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Author Topic: Frustrated, Angry and Let Down by Recipient  (Read 396 times)

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Offline ThomasK

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Frustrated, Angry and Let Down by Recipient
« on: December 10, 2022, 03:25:23 PM »
First off,  If I were asked to be a living donor again….I wouldn’t hesitate in saving a life! The donation doesn’t feel like a big deal to me for what I’ve done…I’m an optimist in thinking most people would do the same. However, it is not my intention to look for “back up” here or have anyone voice an opinion about who is right or who is wrong. All I would like to do is solicit some comments or opinions and gain a broader scope with whether my thoughts are just and have merit and how I may try salvage a relationship and hopefully have parties involved to do the right thing.
Last year a family member was at Stage 5 Liver failure and desperately needed a transplant. After being on a transplant list for several years, the window to act upon any donation was closing fast. After months of emotional cries, pleas and phone calls from family members and ironically having an upcoming personal ability with a career change that offered me extra time…I decide to start the process and test to become a donor.
After a few months of testing, I was finally cleared to proceed with becoming a living liver donor in January. Our surgery(s) were scheduled for early Spring and successfully completed shortly after. Prior to the surgery, I was very clear about what being away for this amount of time and stated THAT I CONNOT AFFORD TO GO BACKWARDS BECAUSE OF THIS (opposite side of the country)  and what it would require from me financially with me being away from home and not working for 3-4 months. The surety I received “Don’t worry about it, we will cover all your home, medical and basic responsibility costs during this process and in the end would like to do a little extra for you as a gift for your generosity with giving this life saving gift”…. I mentioned that I’m not here for the extra ”money / gift”, This is what family does for one another…Just make sure I have my basic responsibilities covered, anything else you feel you want to do….That’s entirely up to you (recipient).
So with that being said, I was not able to immediately begin my new position as planned prior to finding out about the need to donate to this family member. I am not the type of person to over promise and under deliver to a new employer. I felt the need and explained the circumstances of the donation and expressed my concerns with the time restrictions and delicacy required and hopefully they would be understanding of this special situation and allow me the extra time before starting a new position.
Between the testing, phone calls, lab work, wellness counselor visitations, the couple months prior to the surgery, those months simply flew by. I accepted that there could be financial struggles along the way but was committed to make this work out and pray for a positive result.
Prior to surgery, the timing forced my prospective employer to have to go in a different direction because of the need to do what’s best for the company (understandable). At this stage my nerves were a tad frail due to uncertainty with finances, but still relatively solvent and stable knowing I had enough in savings to weather the storm for a few months and extra time to find new employment.
Fast forward to post surgery/recovery: My home responsibilities and bills usually fell into a financial obligation of about $2500.00 to $3500.00 per month and that doesn’t include any entertainment, food, home necessities or personal needs. At the time of post surgery/recovery I was starting to feel the stress of financial instability with not receiving any funds from the recipient family for my previous months responsibilities. I was not comfortable asking for what had been promised, but regardless…I had to dip further into my savings/CC’S to keep the ship safely a float for when I would return. After the first 20 days a received some funds, but only about 2/3rds of what my monthly bills were (Rest I covered). 30 days later I received another payment totaling 1/3 of my monthly bills (Rest I had to cover). Then increments of $500 every 2 weeks for 3 months totaling about 6-7k for 3 months of the donation/recovery process. With not being able to commit to a place of employment that wanted to bring me on board but were unable to wait the duration required for this surgery and my start date, the 3 months prior to surgery were out of pocket as well.

