to have this pushed on us, we need to be aware of the problems associated with these kidneys. Luckily, we still have a say.
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I corrected myself already, I said *I* personally wouldnt take one of those kidneys unless I was over 60.
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This is very interesting information. It sure doesn't seem right to transplant these kidneys into anyone who is relatively "healthy" and still in their 40's! Thanks Nick...sorry you had to go through something like that.
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This is from an article: They said that the organs, called extended-criteria kidneys, can be suitable for older patients
who are at greater risk of dying while on dialysis, whose expected lifespans are shorter, and whose numbers on waiting
lists are growing. Surgeons are also offering them to patients who do not respond well to dialysis.
The article can be read in it's entirety here: http://www.boston.com/yourlife/health/diseases/articles/2005/06/05/transplant_plan_eases_wait_with_imperfect_organs/
We were offered this option for Jenna, as they offer it to all their patient's at Scripps, but we were also advised NOT to
accept the offer as the surgeon does not recommend this type of solution to someone Jenna's age.
I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!
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I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!
Folks, this is becoming policy around the country --for a person in their mid-forties to be encouraged to accept these kidney's.
And the very fact that someone actually "offered" this option to Jenna is disturbing--a 21 year old. Had you not been as informed as you are, and perhaps from the "wrong side of the tracks," what would the outcome have been? :'(
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I am amazed that anyone would offer or consider this for a patient under 65, but obviously it has happened.
I am so sorry you had to go through what you experienced!
Folks, this is becoming policy around the country --for a person in their mid-forties to be encouraged to accept these kidney's.
And the very fact that someone actually "offered" this option to Jenna is disturbing. Had you not been as informed as you are, and perhaps from the "wrong side of the tracks," what would the outcome have been? :'(
I really doubt that it's becoming routine to encourage use of these kidneys if it would be a bad choice, whatever the patient's age.
The transplant centers have to offer them to everyone as it would be discrimination not to give the patient every option available.
They did stress to us that it was not an option they would recommend for Jenna, they were very clear and adamant
about that.
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They did stress to us that it was not an option they would recommend for Jenna, they were very clear and adamant
about that.
Well that is good to know!
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Just putting this out there.Extended protocol transplants are done with kidneys which would normally have been rejected for use. There are from donors who are > 50yrs old and or had blood pressure problems, diabetic pblms etc. but are still considered viable for use by parameters which i think vary according to surgeon. This type of txp has been used in Japan for years . If any of you have signed the form saying you will accept one of these kidneys (you might not be aware you did or forgot as the time goes by) you should be aware of certain things. First, you will not be told it's an extended protocol kidney until you are about to sign the pre op waiver saying you'll accept the risk of this type of transplant. So when you get the call that they have a kidney for you - ask. Otherwise you will find out as I did after waiting 36 hours from the moment i got the call ,until right before i was to go to surgery. At which point it's pretty hard to walk away - even though everyone says you can. Also find out how long that kidney was on ice because that will directly effect it's viability in the long run - even if everything else goes perfectly. I just went through this process and believe me when i tell you that coming back from rejected kidneys ( in my case I had a double transplant - the thinking i guess is that 2 somewhat compromised kidneys would equal one good one) is a long row to hoe. If it's any indication I was glad to be back on dialysis. So be warned, and be aware
What exactly happened? What was the rejection from? I'm so sorry it happened to you, but please explain more to us.
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Most transplant canters are required to obtain a consent from the patient to accept extended protocol kidneys.
I received the letter few years ago and answered no thanks.
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Most transplant canters are required to obtain a consent from the patient to accept extended protocol kidneys.
I received the letter few years ago and answered no thanks.
All centers are required to get your consent... it's the law I believe, or at least UNOS rules... dunno which.
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Well, before I say "no" to old kidneys I would like to know why NickL's transplanted kidneys failed. There should be nothing wrong with a 60 year old kidney. It should last 20 years.
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No, they shouldn't last 20 years.... and Extended Protocol Kidneys, usually have other medical issues such as high blood pressure, diabetes, ect.... Im not sure if this was the case in this persons experience, but thats why these kidneys are usually in this catergory.
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All centers are required to get your consent... it's the law I believe, or at least UNOS rules... dunno which.
A signed consent form is one thing, a fully informed patient is another.
