Extremely frustrated with lack of support

[Jessiebooth]

I am so frustrated right now. I am a potential donor for my 15 month old niece who is in need of a new kidney. I was tested and was a match and approved as a donor and let my sister-in-law know I would like to donate. After that I heard nothing for months. Then my SIL goes in with her daughter to see when she would be big enough for surgery and at that time they told her that although she had not met her weight goal, she was long enough, and I am small enough that we could go forward with surgery. They even showed her a picture of the kidney that will be removed from me and put into my niece.

They told my SIL they wanted to shoot for a surgery date of Sept 4. My SIL contacted me about this and I didn't really know how to respond so I was just sort of like, "wow, that's great." And she told me the transplant coordinator would be in touch with me. Finally, two days later, the transplant coordinator sends me simply this, via email:

"Received a message from pediatric team that ******* is ready for surgery.  Would you be able to donate September 4 th. You can call me tomorrow to talk about this."

So, I called her the next day and asked her if the following Wednesday would be possible, as I process payroll every other Tuesday and it would just work out better for me. She asked me if I really thought I could return to work in two weeks, and I said well I do have certain duties I need to perform and payroll is one of them. She began lecturing me on how this is a major surgery and recovery takes 3-6 weeks before a person is okay to go back to work on a part-time basis. I told her I am not trying to make light of this by any means, but that I cannot afford to simply be "off work" and I still need to perform my duties to keep a paycheck coming in. She got frustrated with me and said she would have the social worker call me back. She still has not.

I had asked the transplant coordinator in the past if I would be able to meet with the surgeon at some time prior to surgery and she said no, but that she could arrange a phone call possibly, but she never got back to me on that either.

As if that weren't enough, my husband currently works for my dad, and my dad has just been riding him so hard lately and just freaking out for no reason at all. My sister even got blown up at for asking my dad some advice. She talked to my mom and found out that it is because they are uncomfortable with my decision to donate, yet they won't talk to me about it! Bear in mind, my niece is from my husband's side of the family, and not a blood relative to me or my family, and this is why my parents are uncomfortable.

I also work for my sister, and when I tried telling her about my fears and anxieties regarding the surgery, she just asks me how much work I'm going to be missing because she "can't pay me to go take two months off to give a kidney." Thanks for the concern, sis.

My husband is supportive, but he's not the comforting type, and doesn't really know what to say to help any. I appreciate his support, though.

We have two very young children, an infant and a toddler, and they are literally my whole world. I tell people I am confident I can do this and still be a good mother to them, but now that there is a potential date in place it is scaring the hell out of me. I always want to be there for my babies. It's upsetting when I get into a negative spiral of thinking and start imagining everything that could go wrong. Ugh, I'm sure many others have been there too.

Now, don't get me wrong, I have zero intention of backing out on my decision, I just can't BELIEVE the total lack of support from MY family, and the professionals who are supposed to be MY donor team. If you really think my impression is that I will just hop out of bed after surgery and go back to work, why not do a better job informing me in the first place so you KNOW I know all there is to know. I don't know what to do to prepare at all, am I supposed to eat a certain diet? Stop drinking? Refrain from exercise? Why has NO ONE told me this? And my own family can't even come to me over the whole thing... It really leaves me feeling like I am just standing here all alone with no one around me.

The donor team sees me as a piece of meat, but I am an individual. I have a job, a husband, two beautiful babies I love more than life itself. I have financial responsibilities, morals, ethics, emotions that are all over the place right now.

God only knows how my family sees me; as an idiot, maybe.

I just don't know what to do. I can't stand the lack of support. It leaves me very scared, angry, frustrated, nervous, etc.

Have any of the other donors been through this feeling or had a lack of support?? What should I do???