Finally, I was forced to discuss this openly. I listed all my expenses for the 3 months of surgery and recovery and asked that they reimburse me for those expenses. The reply I received seemed like plausible deniability and no mention of the “gifted funds”. The response I received back a spread sheet on all the “so called” extras and payments that were paid for, over that time period, hence….showing me a total of $7500.00 and then the promise of $1000.00 when I decided to return home.
With being unable to return to my home and wanting to help my family (Donor recipient) until they became more independent and back on their feet, I was lucky enough to find a friend to rent my home while they were waiting for a new home to be built. I ended up staying at the home of the family member for the duration of about 4 more extra months outside of the donation timeline for a total of 8 months. I worked part time while there and consequently, was also paid a part time wage….All while searching for employment back in my home state and maintaining my own personal bills. I eventually returned to my home looking forward to get life rolling again, only to start feeling depressed, no energy, digestive issues…..and then to top it off an abdominal hernia and broke! Pack the bags, return trip for appointments and another surgery!!!! Since my return, I have not received a penny for gas, hotel, loss of work (new job)…..I’ve been forced to return to the same family members residence because I have nowhere else to go, no income, no savings, No ability to go to work, Etc.
I feel manipulated, used and unappreciated! And here I am alone preparing for surgery and the donor recipient, and their spouse felt the need to go to a mini vacation to a warm climate over that time when I am looking for help instead of doing this alone (Glad y’all got what you needed, and your lives are back to normal).  When I very recently spoke to those other relatives who assured me, they even would be willing to help financially, prior to surgery “if it was needed” (who were also the ones calling me crying and begging me to help with this donation) to step up! Response: “It was your decision to do the surgery!!! So you’re saying it was my choice to let this person live or die….You’re an idiot (Family member) with saying something so grotesquely inappropriate and hurtful. WTH. Damned if I do, Damned if I don’t.

So, in conclusion: I will find a way to resume my normal life. I’ve been knocked down before and I’ll continue to pick myself up and carry on. If this can help anyone preparing to do the same as I have….May I suggest instead of a promise or a hand shake, you have documents drawn up, so both parties are culpable, obligations are meet and you all walk away amicably.

I would like to hear different perspectives….. if anyone else has faced this type of issue or not. It would help me greatly to hear opinions, whether I’m justified in my disappointment and frustration and what I can do moving forward.

Q: I would like to hear what other recipients have done for living donors, besides making sure all medical related costs being covered.

Q: Does anyone know of any grants or programs for Living donors?

Thank you for reading, Sorry for being so long winded
Thomas

Offline Michael

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Re: Frustrated, Angry and Let Down by Recipient
« Reply #1 on: December 12, 2022, 10:36:57 AM »
Thomas,

Thank you for sharing your experience. As you note, it will be helpful for future donors to know the importance of having documentation -- even if it's just an email -- that confirms the terms of agreement for financial support from the recipient. Also, you were good to turn down any compensation beyond reimbursing travel, lodging, and lost wages; that would have been illegal.

As far as where to go from here, here are a few thoughts:

  • You might want to post your situation and questions in the LDO Facebook group. There are many more readers there. There are also other living donation Facebook groups that would be a good target for you.
  • It sounds like there wasn't a "meeting of the minds" with your family about what you expected from them and what they were willing and able to provide. But it's never to late to try to get to an agreement. Perhaps you could try again. Something is better than nothing!
  • You could set up a GoFundMe page, and promote it to friends, family, and the donor community.
  • Check the tax law in your state to see if they allow for a tax deduction or credit for unreimbursed donation-related expenses. https://www.kidney.org/sites/default/files/ld_tax_ded_leave_20220603.pdf

There are several organizations that reimburse expenses for donors in certain circumstances. In most cases as far as I know they require an application before donation, so I'm not sure they will help you, but you can at least ask. Here are a few:

I hope this information helps you find some financial resources. Thanks again for sharing your story.


Michael
Living Donors Online
Our mission: to improve the living donation experience

Offline Michael

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Re: Frustrated, Angry and Let Down by Recipient
« Reply #2 on: December 15, 2022, 12:34:49 PM »
Here's another potential source for funds: http://www.healwithlovefoundation.org/index.html
Michael
Living Donors Online
Our mission: to improve the living donation experience

 

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