First, lets get the correct term, so we can look up the information: Extended Criteria Donor or ECD
This is from the UCLA website on ECD.
http://www2.healthcare.ucla.edu/transplant/brochures/Kidney/donor/ECD.pdf
They talk about the one year success rate of 80%. Sounds pretty good.
But what they don't say is the success rate at the five year mark is around 52%. Is this fully informing the patients?
Here is a website that has actual numbers, not estimates:
http://www.ustransplant.org/annual_Reports/current/509b_agecat_ki.htm
You can see for yourself, on the ages they transplant ECD kidneys and success rates, and draw your own conclusions.
I have no problem with 70-year-olds receiving ECD kidneys. Maybe the answer should be that you receive a deceased donor kidney from your general age group. Just more sorting by the master computers ... and for some people, longer waits.
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I was fully informed... and I wouldnt do it unless like I said I was very old.
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They talked to me about ECD organs when I was at my transplant eval this week. They said that I would have to sign a consent form to get put on the list of people considering ECD organ transplant. The doctor didn't recommend it for me. He said he would only recommend it for a younger patient if they were not doing well on dialysis. In that case, a transplant that lasted only a short while would be a better option than more waiting time with inadequate dialysis, since the odds of becoming to sick to stay on the list were very high for that kind of patient.
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To answer some questions,
No one can tell exactly why my kidneys failed - the thought seemed to be that they never really came back. I heard from one nurse that they were on ice a long time - although no one ever verified this to me. There was a brief window of about 2 weeks where I felt unbelievably good and wondered if this is how normal people feel all the time, and then it started to go downhill. Also after a cadaveric transplant there is a time where the kidneys do not work which can last up to six months - this is not rejection but a time period where the kidneys are repairing themselves from the inflammation caused by being out of blood flow and on ice. Mine lasted 5 weeks before i started to produce urine. Although i was making water the kidneys never really started to clear wastes very well - although they did for like i said about 2 weeks and then i had a rejection episode which happens more frequently then you realize and the docs are not that concerned with because they have meds to fix it. After that it was a slow motion decline which took 4-5 months before they threw in the towel. All that time you are walking around with a BUN of 100-150 and creatine of 3-4-5-6-7-8 until you can't wait to get back on the machine.
Some say they would not take it but the facts are that when they work they can last up to 12 years - at least thats what they say. I felt if they lasted 2 years it would have been worth it because it would be time off the machine and my body would heal - as long as you felt good and I did for a short while even though my creatine was never lower than 2.3 and that was only one day - most of the time it was 2.8 - 3.8 and honestly that would have been ok if it stayed there - but it did not.
At the time I felt the risk was worth it and given the same set of circumstances I would do the same - but the circumstances are different now. I have had time to think about this , which is the point of my post. If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but after reading this it might. I did not remember signing that consent - it was so long ago. I did not find out it was from an ECD until I was signing the preop consent for surgery form and asked what does a dual cadaver renal transplant mean - then they told me. This is after getting the call on Wednesday night and waiting until Friday @ 3am to get the next call when they tell you you won the lottery and the kidney is yours. If I had known that they were kidneys from a 63 year old man I might have thought differently given the time i spent waiting for the second call - then again maybe not. that decision is one you have to make at that time. I just think a little more time to assess the risk might have been helpful.
I think if it is not common practice now it will be soon as people wait on lists that are 8-10 years long and that is only if you sign onto that "list" in the first place - otherwise you never get called - which is probably a subject for another post. Also you have to sign the consent form in order to called for such a kidney. So yes you are informed at the time you sign, but as in my case it was years later that i got called. I wasn't as i said before thinking of questions - i was thinking i was the luckiest guy in the world. and yes you can say no right up to the last second but when you are in that situation - I'm talking the eleventh hour and they are ready to go - it's not the easiest thing to do. So..... talk to your coordinator and get all the facts so you can make an informed decision at that time.
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Did they put one on each side of your pelvis?
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Yes , so the cut is vertical . Also one thing about dual transplant is the surgery is twice that of a normal transplant - so recovery is harder - but since i did not have a prior txp - ignorance was bliss.
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And did they remove the transplanted kidneys after they failed?
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If you get the call and they say "we have a kidney for you" your first response would not be "is it from an ECD" - but after reading this it might.
