Transplant Considerations: Things to think about when choosing a transplant center

[Joy Lewis O'Brien]

Hi all,
I know several of you have transplants on the mind or on your child's horizon. Here are some things to think about when choosing where to have the transplant done... I'll follow this up with information about different sites and try to collect the data on different transplant centers so you can look them through in one place.

Any first hand experience is very welcome!

(Information found on many different transplantation websites.)

• How far is the center from your home?
• Does your insurance carrier cover this center?
• How many transplants does the center do each year?
• What types of transplants are performed? (Kidney? Liver/Kidney?)
  
• Does the center specialize in treating aHUS?
•               Does the center offer standard therapy (plasmapheresis)?
•               Does the center offer research protocols (i.e. Soliris)?
• Do the physicians and staff have experience in pediatric transplants?
• How many physicians at the center perform this procedure?
• What are the survival rates for transplant patients?
• What is the average length of stay after the transplant?
• Does the center prepare families for follow up care at home?
• Are support services available on site (counseling, support groups)?
• Are clinical nutrition services provided?
• Can you get an estimate of the cost of the treatment?
• Are you given information on what is required financially to begin treatment?
• Is school for children provided?
• Are visiting hours liberal?
• Are facilities available for visiting family members and close friends?

I will continue to update this with information about various centers as I research them--again, your input will be very valuable here!

A great source for transplant information can be found here. That will be up to date no matter when you click on the link whereas my information may get out of date depending when you read this.

[Kamal D Shah]

Thanks so much Cheryl. I have just accepted your friend request. Please send the information you have. Thanks again!

Kamal

Cheryl Biermann said:

We have just had a conversation looking into transplant with Soliris. The protocol U.of Iowa is recommending sound very reasonable. If you would like to okay my friend requestion I can mail you this info. via the send a message option here. I am currently at Nathan's hospital right now and wouldn't want to go from memory what the recomendations were. When I get home I'll get the info. together and get it to you.

Kamal D Shah said:

Is there anyone on this site that has undergone a transplant?

If so, I would really like to know if plasmapheresis was used, and what immunosuppression was used. I don't think there is anyone here that has undergone a transplant and has taken Soliris. Is there?

My nephrologist feels we should try a transplant and have prophylactic plasmapheresis and then plasmapheresis during and after the transplant surgery.

Thanks
Kamal

[Deborah Deffenbaugh]

Hi Cheryl--I would love to see the Iowa protocal as well. Alyssa has been approved for the transplant with Soliris but by the time our donor was also approved the Soliris approval had only one month left. So now we are awaiting reapproval. I am not overly anxious to push things along at this point because I have not been too impressed with the consistency between docs as to what the protocal should be with Soliris. First we were told she would need pherisis again prior to transplant and that we would give her the Solirs 1-2 weeks in advance and then we were told no the pherisis might increase the risk of bleeding during surgery so it wasn't advised and the Soliris would be administered the same day as the transplant. They also didn't seem to know about keeping her in isolation or propholactic use of antibiotics when I quesitoned them. I worry about shutting down her complement system's ability to fight bacterial infection when she alreadyhas a suppressed immune system due to the transplant and immunosuppresent drugs. So any information would be appreciated as I feel I need to do my homework in this area before moving forward. We may still consider going to Iowa for the transplant but if we do, the kidney would have to come separately as our donor can't travel that far and be gone that long. We did go there for an evaluation and also did one for Strong Memorial in Roch. I guess we were lucky to have them both covered. We ahve the same question in mind about which hospital to go to. Iowa is impressive and very responsive. Strong is of course much closer to home.
Cheryl Biermann said:

We have just had a conversation looking into transplant with Soliris. The protocol U.of Iowa is recommending sound very reasonable. If you would like to okay my friend requestion I can mail you this info. via the send a message option here. I am currently at Nathan's hospital right now and wouldn't want to go from memory what the recomendations were. When I get home I'll get the info. together and get it to you.

Kamal D Shah said:

Is there anyone on this site that has undergone a transplant?

If so, I would really like to know if plasmapheresis was used, and what immunosuppression was used. I don't think there is anyone here that has undergone a transplant and has taken Soliris. Is there?

My nephrologist feels we should try a transplant and have prophylactic plasmapheresis and then plasmapheresis during and after the transplant surgery.

Thanks
Kamal

[Cheryl Biermann]

Hi Deb,

Although the computer at the hospital allowed me to respond to Kamal, it froze up when I tried to reply to you. I will send the protocol from home.

By the way, everyone, I'm not posting this publicly due to the fact that every patient is unique and that these are recommendations for Nathan. Your docs may have valid reasons for varying suggestions, and based on new information being released all the time, may change their recommendations from time to time. As long as they are in contact with University of Iowa, I think you are safe if they are sending their opinions and questions to U of I and getting a response back. That is also to say that your facililty is respected and knowledgeable in aHUS and transplants as well.

