When your Intended Recipient Maintains an Unhealthy Lifetime.

[Raychill]

Hi.
I'm brand new to this forum and at this time I'm a potential living donor for my mom.  My mom went into renal failure in December 2015.  I was 33.  No questions asked I said that if she needed a Kidney and I could give it to her, I would.   I guess that's where it starts.

Long story short - My mom went into Kidney failure 3 times over 3 years and the last one stuck, she's been on Dialysis for the last year.  Now, she's starting the process to look into getting a Kidney transplant and as I told her in 2015, I'd be willing to be a donor.  Since COVID-19 is impacting everything, we've only had her initial meeting where they said she was a good candidate and I've filled out the paperwork to be a living donor.   I do know that I'm healthy, my kidney functions are great, and I have the same blood type, so I'm hoping I'm a good donor for my mom.

She's my mom, I would never second guess giving her my kidney to prolong and better her life.

Here's my ... concern.  My mom is in Kidney Failure due to a lifetime of not taking care of herself. 

My mom is a 66-year-old woman who has had poor eating habits her entire life, at least I know she has my entire life - I'm 37. She likes potatoes and pasta more than veggies and fruits. Her idea of exercise is walking around a store shopping.  She would quit diets before she started.  When I was 19, she was 320 pounds, diagnosed with diabetes, and opted for Gastric Bypass surgery to lose weight.  She lost weight, but never changed her habits.  She continued to drink soda and eat potatoes and pasta and junk food and avoid vegetables and fruit and anything remotely good for you.  Her diabetes never subsided, nor was it treated and when her kidney functions started decreasing, she didn't take it seriously.  She'd still take ibuprofen for pain, she took so many drugs for all of her medical issues rather than addressing the causes.  Doctors are to blame too because they prescribed the medications.  She'd complain of something, they'd explain it's likely due to her weight/eating habits/diabetes, etc. and she'd get upset and they'd just prescribe something to her anyway.     

Even after 3 Kidney failures requiring dialysis and lengthy hospital stays, she hasn't changed her diet.  She figures as long as her numbers are good, she's fine.  She eats a ton of tomatoes during the summer knowing that tomatoes are something she should limit with her kidney functions.

I'm not trying to be overly judgmental of my mom and her habits.
Here's an example of her regular habits:

Today for breakfast she ate potato chips with a cheese dipping sauce with sweet tea.
a couple of hours later she ate half a party size bag of Cheetos Puffs, a fudgesicle, and a bottle of soda.
for dinner, she had 2 air fried drumsticks, some mashed potatoes with gravy, and corn with sweet tea.
(Corn is literally the only vegetable she eats).


On the other hand, I stopped drinking soda when I was a teenager because it's not good for you and it wasn't something I felt I needed to continue to drink.  I've never been overly healthy or overly unhealthy but knowing my mom wanted to start the Kidney transplant process, I've been working hard and I've lost 25 lbs over the last 3 months to get myself into a healthier place for testing and donation.   I'm using Weight Watchers to help in weight loss but also to help establish healthier habits, exercising regularly and researching life after Kidney donation and what I can do to ensure I remain healthy with only one Kidney.

My biggest concern is that I'm going to donate my kidney to my mom to help prolong her life, but that she's not going to change her habits and that my kidney won't prolong her life for very long.

So I guess I'm here to see if anyone has had a similar experience.  If Kidney transplant patients don't change, if anywhere in the transplant process a Dietician may intervene.  Or if, as long as her numbers are in the right ranges, she can continue eating unhealthy.

If I try to have discussions with her about her unhealthy eating habits, she just gets angry.  My dad is an enabler, and he tries but she gets mad at him too and at times, he's even defended her when I've brought something up.

I will give her my Kidney regardless, but I sure would love for her to treat it better and help prolong her life by finally maintaining a healthy lifestyle.  If anyone has any tips for how to talk to her, who I could talk to during the process, or how to deal with her continuing her unhealthy habits after her transplant, I'd love some insight. 

[Fr Pat]

You might also want to post this at the FaceBook page of Living Donors on Line, and also the page of "Living Kidney Donors Support Group" to get advice from donors who have faced similar situations. These days many more donors use those sites rather than this one.
I did not know my recipient, so I don't have any personal experience on this to share with you.

[sherri]

Raychill,

I am so sorry that you are going through such a difficult ordeal. It must not have been easy watching your mom sabotage her health. Related donors have a tough time. We don't get to "choose" our recipients. We love them with all their "baggage". And that is a difficult burden. It sounds like some therapy might be helpful.

