New - Kidney Failure and possible Kidney cancer

[Prayformiracle]

Changed subject title in hopes of getting more comments 

Hello.  I am not a kidney or dialysis patient but my FIL is.  I am having some problems coming to terms with things and his statement of “I would rather die then be on dialysis” and thought maybe I could get some insight.  He is in kidney failure, also has a mass on his kidney believed to be cancer and is seeking out his brother to be a donor.  His doctor said he has 3 months to live and he should go on dialysis NOW and it would be 5-6x a week but he WILL NOT do it.  He wants to do the transplant or just go peacefully.

Here is his background, I will make it brief (also I am not that familiar with all the medical terms yet):

High blood pressure and high cholesterol
Creatin 4.17
GFR 16
Diabetes type I (was type 2 but now insulin dependant)
On Coumadin every day due to a past with large blood clots
Legally blind due to wrong doses of heparin (was completely blind but after 11 surgeries can now see 30% in 1 eye)
Protein S Deficiency causes swelling in legs (on a water pill)
Left kidney shows a 2x2cm white mass, could be cancer, been monitoring it for 2 years and has not grown or spread (has never been biopsied)
Total kidney function 10-15%

He went to Mayo in AZ and had testing done and has been approved for a transplant!  His brother has offered to donate and is in the process to test if he is a match, so far I believe his blood is a match but they won’t give us much information. Ok also they have to remove the kidney with the mass and determine if it is cancer or not.  If it is not cancer, then he can get the new kidney almost immediately.  This is where things get hairy – he has to come off Coumadin for the surgery and there are chances of life-threatening clots.  Also when they put him back on Coumadin or heparin, he could go blind again and will be not repairable this time.

2nd hairy situation is his brother, the donor, has been out of work for a year (as well as his wife).  He just got a new job and it requires a lot of travel.  He has not told the new job about being a donor and our family does not know where we stand.  Again this is time sensitive as the Dr said he has 3 months and he refuses to go on Dialysis.  Dialysis would be 5-6x a week.  He is not scared to die and wants the transplant or that’s that.  Refuses to go on dialysis.  We do not live close, 5 hr plane ride so it is has been hard to deal with this and come to terms with it.

3rd situation, my husband, who is 29, would like to donate his kidney if it does not work out with FIL’s brother.  My MIL and FIL say no way.

I know I am being selfish but I wish he would consider dialysis, especially after coming on here and reading about your success stories.  I guess I have to respect his choices.  He is 55 and says he has had a good life.

[monrein]

Your FIL is not old but he has gone through a lot and he may be too frightened to get the info he needs to make an informed decision.
Some facts to present to him are:

1) waiting to begin D might cause his health to deteriorate to the point where a transplant becomes too risky.  D is a way to keep the body sustained enough with sufficient health.

2) my numbers were right around were his are when I began dialysis for the second time.  My doctor worried that I'd become malnourished if my appetite declined any more.  Usually (but not always) people actually feel better once they begin clearing out the build up of toxins in the body.

3) D often helps to bring blood pressure down (I came off of all 5 of my  BP meds when I started D)  which is an excellent thing to have under control prior to any surgery.

4) Sometimes the testing of a potential donor can take quite a while and they aren't always approved.  Many of us have been serially disappointed by this process.   D stabilizes the recipient so that process isn't rushed which is not a good idea for anyone involved. 

5) If the mass on his kidney is in fact cancerous and the kidney is removed, he may have to be several years (up to 5 years) cancer-free before a transplant.  D would then be his only real choice other than eventual death.

6) He needs to know that if he did discover that D is absolutely as awful as he thinks it will be, he can stop going at any time and can choose hospice care to help him with the process of dying.

7) his brother should check whether being a donor will compromise his own health insurance in any way.  Especially with a new job etc.  This is not an issue for those of us in Canada or other Commonwealth countries but it's a crucial issue for Americans.  My donor was from Florida and this was a key point for us.




You are not being selfish for wishing he'd consider dialysis.  I wish he would too.  My guess is that he's feeling sick as a dog, can't imagine ever feeling healthy again and death might even seem like a pleasant reprieve from all the feeling lousy.  You will have to respect his decisions but that doesn't mean it's easy to do so.  I'm sure that others here will have lots more to add.