[Karol]

I am not a donor, but a mom of a daughter needing a transplant. Frankly the whole lack of support is really sad. You are doing a wonderful thing for your niece, but it's also a huge undertaking. It seems like the transplant team, social worker, coordinator, etc should have spent more time understanding your situation. Did they tell you that you cannot pick up your children for a period of time? Or anything heavy, like a basket of laundry or bags of groceries? Some people recover quickly, others take longer. It's not something you can predict. Who is your support person while you recover?
Putting you in financial stress should never be allowed. And you should have seen a surgeon as part of your evaluation.
As far as your family being reluctant to talk about their reluctance to have you donate, I think it's not uncommon. There's a lot of fear about the risks you're taking and it's tough to discuss.
Regarding the job, childcare and other financial expenses, I have seen other families do fundraisers to help cover these expenses. Donors cannot be paid for the kidney, but they can be reimbursed for travel, lodging, childcare and lost wages. Your nieces family can organize this, or have a friend do it for them. When it's a child who needs the transplant, it's a little easier to get people to chip in.
I am sorry it's been so difficult. Sending you lots of {{{hugs}}} and hope things work out for the best.

[Clark]

Dear Jessiebooth,

  What a set of challenges you are dealing with! You have our empathy and concern. It will be hard, but I recommend talking through things with each of the folks you care about at home, and, unfortunately, at work. You have fears, concerns, and questions, and each of them cares about you and also has fears and questions. It's uncomfortable, and this often leads to some tense family dynamics and acting out.

 Separately, contact the transplant center and ask to speak to your Independent Donor Advocate. They are required to have one and to put you in touch with that person or team. That person will be able to help clarify things on the medical side, like appropriate contingency planning for a range of post surgical recovery scenarios, and on the hospital administration side, like keeping you and your information and communications separate from sister-in-law. It's great that your niece is anticipated to be ready soon, but you can't count on a specific date, all kinds of things may cause it to slip, or even jump forward suddenly, as happened to me.

  Regardless, you're very likely to miss at least one Tuesday, if not a couple in a row, so reasonably and dispassionately planning for this with your sister will be a priority. If your father is taking out his fear for you on your husband, that dynamic needs to be redirected so all three of you can get to a better understanding of one another.

  Finally, for now, I'm sure you yourself recognize the huge dilemma you're in, having made known your offer to be a donor to your niece while you also have young children and you and your spouse both work in what sounds like the same small family business. Best wishes.

  We're here for you. We've been in similar places. My daughter was 10 when I started on the path to donation, and my mother, sister, and a very dear friend and co-worker gave me a very hard time. Conversation after conversation, sincere heartfelt talks, as advised by the Donor Buddy I found here at LDO, got us through. My mother came around first, when talking to my recipient's family in the waiting room during surgery, then my friend, when her father died of kidney cancer a few years later, and only recently my sister. It may take a long time. It's worth the effort, no matter what you, or each of them, decide, now or later.

[Snoopy]

Wow!  What a lot on your plate at one time.  Take a deep breath.
   First, you are not alone:  LDO is an incredible resource, full of experienced, caring, and sane people.  Many have gone through variants of what you're experiencing.
   I am humbled by the dimensions of your inter-personal dilemmas.  As I was a non-directed donor, and have told very few about it, I'm not qualified to do much more than wish you the strength, wisdom, and patience to get through it all.
   But I do think that two weeks really may be slightly optimistic for returning to work.  I had what would be considered an excellent recovery, but was not ready to do any work even at home, till just after two weeks.  That said, I was back at work exactly three weeks after my surgery.  Still, you may tire easily, be slightly foggy, etc., even with the nice, uncomplicated recovery I wish for you.
   (In particular:  be very careful about lifting things [of at least 10 pounds, if not less] for some time--several weeks or even a couple of months--after surgery, and hope for smooth roads when driving. Bumps are not fun.)
    I was also sometimes dissatisfied with my center's lack of communication, and their disinterest in having me speak to a surgeon just before the operation.  But with my center, I think it had to do with them being very swamped--doing the work of six people with a staff of two.  But, still....
   Overall, it sounds as though your frustration is more than justified.  And yet, most of us on this list found our donations to be a high-point (if not the high-point) of our lives.  May you get through all these challenges with flying colors, and may you and your niece have successful surgeries and smooth recoveries.
  Meanwhile, use LDO as much as you can--it can be your secret weapon!
      Good luck, Snoopy

[Fr Pat]

