Just starting the donation process...a few questions

[Nortinski]

Hi there!

So, here's my story.  About ten years ago, maybe a couple more (or less) I read an article in a magazine (Reader's Digest I think) about some guy giving a kidney to a stranger he met on a plane or something and it just kinda stuck with me.  I had donated blood numerous times and had always been a big believer in being an organ donor but had never thought about being a LIVING donor. 

I knew right then that I would give my "extra" kidney away some day. 

I was married at the time and my wife was aghast at the idea when I brought it up.  She said it was too risky to do such a thing for a total stranger and what if one of my kids needed a kidney some day and what if I died and blah blah blah....

We eventually got a divorce and I got remarried and had a job that just wouldn't allow for time off for such an endeavor.

Time passed (I'm 43 years old now) and now just feels like the right time.  I have an easy desk job so I don't do any heavy lifting or anything and I have a new and improved wife that is supportive of my decision. 

I went on Facebook and found a woman that needed a kidney but she has a smoking habit that she is having trouble quitting and then she and I had a falling out over political/social opinions (I'm a flaming liberal and she is quite conservative) so she "unfriended" me.  I even wrote to her and told her that I don't care about her political position, I just want to help her LIVE and my kidney is still hers if she wants it. 

She didn't reply but she DID share my contact info with a nice guy in Ohio that is VERY serious and ready for a kidney.  He and I have been chatting and it's looking very good. 

So, I'm getting a packet sent to me soon and hope to give this "extra" kidney to HIM soon.

Now my questions.  (and I'm sure this first one is very common and will be answered somewhere along the process but I'm gonna ask you fine people.)

I feel a little awkward asking ANYONE this but I think I'm safe asking here.  I'm not rich by any means and do NOT wish or desire to make ANY sort of profit off of this thing, but I also can't afford to LOSE money.  Let's say I'm out of work for three weeks. I'll lose about $2,000 in wages if that's the case.  Are there programs or SOMETHING that will help me with the lost wages so I can pay my bills?  I'm sure my employer will gladly write a letter showing exactly how much in wages I'll miss out on.  I feel like a shmuck even asking about this but the fact remains, I simply can't afford to lose out on several weeks of pay. I really don't know what the financial situation of my recipient is but I don't think he's rollin' in the dough and can just cover my lost wages. 

Another question.  Since I have a desk job, would I be able to get back to work quickly?  I once had a hernia surgery and I had a cool electronic "pain pump" that numbed the incision area and made it so I wasn't high on pain meds and I was back to work in 4 days.  Do they do pain pumps for kidney donors?

Also, I would LOVE to have my wife join me when I fly out for the surgery (assuming I'm a decent match).  Does my recipient have to pay for my/our flight or does insurance cover that? 

My apologies if these are stupid questions.  I figure if anyone would know the answers, this group would. 

Thanks for your time.

Nort

[PaulaHalvo]

They are not stupid questions. Others will no doubt be able to give you better answers than I. My understanding is that there are some places you can apply for financial help. Some states give tax breaks to donors. This is a very expensive gift. It's something that is not much talked about. For us, we paid for all our trips to Ohio, the hotel bills, the meals out and also took the loss of pay for six weeks. (I'm an EMT and because of the lifting, really can't go back for that long.) I know that many times the recipient foots all those bills. I do not know of any insurance that helps with them.
Sorry I don't have better answers for you.

[SWB]

I think your question regarding timeframes to return to work are answered throughout the various posts which I suggest you read through thoroughly.  Much depends on the procedure approach (laparoscopic or not) and each individual's approach.  In terms of lost wages, some companies will allow their employees to use FMLA or other partially-paid options for this type of scenario; however, that varies widely by company.  In addition, some companies will allow other employees to "donate PTO/Vacation days" to another employee's bank which is often overlooked.  However, I am not aware of any programs that cover that or if any of the insurance companies cover it.

