Steroid Dependent/Adrenal Crisis?

[CanadaDeb]

Hi All,

 

I was wondering if anyone who's steroid dependent has ever fallen ill during a cruise?

 

I've lived with it for a long time and know if I get IV steroids onboard ( no pun intended ) I'll be fine, but am wondering what cruise ships would usually do? I know they don't want a liability onboard but they can decide to get me off the ship....makes me nervous :(

 

Any feedback is welcome. Thanks!

[GeezerCouple]

Hi All,

 

I was wondering if anyone who's steroid dependent has ever fallen ill during a cruise?

 

I've lived with it for a long time and know if I get IV steroids onboard ( no pun intended ) I'll be fine, but am wondering what cruise ships would usually do? I know they don't want a liability onboard but they can decide to get me off the ship....makes me nervous :(

 

Any feedback is welcome. Thanks!

 

I'm not familiar with this specific problem, but... how is this different from any other medical/disability urgency/emergency when on a ship?

 

Is there a reason the ship's medical team couldn't handle this? (That would obviously be risky.)

 

Are there specific medications you should keep when you travel with you "just in case"?

[xxoocruiser]

Hi All,

 

I was wondering if anyone who's steroid dependent has ever fallen ill during a cruise?

 

I've lived with it for a long time and know if I get IV steroids onboard ( no pun intended ) I'll be fine, but am wondering what cruise ships would usually do? I know they don't want a liability onboard but they can decide to get me off the ship....makes me nervous :(

 

Any feedback is welcome. Thanks!

 

Disclosure : not a medical professional nor do I have Adrenal Crisis (adrenocortical insufficiency)

 

Generally speaking every emergency physician should be familiar with adrenocortical insufficiency. However with that said much depends on the experience of the Doctor on the cruise ship as well as if the cruise ship has the IV steroids on board for treatment. Cruise ship Medical Facilities do not function as a complete hospital nor does it have a complete pharmacy on board. Therefore as with any medical emergency on board there's always the chance that the person will have to be transferred to the closest hospital.

 

Only you and you doctor can decide the risk level cruising poses to your condition. Have you discussed this with your Doctor ? If not than suggest you do so. If you decide to proceed with a cruise than highly recommend purchasing travel insurance that has a "pre-existing condition waiver" as well as covers evacuation costs. Most travel insurance policies require it to be purchased within 10-14 days from the initial booking date to have pre-existing conditions covered.

Edited April 28, 2016 by xxoocruiser

[CanadaDeb]

Thank you both for your replies.

 

I have no pituitary or adrenal glands ( removed due to tumors ), therefor no was to secret cortisol ( also known as the stress hormone ). I take steroids and if I have any type of stomach issues, I need IV steroids...but it can be fatal so that's the part of my worry. I've lived with this for more than 20 years I know the warning signs, how to handle it but I know it's the doctor's decision.

 

I do travel with emergency meds, insurance covering pre-existing/evacuation and also wear a medic alert...also have a letter from my doctor with instructions and contact the cruise line beforehand ( long winded sorry ) but at the end of the day the ship's doctor is the one who decides and I have read stories here about people being told they have to leave the ship for far less.

[GeezerCouple]

Thank you both for your replies.

 

I have no pituitary or adrenal glands ( removed due to tumors ), therefor no was to secret cortisol ( also known as the stress hormone ). I take steroids and if I have any type of stomach issues, I need IV steroids...but it can be fatal so that's the part of my worry. I've lived with this for more than 20 years I know the warning signs, how to handle it but I know it's the doctor's decision.

 

I do travel with emergency meds, insurance covering pre-existing/evacuation and also wear a medic alert...also have a letter from my doctor with instructions and contact the cruise line beforehand ( long winded sorry ) but at the end of the day the ship's doctor is the one who decides and I have read stories here about people being told they have to leave the ship for far less.

 

If you are told to leave the ship, no doubt it will be for your benefit, not just because you have "some condition".

I'm still not sure what your concern is.

IF they can treat it, they will, but they won't mess around if they think you need more advanced care than they can provide.

 

Check in advance with the "special needs" on the cruise line you are on about whether you can (or should) bring any special meds.

 

We ALWAYS carry most of the meds we would need in an emergency, although we'd be very surprised if the ship's medical center didn't have them.

Your needs are very specific.

Are you able to bring the IV steroids with you, or do they need to be prepared fresh?

 

The one thing I'd worry about is IF you needed something special, including being transferred to a land-based hospital, but were too far from a coast even for an air rescue...?

That could happen to anyone, but most people don't have specific existing conditions that make it somewhat more likely.

[CanadaDeb]

I was just hoping to hear from someone who's been through it, you know what I mean?

 

I do take all the precautions I can, I'd never cruise a TA for example, we make sure to choose cruises that are 'safe' in that respect...thanks for your comments :)

[payitforward]

I had been an EMT for 15 years and had never heard of this when the preschool I worked at wanted to admit a child with this condition. I quickly learned as much as possible about it, and worked with the local Rescue Chief to develop a protocol for their Paramedics. Despite this, the first time I had to inject the child and call for a Paramedic unit, they knew nothing about it. I handed them the packet I had developed for just such a scenario - explaining the condition, their protocol, what could happen, etc. When they got to the hospital after reading my information, they apologized profusely to the child's mother for their indifferent attitude on the scene. (He had looked fine because I had just injected him with the Cortisol he needed to get him to the hospital.)

 

The moral of the story is - the more the ship's doctor and staff know about your condition in advance, the more comfortable they will be when it comes time to board. Give them as much information as possible in the most simplistic terms you can. Give them the treatment protocol from your doctor that is normally followed. Allow them time to research it for themselves. Once all of that is done, they should have no reason at all to deny you boarding. If a doctor cannot handle your condition after being armed with all of the information up front, he/she has no business being a ship doctor.

