complications following surgery

[serenity]

I am considering being a donor and was wondering if anyone on this site could tell me about any serious complications they may have had following the surgery.   I have no insurance coverage and am concerned about high medical bills down the road.

[sherri]

While the actual testing, surgery and immediate follow up appointment is covered under Medicare or the recipient's insurance future health follow ups are the responsibility of the donor. you can get information from your transplant center about complications from surgery or read the information on this forum in the information section. Most donors do well but several donors have complications related to the surgery immediately post op which should be easier to have covered by the hospital. However, there are donors who have complications several weeks out of even longer and then are in a difficult situation. They often do not live near the recipient's hospital and are left on their own to deal with their long term health issues.

I suggest you speak with a transplant social worker who can give you more information. Also if you don't have insurance, some donors have reported having difficulty getting private insurance after donation surgery because their creatinine has gone up or having to pay more for insurance. These are definitely issues worth exploring in order to make an informed decision.

Good luck with your journey.

Sherri

[serenity]

Thanks, Sheri.   I've been doing a lot of research on this and it seems that the transplant team's main focus is on the recipient and little support is given to the donors following surgery.   They also seem to minimize the risks to the donor.

[sherri]

From reading many posts on this forum, it seems that the level of donor care differs greatly among the over 200 centers in this country. I do wish we had a consumer report type of section where people could rate their hospital experience and give the advantages and disadvantages of each. You can read through and sort of get an idea of where people had good and bad experiences. I agree, donor care is often secondary to recipient care. I think doctors are trained to treat sick people and disease and are less equipped to treat the healthy patients like donors. They often just keep quoting the same old adages like: : a second kidney is like a spare part, you only need one to live (how many of them are living on their spare?), you only stay in the hospital 2 days, go back to work like nothing happened, all the expenses are paid by the recipients insurance etc. Let's face it, the recipients are sick patients who they need to heal and this is how hospitals keep their transplant centers open and thriving. That is why it is so important to get independent input from professionals outside the transplant center in order to make an informed unbiased decision. You really need someone to lay out both the risks and the benefits. You also need to evaluate the hospital as much as they are evaluating you. Yes, most donors do well, but if something  happens will these professionals be there to hep me, will they advocate for me, will they pass the buck saying my complication is not related to the surgery or tell me I need to go back to my own doctor? Lots to think about.

Are you considering donating to someone you know or at you donating as a non related donor? Family donation often has a lot more emotional issues attached to it and sometimes it can be helpful to talk to a mental health professional to sort it all out.

Keep asking and exploring.

Sherri

[Donna Luebke]

Has the transplant team voiced any concerns that you are ininsured?  Did they tell you about The Living Organ Donor Network Insurance or the National Living Donor Assistance Center?

How far are you traveling to donate?  What insurance does your recipient have? 

[dodger]

Even if you can secure insurance, are you going to be able to afford the payments down the road long term, do you have enough job security.

I think what you are considering is commendable and noble, but you need to think with your head and not your heart on this one.  If you can't now, then there will be time in your future when perhaps you are a bit more secure financially.  I donated at 59 1/2 so I'm thinking you will have plenty of time to be a donor, just stay healthy, as we all should.  Best wishes,  Janice