During my evaluation process the Social Worker mentioned that there is some type of Federal grant program for travel costs which are based on a combination of the donor and receipent's income.  Someone else here may have more information regarding that but I know it can only be used by the donor family.  I do not qualify for that program so did not discuss in detail with the transplant team.

The first step of the process is typically the blood work and after that if there is a match I am sure the facility will assign you a transplant coordinator.  The transplant coordinator should be able to answer much of your questions.  I would encourage you to be VERY upfront with him/her about the entire scenario so that they know your full situation.  The pre-donation process is what I am finding to be the most grueling; however, I also understand and keep in mind that the transplant team has my health and best interests in mind as well.  So, though frustrating, I can't complain.

Well wishes and blessings as you continue contemplating and continuing the journey; and, I hope everything works out for you and a lucky receipent in the long run.

[sherri]

The questions you ask aren't stupid at all. And the concerns your first wife raised are also very real. In terms of financial help, I can only reiterate what others said. There may be some federally funded programs to help cover with travel expenses and lost wages but you need to qualify and from what I remember you had to have an extremely low income to qualify so I am not sure how realistic these programs are. The social worker at the hospital can give you written information. Some donors/recipients have fundraisers in their communities, house of worship or through friends to help raise money to defray some of the costs. Other donors choose to have their surgery in their home town and donate at a hospital close to them in order to avoid the costs of travel. The recipient can sometimes travel to the donor's city and then return home.

Donors will be asked if they have health insurance. Even though the surgery and testing is covered through the recipient's insurance or Medicare you will need to be followed with blood work and lab work for the rest of your life in order to ensure that your lone kidney remains healthy. The center will cover lab work usually 1 month, 6 months, 1 year and 2 years post surgery. Then you are on your own. Some donors who have suffered complications or whose creatinine has gone up have had difficulty getting private insurance or have had to pay more for it. They usually have had someone intervene on their behalf to clear it up but it has happened.

In terms of time off. Each person is different. I think most donors stay inpatient anywhere between 2 - 4 days. I had my surgery on Monday and left the hospital on Friday morning. I took off 4 weeks from my part time job (24 hours a week). I had a few sick days left which I used the rest of the time was leave without pay.My husband, who is self employed, took the first week off to help care for me. So we did have to figure in the lost wages. You also have to anticipate if there are complications and you end up having to take off more time or go back to the hospital for treatment. Sometimes donors have problems like bleeding, infection, bowel issues, hernias (that seems to be one we have heard about on this board most often). So make sure to leave yourself a cushion for extra time even if you initially plan on going back to work after a couple of weeks.

Best thing is to get the information from the hospital. Read it over carefully with your wife and see if this is something you can handle at this time. This site has lots of information regarding the surgery so keep searching and reading. There is a lot to plan for an elective surgery especially one that is not medically beneficial to you. I really tried to plan for most things beforehand and my recuperation was uneventful so we were very blessed.

Good luck on your transplant journey.

Sherri

[Michael]

Nort,

Be sure to read the educational information available on LDO. You'll find answers to your questions here: https://livingdonorsonline.org/kidney/kidney.htm

Let us know what other questions you have as you get into the process. Best of luck!

[cupid]

I think all the questions you ask are fair and good questions.
I am not going to comment on who you give your kidney to-that is for you to decide.
I have to assume you will be back to work within 3 weeks-esp if its a desk job
The topic of money is touchy. I am a health care provider and have my own practice. I have lost a lot of my own income during this process but it is something I had planned for when I started testing. You must make very low income to qualify for any of the programs out there. There were moments weeks before the surgery that I was so worried about finances that I thought I'd go crazy! Looking back now, all of that will take care of itself with proper planning. While my recipient and I did discuss setting up a fund at a local bank to cover my lost wages-which is perfectly legal-we both had concerns that this would be construed as 'buying' kidney-which is a huge no no!!
There wasn't a pain pump when I was released-just some narcotics which I only took for a day or two.
You can have your wife join you, but I fear it would most likely be on your dime unless your recipient is willing to foot the bill for that.
After you find out if you're compatible or not with this gentleman, you will go though some pre-op appts, one with a social worker who can discuss all the financial issues with you. I urge you to think through all of this before you continue your testing. In my opinion, its very difficult -but not impossible-to say no to someone who needs your kidney-after you find out all systems are go.