Edited April 30, 2016 by payitforward

[MommaBear55]

I am glad to hear that you carry your own emergency meds, as it is unlikely that ship would carry IV hydrocortisone. They would carry Solu medrol, which is the steroid used for breathing issues.

[CanadaDeb]

Thanks again for the replies.

 

My specialist laughs at me about how I travel...I stash emergency injection kits and all of my different meds ( 8 in total ) in my purse, in both carry ons, have a special tag on my carry on stating 'medical supplies' and my medic alert, of course. I have a detailed letter from my doctor about how to treat adrenal crisis ( like dosages and time span ) and a print out from the Cushings/Addisons website on warning signs of crisis. When the doctor's office opens on boarding day, I take a copy of everything and introduce myself, leave the info with them and give them my stateroom number.

 

It seems over the top, I know, but it can happen fast....I know I do everything on my end but was curious to know if anyone had the experience themselves.

 

Payitforward it was really awesome what you did. Your diligence probably saved his or her life. How lucky you were there :)

[payitforward]

Thanks again for the replies.

Payitforward, it was really awesome what you did. Your diligence probably saved his or her life. How lucky you were there :)

 

Thanks so much. They eventually moved away. But, before they did, the mother asked if she could have everything I'd written to educate the other teachers and paramedics so that she could give it to his new school. ;)

 

I can't imagine living with what you do, and admire the fact that you still travel at all! So many people with disabilities sit home feeling sorry for themselves. (I admit to doing so for the first two years of my own illness. Now I run annual cruises for people with fibromyalgia and MS to teach others that we can still enjoy life.)

[GeezerCouple]

Thanks again for the replies.

 

My specialist laughs at me about how I travel...I stash emergency injection kits and all of my different meds ( 8 in total ) in my purse, in both carry ons, have a special tag on my carry on stating 'medical supplies' and my medic alert, of course. I have a detailed letter from my doctor about how to treat adrenal crisis ( like dosages and time span ) and a print out from the Cushings/Addisons website on warning signs of crisis. When the doctor's office opens on boarding day, I take a copy of everything and introduce myself, leave the info with them and give them my stateroom number.

 

It seems over the top, I know, but it can happen fast....I know I do everything on my end but was curious to know if anyone had the experience themselves.

 

Payitforward it was really awesome what you did. Your diligence probably saved his or her life. How lucky you were there :)

 

We also each have a need for emergency meds to be "at hand" just in case.

However, our specialists have congratulated us for being so well prepared when we discussed our travel planning with them.

We have one carry on with "all the meds", including those not needed for potential immediate emergencies. Separately, we have a much smaller kit with a pared down set of "for emergencies only" meds in the other carry on. Then... in my purse, an even smaller quantity of the most critical.

And we also have two letters describing the medical needs, although they've never been needed yet.

 

We still worry about if something really bad happens while hours (or days!) from "help".

 

We also contact the "special needs" at each cruise line (these departments have different names) a couple of weeks before the cruise, to alert them to our situations in case they want any more details or documentation from our health care providers.

But we hadn't thought to meet the medical staff on boarding day, and that seems prudent - thanks for the idea.

 

At airport security, one of us goes through first, in place to "catch" the carry ons immediately as they arrive on the conveyor belt.

[CanadaDeb]

Thanks so much. They eventually moved away. But, before they did, the mother asked if she could have everything I'd written to educate the other teachers and paramedics so that she could give it to his new school. ;)

 

I can't imagine living with what you do, and admire the fact that you still travel at all! So many people with disabilities sit home feeling sorry for themselves. (I admit to doing so for the first two years of my own illness. Now I run annual cruises for people with fibromyalgia and MS to teach others that we can still enjoy life.)

 

Thanks for your kind words. That family will remember you for the rest of their lives, I'm sure. I'm sorry about your illness, I hope you're doing ok.

 

I was 16 when I became ill and it did take me a long time to get a hold on being ill and everything that goes with it, I think most of us do. Now I treasure everything I can still manage because I know that sooner rather than later I won't be able to do things like cruise. What a great idea for your cruises! Have fun!

[CanadaDeb]

We also each have a need for emergency meds to be "at hand" just in case.

However, our specialists have congratulated us for being so well prepared when we discussed our travel planning with them.

We have one carry on with "all the meds", including those not needed for potential immediate emergencies. Separately, we have a much smaller kit with a pared down set of "for emergencies only" meds in the other carry on. Then... in my purse, an even smaller quantity of the most critical.

And we also have two letters describing the medical needs, although they've never been needed yet.

 

We still worry about if something really bad happens while hours (or days!) from "help".

 

We also contact the "special needs" at each cruise line (these departments have different names) a couple of weeks before the cruise, to alert them to our situations in case they want any more details or documentation from our health care providers.

But we hadn't thought to meet the medical staff on boarding day, and that seems prudent - thanks for the idea.

 

At airport security, one of us goes through first, in place to "catch" the carry ons immediately as they arrive on the conveyor belt.

 

I also worry about that ( being hours or days from help ) because you just never know! My doctor does tell me I am well prepared but I think she laughed at how I told her about my packing...:) Easy for her not to worry when she's healthy and is a doctor!

 

You sound as prepared as you can be...I think we're all set to go! Have a great cruise everybody, may we all have safe, happy and medical emergency free cruises!

[Been There, Planning That]

Our daughter brings a translated medical alert in addition to her bracelet. This wouldn't be needed on the ship but might on shore excursions in an emergency. I believe she gets the correct language on line from the British Medical Association. It's just another backup for peace of mind.

 

Ruth