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Author Topic: Reasons to not make the transplant list?  (Read 4018 times)
JVT90
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« on: August 29, 2016, 06:04:35 PM »

My husband had a stroke last year which affected his arm/hand, he lost what was barely left of his vision and started dialysis. He needs help doing most basic life stuff. His doctor wants him to go on the waiting list, but frankly he's scared to go through the testing process.......dealing with whatever pain. He's convinced that he's not healthy enough to do it anyways. Am just wondering if anyone has tried for the list and been told they couldn't be on it? What health issues keep you off the list?





EDITED: Moved to new area-kitkatz,Admin
« Last Edit: October 29, 2017, 07:04:10 PM by kitkatz » Logged

Husband started in clinic dialysis 2015
JVT90
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« Reply #1 on: August 29, 2016, 06:17:33 PM »

Sorry I posted twice......please delete one.......
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Husband started in clinic dialysis 2015
Michael Murphy
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« Reply #2 on: August 29, 2016, 07:01:03 PM »

Every year I have one or two melanoma removed from my body.  Considering I have several hundred moles so this process will not end. You need 5years cancer free to be eligible.
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solid98
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« Reply #3 on: August 29, 2016, 07:31:51 PM »

I went thru the testing last year. Nothing invasive, they just pulled a LOT of blood and did lots of imaging and x-rays.

Then they showed me the door when they found out I didn't have 5k in savings. That, and asking about a DNR is a HUGE deal breaker for them.
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DialysisGoneFOREVER
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« Reply #4 on: August 29, 2016, 08:19:45 PM »

Below is a list for you:

Absolute Exclusion Criteria
The following conditions would exclude a living donor candidate without any further evaluation:
Under age 18.
Hypertension blood pressure greater that 130/90 [plus one of the following conditions:] in someone younger than 50 years old, with evidence of end organ damage, non-Caucasian, or on three or more anti-hypertensive medications.
Diabetes
Abnormal glucose tolerance test
History of thrombosis or embolism
Psychiatric contraindications [UNOS did not specify which conditions]
Obesity (Body Mass Index greater than 35)
Coronary artery disease
Symptomatic valvular disease
Chronic lung disease with impairment of oxygenation or ventilation
Recent malignancy or cancers with long times to recurrence (e.g., breast cancer)
Urologic abnormalities of donor kidney
Creatinine clearance under 80 ml/min/1.73m2, or projected glomerular filtration rate (GFR) with removal of one kidney at 80 years old of under 40 cc/min/1.73m2
Peripheral vascular disease
Proteinuria greater than 300 mg in 24 hours
HIV, hepatitis C, or hepatitis B virus infection

Relative Exclusion Criteria

The following conditions may exclude a potential donor, subject to further evaluation:
Age between 18 and 21, and older age [UNOS did not specify] relative to the medical condition
Obesity (BMI between 30 and 35)
Kidney stones
Distant history of cancer
Past history of psychiatric disorder
Renovascular disease
Thin basement membrane disease
Prior value surgery
Moderate cardiac valvular disease with otherwise normal echocardiographic findings
Mild sleep apnea without pulmonary hypertension
Keep in mind that policies and procedures vary from transplant team to transplant team. You should confirm the actual contraindications with your transplant team.

http://www.livingdonorsonline.org/kidney/kidneycontraindications.htm
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JVT90
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« Reply #5 on: August 31, 2016, 07:52:35 PM »

Thank you all for your responses. I truly appreciate it. Have read them off to him.  :thumbup;
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Husband started in clinic dialysis 2015
Charlie B53
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« Reply #6 on: September 01, 2016, 04:53:26 AM »


My Neph told me I 'most likely' would be rejected if I applied for a kidney.  Now that I see that list and find FOUR strikes against me, I better understand why.

Fortunately PD is working well.
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nursey66
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« Reply #7 on: September 01, 2016, 11:48:54 AM »

Hubby had prostrate cancer , had to wait 2 years before active on list, cancer free , but the time still a accrued , he was told .
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kickingandscreaming
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« Reply #8 on: September 01, 2016, 02:05:51 PM »

Quote
My Neph told me I 'most likely' would be rejected if I applied for a kidney.  Now that I see that list and find FOUR strikes against me, I better understand why.

