Transplant Coordinator

[JillHardy]

I am getting antsy with my father's transplant coordinator for his stem cell transplant. There has been definite progress in one month since we have been on the donor registry; however, sometimes we call for updates and we hear "no updates today - the systems down" or "oh, no updates today, I was out sick for two days and am playing catch up." I am frustrated because this sounds like excuses to me. Has anyone had the same frustration? Should this be a red flag or am I being overlly sensitive? I keep hearing the Dr.'s say that timing is of essence to find a donor for my father but when we hear excuses on the donor updates it freaks me out! Any thoughts?

[JillHardy]

Since I last posted this question I have done more talking with family and friends and understand the coordinators tough position in the transplant process. My dad was diagnosed in June with MDS so this is still soooo new to me so forgive me if my question sounded a little harsh! Just trying to figure out so much info at once!

[Ruth Cuadra]

Hi, Jill.

Welcome to Marrowforums. You seem to have partly resolved your own questions, but I wanted to add that I know patients (or their advocates) need to be pro-active in staying in touch with their transplant coordinators during the search process. In my experience, these hard-working people are juggling so many patients--each with their own unique criteria, but all with pressing timelines--that it can be hard for them to keep patients completely up to date on the status of their own search. Coordinators should be aware that patients need to be updated reqularly, but it's a situation where you may need to be a squeaky wheel to keep your father's case in the front of their minds. Being a transplant coordinator is part technical and part social worker. Some people are likely better at one part of the job or the other. I was lucky to have a wonderful coordinator at City of Hope, who found my match quickly and always thought of me as one of "her" patients. I hope your Dad finds his match soon. Where is he being treated?

Regards,
Ruth Cuadra

[JillHardy]

Thanks, Ruth! I appreciate your input. I definitely agree with your post and I definitely do not want it to sound like I am questioning anyones work ethic; however, it is so stressful waiting for a donor.
My dad is being treated at KU here in Kansas City. He has been getting great treatment here and he really wants to stay here in KC vs. going out of state for his transplant. We visited Barnes Jewish on Monday and I was soooo impressed with the Siteman Cancer Center and the Dr. we visited with. Barnes is a center of excellence and I am not sure what that means; however, I was so impressed with this place. Did you stay near home for your transplant? Would you recommend someone going out of state for a transplant even if the local Dr.'s who specialize in BMT are saying the same things as far as current and future treatment plans? I would love to know your thoughts.

Jill

[JillHardy]

Ruth,
I had NO clue I was talking to you when I wrote my last post! I read your story last weekend about your transplant, the time leading up to it and when you met your donor. I found your story to be so inspiring! I am so glad I was able to talk with you! Thanks for your help with our coordinator. If I have any more questions I'll be sure to post them here. I have found this site to be extremely helpful!

Nice to talk to you!

Jill

[Ruth Cuadra]

Did you stay near home for your transplant? Would you recommend someone going out of state for a transplant even if the local Dr.'s who specialize in BMT are saying the same things as far as current and future treatment plans?

Barnes is a center of excellence and I am not sure what that means

Jill,

I'm just one of the regulars reading the forums and jumped in to add my two cents about transplant coordinators. Thanks for your kind words about my story and our website.

I did stay near home (if you call 35 miles away "near"--in LA we do!) for my transplant. My husband and I visited the Hutch in Seattle and considered what it would take to move up there for up to six months with two teenagers. We decided, without any regrets whatsoever, to stay at City of Hope where we were familiar, confident, and near family.

I think the location of transplant center is one of many issues that need to be considered. Often the decision is controlled by what insurance will pay for. Sometimes the choice is affected by the proximity to family. But it should also be based on whether your local doctors and transplant center are experienced in dealing with MDS. You want to be where they have seen and treated as many MDS patients as possible. The National Marrow Donor Program has statistics on transplants and outcomes by disease that can help you evaluate any center you might be considering. If the decision is made to go out of state for a transplant, you'll want to be sure that your local doctors will be able to work with a remote facility for followup care when you go home.

You should approach the phrase "center of excellence" with caution. Some organizations give this designation, but don't really evaluate them in any meaninful way. They do tend to be among the best centers, but I would look for a center designated by the National Cancer Institute (NCI) as a Comprehensive Cancer Center. The Siteman Center at Barnes-Jewish is an NCI-designated center.

Regards,
Ruth

[JillHardy]

This is really helpful information. I am going to use your suggestions along with the web links to compare KU Med and Barnes Jewish. I am sure I will have some questions upon reviewing the research and if so I am going to email you. Thanks for being so helpful.

Jill

[skoopman]

Hi Jill,

I hope you don't mind me throwing in my two cents here. I understand your frustration with the transplant coordinator. When we were looking for my daughter's match in the registry, the coordinator was great and kept me up to date (I saw her walking by most days my daughter was in clinic) but it seemed unbelievably slow to find the match. It turned out the issue was with the potential donors, not the coordinator. What happened was the donors are contacted, then have to reply if it was a message that was left, then have to make an appointment to go give blood, then have to make an appointment for a physical, etc. All those appointment can take a while if the donor doesn't feel a big time crunch. One of the potential donors for my daughter never did call back to give the first blood sample. I don't know what his story is, but it still bothers me a little bit when I think about it. Anyways, the point I am trying to make is if the coordinator is just a bad communicator, it is possible that things are happening on her end but the donor or donors are being slow.

The other thing I wanted to say was about your question of staying close to home versus moving. I agree with what Ruth said in that you want a BMT center that has experience with MDS. When my daughter needed a BMT we went to Milwaukee from California because there is a dr there who specializes in pediatric AA cases. I am a stay at home mom so didn't have job to worry about, my husband works from home so he was able to work a lot while out there with us, and my mom here in CA took care of my younger son and flew him out several times to visit. It was a hassle but she is doing great and I would make the same decision again. On the other hand I know people who stay close to home because that is where all their support is. Most people can't up and move for 6 months. Keep in mind your dad will need a caregiver with him at all times, especially in the first few months.

I hope you get some good news about a donor soon!
Suzanne