Am I being unreasonable?

[mkew]

I got the news today that due to my normal cystoscopy, I am cleared as a donor! It is exciting and scary!

I'm trying to be as informed as possible. I think I'm in very good shape to donate. I'm a 49yo woman with no bad health history whatsoever. No surgeries, no serious illnesses, no injuries except a little sciatica. I've had three unmedicated home births. I do yoga a couple times a week. I'm very slim and my blood pressure is on the low side. I have a low-stress job that I do from home. I have a solid marriage and family. I'm in such good shape that I feel I have health to spare--which is why I want to donate a kidney to an old friend who has PKD. We're not a match so it will be a paired donation.

I live in Texas and the transplant is through UCLA, because that is where my friend lives. I spent several days in LA in November for testing. I had a scheduled visit with the main surgeon, but he never showed up at the visit so I visited with his fellow, Young Dr. Blumberg. He was very informative and helpful.

However, I still want to speak with the surgeon before the surgery. Not the hour before the surgery, but like now, to ask questions about how they protect the adrenals, the impact of my retroartic blood vessels, and other surgery-related questions. To be honest, I also want to make a personal contact with the doctor so that he has my personality in mind--I think humanizing surgery is important! In addition, I would like to speak with the anesthesiologist who will be working on me, prior to the surgery, as I have some questions about that.

The transplant coordinator told me that I already had my surgical consult and that I can't expect to speak with the surgeon even though I only spoke with the fellow. She said I can send her my questions in an email and she will get answers to them. I pressed her and said I would like to speak on the phone with the surgeon and she said she would "see." She also said I would speak with AN anesthesiologist prior to surgery, but not necessarily THE anesthesiologist.

How hard should I press for what I want? Am I being unreasonable and demanding? It seems to me that frankly, they should really give me whatever I want, with in reason...... and I think that 15 minutes of a doctor's time on the phone is within reason.

Any thoughts on this?

[Fr Pat]

Dear "mkew",
     When I donated 11 years ago I pretty much just trusted the doctors/hospital and did not feel the need for further consultations, and everything went fine. Having read more over the years since then about possible complications I would probably be more questioning if I had to do it again. So I myself would not offer you any opinion about what might be "unreasonable". Perhaps you might see how much clalification you can get via the e-mailed questions, and then in the light of that see how much you want/need a personal conversation?
     Regarding the anesthesiologist, I don't really know how far in advance the hospital can schedule a particular one and guarantee that THAT one will do it. Emergencies can come up and require a hospital to re-schedule operating room schedules with little advance notice. Particular doctors can themselves get sick or have family emergencies and have to drop out. So one of the practical questions you might have to think about is whether you would insist that the hospital cancel your scheduled donation surgery if the pre-scheduled surgeon or anesthesiologist were not available.
     I myself tend to be more trusting of doctors/hospitals, so I tend to make fewer demands and ask fewer questions, but that's just my own way.
    best wishes,
        Fr. Pat

[sherri]

mkew,

Are you being unreasonable?  I guess every patient has to ask themselves that when they choose a doctor or hospital especially for a surgery that is an elective procedure. While all the testing is there to ensure that you are healthy enough to donate, it is also an opportunity for you to interview the hospital and see how will they respond if there is a complication. I don't think it is unreasonable for a surgeon to take 15 minutes out of their busy day to pick up the phone and introduce him or herself. I had a transplant coordinator who also coordinated in a similar fashion. It seemed like it was her mission to answer my questions by having me ask her, she asked the doctor and then got back to me. Then I had to say, no that wasn't what I asked and the routine repeated. Have you been assigned an independent living donor advocate? This is someone who is supposed to advocate for the donor independent of the team and it is not the transplant nurse coordinator. You may want to find out who your independent advocate is and contact them. This is from the OPTN website (http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf)


Independent Donor Advocates.
Reserved.
The living kidney donor recovery hospital must provide an independent donor advocate
(IDA) who is not involved with the potential recipient evaluation and is independent of the
decision to transplant the potential recipient. 12-9
December 13, 2012
12.4.1 The IDA must assist the potential  living kidney  donor with the evaluation
process and focus on their needs and questions. The IDA must be
knowledgeable about risks and benefits associated with all phases of the
donation process. IDA responsibilities include, but are not limited to the
following:
• Promote the best interests of the potential living donor
• Advocate for the rights of the potential donor
• Assist the potential donor in obtaining and understanding information
regarding the:
i. Consent process;
ii. Evaluation process;
iii. Surgical procedure;
iv. Medical and psychosocial risks;
v. Benefit and need for follow-up.




