Cancelling Winter Trip

[5thwheeleroldma]

Well, shoot. Wife's colitis still uncontrolled and Doc says cancel trip, stay close, will try some experimental injections ---- Humira. The shots are experimental, need about 30/yr, and cost $4000 each shot. They are trying to get my insurance to agree. Seems that medical science just can't get a hold on lots of things.

Have to start seeing if I can get my Yuma and Gold Canyon prepays back. Probably like pulling teeth, or impossible. If we can ever travel again, I need to find some way to not pay full bill 6 months ahead. The nice parks are so full, that seems the only way to get in. Or, am I missing something?

[kedn]

When I was on Humira the doc said "give yourself the injection like this" and sent me packing. I had already been self injecting other stuff before, but there was no requirement it be done in his office. None of my drugs I've had in that class have been more than "you ok to do it yourself? ok see you in 4 months.".

The assistance plans are great, be sure to take advantage of it.

[5thwheeleroldma]

Perhaps I am confused, the doc first tried to get the wife into trials for tocifinab(sp?), a pill I think you take daily. With it you have to be interviewed by the doc, personally, once a month. However, further investigation said the trial was limited to non-segmented colitis; the wifes is segmented, ie skips throughout the colon.

Failing that, he recommended the humira injections, and yes I can give the injections myself after the doc first does a series of 4 injections himself, then two weeks later does a series of 2 injections himself. After that, I can do the injections. However, he first has to get approval from my insurance company, medicare, and the company making humira ---- which takes 10 plus days under normal circumstances --- who knows how long with Christmas and New years coming up. I assumed all this meant another trial. Anyhow, we are stuck at home until at least late in January, probably longer. We will want to make sure the humira is effective for her; nothing else has been to date.

So, we can travel again if humira all works out. I'm an old farm boy and my job was to inject the cows for blackleg, shipping fever, etc, so shots don't worry me. What does worry me is how to drive my wife into a corral, rope her, and tie her up before giving the injections. She may be harder to handle than the cows were.

[puttd]

Sorry about your situation.

A bit puzzled though. Humira has been around for a long time and an FDA approved use is ulcerative colitis.

My parents full timed many years with Mom taking humira, albeit not for UC. Not sure how long it takes to kick in with UC. But being on humira itself should not prevent traveling.

There is a patient assistance program for humira: http://www.abbviepaf.org/pdf/AbbVie_PAF_HUMIRA.pdf

[5thwheeleroldma]

Thanks rwbradley; that has been our position, that you can be sick on a nice vacation as easily as at home. We have gone on to our trips before, but this flare has lasted for over 7 months now and responds to nothing, lots of blood in stools, lots of pain, etc. The doc is trying to get her into an experimental program and needs her within one days drive at least for the next month or so. We may take a late trip in February or March if things get under control. And, as you know, having another doctor pick up on something complicated like this is not like going to urgent care for the flu. They all want to run their own weeks of tests, colonoscopies, etc; which our doc has already done. Hate to go through all that again.

[BarbaraOK]

Plus, they have a lot of excellent physicians in Arizona that know about treating snowbirds in the winter.

Barb

[rwbradley]

I do not pretend to know your wife's specifics or what kind of trip you have planned. But I also have UC and love to travel. I even travel during flare ups. There are some logistical concerns that we have to consider. Also in my case stress is the big trigger (there are others as well but not as big) so my G.I. has been very supportive of "relaxation" therapy. Normally anti-inflammatory drugs cover me, but he also has given me an emergency prescription of Prednisone that I carry for emergencies, so I can avoid an ER visit. For me, when I am having a flare up I mostly want to sit/lay around and read a book, so why not do it in front of a fire with a mountain view for a backdrop.

There are a few things to consider that I do (I know if she has been dealing with this for a while a lot are obvious):
1) does she like to travel or want to do this trip? It may do her some good.
2) can you talk to the Dr and see if they will support this idea?
3) will it cause insurance issues?
4) with a trailer/RV you have the obvious benefit of having a rolling bathroom right behind you. I have actually made "emergency" breaks on the side of freeways before.
5) can you adjust your schedule so the drive is less stressful ie take an extra day? Also planning shorter or closer to home trips may still allow you to travel in the future.
6) with a trailer/RV you have a rolling kitchen so she can eat what she needs to, and not try to find Restaurants that will accomodate her. It doesn't matter to me if I am only eating PB Toast, Scrambled Eggs and Pretzels all day in my trailer, still less stressful than being at home.
Hope she feels better.

[Vet_Man]

I have lost my Deposit due to health reasons twice a couple years apart. Even after explaining I have cancer, it did not matter. "Florida"

[MarkTwain]

The RV resort we stay in every winter has a policy of pre pay but if you are unable to show up, they just transfer your reservation $$$$ to the next year. The also have a refund for medical conditions..

[5thwheeleroldma]

Yes, the health comes first. Reminds me of the story, though---- a young guy comes into dentist office and says, "Doc, I've got a toothache, but I'm going deer hunting ---- no time for deadening, just get in there and take care of that tooth and let me go!" Doc thinks, "Boy he's tough and brave; which tooth is it" Young man turns to his wife and says, "honey, show the Doc which tooth it is that hurts".

Not very amusing to the wife.

[TomG2]

Wife's health is more important than any vacation. I do hope you publish the name of any park that refuses to give a medical refund. Thankfully, the parks in the Rio Grande Valley are not that crowded and one can get into most parks without a reservation these days.

[4huskers]

That really sucks. Getting the wife healthy is the number one priority. Hopefully insurance will come through for you. My wife has been dealing with constant back pain for almost seven years. An implanted spinal stimulator has helped and with meds she gets along much better.. Hope she gets relief and you can get on the road soon. You're in our thoughts and prayers.

[Poppy___Nana]

Sorry to hear you have to cancel your trip! Actually more sorry for your wife - she is suffering not only from the disease but from not going away!

I hope she is able to get some relief from the symptoms of colitis! It is hard to live with, never knowing when you will have a flare up!

[midnightsadie]

might send a copy of doctors orders, they do a medical refund.