From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translants into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age
I have them written down so I won't forget anything. The way I look at it, when I am given medication, whether IV or by mouth, I want to know the name, the dosage, interactions and possible side effects. Why would I accept anything less when someone wants to put an actual ORGAN in my body? I think, that as recipients, we must bear the responsibility of informing ourselves and FORCING our medical providers to inform us. I was burned too many times in the beginning of my ESRD experience to ever expect that anyone will fully inform me unless I make them.
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From the first time I was "on the list" in 1992 and again now in 2007 (no transplant, but different story for another time) it has always been my policy to ask these specific questions about a cadaveric donor, in this order of importance:
1 - antigen match with me
2 - cold time when I am called & location, (i.e. translants into travel time to get to my hospital)
3 - cause of death
4 - medical history
5 - age
That's a real good list to have!
How about CMV positive or negative? Unless you're very specific, they may not volunteer the information, even if you ask for medical history.
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How about CMV positive or negative? Unless you're very specific, they may not volunteer the information, even if you ask for medical history.
You are quite right, and I left that off. I am (Aaaargh!) still CMV negative (as I was in 1992) and already told them unless its a perfect match, I wouldn't consider a CMV positive. Being O+, that will certainly extend my wait, so never say never, right?
I was astonished to learn that my brother-in-law, who just got on the list, wasn't informed of his CMV status (he is positive). I sometimes wonder at some centers, if there's a "Don't ask, don't tell" policy. As in, if YOU don't ASK, THEY won't TELL!
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What is CMV?
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And did they remove the transplanted kidneys after they failed?
Yes, but only because they are preparing me for another transplant - and the fact that there were 2 rejected organs in my body - but normally they told me they would not remove a rejected kidney if it wasn't causing a problem. However as i found out this usually means you are on prednisone for years until the body eventually turns that rejected organ into scar tissue. For example - when they removed the kidneys they leave a small portion of the ureter(the tube which goes from the kidney to the bladder) attached - maybe 1 inch of tissue. I had two of these things left in me which caused unbelievable pain and discomfort. It wasn't until two months later that i was hospitalized and after 10 days of tests did they realize i was suffering from ureteritis - inflammation of these little pieces of tissue. My dose of prednisone was increased which brought relief and slowly tapered over the nest 8-10 weeks. It was then I wondered what happens to people where they leave the kidneys in and i guess a lifetime of prednisone might be the answer if the rejected kidney wasn't causing more serious complication. If it were to happen again I would insist upon removal.
That is a great list to have - I'm writing it down along with Zach's questions also.
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What is CMV?
CMV is a common virus that they screen both donor and recipient for...they also screen for EBV. I'm not sure what CMV is short for, but EBV is Epstein-Barr virus, which can cause mono in some cases. Ideally the donor and recipient are both either positive or negative for these viruses. I had a live donor transplant cancelled because I was exposed to EBV the week before my surgery. At that time, I was surprised to learn that even though I was negative, my donor was positive and this would not prevent me from getting the transplant - it was something "of note" that they would have to keep a close eye on post Tx. The good news is, two weeks later I learned that I had developed the virus and was building antibodies to it (I never got sick) and converted to positive. In my opinion, God's hand was involved in this turn of events!
I was told that Mayo is in the early stages of research on developing a vaccine for EBV - not sure about CMV.
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What is CMV?
CMV is a common virus that they screen both donor and recipient for...they also screen for EBV. I'm not sure what CMV is short for,
cytomegalovirus
http://www.findarticles.com/p/articles/mi_qa4117/is_200506/ai_n14688223
Cytomegalovirus is the most common infectious complication in solid-organ transplant recipients. Despite the frequency of the problem, no commonly accepted approach to Cytomegalovirus prophylaxis and treatment exists. Because cytomegalovirus may lead to the modulation of the immune system sometimes causing opportunistic superinfections, allograft injury, acute rejection, chronic rejection, and development of posttransplant lymphoproliferative disease, transplant coordinators require knowledge of the disease, diagnostic methods, and treatment and prophylaxis strategies. This case study reviews a high-risk cytomegalovirus transplant recipient after living-related kidney transplantation. In addition to a review of the pathophysiology of the disease process, patient, family, and nursing staff education, and cultural and psychosocial aspects of cytomegalovirus, prophylaxis, diagnosis, treatment strategies as well as role of the transplant coordinator, will be discussed. (Progress in Transplantation. 2005;15:157-160)
Cytomegalovirus (CMV) is a latent herpes virus that infects approximately 15% of adolescents and 50% of adults in the United States. The virus is transmitted through close physical contact, sexual intercourse, and blood transfusions.1 CMV rarely causes disease in the immunocompetent, but frequently reactivates in a compromised host, such as a solid-organ transplant recipient. When CMV primarily infects a previously uninfected recipient or a latent virus reactivates in the recipient, replication can occur in nearly any organ. In addition to the direct impact of the virus, CMV also leads to the modulation of the immune system, which can lead to opportunistic superinfections, allograft injury, acute rejection, chronic rejection, and development of posttransplant lymphoproliferative disease.
