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Author Topic: Able but unwilling  (Read 5820 times)

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Offline KatieDaze

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Able but unwilling
« on: February 09, 2016, 12:22:42 PM »

My father is 67 years old and has ESRD as a result of type two diabetes. He has been on dialysis for several years. I have two older sisters, one of which is unable to donate due to a medical condition and the other who is unwilling. I am 26, a perfect match, and torn.

My father is a poor candidate for a kidney donation. He is in fact probably the worst candidate. I know this. Logically, its all there. He is absolutely non-compliant. He smokes like a chimney (has for his whole life), he eats with total disregard for any type of renal diet (fast food, frozen dinners, etc), is severely depressed, he skips dialysis sometimes, he lies, lies, lies to his doctors, and he lives alone. He is starting to get confused as to what day it is. There are cigarette burns in his bed sheets from him falling asleep smoking. When we start discussing live-in care or nursing homes, he threatens suicide. Specially, to ‘blow his brains out’ (we have taken all of his guns). He is wildly stubborn and has a severe temper when things don’t go his way. I sometimes think he might literally have a heart attack because of his anger.

His choices have landed him in the hospital yet again. While I was at work, he called my husband at midnight confused and nonsensical. My husband drove 45 minutes to his house to find him naked, unresponsive, and caked in feces from the waist down. He called 911 and my dad’s heart rate was 20 in the ambulance. He was angry my husband called an ambulance, embarrassed of what the neighbors would think.

He is in ICU, stable, etc. His electrolytes are screwed up. He missed dialysis because he is confused as to what day it is. This isn’t the first rodeo. He almost died when he skipped two sessions of dialysis last year. He was hospitalized for six weeks. He was so absolutely poisoned, told me in a fog that he was being held captive and being experimented on by the Russians. He begged me to get him out. He begged me to take him out for a smoke and screamed at me to go f*** myself when I wouldn’t. Watching my father grow old and confused and slowly dying is indescribable.

I have a million, billion reasons not to donate. My husband and I want to start a family this year. I have a pre-disposition to get diabetes, which pre-disposes me for renal failure. My father is undeserving to say the least. After writing all of this, the answer regarding if I should donate or not is quite obvious, so maybe that isn’t what I’m looking for. Perhaps I’m just looking for empathy, understanding, or advice. I love, love, love my dad, I cannot stand seeing him so absolutely broken mentally and physically. Bearing the weight that I would be able to help him with a kidney donation makes me sick. I fear I will bear the weight of being able but unwilling to help him for the rest of my life.

Offline sherri

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Re: Able but unwilling
« Reply #1 on: February 09, 2016, 07:56:10 PM »
Katie,

I think you summed up the situation quite appropriately. Sounds like you would like to donate your kidney to a different kind of Dad. Unfortunately, kidney transplantation gives you a new organ but it is not a character transplant. On the contrary, the self destructive behaviors will only become amplified. And I'm sure you know that your donation would most likely be a moot point, since based on your the description of your father's behaviors and non compliance he would (should be in my opinion) be ineligible to be a kidney recipient. Your father would have to want to be a kidney recipient as much as you would like to be a donor and sadly that is not the case.

I don't know if you have explored the area of guardianship or medical power of attorney. It sounds like your Dad may not be able to make sound medical choices which may very well be related to his disease. Not sure if you are involved with his health care team but perhaps you can accompany him to one of his appointments or meet with his nephrologist at the diaylsis center. They also have social workers at the dialysis center so you can see if that might be helpful for your Dad.

Your Dad must have done a few things right. He raised a compassionate and loving daughter. I am so sorry that you are going through such difficult family dynamics and I wish you inner peace as you learn to let go of what could have been. You might find it helpful to speak with your own social worker or psychologist to explore some of your feelings. A lot may have been bottled up over the years  and with a serious medical diagnosis like transplant, all the baggage that was kept in check has now been opened.

