Donation update

[Mooge]

Hi all,

Just wanted to update you about my donation, which has gone into higher gear.
After passing the 24 hour BP test, we finally got the Ministry of Health authorization to go ahead with the transplant! Today, along with  R, the (non-directed) recipient, spent most of the day at the hospital, where they took about 500 vials of blood and other bodily fluids. I did a CT angio, and then we met with the head of the vascular surgery department. He called up the CT on his screen and spent a loooong time looking at it. Then he turned the screen around to show us, and explained that my left kidney has - not one, not two, not even three, but rather FOUR renal arteries! Which is fine for me, apparently, but disqualifies it for donating. (I think the surgeon was impressed...

What this means, unfortunately, is that they will remove my right kidney - and that the procedure will have to be open and not laparascopic. This was unexpected, but apparently unavoidable, so I'm adjusting. Now we just have to get the results back from today's crossmatch, and then they will decide on a date. If all goes well - might be as early as Oct. 22, or a week later. If more extensive pre-surgery treatment is needed for R, then it might be put off a bit longer. Still - things are moving much more quickly now, and it's starting to seem real!

Mooge

[sherri]

Mooge,

Wow, that must have been very unexpected news. Gives you more to think about before deciding upon surgery. Here in the US there are  centers where the surgeons are proficient at doing laparascopic nephrectomies on the left or the right. I imagine since there aren't as many transplant hospitals in Israel your options may be limited. I am assuming the surgery is a Beilinson? Are there other hospitals where there is a surgeon who is comfortable with laparascopic? Very often the whole plus about becoming a donor is the fact that the donor can have minimally invasive surgery. That certainly is how it is presented to encourage non related donors. Now that has changed, would you reconsider and see if another donor is available?

The road to transplant has many convoluted turns. Hope everything works out for the best for you and your recipient. Keep us posted on how things progress.

Sherri

[Fr Pat]

Dear Mooge,
     For what it's worth: from what I have read so far, the "open" surgery has a slightly lower rate of complications than the laparoscopic surgery, although of course more data is always being assembled. I had the open surgery 12 years ago (in U.S.) and it went fine. I left the hospital in 3 days needing just tylenol for pain and recovery went well. Each patient is different of course but I don't think you need be excessively concerned about the switch to open surgery.
     Please continue to keep us informed.
      best wishes,
               Fr. Pat

[Mooge]

Well. This has turned into an interesting - and influential - thread, as far as I am concerned.

I was quite surprised when the surgeon told me about the change in plans from laparoscopy to open surgery, and didn't have time to think it through completely in his office. When I thought about it afterwards, I was  more or less in line with Fr. Pat's thoughts - not that big of a deal. Still - Sherri's comments gave me pause, although I am committed to the surgery and to the recipient, and our national health system here does not permit us to "shop around" at different hospitals. So I wrote to the surgeon and asked him if his decision re: open nephrectomy was specific to my anatomy, based on the CT, or just an automatic one based on disqualifying the left kidney.

He wrote back that he returned to the CT for another look, and decided that since my right renal vein is longer than usual -- laparoscopic surgery IS a possibility, and the risk to the recipient (I guess the difficulty in re-attaching the kidney) would be "reduced". So as far as he's concerned, I can choose between a laparoscopic and an open procedure.

Wow. If there is anything I hate, it's when a doctor tells me "you can choose"! I don't feel I really have the qualifications to do so, and I am inclined to throw the decision back to him. Obviously as far as I am concerned, I would prefer the less invasive procedure, but NOT at the cost of significantly reducing the risk of a successful surgery.

Any advice out there?

Mooge

[elephant]

Dear Mooge,

You are indeed faced with a decision.  I understand what you mean about not being qualified or prepared to make that choice.  I would ask about the possibility of a consult with a second surgeon.  Then you can consider the consensus of their opions. 

Love, elephant

[audrey12]

I would ask the surgeon how many of each procedure he has done, his success rate, did the patients have complications, how many of each procedure that hospital has done, etc.

I asked all those questions anyway.  I always do for any surgical procedures for me and my family.  Some surgeons get a little huffy, but I find most are happy to have a well-informed patient.

Best wishes!

[Fr Pat]

     You might also ask the doctor which form of surgery he would choose as the safest if he himself, or his wife, son or daughter were to be the donor.
   Fr. Pat

[WilliamLFreeman]