CMV is the most common infectious complication in solid-organ transplant recipients. Despite the frequency of the problem, no commonly accepted approach to CMV prophylaxis and treatment exists.3 Patients who are CMV negative at the time of transplantation and receive a CMV-positive organ are considered to possess the highest risk of developing CMV disease (Table 1).5 The following case review will outline a young woman's clinical course of CMV after kidney transplantation. The role of the transplant coordinator, cultural aspects of the patient care, and the psychosocial issues surrounding CMV after transplantation will be discussed.
- Cytomegalovirus (CMV) [si-to-MEG-uh-lo-vi-rus] is a virus that infects most people worldwide.
- CMV spreads from person to person by direct contact.
- Although CMV infection is usually harmless, it can cause severe disease in persons with weakened immune systems.
- There is no treatment for CMV infection.
- Prevention centers on good personal hygiene, especially frequent handwashing.
http://www.dhpe.org/infect/cytomegalo.html
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I still have my moms kidney in me... and i didnt have to take prednisone the rest of my life. Actually im not on prednisone this translant, which is great.
I take Valcyte, b/c me and my donor were positive for CMV.
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Well shit! Another damned thing to worry about!
Sorry about the curse words, but geez!
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What is CMV?
Just wanted to add, if both recipient and donor are negative for anti-CMV Igm antibodies, the incidence of CMV is <5%. If recipient is CMV+, the incidence of infection (independent of the donor status) is about 25%-40%. Clinical infection occurs 3-4 mos. post txp. during maximal immunosuppression.
It should be noted that many deceased donors receive many blood transfusions, and it should be presumed that 1 or more units carry the virus. In most cases, recipients receive valcyte at least the first 3 months after surgery. Its an expensive drug, and when I had my txp. was told that it was not covered by medicare. That was one of the things discussed pre-transplant (to make sure I could afford it).
Also, Angie is right, there is no cure, but there have been some successes of preventing CMV disease vs CMV infection post transplant with the use of gancyclovir and valacyclovir. There is a difference between CMV infection (where detection of the CMV antibody is present) and CMV disease (which presents clinically as fever, hi white count, hepatitis, pneumonia, things that can lead to organ rejection).
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What is CMV?
Just wanted to add, if both recipient and donor are negative for anti-CMV Igm antibodies, the incidence of CMV is <5%. If recipient is CMV+, the incidence of infection (independent of the donor status) is about 25%-40%. Clinical infection occurs 3-4 mos. post txp. during maximal immunosuppression.
It should be noted that many deceased donors receive many blood transfusions, and it should be presumed that 1 or more units carry the virus. In most cases, recipients receive valcyte at least the first 3 months after surgery. Its an expensive drug, and when I had my txp. was told that it was not covered by medicare. That was one of the things discussed pre-transplant (to make sure I could afford it).
Also, Angie is right, there is no cure, but there have been some successes of preventing CMV disease vs CMV infection post transplant with the use of gancyclovir and valacyclovir. There is a difference between CMV infection (where detection of the CMV antibody is present) and CMV disease (which presents clinically as fever, hi white count, hepatitis, pneumonia, things that can lead to organ rejection).
I just wanted to let everyone know.. NOW, Valcyte *IS* covered under Medicare. :thumbup;
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I still have my moms kidney in me... and i didnt have to take prednisone the rest of my life. Actually im not on prednisone this translant, which is great.
Have you checked out this thread yet? http://ihatedialysis.com/forum/index.php?topic=2655.new#new
Well shit! Another damned thing to worry about!
Sorry about the curse words, but geez!
Ya first time I heard about it was when a guy I grew up with (one of the "Kidney Kids") got it.
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Scripps hospital told us that nearly all of the adult population has been exposed to CMV, and that it can
lie dormant, undetected, until immunosuppressants are on board. So they routinely treat every transplant
patient with Valcyte.
