Can I switch hospitals for the transplant?

[bkladane]

Hi everyone~

I need advice. The backstory: My doctor at SUNY Downstate told me the results of my CT Angiogram today. He says that I am very rare (I took that to mean that I am a mutant), but instead of one renal vein/one renal artery per kidney, I have two of each (so four veins/arteries, two to the vena cava and two to the aorta). He says this happens in about 20-25% of people and he has seen and done successful transplants with this condition. Since my right kidney is the bigger one and has shorter veins they would leave me with this one and take the left. Another thing that makes my case more complex is that one of the renal veins on the left side travels behind the aorta to the vena cava--he said this is extremely rare (1%). He said surgery is not impossible but is more complex.

This scares me because it is riskier now. Downstate didn't do transplants for 2 years and while I trust this particular doctor because he has extensive experience, he said he was uncomfortable doing the surgery without a few simple transplants conducted by the team. The team is new here and he doesn't want to start them off with a complex case. There are three transplants going to be done soon at the hospital, but I don't want to be the first complex case done by this team, I want to have people (besides the doctor) who have done countless transplants under the belt.

Has anyone ever switched hospitals? Is that even possible? I'm wondering if my family should check out New York Presbyterian. I don't really know what to do here.

[llinton98]

Hi,

Remember, it's your body, you are the consumer. My sister and I had surgery at Columbia Presbyterian on January 15, 2010 and we are doing very well. I highly recommend this hospital.  Columbia Presbyterian performs roughly 2 renal transplants per week.

Dr. Lloyd Ratner, who was my sister's surgeon, is one of the pioneers of the laproscopic kidney transplant. Dr. Ratner is very well respected and every year trains physicians from other countries. If you are thinking about switching I would say to make an appointment with the transplant team and hear what they have to say. They will assist you with the switch if you decide to go forward with them. As you go through the process get copies of your records, bloodwork, etc. BTW, I had an extra renal artery too.

Just curious, do you know your donor or is this an altruistic donation?

Best of luck to you going forward.

Laura

http://www.columbiakidneytransplant.org/     

[lawphi]

My husband's first cadaver transplant was just like yours.  It clotted the next day.  It was a child's kidney, which drastically increases the odds of clotting.  Adult kidneys with double arteries/veins have a far better survival rate. 

I would speak with Columbia to see if they have experience with double artery/vein living donor operations.  I am sure they do. 

If you are donating to a stranger, your recipient will be glad to pay for your expenses to donate at an experienced center. 

[sherri]

Treat this as you would any other surgery. Nothing wrong with getting a second opinion. If you were receiving a kidney and were a difficult case, you would go for a second opinion. You are not only a donor, but a patient who will be undergoing real anasthesia with possible potential complications. Downstates program was closed because in October 2008, a living donor named Michael King donated to his wife. Post operatively he developed complications and bled to death. The cause of the bleed was linked to a clip called the Hemo clip that had been recalled at least 2 years prior. The surgeon claimed he was not aware of the recall. Complications can happen at any hospital but you do want to do due diligence and make sure you are comfortable with your team.

This is elective surgery so you can take the time to do the research. You did not mention who you are donating to but you need to advocate for yourself and make sure you are well informed of all the risks prior to surgery. You can change hospitals, change surgeons, get another opinion, choose to delay or cancel the surgery. You are free to do anything you feel comfortable with. Make sure you have people around you who advocate for your needs.

Best of luck and keep us posted.

Sherri

[Scott337]

Sounds like your surgeon has doubts and I'm guessing he would be more than open to suggesting an alternative if he hasn't already.  That's the kind of surgeon/physician you like to have - one who is realistic about the capacity/ability of his team.  Great advice by others on your post.  Good luck!

Scott

[bkladane]

Thanks for your responses, everyone! It really helps. I am going to get in contact with someone at Presbyterian, it seems like the way to go is to definitely speak to another doctor(s).

I am not an altruistic donor--I am donating to my younger brother, who has FSGS and is currently on dialysis. I just wonder about how the switch for him will be, will he have to change his nephrologist, too? I guess these are questions I can bring up when I go for the second opinion.

[Fr Pat]

     I'm not a medical professional, but from what I have read here and there I would also suggest that in discussing your surgery, wherever it takes place, you ask whether the open-cut method rather than the laporoscopic method might be safer for you? If there are special challenges in cutting-sealing-reconnecting blood vessels it would seem to me to be safer with the surgeons able to see and directly reach everything manually rather than doing it by remote instruments and a TV screen. Again, that is just my non-professional point of view.
   best wishes,
      Fr. Pat

[tom carr]

Hello,

I donated (non-directed) last October 21st. The surgery was at NYU Medical Center. When they started my surgery they found that I had an unusually large number of veins. What should have been a 2-3 hr procedure took almost 6 hours by the time they tied off all of the veins. But, they did a good job...no complaints.
My surgeon was Dr. Fahmy....he was very good and I highly recommend him.

Best of luck.

Tom

[sherri]

bkladane,

My brother was originally at Mt. Sinai and he decided to switch to Hopkins. I happen to live in Baltimore so it was easier for me. He had a connection with a financial donor to Hopkins and was able to get VIP treatment which was the impetus for the switch. Hopkins recommended a nephrologist at Columbia, who he likes very much. They share information. My brother comes to Hopkins once a year to see his nephrologist here because he really does like him and values his input. Insurance wise this was not an issue and this was out of state. So to switch hospitals for your brother in the same city will most likely not be an issue. He can certainly go back to his nephrologist at Downstate or anywhere else. records can be shared easily. Recipients, as the "sick" patient will always be able to find a physician to take over their care. Donors have a little more difficulty as they are not the "sick" patient. S8ince your surgry sounds like it will need more experienced surgeons go where you are comfortable and will get the care you need.

Best of luck,

Sherri

[lawphi]

We switched to JH when our regional center didn't offer plasmapheresis. We were able to send in our old ct scans, x-rays and medical records. It took two weeks for new lab work and a few weeks for our appointment to be cleared.

You will need to be proactive in requesting the records. Your brother can keep the same nephrologist for his dialysis and post transplant care once he is released.