Dual Transplant - Kidney/Liver

[KaTrina Slaughter]

Learned that our transplant team is leaning towards doing a double transplant. I know I had read some things that many people were not certain of this transplant and where sure that the risk out weighed the benefits. Was just wondering if anyone knows of any successful double transplants or if there is any more literature that would support this??

[Linda Burke]

Hi KaTrina,
One of the doctors leading the work in this topic is Dr. Jeff Saland, of Mt. Sinai Hospital in New York. One of Dr. Saland's successful kidney/liver transplant patients is the adorable Nick Sheeder - you can contact his mother via her Member page on this website. The Sheeder family was very kind to us as we explored the feasibility of a kidney/liver transplant for our older son Hunter, and it was very helpful to us to chat with them by telephone. Hunter did not survive the kidney/liver transplant, but I believe there were 8 prior patients at Mt. Sinai who did survive. At the time of Hunter's transplant, there were few other hospitals in the world who had experience with multiple aHUS dual organ transplants. There currently is some talk about the potential of giving aHUS patients just a kidney transplant supported by Soliris to prevent recurrence of aHUS activity - in Joy Lewis' "Research Forum" you'll find a journal article about the adult aHUS kidney transplant case. You may want to check with either of these members in the event they have updated info that may prove helpful to you - I've found that the aHUS families here are very supportive and are happy to share information.

[Cheryl Biermann]

Hi KaTrina, Nice to meet you. I have always been led to believe that the double transplant is used as a last resort. Dr. Saland would be a great resource, but here are some questions for your doctors...Are we running out of options? Are the line access points all gone bad now? Is this a blood pressure problem? I'm sure your advisors know, removing the kidneys helps lower blood pressure in this instance.

In our case, we are hoping that one day, Soliris will be used for patients who have already lost their kidneys. Then, possibly, we can have a kidney transplant, and use Soliris to prevent reoccurance.

In addition, the University of Iowa has researchers working on Serums and other alternatives to Soliris. I believe there is good information on a woman from Germany who used this method. I haven't seen this but I saw Jessica and Collette Fryzs have followed her story. Obviously, new discoveries are being made and are expected to continue, the last few years there has been an explosion of new discoveries after years of questions...Good luck sorting through all this, our thoughts and prayers are with you.

[Jaime Sheeder]

Hi KaTrina,
I hope this finds you and your family well. My name is Jaime Sheeder, my son is Nickolas Sheeder. He was diagnosed with AHus at 10mo, 10/02. At the time I had a deceased cousin that suffered with this and a female adult that was had had a kidney transplant that failed and was relying on dailysis 3x a week. She has sinced passed due to complications of cancer. Ours is genetic and is Factor H, I am the carrier. When we discovered this Nick was 4 and plasmapheresing 3-5 times weekly. We were at a crossroads. At this time 2006 the new drug Soliris was out, so we were presented wtih two options. Continue down the road were on in thrid of four stages of end stage renal disease (near the end of plasmapheresis almost to dialysis) or liver/kidney transplant. Long story longer we began working with Mount Sinai. Headed there in July 06 for consult/workup etc. My husband and I thought long and hard about this decision. For us we knew this decision was the best way to go. We wanted Nick to have the quality of life he so deserved. Were we scared to death you bet but for us this was the best course of action. By August 24th we were living and waiting. On Sept. 8 we received our call and Nick was surgery on 9/9/06 at 3:12 AM and was done at 3:17 PM. The key to this surgery is to do plasmapheresis right before surgery and receiving FFP during the surgery. Nick did great and the only real complication had was fluid. It has now been three years, Nick is doing great. We experience one liver rejection in 2007 that was reversed via a blast of prednisone. Two weeks agao Nick had his native kidneys removed in an effort to remove all anti-hypertnsenive meds. We are here to help in any way we can. I by now means push this upon anyone. Everyone has to do what is best for thier case and situation. But we are hear to share our story and answer anything we can. Best of luck God Bless.

[KaTrina Slaughter]

Hi Jaime,
Thanks for sharing. Your story sounds almost very similar to Syd's. We did recently find out that I am the carrier. Lovely, :), but what can you do about it now.
Our doctor seems to think that Solaris isn't the answer for us. And I agree quality of life is so important. So much I want Syd to see the stars in the sky at night and not have to pay for it by being on dialysis all the next day.
We just had a drop in H&H and peritinitis, which brings home how much I wanna get off dialysis, but again at what cost??

So in the transplant did they do a partial liver and kidney at the same time? Syd's kidneys are completely gone.

Jaime Sheeder said:

Hi KaTrina,
I hope this finds you and your family well. My name is Jaime Sheeder, my son is Nickolas Sheeder. He was diagnosed with AHus at 10mo, 10/02. At the time I had a deceased cousin that suffered with this and a female adult that was had had a kidney transplant that failed and was relying on dailysis 3x a week. She has sinced passed due to complications of cancer. Ours is genetic and is Factor H, I am the carrier. When we discovered this Nick was 4 and plasmapheresing 3-5 times weekly. We were at a crossroads. At this time 2006 the new drug Soliris was out, so we were presented wtih two options. Continue down the road were on in thrid of four stages of end stage renal disease (near the end of plasmapheresis almost to dialysis) or liver/kidney transplant. Long story longer we began working with Mount Sinai. Headed there in July 06 for consult/workup etc. My husband and I thought long and hard about this decision. For us we knew this decision was the best way to go. We wanted Nick to have the quality of life he so deserved. Were we scared to death you bet but for us this was the best course of action. By August 24th we were living and waiting. On Sept. 8 we received our call and Nick was surgery on 9/9/06 at 3:12 AM and was done at 3:17 PM. The key to this surgery is to do plasmapheresis right before surgery and receiving FFP during the surgery. Nick did great and the only real complication had was fluid. It has now been three years, Nick is doing great. We experience one liver rejection in 2007 that was reversed via a blast of prednisone. Two weeks agao Nick had his native kidneys removed in an effort to remove all anti-hypertnsenive meds. We are here to help in any way we can. I by now means push this upon anyone. Everyone has to do what is best for thier case and situation. But we are hear to share our story and answer anything we can. Best of luck God Bless.

[Cheryl Biermann]

At this stage, i think you owe it to your child to access all of the options. The researchers and MDs at Iowa University are very accessible, so i think it is in line for you to Demand that your Physician call them (of course, do it nicely).

I think you have quite a few more options that you did jsut 6 months ago !

Hang in there...Peritonitis is tough, one once you get thru it, you can carefully choose.

Keep us posted

[Heather Still]

I agree with Cheryl. The kidney and liver transplant is an option, but a very risky one so you should do your research. Dr. Smith and Dr. Brophy at the U of Iowa are both on this website and would probably answer some of your questions if asked. I'm pretty sure that there has been only around 15 dual transplants in aHUS and some outcomes have been fatal. I just ask that you research this well before deciding. Best wishes and please keep us posted on your decision.

[KaTrina Slaughter]

All thank you for all your advice. I will definitely research research research and have already asked tons of questions. Our doctor is in contact with Dr. Smith, so I am sure when the times comes we will be presented with all available options. There are just days that I really hate this disease that has robbed us of the joy that Sydney was and of all the things that it has since taken from her. Off to drown myself in chocolate and find that happy place that every now and then seems to elude me. Of course kisses from Syd and hearing her laugh always remind me why I get up in the morning.

[Jessica Olivia Frysz]

KaTrina,
the risks do outweigh the benefits. In my case, it would be very risky, because I have had so many catheters placed for dialysis in my chest area that it has caused blockage. It's a very good idea to do your homework, as the questions that you need to ask towards your transplant team, they will lean you towards the information you may need. Also, the medical library at your local hospital might have some information. There are not many successful liver/kidney transplants for aHUS, because it has shown risk, they have to take the whole liver and transplant a whole new liver, which also has a major risk, especially in my case as I have mentioned before. It does however, depend on the patient and which mutation they have.

[Stacey]

Reading these messages really worries me. My sons doctors have advised us the best way forward for him is to have the combined kidney/liver transplant. He is ahus with the factor H mutation. We are supposed to be going for transplant assessment soon and i am now becoming really anxious and having second thoughts as to what to do for the best for my son. It would be nice to hear more of your story Jaime Sheeder.

[KaTrina Slaughter]

Stacey. Believe me I understand. We can't find a transplant team willing to take the risk. Where are you at?
At the same time, I am not sure I want an answer either. Would be nice to be off of dialysis and have a "night" life and be able to make it to 8:00 am soccer games. But the risk is so scary. Please keep me posted.

Stacey said:

Reading these messages really worries me. My sons doctors have advised us the best way forward for him is to have the combined kidney/liver transplant. He is ahus with the factor H mutation. We are supposed to be going for transplant assessment soon and i am now becoming really anxious and having second thoughts as to what to do for the best for my son. It would be nice to hear more of your story Jaime Sheeder.

[maria vicenta carratala rios]

hi Katrina.

I am spanish mum, the last year nephrologist suggest me the due trasplant to my son, but my husband and me contact with Jeffrey Saland because we meet him in a italian conference who had publish the last year. My son has 4 mutations in factor h and he lost the kidneys his blood preasure had been high during three years, now he is fine, in hemodyalisis and all case is different because my son never have had complications, and you have to think and ask if is so necesaary or wait another therapie.like Soliris. Here in Spain there is a few cases like my son and we are waiting the decision to the nephrologist with this drug. GOOD LUCK¡¡¡¡¡¡I

[Stacey]

KaTrina, we live in the UK. No mention of Soliris over here. I have just been told that they way forward for my son is to have a combined kidney/liver transplant for the best quality of life in the future. The national liver centre in the UK have accepted him to do the procedure. I have arranged a telephone consultaion with Riley's consultant to discuss the things i have been told on this website. I am going to look into all options for my son but it seems the doctors here are pointing us towards the dual organ transplant.

KaTrina Slaughter said:

Stacey. Believe me I understand. We can't find a transplant team willing to take the risk. Where are you at?
At the same time, I am not sure I want an answer either. Would be nice to be off of dialysis and have a "night" life and be able to make it to 8:00 am soccer games. But the risk is so scary. Please keep me posted.

Stacey said:

Reading these messages really worries me. My sons doctors have advised us the best way forward for him is to have the combined kidney/liver transplant. He is ahus with the factor H mutation. We are supposed to be going for transplant assessment soon and i am now becoming really anxious and having second thoughts as to what to do for the best for my son. It would be nice to hear more of your story Jaime Sheeder.