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What are the negative side effects of CMV? Or should that be a new thread??
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From what I was told the majority of people are CMV postive.
When I had my transplant I was CMV negative. After the transplant they informed me I was exposed due to the kidney. They kept the whole thing pretty hush hush and never did say much else about it.
Anyway for the next several months I would have to go to the doctors office for an IV drip that would last about an hour. They never did tell me what it was except that it would prevent CMV from developing.
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Scripps hospital told us that nearly all of the adult population has been exposed to CMV, and that it can
lie dormant, undetected, until immunosuppressants are on board. So they routinely treat every transplant
patient with Valcyte.
That's interesting info for me...me and my sister were both negative for CMV and to my knowledge they did not give me anything post Tx to build antibodies to the virus. I will have to be sure and get more info on this at my 4-month follow up.
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Bumping this up. Joe is 37, been on the list for 1 year, and he was sent a letter to opt in or out for the extended criteria list. Not sure what to think of all this.
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:bump;
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The statistical phenomenon which is encouraging the use of these 'extended criteria' kidneys is that while the dialysis population continues to grow at an ever accelerating rate, the supply of kidneys for transplant has been stagnant since about the mid-1990s in most Western countries. This means that there is a silting up of the dialysis population, and so the only way to give people hope of escaping is to start offering them third-rate kidneys.
As I have said before, if governments claim the authority to draft healthy people into military service, in which they might suffer loss of life or limb, often for wars which are either utterly unnecessary or of minimal value for enhancing the security and protecting the lives of the civilian population at home, then they should also exercise the authority, on exactly the same principle, to conscript kidney donation from healthy people to protect the lives of dialysis patients. In utilitarian terms this makes perfect sense, since the total amount of human happiness in society would be increased if everyone had one kidney than if some people had two while others had none.
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I'm guessing you might feel differently if YOU were the healthy person with the expendable kidney.
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The social philosopher John Rawls has an interesing thought experiment to analyze your suggestion. If all the people of the world could be gathered together while in a state of complete amnesia about their actual fate in life, would they opt for a deisgn of society which required them to donate a kidney if someone had no working kidneys at all, in return for having the security that they would never have to endure the pain, distress, and lethal danger of living on dialysis? The fact that only a very small percentage of the world's population ever experiences kidney failure would both reduce these people's worry that they would ever be likely to have to be a donor, at the same time as it would reduce their reason for wanting this protection, so the two considerations would cancel out. I think people, fully apprised of the risks and unpleasantries of dialysis, would opt for living in a society with the greater security of enforced donation.
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:bump;
I signed up for EC transplant at my evaluation last year. I am 54 years old, not yet on dialysis, and I would like to have a pre-emptive transplant if at all possible.
I received two calls for a possible transplant this past weekend. I didn't get either of them, but I'd like to give you the details as explained to me and see what you all think.
The first was from a 62 year woman who had fallen, hit her head and had passed away. I was told that her kidneys had 18% sclerotic tissue but that the remaining 80 some odd percent was good. Since I was out of town and probably couldn't get back immediately, and since I was fourth on the list for this particular organ, I declined. The coordinator told me not to feel bad because it was not an optimal kidney but that it was good enough. So, if you were 54 years old with an egfr of 16 and wanted to avoid dialysis altogether, would you have accepted this kidney?
The second call I got was about a kidney from a 40 year old woman in another state who had been bi-polar and had overdosed. Her kidneys showed AKI (acute kidney injury) from the overdose (I don't know on what she overdosed), but they expected the kidney to heal once transplanted. I was second in line for that kidney. By the time I got to return the coordinator's call, the surgeon had just walked in and said that the organ would not be going to me (I don't know if he thought it wasn't appropriate for me or if the person who was first in line was a better match or what. I was told, and I quote, that it would not be going to me.) So, again, if you were in my situation, do you think you would have accepted it?
One last piece of info. I have just now learned that I have a PRA of 0, and with my A blood type, my wait may not be as long as we had anticipated. The coordinator told my husband that I was "the perfect recipient". :P :-* So, with this added piece of information, would you be inclined to wait until a more perfect kidney came along, risking further renal deterioration and thus having to initiate dialysis?
I know there is no "right" answer to these questions and that ultimately, I'll have to make these decisions for myself, but I'd appreciate any of your thoughts; I'm sure there are things you all have to say that have not occurred to me.