Moog,
   I like your humor, even in this situation!     (I am sure they drew no more than 491 vials of blood.    )
   I suggest combining most suggestions into one & streamline them a bit, as follows.  First though, are three questions for you to answer.  A] Is the "head of the vascular surgery department" the surgeon who will do YOUR surgery?  (The suggestions that follow apply to the surgeon who will do YOUR surgery.)  B]  How concerned are you about the appearance of scar you will end up with?  For  instance, if you want to end up with a "bikini scar" -- i.e., a scar just above your pubic bone, covered by a moderate bikini -- and that is important, then you would prefer a laparoscopic nephrectomy.  If, on the other hand, hiding the scar is not important, the open nephrectomy would still be a good option.  C]  How important is it that you leave the hospital and recover at home more quickly, and/or the you have less pain and for a shorter period of time?  If not of high importance, then open nephrectomy is a viable option.  (Don't forget, though, that some people who have laparoscopic nephrectomy have a more difficult time recovering than the average living kidney donor -- and longer than the average open nephrectomy.)
   Once you have your own values clear, then ask YOUR surgeon the following.  1]  How many laparoscopic LEFT nephrectomies has she/he done, then how many RIGHT laparoscopic nephrectomies has she/he done, then how many RIGHT nephrectomies that she/he had done had complications.  2]  Ask her/him what the average length of stay was for *her/his* right nephrectomies, and the scar that results.  3]  Then, ask what would he recommend for her/his spouse or sister, for whom she/he wanted to insure the most safety possible and for whom scar and length of stay or recovery was less important than safety.  (Thank you, Fr. Pat.)
   I did not include "surgeon shopping" in my list of suggestions, because I assume the recipient also would have to change surgeons and likely hospital as well.  I did not suggest getting a second opinion, because the issue is not "which procedure is best" but rather "which procedure does YOUR surgeon have sufficient training and experience."
   Many people are or would be squeamish or reluctant to ask the questions I suggest.  Feel free to explain that the international LDO discussion group suggested them, including a physician living kidney donor.  I.E., blame us! 
   Do not worry about the vascular surgeon asking you to make the decision about which procedure you want.  He would not give you that choice if he thought one was appreciably less safe than the other for you.   
   Please keep us informed.
   Bill

[Mooge]

Hi all,

Wanted to update about my donation status.
After much thinking and listening - including to all the good advice posted here - I decided that I did NOT want to make the decision about the method of surgery. Instead I told the surgeon what my priorities were (primarily success of the transplant, don't care about the scar, obviously would be happy to have less pain rather than more...  ) and asked him to decide. He said that he believes that in this case, the open procedure is more appropriate - and so that is probably what we will do. I am okay with that, despite the additional discomfort and longer recovery time, since it is important, at this stage, for me to feel that I have done absolutely everything in my power to make this work - including following the advice of the surgeon. He is the head guy at the transplant center and has an excellent reputation and references, so I am comfortable following his lead.

So - I am looking for advice from other people who have had open procedures. Like: how on earth do you sleep afterwards? I know people have recommended for laparoscopic surgery that you take a small pillow to press against your stomach. Any parallel ideas for the open procedure?

Thanks in advance!

Mooge

[Fr Pat]

Dear Mooge,
      Hi again. I had the open donation surgery, LEFT side, about 12 years ago: a big 8-10 inch cut around the flank. I THINK that now they may have developed more than one variation on the "open" method. In the hospital I had a few bad pain moments, but mostly the intravenous pain-killer ("dope-on-a-rope") self administered by pushing a button did the job and I slept a lot. On leaving the hospital after 3 days I was just on Tylenol, with some prescription pain-killers in case I needed them (I didn't). I could sleep on my back or on my right side pretty well. Pain was sporadic (but sharp when it came) and could be caused by coughing, laughter, or sudden moves. I did not use a pressure pillow, but I did find that just tying a wide cotton scarf snuggly around my waist seemed to help. I followed my surgeon's suggestions to regularly bend to left and right as far as I could until pain/discomfort started, hold that position a few seconds and then straighten up. This seemed to help the healing to take place without the scar tissue binding too tightly. The appearance of the scar has diminished gradually over the years but is still visible. I started running during the year after surgery and eventually got up to Marathon distance, and now still do half-Marathons at age 67.
     Some donors have mentioned using the services of licensed massage therapists or trainers who have experience/training in helping post-op patients in their healing.
     Keep posting any questions you have, and keep us informed please. I myself think that you did wisely in clearly expressing your priorities and then letting the surgeon choose the method that he/she thinks would best accomplish them.
     (Just to note also that the suspicion has been expressed here and there that once a hospital has invested a lot on money in buying the laparoscopic operating equipment the administrators MIGHT tend to pressure doctors into opting to use the lap equipment to make sure the hospital gets its money's worth. I have no idea if this is true, but there are financial concerns involved in buying and using the expensive lap equipment.)
  best wishes,
   Fr. Pat

[sherri]

Mooge,

Sounds like you are ready to continue on in the journey. Wishing you and your recipient uneventful surgeries and recoveries.

Thought you might like to see this article if you haven't already on Times of Israel. This non related donor is also donating her right kidney (at Rambam Hospital in Haifa) according to the article. Not sure if it is accurate. Funny though, under her picture it says "this is her first kidney donation" as if there is a second?? Didn't quite get that. But in any case thought you might enjoy it.

http://blogs.timesofisrael.com/youre-donating-what/?utm_source=The+Times+of+Israel+Daily+Edition&utm_campaign=9a79f2ff18-2013_10_21&utm_medium=email&utm_term=0_adb46cec92-9a79f2ff18-54458969


Sherri