[Prayformiracle]

Hey Monrein - thank you for your help so far.  I am sorry to hear about your struggles so far.  Are you working towards getting another transplant?

I agree with you that he doesnt know until he tries it and wish he would try it.  He doesnt feel that sick right now and does not have the tell-tale signs of kidney failure.  He is a bit tired and his legs hurt from the swelling.

[monrein]

I had my second trx in February of this year from my sister-in-law, then had my first trx kidney removed two months later.  The new trx is working really well and my first trx (cadaveric) lasted an amazing 23+ years.

PS  I'm the same age as your FIL.

[Prayformiracle]

I had my second trx in February of this year from my sister-in-law, then had my first trx kidney removed two months later.  The new trx is working really well and my first trx (cadaveric) lasted an amazing 23+ years.

PS  I'm the same age as your FIL.

Wow - amazing!  I just got a tear in my eye!  You have given me hope!

[Hanify]

You can't make the decision for him, which is sad, because dialysis is certainly something that is scarier to contemplate than it is to do.  I live a good life - I'm a bit more tired than I was, but that's manageable.  I have a machine at night time, and that's it.  I go about the rest of my day completely normal.  No one would know there was anything wrong with me unless I told them.  Unfortunately, your FIL could get too sick to get the transplant - the time frame doesn't sound good.  Even if your husband could donate these things take quite a while to set up!  Would your FIL ever get on a site like this one to talk to people about it?  Good on you for trying too.

[Goofy]

You and your family sure have a lot to deal with.  I feel bad for your FIL.  It must be really hard to see him go through this.  I may have a different opinion regarding your situation.  I do hospice volunteer work and I see a lot of emotions at the end of life choices.  Its hard for the family to see someone they love, say they've had enough and are ready to just go peacefully. 

Our first thoughts are to plead with our loved one to not "give up". But some people may also look at that as being selfish. I know that's what I did to my mother.  She had cancer and I begged her to do chemo.  She did, but not for herself, but for me.  Now I look back and think how selfish I was.  I made the last few months of her life miserable just because "I" didn't want to loose her. 

I swore I would never do that again to anyone.  Actually that's what made me decide to do hopsice volunteer work.  It's so hard for the families to be objective in a situation like that.  My purpose in volunteering is to be there to support the patient who decides to call it quits as well as being there for the family member who can't deal with the decision.

To the family it may look like the patient is giving up but sometimes the patient just can't take any more.  They are ready to make peace with themselves and accept we can't live forever. I would imagine your FIL must be very depressed and can't see beyond today.  So I would think its hard to really know if he "really" has had enough or he just can't see any way out of his situation.  Either way, it's a difficult part of life we have to accept.

As far as your in-laws not wanting their son to donate, is a whole another subject in itself.  Unlike your FIL, I don't have a three month decision to make but I know at this point I don't want my children to even be tested.  They have begged me to accept thier offer, but I just can't do it.  I'm sure there are other people in this fourm that feel the same way.  It's so hard to explain.  Everyone I know thinks "I'm" being selfish because my children would be happier if I weren't sick or on dialysis. But as I stated above, we all have our reasons why we make the choices we do.

Everyone has thier own definition of "quality of life".  I know for myself, I'm ready when ever the good Lord wants.  If I get to a point in life where I've had enough, I hope my family would support my choice knowing that's what "I" want, and not what they would "like".  Life does not go on forever and that's something we have to accept.

[KICKSTART]

I think its fear of the unknown , but for every negative there is a positive. Ok so dialysis is ups and downs , but we still have good days as well as bad , maybe he fears its all bad ? You only have to look on here to see how many people have kept their sense of humour!  In an ideal world you should get him to read about the wonderful people on here , who help , support, and offer information to anyone who needs it , then he might see how other people cope with dialysis and its not the end of your life , its just a different one !

[*kana*]

dialysis is certainly something that is scarier to contemplate than it is to do. 

This is what your FIL needs to know!
We all have been just as terrified and he.  It is so normal to be scared and not want to go on dialysis, but he will feel better then he does now.