That may be correct in your case, but the list above is not the one that says so.  That list is ONLY for actual live donors to see if they are healthy enough to donate a kidney.  Those are not the same criteria that transplant recipients need to meet.  If that were the case, then almost no one would qualify.
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Diagnosed with Stage 2 ESRD 2009
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DayaraLee
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« Reply #9 on: September 01, 2016, 02:11:27 PM »

That list is ONLY for actual live donors to see if they are healthy enough to donate a kidney.  Those are not the same criteria that transplant recipients need to meet.  If that were the case, then almost no one would qualify.

Whew! Thanks, K&S! I almost swallowed my tongue reading that list!   :bow;
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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
DialysisGoneFOREVER
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« Reply #10 on: September 01, 2016, 02:25:07 PM »

Sorry. That list above is to be a live kidney DONOR. Below are the EXCLUSION criteria that could prevent you from RECEIVING a kidney.

1. Current life expectancy of less than 5 years
2. Recent cancer (other than most skin cancers)
3. Uncorrectable heart disease
4. Untreatable psychiatric illness
5. Non-adherence to treatment (e.g. not taking medications as advised)
6. Active substance abuse (alcohol or drugs)
7. Lack of health insurance or Medicare/Medicaid coverage

Note: Patients with diabetes and/or high blood pressure can get a kidney transplant.
« Last Edit: September 01, 2016, 02:27:23 PM by DialysisGoneFOREVER » Logged
kitkatz
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« Reply #11 on: September 08, 2016, 06:58:44 PM »

As of today, Low BP kept me from being listed.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kickingandscreaming
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« Reply #12 on: September 08, 2016, 07:06:55 PM »

So sorry to hear that, Kitkatz.  I read how much you had to go though-- to finally be rejected-- I know that is hard.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
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Began PD 1/16 (manual)
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Charlie B53
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« Reply #13 on: September 08, 2016, 07:26:46 PM »


I would imagine as with my high BP proper medication may help.  So I would be questioning their reasoning behind using low BP as an exclusion.

Good luck, but we never get much without a decent fight.   And you do have a great cause for argument.
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JVT90
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« Reply #14 on: September 19, 2016, 07:37:17 PM »

Thanks to you all for responding.  :grouphug;
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Husband started in clinic dialysis 2015
Whamo
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« Reply #15 on: January 10, 2018, 06:34:35 AM »

 :twocents;
I just made my way to the transplant list.  I thought I would be eliminated when my colonoscopy went South.  I suffered through the heart test.  Those two tests were the worst.  I would prefer an artificial kidney but those are years away.   I don't have a donor.  I only have six years behind me and its ten years on the waiting list.   If they make me take another colon test I may say no.  I'm 65. 
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iolaire
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« Reply #16 on: January 10, 2018, 07:19:15 AM »

I just made my way to the transplant list. 
Congratulations!
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #17 on: January 10, 2018, 01:18:14 PM »

We have a lovely system in Britain. It actually costs the government more to keep someone on dialysis than it does to give them a kidney transplant. So when you are diagnosed they first beg you to try and find a live donor, and if you don't manage that they beg you to go on the list (or at least try to, we have a similar, but not quite identical, exclusion list to the one posted above).
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
cassandra
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« Reply #18 on: January 11, 2018, 10:38:23 AM »


We have a lovely system in Britain. It actually costs the government more to keep someone on dialysis than it does to give them a kidney transplant. So when you are diagnosed they first beg you to try and find a live donor, and if you don't manage that they beg you to go on the list (or at least try to, we have a similar, but not quite identical, exclusion list to the one posted above).





If the UK government were serious about saving money they would have introduced a 'presumed concent' system years ago.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #19 on: January 11, 2018, 01:52:20 PM »

If the UK government were serious about saving money they would have introduced a 'presumed concent' system years ago.
I'll give you that. But I was talking about the NHS not the government. The NHS' main aim is to save lives and mend broken people, that they have to do within the funding given by the government. Since those funds are low, they need to save as much money as possible. If they had the power to do so, the NHS would probably have introduced "presumed consent" years ago. But that power lies only with the government. The government's main aim is to get re-elected. If "presumed consent" will get them re-elected the government will introduce it, but while they can see that some people will object to it, it remains an impossible dream.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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