Thinking of donating.....

[kim99]

Hi, I'm Kim.  I'm 37 years old.  I have been considering donating a kidney to my stepmom and found this forum while doing some research on what to expect.  I haven't told anyone, including my stepmom, that I am thinking of donating.  I want to get some more information before I get her hopes up, although I do know that we are at least the same blood type.  Frankly, I barely know my stepmom.  But I know she has been on dialysis for 3 years and her dialysis is now daily.  She is severely diabetic and also needs a pancreas transplant.  I have 2 younger brothers (age 16 twins) who already watched their mother die of breast cancer.  They love our stepmom and I can't imagine what it will do to them and to my dad if she doesn't get this transplant soon, which is why I am considering it.  Plus I guess I just feel like it's a worthy thing to do for anyone.....I mean, the idea of saving someone's life even if I don't really know her is pretty awesome.

I have a million questions and I'm not sure where to start.  Some of my concerns are.......

-The time off work.  I can't really afford it.
-Who will take care of me after the surgery.  I don't live close to my dad and he will already be caring for my stepmom anyway.  My boyfriend works 60 hours a week so while I know he would take care of me, he just doesn't have a lot of time so I have questions about how much care is necessary after the surgery and whether it would be doable for me.
-The reactions from others.  My mom will hate it.  My boyfriend will think I am crazy.
-Would I be doing this for the right reasons?  What are the right reasons?

These are just the tip of the iceberg as far as questions and concerns I have.  I obviously have much more research to do as far as the actual procedure, health concerns, etc. but I wanted to get some input from people who have been there.

Thanks in advance for any input!

[sherri]

Kim,

sounds like you are starting in the right place by asking lots of questions and thinking ahead. You can contact the hospital where your step mom is being treated and ask to speak with a social worker or psychologist. You can do this confidentially. Aside from the medical evaluation, the social worker or psychologist needs to make sure you are ready emotionally, physically, financially for an elective surgery such as this one. You can also go through your own insurance and speak with a mental health care professional to assess a lot of the questions you asked.

A responsible hospital should make sure you have your own health insurance so that you can be followed up medically in the future. They will only follow you for 2 years, if that much. You need to be able to afford to take off from work to recuperate. Hospitals like to say this is minimally invasive and people go home after 2 days and return to work after two weeks. Most donors, and you can look on this forum, usually take 4- 6 weeks off from work, depending on the type of job they have. There is a lifting restriction like with any abdominal surgery, no lifting more than 10 lbs for at least 6 - 8 weeks. If you do have complications you need to have a financial cushion so that you can remain out of work and recuperate. These are all issues that you brought up and can speak with someone who can advocate for you. There should also be an independent donor advocate at the hospital so ask about speaking to them.

You also need to find out if your step mom is eligible for a transplant. Some patients have other medical issues going on and are not active on the transplant list. In the meantime, keep educating yourself, examine your support system so you can make an informed decision.

Keep us posted and ask any other questions. Good luck,

Sherri

[kim99]

Thanks for the info, Sherri!  I don't have any health insurance so that is a problem.  My stepmom is eligible for a transplant.  She has been called 4 times now but each time the kidney has not been viable.

I didn't know I could contact the hospital about it confidentially.  I will do that.  Thank you!

[MissFrizz]

Hi, you are in the right place.  I have not donated yet, but I found I am a match for my dad and he agreed to accept.  The first thing I did was contact the transplant coordinator at the center where he is registered.  They are a wealth of information and can even tell you if your stepmom is active on the list or not.  After they explained the step-by-step process to me, I was sent a packet of information to review.  Nothing overwhelming, mind you, but lots of resources and statistics.  Included in my packet was an application for funds to cover transportation, parking fees, and hotel costs, so you may want to ask if there is a program that can at least help you with that.  In my case, all of the testing, surgery, and follow up care are covered by my Dad's insurance.

You don't have to tell anyone you are researching this.  You can continue to do research and ask questions and search your heart while you test for compatibility.  I knew I was compatible for more than a month before I was sure it was time to talk to Dad.  As I was discussing it with him, I found that I was genuinely wishing he would decide to accept.  It was never an easy decision for me because of my situation, as well. 

It is a wonderful thing to even consider this.  Keep asking questions and best of luck to you.

[Fr Pat]

Dear Kim,
     Three things that might be of help:
--- Find out at your job if they have any policy in place for living organ donors. The Federal Government and some State governments give medical leave WITH PAY to organ donors, and some (few) priviate companies do so as well.
--- Organ donorsw may not be paid for the organ, but it is legal to re-emburse the donor for lost wages and all financial costs (travel, lodging, etc) connected with the donation. Some families organize fund-raising activities to help the donor with this, and that is quite legal. It does, of course, involve some loss of privacy, but often there are people who are ready and willing to contribute once they know of the need.
--- Keep in mind that some (few) kidney donors do suffer long-term health complications that can result in being out of work for a longer time. So it is wise to have "just-in-case" financial plans in order. They can give you a rough idea of when you can reasonable expect to be able to return to work, but NOBODY can predict with certainty just how much time YOu will need. Each donor is different.
     
       Hope some of this helps. keep getting well informed. Also, make sure that your step-mom's other relatives, friends, neighbors, co-workers, Church/Synagogue members, old alumni, etc. know of her ned. There may be other willing volunteers who are in better financial/insurance shape to donate and would be willing IF they knew of the need and the possibility. Get the word out.
      best wishes,
         Fr. Pat