Just make sure before you embark on this journey that you feel comfortable with your team and trust them. It doesn't mean everything will be perfect but you will know if it feels right.

What ever happened with the hematuria? Did you get a satisfactory explanation as to why this has been present in all your samples.

Also you mentioned that you were traveling for the surgery. Have you looked into the possibility of you donating at a center near you and having your recipient travel if they are well enough? My recipient traveled to a hospital in my home town, went home three weeks later and was referred to a nephrologist at home. It worked well for us. Insurance/MC paid for the surgeries with no glitches.

Good luck with your plans and hope everything works out for the best.

Sherri

[jstx]

I do not think you are being unreasonable. On top of asking the questions you mention for your surgeon, I also wanted a personal connection with mine. The rest of the transplant team was a bit odd so I wondered how he would be. As it turned out, I loved my surgeon! I think he's wonderful. I also wanted to ask him about his personal rates with this surgery? How many complications, how many donors had to go to open surgery, how many died, etc. I wanted HIS rates for these, not the rates in general. I think you need to pursue it.

As for the anesthesiologist, I don't think you'll have any way to talk with yours this early on for all the reasons previously mentioned. I felt I had adequate time the morning of surgery to talk to my anesthesiologist. If you're concerned about specific things there, the surgeon (when you finally get to talk to him) may be able to answer. Write your questions down so you don't forget them. Surgery day is hectic & emotional. If your questions are written down, you'll be sure to get the answers needed from anesthesia when you meet them.

Good luck! Remember you are your own best advocate!!

[Jewels]

Dear Mkew -
Not unreasonable at all, in my opinion.  I live in Seattle and donated in Detroit so did all my testing locally.  I was not going to be able to meet the transplant team until 5 days before surgery.  I asked to speak to the surgeon on the phone and they scheduled a phone appointment.  It was great, we immediately clicked on the phone, she called me back with some follow-up information.  It took a huge weight off my shoulders and gave me trust and confidence which was so important given I was pretty nervous.

BUT - all that said, you have to be prepared for change.  2 days before my surgery the surgeon called me to inform me that she fell and broke her arm!  She let me know who her replacement was, and he happened to be Director of the Transplant program, so as unhappy as I was, I looked at it like a promotion in a way.  My sister (recipient had met with the new surgeon and liked him a lot so that helped.)  I didn't get a chance to meet him until a couple hours before surgery, but I quizzed him on some of the things I talked to the original doc about and he was up to speed.

Good luck, you are doing an amazing job being your own advocate.  Like Sherri said, you also have advocate resources.

Take good care -
Julie

[Donna Luebke]

You are not being unreasonable.  You need to ask who will be the Attending surgeon of record for your donor surgery.  Agree that this is the person you need to meet with because you have the right to decline and ask for another surgeon if you do not like this person.  Let the coordinator know that meeting one of the underlings assigned to the Attending is not sufficient. They are trainees.  A fellow is not the Attending of record and does not count as the 'consultant.'  On the day you saw the transplant fellow, someone signed off your record and billed your recipient's insurance for this visit.  Find out who and find out why this Attending did not come into the room and introduce him or herself. Why has your planned Attending not met with you??? Only the person doing the procedure can get your informed consent.  Consent is not a piece of paper you sign.  Consent is both for the procedure and for that particular surgeon.  Consent also includes the long note in your medical record stating what you were told and you agree to proceed.  Get a copy of this note.  Get copies of all your records, test results, and any consents you signed. 

You are traveling a long way to be treated like a shipped organ.  You (and any live donor) should be treated better.  Time the Attending of record step up and stop sending fellows and residents to do his/her job.  Should at least know your name and what you look like.  Your consent is to that Attending who also drops the bill for the procedure. 

[sloaner1982]

I hope I am not out of line by saying this. I am not very happy with the treatment and care you have been given so far and you have not even donated yet. I hope you will seriously think about this. If this is how you are treated before they get your organ, what can you expect AFTER they get it? Complications are not only physical. Many donors suffer mental health problems after donation with feelings of depression, anxiety, feelings of being decieved and used. Some suffer PTSD as well. You will really want to consider how you will take it if you feel discarded after donation because you are no longer needed. Remember that centers have poor followup with living donors and that may also happen to you. Also, are you okay with paired exchange? Were you and your potential recipient a different blood type? Is that why you did not match? Best wishes for making the decision that is right for you.