Dear Jessie,
     I'm sorry to hear of your difficulties. I don't know if any of the following will be of help:
--- The kidney donors who have described their experiences here over the years have had a LOT of variation in their recovery times and their ability to get back to work. Some have bounced back quickly (including me). Others have needed weeks or even months before being able to handle their full-time jobs again. A small number have suffered surgical complications from the donation that required corrective surgery or a long recuperation, and some have had permanent complications. So no matter how much you need to get back to work in 2 weeks, there is NO way you can be SURE this will be possible. So whatever her failings might be, I think the transplant coordinator was wise to insist that you know this.
--- Even when we DO get back to work, many of us have had problems with lingering fatigue for weeks or months. This has sometimes included mental fuzziness and difficulty in concentration. So, getting back to work is one thing. Getting back to being able to work at full efficiency and mental reliability is a different matter, especially when it comes to dealing with figures. Note also that donors should not drive for about 2 weeks after the surgery, as the lingering effects of the anesthesia and drugs can dangerously slow down reaction time and alertness for a while.
--- Some donors have reported being able to get "partial disability compensation" during recovery, to cover some of the lost wages.
Some States offer a State income tax reduction for living donors. www.livingdonorassistance.org is a U.S. government agency that in some cases can offer financial help to living donors. www.healwithlovefoundation.org may be another possible source of help with lost wages.
--- While it is against the law to be paid for an organ for transplant, it IS legal to receive reimbursement for any and all expenses incurred due to the donation (lose wages, travel/lodging, out-of-pocket medications, etc.) The family of the recipient can (if they wish and are able) give the donor such cash compensation, and can do fund-raising legally for the same purpose. A while back there was a donor here who had turned down the recipient's offer to do this, but then later regretted her decision to decline help, when her recovery took longer than expected and her bills piled up.
--- With regard to preparation for the surgery, there is nothing special that I know of except to keep in good health. Smokers are asked (or required) to stop for a time before the surgery. Each hospital does have requirements regarding eating, drinking, laxatives, etc. the day before the surgery.
--- Some people may not be supportive because they do not really understand what is happening, or because they are afraid for you, or because they feel guilty that YOU are doing such a good thing while THEY won't even think about it. So the reactions are not always reasonable.
 
Please do continue to keep in touch here, as there are lots of folks here who have been down the same or similar roads and want to help.
best wishes,
   Fr. Pat

[audrey12]

Jessie, when I first talked to my social worker she told me that the donor's parents are almost always against the decision.  You are not alone - I donated to my cousin's husband, also unrelated to me.  They had been married for 20 years and my mom's reaction was, "But he's not even a relative."  When she realized I was just going to go through with it, she stopped trying to talk me out of it.

Your transplant coordinator sounds overworked.  Tell her that you absolutely want a consultation with your surgeon prior to the surgery.  Bring questions for the surgeon.  The surgeon really does like to hear intelligent questions about what to expect.  I also talked to the anesthesiologist prior to the surgery and he gave me a detailed description of what would happen to me physically once I was under.  You have a right to be demanding.

Does your employer (I realize it's your sister) not have sick pay or a short-term disability plan?  What if you got hit by a bus tomorrow?  Is she going to be complaining that you can't have surgery to repair your broken bones because she needs you to do payroll?  I think I'm hearing her way of trying to keep you from donating because your family is concerned about you.

And take your husband with you to all your consultations.  Get him involved and make sure he knows what's going to happen and how he will be expected to support you.  You will not be able to go back to work at two weeks -- give it four.  You will not be able to pick up your children or carry them for a few weeks either.  Line up friends to provide meals for a few days and take the kids off your hands.

You are doing a wonderful thing but you come first.  If it is going to be too stressful for you and your husband and kids, have the transplant center tell your SIL you had a positive crossmatch.  That's the "out", and you don't tell the recipient you decided against it.  You can change your mind up until they put you under.

Best wishes and please keep us posted.

[Mizchelle]

I totally agree with Karol... "As far as your family being reluctant to talk about their reluctance to have you donate, I think it's not uncommon. There's a lot of fear about the risks you're taking and it's tough to discuss."

After the surgery, people seem to do 180s with their less than supporting attitudes and words.