Diagnosed in S.Korea ---How do I get him home???

Hi PDSA folks,

I've just joined this site. My boyfriend and I have been living in South Korea as English teachers for 14 months now. But he's been in a hospital in Bundang for the past two weeks with a platelet count ranging from 2,000-7,000 (it changes daily - I presume that's the norm). After extensive testing they've settled on an ITP diagnosis. They give him good care here. But Korea has no sick leave and his boss could drop his contract and therefore his insurance at any time. We desperately want to get him home to Australia where he can talk to English-speaking doctors and decide on long term treatment options where health insurance is not an issue.

WHAT IS THE DEAL WITH AIRPLANE TRAVEL AND ITP???? The sooner we can get him home to Australia the safer I'll feel.

Thanks,
Jalice

Hi Jalice,
I have looked into this topic recently because I am planning a trip. I am sure you will get some mixed responses - from what I read though, several people have said that they, or their ITP children, have travelled with platelets between zero and 10. Some people have said their numbers went down during travel, while some said they went up upon return.
My doctor recommended that I cancel a trip I had planned over the summer when my platelets were in the 20's but that was because I was travelling away from my doctor. In your boyfriend's case, he would be travelling to a doctor so that might make a difference.
Everyone is different and there is no way to predict how any one person will respond.

Have they tried any treatment on him at his current hospital? Sometimes people get a quick boost from steroids like Prednisone or Dexamethasone. The side effects are yucky, but it might at least get his platelets into a safe range.
IVIG is another "rescue" treatment. The effects are usually short-lived, but it might give him enough time to make it home.

-Chelle

What treatments have they tried?

Is there an Australian Embassy there? or a British Embassy may be able to help. Hope you can get him moved easily.
Julia

He's been on Prednisone for ten days with no response. He's received several platelet transfusions also with no response. And they started Danazol in addition to Prednisone three days ago, no response yet.

Platelet transfusions don't help ITP except for maybe a couple of hours max, like if you need an emergency surgery. They can actually increase the spleen's destruction of platelets. What about IVIG, that's the rescue treatment that seems the most common, many get a significant increase that lasts a week or more.
Erica

Danazol usually takes months to work, if it will work at all. Many people have no response to Danazol. Platelet transfusions are useless too.

Prednisone is a good first-line treatment, but some people just don't get a platelet increase. In that case, they usually turn to Win-Rho, IVIG, or Decadron; those three can give fairly quick responses.

How are his symptoms? Does he have any bleeding?

Just a suggestion. I didn't respond to pred, but i did respond to the solumedrol pulse. And presently every time I want to travel I take a 4 day pulse of dexamethasone (decadron) and travel on the 3rd day of the pulse. The standard dosage I think is 40mg per day for 4 days. Hope you get him home soon!

I have flown a lot with ITP (including some really long flights -- 16 hours) and have never seen it impact my counts, up or down. I don't think flying presents any inherent risks, other than the fact that if "something" happens it would take longer to get medical care. On the other hand, I do recall some posts on this board from people who said flying did impact their counts. No way to predict how he would respond.

I agree with the suggestion to try IVIG. If it bumps his counts, even for only a few days, you can schedule a flight home just after a treatment. IVIG is very short term for me -- 2 or 3 days only -- but it does work for a lot of people.

You can try IvIg or Dexamethasone to bump up his counts enough that you can fly home to Australia.

I flew on a 16 hr trans pacific flight with counts below 20k, had an overnight stopover and then flew another 4 hrs to home. I was covered in bruises from all the lugging around of suitcases and running after my 3 kids but no bleeding.

Just be careful with overhead luggage etc.

I forgot to mention that he'd been on immunoglobulin (is that the same as IVIG??) a week ago ---no response. His platelets remain between 2,000-7,000 depending on the day. He has a nasty hematoma (sp?) in one arm and occasional but minor nosebleeds every other day. Otherwise there is no bleeding issue presently. (He peed blood his first week in the hospital but that's cleared up now).