[Jewels]

Another note, for when you do hopefully get to talk to your surgeon...be sure to ask who will actually be the one to do the procedure.  I don't think this would have been mentioned if I didn't ask.  She told me that there would be a fellow (I think, someone not as experienced) and I told her that did not work for me, that I wanted her to do the procedure.  She assured me that would be the case.  When I met the new surgeon (because she broke her arm) that was the first thing I talked to him about.  Apparently the attending surgeon isn't always the one to actually do the procedure, so be sure to ask!

Good luck on your journey...
Julie

[jatopa]

I donated at UCLA in December 2011.  I was extremely impressed with the skill of the surgeons, the anesthesiologist, the nursing staff giving care before and after surgery, and my coordinator.  
There were probably 100 or so emails that passed between my and my coordinator.  They can handle 99% of the questions.  There are very few questions that the coordinators have not heard.  I went through the informed consent with the psychiatrist and again with the surgical fellow.  The surgeon came into the room briefly to say hello, shake hands,  and answer any remaining questions.  He said, "this is a really good thing you are doing."   I woke up from surgery in excellent condition, with none of the complaints that one sees so frequently on this board.  No nausea, no vomiting, no bloating, no constipation, no sore throat.   I was up and walking the hallway the morning after surgery and sent out to the UCLA hotel nearby in the afternoon for blissful uninterrupted sleep.  I took tylenol after surgery.  Recovery was much quicker than I had anticipated.  I was 61 at the time of surgery, so not exactly a youngster.
It is not unreasonable for you to request a short phone call from the surgeon and they should be able to set up a phone appointment for you.  I think the real issue, and I felt the same way, is that you want to see and talk to the surgeon in person before going into surgery.  In your case, you are willing to settle for a phone call.  It's a human thing to want to make contact before the big day.
Another thing that helped me was watching the UCLA youtube video on transplant because it featured both my surgeon and my brother's surgeon, so I felt a little more connected after watching.  
Reach out to your coordinator again and let her know how important a five minute phone call would be and that you are anxious to make that happen.
In terms of the quality of the institution, it is very highly rated, and I know you will be in good hands and get excellent care.

[CK]

My surgeon was extremely responsive and approachable. If I called him today ( a year later), he would call me back. He met with me a few times to answer any questions, and afterward, as I was recovering, he came in my room and said, "I don't tell people this until AFTER they donate so it doesn't sway their decision, but you saved his life. There is a big mortality rate on dialysis that you just reduced to 3%." I cried. It meant so much more to me than all the "hero" talk they had thrown around before I donated.

You should feel like they have YOUR interests at heart and appreciate the gift you are giving, IMO.

[SWB]

I am a bit shocked at the response you received regarding wanting to speak to the Surgeon.  I don't think you are being unreasonable at all.  As already mentioned that should raise concerns with the Transplant Coordinator assigned to you.  I would definitely reach out ot the independent advocate and also consider contacting the facility with your concerns.  This may be more of a situation with the transplant coordinator assigned to you versus issues with the facility.  A good transplant coordinator can be the difference in receiving solid follow ups and timely information versus feeling completely overwhelmed and/or having your questions ignored and/or dismissed.

I would strongly consider asking for another assignment if you are finding the interactions with him or her to be a challenge.

-Scott

[mkew]

Hey there, I really appreciate the input and encouragement and validation! I have been switched over to a different coordinator because it turns out I will be part of a chain of NINE PEOPLE receiving transplants all over the country. The new coordinator deals with these chains. When I told her I wanted to speak with the doctor, she immediately said "I'm sure we an arrange that." She said I could also speak with the nephrologist if I want to. So, I'm gathering my questions so we can have a good conversation. I feel much better.

And HOW ABOUT THAT, nine people. I'm really excited about that. My kidney's recipient is apparently highly sensitized and hard to match, so it's really something special that I can help my friend, and this hard-to-match stranger, AND the other seven people involved!

Yesterday a friend posted on her facebook wall: "When is the last time you've done something for someone else---a completely selfless act which solely benefits another?" I wanted to say that some would say I'm in the process of that now, but it's not entirely selfless. I'm getting an awful lot of pride and satisfaction and happiness from this process, despite my abject fear, which I am continually talking myself down from. I have to say, it's certainly benefitting me, and my family and friends. Quite a process.

[SWB]

I understand.  Read my earlier posts after I donated.  I feel I benefited more than my donor in so many ways.  Now I want to give back to others more and help in larger ways.  Just visited a kidney transplant patient today who got his kidney from his sister.  My way of giving thanks and paying it forward...

[Fr Pat]

     I entirely agree. I didn't gain anything materially from donating a kidney, but I feel that the spiritual/psychological benefits I ended up getting from the process were and are extraordinary.
      Fr. Pat