[CK]

I am also self-employed and lost income when I was out of work, but I donated to a loved one, so it was well worth it to me. I was not eligible for state short-term disability as I am a sole proprietor.

I found out too late that Aflac would have covered it if I had been paying into it for a year. They have short-term disability plans in my state that pay quite generously (depending on how much you opt for) but you have to have them for a year in order to get paid for organ donation. I didn't have the option of waiting a year (or rather, my recipient didn't) and it doesn't seem like you do either.

I was out of the hospital the day after surgery and recovered quickly. I could have gone back to work in 10 days at least part-time and probably full-time.  I took an extra week off to help my recipient so I went back after 3 weeks with no problem at all. Hard to know how you will fare, since everyone seems so different.

[Nortinski]

Thanks for the information my friends.

I'll discuss these matters when I'm assigned a coordinator.  It is my privilege to participate in something bigger than donating blood.  My new friend, Mr. Recipient, goes through hell with his dialysis and the sooner I can stop that torture, the better. 

Thanks again.

I'll come back in a few months or so and report the latest.   

[Jewels]

Hello - The federal donor assistance program I am aware of is through the NLDAC and the web site is: http://www.livingdonorassistance.org/.  Eligibility is mostly based on the recipients income level.  It covers only travel expenses, which of course is a huge help.  I don't think it covers lost wages and I am not aware of a program that does this.  I was very fortunate to get short term disability for my time off work, be sure to check with your company to see if they would cover any time off.

Good luck on your journey, and come back with any questions!
Julie

[joshperkins3]

I donated a kidney annonymously in May of 2011. Did a lot of research online and there are a lot of good sites out there. The one link that was shared already is a good one in regards to a national grant to help cover travel costs. U will need to work with your coordinator on getting the required paper work and also make sure do fill it out early as it takes some time to process. Another site to look into is http://www.trioweb.org/communications/travelprogram.shtml . They may be able to help out with travel arrangements. Unfortunately there is not a lot of help for lost wages. If your recipient can cover any then that is allowable i believe, otherwise its sick or vacation time at work. Recovery time is very up in the air. I had my surgery early on a Tuesday morning and was back home by Wednesday night. It really depends on how quick your body can recover and whether its laparoscopic or not. Get up and walk ofter, this will help with circulation and healing. You are going to be sore and you will find that your not going to have the energy like you use to. If I remember correctly, I think I was up and moving a lot better by the weekend. Take things easy and let your body heal. One thing I found that helped was sleeping in a recliner, its a lot easier to get up as rolling out of bed was very painful. Hoped this helped and feel free to get ahold of me with any other questions.

Best of luck!!!

[rogermims]

email me at jt.cheaptrips@yahoo.com and I will send you the information you need to sign up for assistance. Yes your wife can be with you at all times. It's called The Gift of Life Family House. My nephew is signed up in all the programs that pay for the donors expenses. His insurance pays for all medicals as well.

[PhilHoover]

There are lots of programs that can help....but make sure you start building a personal support system as well.  Your workplace, your local church/synagogue, your circle of friends...these people will be ESSENTIAL in a good recovery.

If I can help in any way, please let me know.

Phil Hoover
Chicago

[theburts26]

Hi Nort,

Please visit our website at www.mattskidney.com I have posted a lot of resources on their about our process, including fundraising endeavors, and lots of the wonderful individuals from this site have also offered suggestions. We would love for you to become a member and share your experience as you travel through this profound journey.

Best wishes!!