Peritoneal dialysis and travel

[misslynette]

Hi there ~

I just introduced myself over in the intro thread, but I came here looking for information about peritoneal dialysis and travel. My husband came back from a year in Mexico working on our dream house on the beach, only to get into big trouble with his kidneys going down hill. We were moving ~ packing a container, I've sold half our stuff ~ when he got hauled out of our nearly empty house by ambulance, ended up in ICU (flash pulmonary edema), and went into cardiac arrest after another @#%@#%^@ doctor (not the @#$%@#^@ doctor who ignored his deterioration over a year) walked away and couldn't be found after Mike coded.

Oh will I ever get over it? I don't think so. It just keeps coming up, so sorry for throwing that in there, but wow, I've got some serious mad about all that and no recourse except to just be mad.

Okay. So now he's out of the hospital, and I am so, so grateful that he's doing well (although his eyes changed color, brown to hazel, very weird... did he die and come back as someone else?

AND here's what I thought: I thought you could be on Peritoneal Dialysis and Medicare would pay Baxter here in the US, but the supplies could be shipped out of the country. Now I am finding that's not the case. And Baxter won't even speak to me unless I've got a patient number. No one else seems to know.

We have a secondary insurance but "we don't pay anything Medicare doesn't pay." I'll have other options in the fall, and I'm not sure whether any of the others will do this. I can't even figure out now why I thought this was possible? I guess maybe I read of others traveling, Baxter (or whoever) shipping, and those folks had another kind of insurance that would cover it.

I know we can't live down there now as we'd planned, but it sure would be nice to be able to go for a month at a time. The other option is to pay for the supplies out of pocket. Mexico's big on PD, so I know the supplies are available. Hemo's available in Merida for $235/session, but that's unaffordable for us in retirement for any extended period of time.

Okay. Hoping someone has some experience or ideas. Thanks for listening. lynette (and Mike)

[lmunchkin]

Lynette, I'm going to be very blunt and please understand it is nothing personal but from my personal experience.  The traveling for long periods of time is essentially over.  You can get away for a little while, but unless he gets a transplant, it is not going to happen as you hoped.

Now that's not too say that you can't take a little time to go to home on beach, but to stay along period of time just might not be possible!  Just saying!  He has to have constant care, no choice in the matter!  You as his wife, I know you love him, will honor his wishes.  Its no longer about you anymore, it will be about him!

I know that sounds crude, but you will find it to be very TRUE!  I personally do not mind caring for my husband because that's what (we) do.  Do I get angry? Absolutely!  Do I want it to stop sometimes? Yes those thoughts have entered my mind.  Bottom line it is their decision and we must honor it!

I hope I have not offended you in anyway!  That is not my intent by any means. But Lynette, you are fixing to go down a rough rocky road with dialysis!  It is not easy, but it is doable!  Over time you and hubby will adjust your lifes accordingly and just except the fact that he has to do this or he will die!  It is his life-support!  It is what keeps him alive!

lmunchkin       

[misslynette]

Yup, I've pretty much accepted that, Munchkin. I'm just looking for a way to take trips down there, trips anywhere, actually. There is an excellent clinic in Merida and we have been in contact with a nephrologist there, so we wouldn't be without support.

It's the supplies that will get in the way. Believe me, I'm well adjusted to it not being about me. It hasn't been for a number of years and yeah, it pisses me off sometimes, and yes, I'm enormously happy that he's here with me. Whatever comes will come. I had adjusted to the idea that he was dying in the hospital and yet he's still here. So whatever it takes to pack as much life into whatever time he's got, I'm on it. That may mean checking four bags full of PD fluid onto Continental and taking off.

Hoping for a transplant, definitely. I realize that's the best chance to have anything approaching a normal life, but there seems to be some freedom in not being tied to that clinic every other day.

Thanks for your input. I really appreciate you taking the time.

[Jie]

First, unless the employer has a small number of employee, the private insurance should be primary during the first 30 months.

Second, travel with PD is pretty easy within the U.S. I made about 10 trips each year during my PD years and was an MVP of an airline for every year during PD.
 
Third, Medicare does not pay for dialysis outside of the U.S. However, you can ship the solutions by yourselves to avoid this problem.

Finally, Baxter will not pay any shipping cost outside of the U.S. Worse, Baxter has stopped paying shipping costs to Alaska and HI as well since sometimes last year.

Bottom line is to find some places in the U.S. for vacation. Or, alternatively, have Baxter to ship the solutions to an address (or hotel) near the Mexico border and then rent a car to carry them to the vacation place in Mexico. 

[lmunchkin]

Oh it would be great, Lynette, it he could get a transplant. It is not a cure, but much better than D.  And really, I was
not trying to make light your situation at all, and I hope you believe me when I say that.  It's just that we caregivers ARE going through this disease with our love ones.  NO, we don't have the actual disease, but don't tell me we haven't a clue, cause buddy, we do have a CLUE!  It looks us in the face every waking second of the day to let us know it is still there.

But I do agree with Jie, that PD is probably the best to maneuver around than any other as far as supplies!  And to have them shipped close to the Mexican border, well hay, Im all for it.

I think it's great to want to get away with hubby.  Spend some quality time with him and let him know how much you care. We do what we can to let them know we are by their sides.  God only knows, they did not ask for this to happen to them.

Hope you get to your Beach Home!

lmunchkin     

[misslynette]

Hmmmm .... so Baxter WOULD ship if we paid for it? Can't wait until my Norwegian friend gets back from New Zealand so he can talk to the Nephro in Merida for me again.

Mike's secondary policy is just a Medicare supplement. He's been on Medicare for a number of years, longer than 30 months, so we're stuck with a supplement. There are a few other options come fall, so I'll check those out.

Such an ordeal. Who signed up for this? Not us Thanks for the input, folks.

[Jie]

I think Baxter will ship to outside of the U.S. if you pay for it. If you spend three or four weeks there, it is going to be very expensive for shipping. I heard someone shipped more than one month of solutions to Asia months ahead of travel time to save money (shipping by seas rather than by air). For some countires, there are still issues with the custom. Ideally, Baxter has warehouses in Mexico (I think it has) and ship them inside the Mexico to save the shipping cost. For PD, one still can do it outside of the U.S. without dealing with Medicare payment issues.