So Katie, I am sorry that you can't "fix" this with your kidney. As you and your husband embark on the journey of starting your own family, you will be able to use your experiences to create loving and healthy relationships. When the time is right perhaps you can look into donation. you can always start with blood donation or join the bone marrow registry if you have the inclination.

All the best to you,

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline Fr Pat

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Re: Able but unwilling
« Reply #2 on: February 09, 2016, 09:49:30 PM »
      A kidney transplant recipient has to strictly follow a detailed regimen of medications several times a day, especially during the first months. The recipient also has to return regularly for medical tests to adjust the medication. Neglect of these things will usually cause the kidney to be rejected. I don't think it is wise to donate an organ to a non-compliant recipient, as it would do no good. There are and will be abundant opportunities to donate a kidney to someone who WILL take good care of it for life.
    Fr. Pat

Offline CK

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Re: Able but unwilling
« Reply #3 on: February 10, 2016, 07:35:15 PM »
I'm surprised the transplant center would even consider giving him one, given what you have described.  He's a poor candidate - unlikely to take his medications regularly or be able to care for himself.  I can't imagine a transplanted kidney would survive long, given the poor care he takes of himself and his tendency to refuse to follow medical advice.

What a tough position to be in.  Only you can decide what's best, but please don't decide out of a sense of guilt and obligation - decide what's best for you in the long run.   Please get some therapy before you decide - growing up with a father like yours will surely have had an effect on you.  He sounds like he has major mental health issues and/or dementia and a kidney will not change any of that.
« Last Edit: February 10, 2016, 07:37:53 PM by CK »

Offline elephant

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Re: Able but unwilling
« Reply #4 on: February 11, 2016, 08:28:42 AM »
Dear Katie,

Is you father actually on the kidney transplant waiting list?  Given your description, I would be surprised.  Have you been evaluated and approved as a potential donor?

If these things have not occurred, then perhaps you are worrying about something that may not even be a possibility?  If they have occurred, I'd suggest you discuss your fathers non-compliance and emotional state with the transplant team.  Missing dialysis sessions is considered as a barrier to transplantation.  Some transplant centers require smoking cessation due to the higher failure rate and cancer risk associated with smoking.

Many people suffer from kidney disease.  Unfortunately not all of them are suitable candidates for a transplant.  Similarly, not all people are suitable candidates for donation.   

Love, elephant


Offline RKEM

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Re: Able but unwilling
« Reply #5 on: February 11, 2016, 10:29:22 PM »
I'm sorry you're in such a difficult situation. You definitely have your heart in the right place. As others have suggested, it doesn't sound like your dad, at this point, is able to make the best decisions about his self care and healthcare. It is possible that what looks like non-compliance and temper issues is due to some form of mental disease and confusion. I'm not a doctor so I don't know if this can be the result of the diabetes or the renal disease, but it may be worthwhile to get power of attorney.

You may not be able to save your dad from the kidney disease, as it doesn't sound like he would be a good candidate from transplant and that any kidney would probably just be rejected. But ensuring that he gets the healthcare he needs, possibly through some in house help or different living situation, may be the best you can do for him to make him more comfortable. He may not like it, but there are times when you have to do things that piss people off, but so long as you are thinking of their well being, then you are doing the right thing.


Offline brenda

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Re: Able but unwilling
« Reply #6 on: March 11, 2016, 11:57:12 PM »
DO NOT DO THIS. I was very willing, well-educated, healthy and medically compliant. I now have an eGFR of 32, hypertension, and borderline sugar-levels. The surgery put me straight into menopause (I was 47) because of the harvesting of renal blood vessels reduced ovarian blood flow (normal consequence not usually disclosed to donors). No one with doubts should take these risks, and I do not believe someone as young as you - who still wants to have children - should decrease their renal mass.  Even a small amount of regret poisons your life. Please do not do this to yourself or your husband.

 

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