Thank you so much.
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I choose not to go that route..... and it was because I am only 54 and I wanted to get a kidney that would last me the rest of my life...... ( crossing fingers ) What is interesting to me is now that I have a transplant I ask about the kidney but was told that it was a 6/6 match and CMV neg.... that was it.... I was not allowed to be given any other infor.... no age.... nor sex not why that person had died.... nothing.... my tranplant hospital said that this information is not given to people...yet I have read many people on here who knew alot more about their kidney donation..... I was told that I could write the donors family but that I should wait a few months as there was a healing process going on and it would be better to wait and let the family heal..... the only other information that I was given was that the kidney was on the small size and that often smaller kidneys are from younger people and they have the ability to grow..... thats it...... I think knowing more information is good ...esp with the extended kidney transplants...It helps with decisions....
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I think it helps to know how selective your centre is with EC kidneys.
This decision you raise has actually presented a real problem to kidney allocation. They have found that surgeons (and presumably patients) will reject more kidneys as the patient gets toward the top of the list, knowing that they won't have to wait long for the next offer.
Isn't the longest wait in Chicago (the type O wait) only 5 years? (I know, I say only like it's nothing, but I was on California time when I was listed). MM, what is the average wait for type A, non-EC? Because you already have a year of credit behind you. I seem to think your GFR is slightly higher than mine was at transplant, your decline has been very, very slow. I never even bothered to get an access placed, even though the surgeons were all anxiety-riddled over that decision. My decline was slow, too. You've got the fistula, so if you do wind up needing dialysis, it's not like they'd have to place an emergency tunneled line.
You see where I'm headed? I would TOTALLY hold out for a non-EC kidney. However, do remember (and I know you are quite realistic about this and don't need the reminder) that there is no such thing as a test for a perfect kidney. You want as high a match as possible from someone who died from something completely unrelated to kidney issues (head trauma). However, just like some people are always poorly on dialysis, some never do well with transplant.
What level match were they offering in these two instances? It's a tough call, because they expect the kidney to recover, but what are they basing this on? How many successful transplants have they performed in this instance? I would wager not many. And the horror of going through a transplant only to be possibly told sorry! we were wrong! is enough to give me nightmares.
I would like to investigate stats on EC issues. Zach said the average EC graft lasted 5 years, but I think there are better stats to look at than the mean. I need to find some great stats for my upcoming presentation, so if I dig anything up, I'll let you know and do my best to explain what I think I'm seeing.
Oh, one last suggestion. If you do decide to hold out for a non-EC donor, do withdraw your EC interest form. No point in sending yourself round the bend with constant calls offering kidneys that you would then have to agonize over. You can always, always reinstate it.
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I have my first annual appointment with my coordinator and the surgeon next month, so these are all questions I can ask. I don't know how good the matches would have been; they didn't tell me that part, although they were pretty good about telling me the cause of death, the age of the donor and the general health of the kidney (neither of which were optimal).
I like my coordinator, but she is in the transplant business just like everyone else at the hospital, and I emphasize business. I am not sure how much I can trust these people to do what is in my best interest. I don't mean to sound all cynical and conspiratorial, just realistic. Will they really give me the best advice?
Last year when I went for my initial evaluation, I was told that the average wait in the Chicago area was 3-5 years. They did not break it down into blood type, and they didn't tell me that I had a PRA of 0 (maybe they didn't know at the time). So, I'm going to have to get a better idea on this.
Yes, my decline has been very, very slow, but I don't know if I can extrapolate that to mean that my decline to a low egfr warranting dialysis will be equally slow. That's part of the dilemma. Generally speaking, the lower your egfr, the quicker the decline, but that's "in general." I know of people on this board who had an egfr like mine that stayed this way for 5 years or more. Who knows? Maybe that's something else I can ask next month.
Thanks for that, cariad; I now have more questions on my list for next month! And as you do your research, yes please come back and let me know what you've discovered.
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MM, we're twins. My GFR is 16, my blood type is A and my PRA is 0. I've turned down the expanded criteria list for now. My transplant center talked to me about it and suggested it was not in my best interests for now because I'll be an easy match for a perfect kidney. I think if I was nearing dialysis, I might've taken the second call - the woman who died of an overdose. With dialysis still being a ways out and since you've already gotten calls for potential donors, I think I'd hold out for perfection for now.