Mentioning flying him before he gets up to 50,000 made his doctor very uncomfortable. But I don't know if we can afford (emotionally and financially) to wait months in Korea to see what if anything works.

WHAT IS THE RISK of taking a 9 hour flight???

Jalice:

We can't give you risk statistics since anything can happen. I do think 50,000 is over kill though.

One question for you that hit me last night...does he already have medical insurance in the U.S.? If not, it might be difficult to get it now that he has a pre-existing condition.

We're returning him to Australia where they have socialized medicine. So insurance there isn't an issue. No if his home was the U.S. I'd probably opt for leaving him in S.Korea. It's expensive here, but not as expensive as Arizona was (I'm American, bf= Australian).

Oh good! I assumed U.S. - shouldn't have done that!

I've flown a couple of times with my low platelets. No problems.

Good luck.

The risk is that he'll bleed and nobody will be able to help him. Could be spontaneous bleed at those counts, or he could get hit in head by a suitcase or drink tray... That's the risk.
Erica

dont panic with the immunogloblin. I have taken that with steroids. Nearly always a five day course before platets begin to rise to two or three but once they start to rise mine continue to go up. In the past I have only needed a five day course every 18 month or so. But they know my body is slow to respond, but it does respond. Am kept in so that if any bleeding should happening then they can deal with it. It has been like that since 1994. I know the pattern and so do they. In fact the last count I know about was 37 and between us decided not to treat because it was remarkably already climbing without treatment. But there again I do not normally know at 10. I only know when its five or rock bottom.
Is Intraveneous immunogloblin same thing as IVig, I don't know but do others

IVIG is Intravenous Immunoglobulin.

IV = Intravenous
IG = Immunoglobulin.

It's also sometimes called gamma globulin. Immunoglobulin is another word for antibodies and there are different types of antibodies. IVIG is mostly immunoglobulin G, or gamma in the Greek alphabet. You might also read about immunoglobulin E, M etc.

Lily

Hi
Thanks for that and I have been reading about it in the treatments section here and realise I have been soooo lucky all round!

Apart from not knowing whether the anaemia I sometimes have is caused by the platelet drop or is a side effect of IVIG. But don't get it every time. and that is my only side effect from it though haven't needed any for 8 years.

GOOD NEWS. His platelets rose overnight to 64,000 and we flew him home to Australia yesterday. He'll still have to be careful and seek treatment until he finds what works for him, but he's safe at home with his family.

Here's what I learned about flying.
We had two hematologists, one in Australia, and one in Canada who told us that it was relatively safe to fly at 20,000 platelets. There's a risk, but not an outrageous risk. They also told me that his Korean hematologist was probably insisting upon the 50,000 platelet mark because IF something did happen on the flight, and the airplane had to do an emergency landing or something, his hematologist would have been liable.

He has refractory ITP. Which (as I understand it) means that he is resistant to the drugs so many others respond to. So IVIG (immunoglobulin) had no effect on him. And after a platelet infusion, his numbers dropped. For the last three weeks his platelets have ranged from less than 1,000 to 9,000. So y'all can understand how shocked I was when he went to 64,000 overnight!!! The doctors think that the prednisone combined with the male hormones (Danatol I think) had finally kicked in. Whatever it was we got him on the very next flight to Sydney while we had the opportunity.

I'm going to miss him but at least I kow he's safe!

Thank YOU for all your input!!!!
Jalice

That's great news Jalice. It's very important to have something that works and I think the side effects of Danozol aren't bad for men.

Rhiannon, I think that IVIG could cause anemia. One hematologist told me that it can work like WinRho, which does cause anemia, but you should probably ask your doctor.

Lily

I'm so glad you finally got home! Great news!

Hi Lily

I only am anaemic sometimes when have IVIG and when the platelets rise up that improves too. they treat the anaemia when it happens and as IVIG does work for me when I need it. Though if I ever need it again and get anaemic I will ask them direct if IVIG is the cause. It always recovers so no big worry there - just interested.

I'm with Sandi, it's great news to hear you got him home! How long will it be before you get home too?

Just out of curiosity, where was the doctor from Canada? Probably out of Ontario.