I would suggest you speak to the donor advocate at the hospital who is assigned to you and be really honest. You can also go through your own health insurance and make an appointment with a social worker or psychologist. You cannot change your mother. you can only be responsible for your own actions and reactions. Chances are if your mom will not be compliant she will lose the kidney. She may not like the way she has to take the immunosuppression, she may decide to use ibuprofen or other NSAIDS or continue with her high blood pressure.

There are some donors who are ok with donating to someone who they know will not be compliant and they say, well it is not mine anymore. I gave them a chance. And there are other donors ( I think in the majority) who are so disappointed and angry at their recipients for throwing away their gift. How will you feel if the kidney is rejected after a short time?

If your mom is doing ok on dialysis, maybe that is good enough for her now. maybe it will give you more time to think about the ramifications of donation. you can still be a good daughter and not choose the donation path. I really think you need to sort this out with some professional help. If you decide to donate and the kidney is rejected you will need some good tools to cope with that loss. If you decide that donation is not for you, you will need some emotional tools to help you through that. Either way, a medical diagnosis often affects more people than the patient.

Keep us posted on what is happening and feel free to reach out.

All the best,
Sherri

[Monica__]

I completely empathize with how you’re feeling.

I donated my kidney to a friend in 2009, she was 26 at the time, I was 23. She had lupus nephritis and I was luckily a match. She never really did much to stay healthy, understandably, it was painful for her to exercise but she also wasn’t very skilled in the kitchen and consequently ate poorly.

I am not a health nut but I’m careful about what I eat. I enjoy greasy takeout occasionally but overall I have a well balanced diet. I spent a lot of time encouraging my friend to eat better, going as far as preparing nutrition guides and trying to help her make better food choices at the store but it was all with no sustained luck.

On her wedding day, her potassium levels were dangerously low. She wasn’t supplementing her diet and of course with her Lupus she was at a disadvantage when it came to losing potassium. Long story short, her wedding was held at a hospital chapel because she had to get admitted for her deficiency.

Following that, I thought she’d try harder and I helped her even more. But again, no sustained change.

We eventually grew apart, and part of that was disagreement about how she managed her health and how I felt she was perhaps not making the most of her newfound life extension. We lightly kept in touch but over the last several years but it was very superficial. Our friendship had really changed and I just had to come to a point of acceptance that she will do what she wants and I had no say anymore in what she does with that kidney.

She passed away on April 29, earlier this year.

My kidney bought her 11 years and in that time she was still suffering from her body rejecting my kidney (she also accidentally got pregnant and her immune system went bonkers and started the rejection process sooner than anticipated). It’s been hard to accept her passing and I look back and wonder if I was too hard on her about her health. Every day, I kick myself for being too hard on her. I hate that I let our lifestyle differences get in the way.

Ultimately, I know that I gave her 11 years to enjoy her life with her husband and 2 dogs. She became very religious and built a relationship with god. And even though I’m not particularly religious it gives me comfort to know she was comforted and that even if she didn’t do what I would have done, I’m just glad to know she had the freedom and opportunity to live.

Please feel free to DM me if you want to talk one on one. I think us donors really need to support one another especially for stuff like this.

[RB18]

I can sympathize. I donated a kidney in January in a paired kidney donation so my step-daughter could receive a kidney (we were not a match for each other). She has cognitive impairments, so she does not always make decisions that are the best for her health. She lives with me, so I can usually steer her in the right direction, but I am not with her 24/7 and cannot always catch every mistake. It drives me crazy sometimes. Some days I am furious. Other days I take it in stride. Then there are moments I want to cry. Or scream.

All I can offer is this - you are willing to give your mother a huge gift - a chance at life. Once she receives it, the choices are ultimately hers. This will leave you with moments that are tough. Make sure you have someone you can talk to. Your Independent Living Donor Advocate is a good place to start.  Realize that any mistakes are hers alone - they are not a reflection on you or your choice. Know that whatever you feel, you are not alone. There are people on this board who will always be willing to listen. 

[CK]

I donated to my husband, and early on, I really felt the urge to micromanage his choices. He's not terribly unhealthy, but better choices could be made. (I could make better choices, too!)

I had to let that go and accept that I gave him a gift and it's now his to do with as he wishes. He does value his donated kidney, and he wants it to last - it's just really easy to slip back into bad habits when you feel better, and ultimately, it's his now, and he has to manage his health.

I hope your mom will at least make some changes to increase her chances at living longer, but if not, you've done all you can do.