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 That will be up to date no matter when you click on the link whereas my information may get out of date depending when you read this.

[Cheryl Biermann]

Fabulous questions Joy! One consideration we aren't quite sure how to evaluate is this, transplanting at our home is very do-able, either SSM Cardinal Glennon Children's Medical Center or St. Louis Children's Hospital are both very well equipped with fantastic nephrology departments, surgeons and facilities, visiting hours are whatever a parent wants and school isn't an issue. Our debate is should we go to Iowa for this because we would have better access to Dr. Smith and his teams than we would here...do you or anyone else have an opinion? Or is this a non-issue only the parent of a very sick kiddo come up with?!

[Linda Burke]

Sponsored by UNOS, Transplant Living continues Joy's list of pertinent questions, and expands the theme with their page "Getting on the List - Questions to Ask Your Transplant Team". Additionally, the link beow also offers tabs that will bring you to their informational pages: 'Before the Transplant', 'During the Transplant', and 'After the Transplant' as well as age-related issues under the tab "Pediatric'.

http://www.transplantliving.org/beforethetransplant/list/questions....

[Linda Burke]

UNOS is the United Network for Organ Sharing, and their 'Donate Life' logo will be a familiar sight for you all. As our national system for organ donation and transplantation, this remarkable system (listing 241 kidney transplant programs/centers/hopsital) is active 24 hours a day to assist with matching, placing, and transporting donated organs. No matter what organ or transplant center, UNOS offers a wide variety of information. Your transplant evaluation will likely include a consultant providiing you with informational materials such as this comprehensive patient brochure, "What Every Patient Needs to Know" :

http://www.unos.org/SharedContentDocuments/WEPNTK2008.pdf

[Linda Burke]

The National Kidney and Urologic Diseases Information Clearing House has an overview of the transplant process, discussion of financial issues, and a list of resources that includes links to all major kidney organizations.

http://kidney.niddk.nih.gov/kudiseases/pubs/transplant/

[Grace]

It is possible to list at more than one transplant center, though generally not in the same network (OPTN geographic area). Multiple listing needs to be okayed by individual transplant centers, and whatever center the patient was first listed in considered primary if a deceased organ comes from outside the network. (If I'm in CT and there's a perfect match in CA, the kidney'll be sent to the center at which I'm listed first.) UNOS has a brochure with the official policy under patient resources.

Of course, whether or not your insurance will pay for two (or more) evaluations is another consideration.

Don't neglect the importance of your impression of the transplant team--would you trust them with your life or the life of a loved one? Are you a number or a valued person? In my very limited experience, some centers seem more concerned with increasing the total number of transplants and may be less focused on outcomes and special circumstances; other centers are more thorough in anticipating problems with aHUS and developing an action plan.

Smaller centers tend to have shorter waiting lists, but less overall experience, and vice versa for larger centers

If you are considering living donation, are both pediatric and adult transplants done at the same location? How well integrated are the programs?

Most centers want at least an annual follow-up appointment both pre-and post-transplant, which becomes more of a factor the greater the travel distance. Proximity to family and friends during hospital stays is an important factor & personal decision.

Statistics from individual centers such as waiting list numbers, waiting times, survival rates can be found on the UNOS website under Data>Data Reports. If anyone would like help navigating the statistics, I'd be happy to help to the best of my ability.

[Grace]

I didn't realize Iowa and Missouri are in the same network, which makes the choice a bit more limited. The good news is, Region 7 is one of the top two for HUS transplants; I need to look at the numbers more closely.

[Grace]

To clarify my earlier mistake:

The UNOS website (www.unos.org) has data for the current waitlist, and on total transplants. You can look at factors such as diagnosis, age, ABO blood type, gender, or previous transplant. You can look at national, regional or center data, but it is hard to compare different levels at the same time. UNOS has a "build advanced" function and can also create custom data, but I haven't looked into the latter option.

UNOS allows you to see how long current candidates have been waiting, but not how long recipients had to wait. (I think)

For statistics about graft and patient survival after transplant, as well as waitlist status over time. consult the Scientific Registry of Transplant Recipients (www.ustransplant.org) under "Program and OPO Data". Center data is compared to national averages, for instance whether the "transplant rate among waitlist patients" is higher or lower than expected. However, the data does not seem to be broken down by gender, diagnosis.

Remember to check the dates, as some of the data is a few years old.

[Grace]

Because we have a lot of US-specific information, here are some transplant-related links form other countries. I cannot vouch that they are equivalent, so please correct me and/or add to it.

Australia and New Zealand Dialysis and Transplant Registry ANZDATA http://www.anzdata.org.au/

Canadian Organ and Tissue Donation & Transplantation
http://www.ccdt.ca/

Eurotransplant International Federation
http://www.transplant.org/

Multl-Organ Harvesting Aid Network (India)
http://www.mohanfoundation.org/

UK Transplant
http://www.uktransplant.org.uk/ukt/

Organazacion Nacional de Trasplantes (Spain)
http://www.ont.es/Home?id_nodo=124

Scandiatransplant
http://www.scandiatransplant.org/

[Kamal D Shah]

I am a 35 year old from India with atypical HUS. I was wondering if it was possible for me to undergo a transplant in the US. If I brought the donor with me, is it possible to have the transplant in the US. What would be the approximate cost for this?

I did undergo a transplant in November 1998. HUS recurred in the new kidney. I do not want to have the transplant here because most of the nephrologists here have not even have heard of Soliris and are not equipped to deal with this disease and its recurrence after a transplant.

I would really like a fighting chance of success in my second transplant. The only way I see that possible is if I do it at a center that is capable of dealing with this.

Any thoughts?

[Cheryl Biermann]

Although I am certainly not an expert on transplants, I can tell you if you come here to the states, you will need to plan on spending at least a year in our country, maybe it won't take that long though. I've never heard of anything even with a dedicated donor moving very fast over here and with the added work involved in getting the Solirs, and finding a nephrologist and surgery team for adults with knowledge and experience to do the work, I think a year is not too long to expect. Hopefully I'm wrong! At least our medical system is equipped to handle your situation. That being said, you probably want to do a lot of research before you decide what to do. I hope it works out for you. I'm sure our medical people here on the site will be able to give you a much better idea.

Kamal D Shah said:

I am a 35 year old from India with atypical HUS. I was wondering if it was possible for me to undergo a transplant in the US. If I brought the donor with me, is it possible to have the transplant in the US. What would be the approximate cost for this?

I did undergo a transplant in November 1998. HUS recurred in the new kidney. I do not want to have the transplant here because most of the nephrologists here have not even have heard of Soliris and are not equipped to deal with this disease and its recurrence after a transplant.

I would really like a fighting chance of success in my second transplant. The only way I see that possible is if I do it at a center that is capable of dealing with this.

Any thoughts?

[Kamal D Shah]

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]

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