Deborah Deffenbaugh said:

Hi Cheryl--I would love to see the Iowa protocal as well. Alyssa has been approved for the transplant with Soliris but by the time our donor was also approved the Soliris approval had only one month left. So now we are awaiting reapproval. I am not overly anxious to push things along at this point because I have not been too impressed with the consistency between docs as to what the protocal should be with Soliris. First we were told she would need pherisis again prior to transplant and that we would give her the Solirs 1-2 weeks in advance and then we were told no the pherisis might increase the risk of bleeding during surgery so it wasn't advised and the Soliris would be administered the same day as the transplant. They also didn't seem to know about keeping her in isolation or propholactic use of antibiotics when I quesitoned them. I worry about shutting down her complement system's ability to fight bacterial infection when she alreadyhas a suppressed immune system due to the transplant and immunosuppresent drugs. So any information would be appreciated as I feel I need to do my homework in this area before moving forward. We may still consider going to Iowa for the transplant but if we do, the kidney would have to come separately as our donor can't travel that far and be gone that long. We did go there for an evaluation and also did one for Strong Memorial in Roch. I guess we were lucky to have them both covered. We ahve the same question in mind about which hospital to go to. Iowa is impressive and very responsive. Strong is of course much closer to home.
Cheryl Biermann said:

We have just had a conversation looking into transplant with Soliris. The protocol U.of Iowa is recommending sound very reasonable. If you would like to okay my friend requestion I can mail you this info. via the send a message option here. I am currently at Nathan's hospital right now and wouldn't want to go from memory what the recomendations were. When I get home I'll get the info. together and get it to you.

Kamal D Shah said:

Is there anyone on this site that has undergone a transplant?

If so, I would really like to know if plasmapheresis was used, and what immunosuppression was used. I don't think there is anyone here that has undergone a transplant and has taken Soliris. Is there?

My nephrologist feels we should try a transplant and have prophylactic plasmapheresis and then plasmapheresis during and after the transplant surgery.

Thanks
Kamal

[Kamal D Shah]

Thanks Cheryl for the information. When I was diagnosed thirteen years back, they half-heartedly tried plasmapheresis. They just did three sessions a few days apart each. Of course,as you said, at that time, not much was known about this disease. If they would have been more aggressive with the plasmapheresis, I suspect I would not have gone into CKD at all.

Thanks again for the information. I am assuming this information is still empirical. It is not yet tried on anyone, right?

Kamal

[Joy Lewis O'Brien]

Hello all,
There are a lot of recent publications presenting case studies of patients going through different transplant protocols. I will post six case studies here with a little reference info for each. I'll link to these from the Research Forum, but please comment on the posts themselves here in the Transplantation forum, just to keep all the information and questions in one place.

The first article is an overview of treatement options, including eculizumab without transplantation, transplantation with an eculizumab (Soliris) protocol, and dual (liver/kidney) transplantation. This is less a case study and more a presentation to other hematologists what the current thinking is as far as the research has taken us, and notes that Soliris is still in clinical trials but reports on the outcomes so far.

[Joy Lewis O'Brien]

This next article is a case study about a 42 year old woman whose second kidney transplant was in jeopardy (the first one failed). She received eculizumab for several months during which time her doctors experimented with changing the frequency of doses. She did not experience a relapse of aHUS but after another complication her doctors decided to keep her on an eculizumab protocol indefinitely to prevent any thrombotic microangiopathy (blood clots that kill the small vessels in the kidney and other parts of the body).

[Joy Lewis O'Brien]

This article is about a 17 year old girl who was not responding to plasmapheresis, so underwent a kidney transplant including an eculizumab protocol and has been doing well with no relapse.

[Joy Lewis O'Brien]

This article is about an 8 year old girl who was also resistant to plasmapheresis. It's an excellent review of treatment options considered for a patient in end stage renal disease (ESRD or ESKD), using eculizumab as the treatment protocol she's currently on.

[Joy Lewis O'Brien]

This is a very solid review of the disease process and treatment explanations, excellent for a physician beginning to consider a patient with a new diagnosis of aHUS. It's good reading for parents and patients, too, although might be overwhelming at first. This explains the different types of mutations, ideas about transplants, and eculizumab therapy.

[Joy Lewis O'Brien]

This article was posted this summer in the Research Forum but is very interesting to consider and is worth a repost.

A 22 year old woman was given a new diagnosis of aHUS after a post-partum episode. She had a transplant and a single dose of eculizumab, which has been all that she's needed to stay in prolonged remission.

Please remember that every case and every patient is different. These case studies are for information and review, and might give ideas to parents and doctors about how one might proceed in treating aHUS for your child. Unfortunately, what works for one person might not have the same result for someone else, but the more information that's gathered, the better idea we have for what works. I hope it's helpful to gather all these articles in one place--looking forward to reading your replies!

[KaTrina Slaughter]

Thanks!! Couldn't have come at a better time as we are looking at Transplant teams and I was just trying to figure out what questions I needed to be asking. :)