Congratulations on getting calls! That sounds exciting, even though they weren't the right one yet.
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Oh, that's really interesting, Deanne; I appreciate your reply. This gives me a bit more insight for when I see the coordinator next month. The piece of information that makes this a bit more complicated (or, maybe easier) is the fact that my PRA is 0. I don't know why they didn't tell me this a year ago. I guess I've been thrown for a loop because I had pretty much put transplantation out of my head, and now I am being forced to really think about it. I've had three calls (the first was from a donor who lived with his HIV+ girlfriend, so that was potentially high risk; I turned that one down) so far, but an entire year passed from the time of the first call to the second. I don't know if my kidneys will hold out another year. They might, but who knows?
After reading these replies, I am leaning toward holding out for a better kidney, but I will talk at length about it next month.
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Given your situation MM, I would hold out for as perfect a match and, even more importantly, optimal condition kidney as possible. The match thing is less crucial these days due to improvements in the drugs but as the perfect recipient, along with your "youth", I say you ought to be a little picky here.
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Given your situation MM, I would hold out for as perfect a match and, even more importantly, optimal condition kidney as possible. The match thing is less crucial these days due to improvements in the drugs but as the perfect recipient, along with your "youth", I say you ought to be a little picky here.
Well, you know that I don't really believe in portents and omens, but I can't escape the feeling that getting these calls while I was in LV, and thus not being able to accept the organs, might be Someone's way of telling me to wait. :pray;
But there is one thing that is in the back of my mind, and it is this...while it is true that I'm not on dialysis yet, my egfr is pretty bad, and I have to wonder about the accumulative effects that such poor renal function is having on my body as a whole. CKD is a dangerous disease, and that danger is greatly magnified when your egfr is as low as mine. I've had fsgs for 20 years now, and my egfr has been in the 20s or lower for at least 7 of those years. For how long should I let my body be assaulted in this way? Is it safer for me on the whole to stay as I am or to get a less than optimal kidney that will at least give me better renal function than I have now? Will the drugs post-transplant outweigh any benefit I'd get from an EC kidney? Any thoughts from anyone? Thanks.
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I thought I would pass on some information I received during my appt this week.
First, my tx coordinator was on holiday, so I saw another coordinator who happened to be the one who phoned me with possible kidney offers while we were all in Vegas. The first thing she said to me was that she wanted to discuss ECD kidneys; that made me feel good in that I thought she was really looking after my interests.
She gave me a list of questions to ask should an ECD kidney come available and I got another call...
1. How old is the donor?
2. How did the donor die?
3. Is there anything in the donor's medical history that would lead one to suspect kidney damage?
4. Can I reasonably expect the kidney to begin working immediately?
5. Was the biopsy good? (what is the percentage of healthy tissue?)
6. What are the pump numbers? (was there good flow/perfusion?)
She also explained to be sure to ask these questions if the donor died of a stroke as stroke is often indicative of hypertension, and we all know what hypertension does to kidneys.
If, after all of these questions, I was still undecided, I should ask the coordinator, "If this were you, would you take this kidney?" She explained that coordinators are not allowed to answer this type of question directly as they are not supposed to actively influence a patient's decision, but she said that a patient can usually "get a vibe" from the coordinator that might steer them to a decision.
Lastly, she explained that ECD kidneys were good options for people with co-morbidities that made dialysis problematic. Not everyone does well on dialysis, as cariad pointed out, so if you are really struggling on D, an ECD kidney may be a good choice. The problem is that in general, they do not last as long as non-ECD kidneys, but many last long enough. Perfect kidneys have been known to fail, so while you can be guided by statistics, they don't always foretell the future with 100% accuracy.
I told her of my concern regarding ECD kidneys and pre-emptive transplantation. I know that the first year after the initiation of dialysis can be difficult. Mortality rates on D are higher in that first year. Just the initiation of dialysis in and of itself is risky. So, my question was what would be better...accepting an ECD kidney (and you know they are not going to throw just any old kidney into you!) and avoid dialysis altogether, or endure the initiation of dialysis and wait for a more perfect organ? As I expected, she wouldn't answer that other than to say that I was in a "grey area". That's the kind of decision you make based on the best info you have at the moment, never knowing if it is really the right decision in the long run.
I hope this is helpful to someone.
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Yes ....VERY interesting and helpful information. Thanks, MooseMom