Getting help from US experts to out of country (Japan) hospitals

[Janet Punty]

Has anyone had experience with international hospitals?   We are running up against an issue in Japan where they will not package up diagnosis and tests and results so they can be shared with other specialists?     Very frustrating - - has anyone come up against this and if so, how did you get cooperation?

 

My niece is in Japan - was in intensive care for 4 weeks - in a regular room now but they still have issues where her hemoglobin goes up with Solaris but eventually goes back down into the 5 range.  Solaris (she has had three doses so far) did wonders for her platelets, but they are baffled as to why her hemoglobin keeps dropping.

 

We want other experts to look at all the values, but they won't release any records to her parents - - they assure them that they have reached out to other doctors - that they spoke with the drug company that makes Solaris - - but this poor kid is going on 7+ weeks in the hospital and has gotten very thin.   I just can't help but wonder if another set of eyes looking at everything might pick something up that they missed - it happens right?

[Cheryl Biermann]

Oh boy, all I can suggest would be just conjecture on my part...first Alexion, the drug co. that produces Solaris has a 1-800 number for patients to call.  I would have your nieces parents call that number, I think it's on our front page of this site.  If not, I have it somewhere, I'll post again with the number.   Secondly, maybe they should also contact the US Embassy to help them enforce their patient rights as US citizens. 

 

If they know her hemoglobin and platelets, I'm not sure why they won't release the other numbers, it doesn't make sense.  We did run into this with my mother in an adult hospital, we had to tell her to be forceful and they still made a fuss.  The parents just really, really need to be firm and having some legal clout with the embassy or some other help might be necessary.

 1-888-Solaris, I believe is the number.

Ask if they are giving her lipids for her weight.  Good luck I hope someone here has more definte information for you.

 

[Linda Burke]

1-888-SOLIRIS is the number mentioned by Cheryl.  Perhaps your niece's care team has already utilized the 'Doc to Doc Directory' on the Home Page to see if other physicians have advice.....  I'm not sure what could be done, but it might be an avenue to discern how other physicians have dealt with gaining patient info from outside the USA.  Best wishes, Linda Burke 

Cheryl Biermann said:

Oh boy, all I can suggest would be just conjecture on my part...first Alexion, the drug co. that produces Solaris has a 1-800 number for patients to call.  I would have your nieces parents call that number, I think it's on our front page of this site.  If not, I have it somewhere, I'll post again with the number.   Secondly, maybe they should also contact the US Embassy to help them enforce their patient rights as US citizens. 

 

If they know her hemoglobin and platelets, I'm not sure why they won't release the other numbers, it doesn't make sense.  We did run into this with my mother in an adult hospital, we had to tell her to be forceful and they still made a fuss.  The parents just really, really need to be firm and having some legal clout with the embassy or some other help might be necessary.

 1-888-Solaris, I believe is the number.

Ask if they are giving her lipids for her weight.  Good luck I hope someone here has more definte information for you.

 

[Janet Punty]

Thank you for this information.   I know the hospital was in touch with the drug company, but I will pass this info on to her parents. for the patient information........................

[Jodi Kayler]

Hi Janet, I hope she is doing better. I just wanted to make a note that It is common for the hemoglobin to not respond as quickly as the platelets. Even after the disease is stopped by the Soliris, the hemoglobin can still continue to decrease because of the kidney damage. Until her kidneys have had a long time to heal, they will be unable to keep up with the red cell manufacturing process. We had the same issue. Our son is still on a weekly dose of Epogen to encourage red cell production. He has been on Soliris for 2.5 years. The disease is in remission but he faces some anemia issues because of the long-term damage to his kidneys. Hopefully, since you niece was placed on Soliris early, her kidneys will heal and the anemia will be a short-term issue. We found that kidneys continued to improve up to 3-4 months after the start of Soliris. Good luck. Jodi

[Janet Punty]

Jodi Kayler said:

Hi Janet, I hope she is doing better. I just wanted to make a note that It is common for the hemoglobin to not respond as quickly as the platelets. Even after the disease is stopped by the Soliris, the hemoglobin can still continue to decrease because of the kidney damage. Until her kidneys have had a long time to heal, they will be unable to keep up with the red cell manufacturing process. We had the same issue. Our son is still on a weekly dose of Epogen to encourage red cell production. He has been on Soliris for 2.5 years. The disease is in remission but he faces some anemia issues because of the long-term damage to his kidneys. Hopefully, since you niece was placed on Soliris early, her kidneys will heal and the anemia will be a short-term issue. We found that kidneys continued to improve up to 3-4 months after the start of Soliris. Good luck. Jodi

[Janet Punty]

Hi Jodi.   Thank you for your note.   She seems to be doing better - - they are keeping her in the hospital and observing.   Such a scary disease.   Good to hear that the kidneys continue to improve over time.