Medications a Reason Not to Go ?

[Roostre]

Hi all. I am new to the forum. I have been searching and reading for a few years, learning as much as possible from the folks that are out there living the dream. (And the dockside dreamers!!) My wife and I have been discussing the reality of heading out much sooner than anticipated so I am now in full "research and plan" mode. Getting a good plan down in writing with some rough schedule of 'when to do what' is our goal. More questions than answers at this point.

My beautiful wife of 12 years was born with a congenital heart condition. She had a pacemaker installed at 17 years old. She has lived with this burden all of her life, but most folks that know her have no clue as she has always been healthy and happy for the most part.

At 29 yo her heart was worn out. She was blessed to receive a donor heart from a teen age girl killed in a car crash. Her recovery was nothing short of miraculous and she actually returned to her job within 6 months!! She has stayed healthy and takes good care of herself. The major downside is the expensive prescriptions that she will be required to take for the rest of her life.

She is down to 2 meds that must be taken each day. Mycophenolate mofetil which is a generic for Cellcept and TACROLIMUS which is generic of Prograf.

We would like to spend one year in the South Pacific (longer if the budget will allow).

How difficult/costly will it be to get these medications:
1. In major ports in the S. Pac?
2. By having them shipped to us while there?

Are there some countries that would be better for this than others?
Would we have to pay duties on the meds or any other red tape problems?

I have some connections with an importer in Tonga that could be used if we had to go that route. It's not one that I would like to rely on!

We realize that this is a risky undertaking, but so is driving your car to work. Hopefully with some careful thought we can mitigate those risks and actually go out and enjoy ourselves for a while!

Also- our budget includes airfare for her to return home for annual check up that she requires and a separate contingency fund for emergencies abroad.

Any advice or opinions are welcome. Can it be done?
P.S. We will not be taking the daysailer in my profile!

[SaucySailoress]

Firstly - when my Dad was diagnosed with Cancer, he stopped travelling. He put this down to not being able to get affordable travel insurance with his condition, and a fear of losing his house if a plane had to do an emergency landing because of him! I have issues with this philosophy, since I believe life is for living, so who needs a house, and screw what's left in the inheritance. That's probably not relevant!

BUT - will insurance be an issue for you guys? Is she likely to need medi-vacuation? How much extra premium will you have to pay due to the existing condition? These things add up, if you can afford to pay them.

Importing medications shouldn't be a problem, if you have the correct prescriptions. But how about stopping off in S.America and collecting a year's worth there? I hear it's quite cheap there....

[osirissail]

Heart problems are a different matter. Medications can be sent reliably by courier like FedEx or DHL but it is expensive. Do not send anything by normal mail as I have friends who tried that and it took more than a year to get one shipment.
- - My major concern would be with how she will react to "super-stress" situations. That, of course, is can only be answered by you and your experience so far living on land. Although the vast majority of cruising is benign and passages can be rather boring, there are times when bad weather, equipment failures and other circumstances can cause considerable stress and fear. On the oceans you cannot pull over to the side of the road and wait out the weather/storm or call the auto service company.
- - These elevated stress levels can last up to several days or more. Again, they are rare, but they definitely will occur sooner or later if you "stay out there" for any length on time. The passages from Panama to the Galapagos vary but are around 11 days at sea. From the Galapagos to the Marquesas can vary from 3 weeks to more than a month at sea out of reach of any land. The journey from Tonga to New Zealand or Australia is known to be at times rather nasty.
- - One way around this is to ship your boat to French Polynesia on Dockwise Transport or some other yacht shipping company. And use the boat within the island area avoiding anything more than an overnight crossings. You can avoid long passages and exposure to some nasty weather by using shipping companies - but that can be a very expensive proposition if you have a large vessel.
- - Another alternative is to fly to the various islands you are interested in and charter/rent boats there.
- - This is all predicated on the supposition that prolonged or intense stress would be harmful to your mate. If that is not the case then ignore the above.

[Drew13440]

Yea I'd consider a compromise that won't put you so far from help for so long - carribean maybe.

[cal40john]

Maybe you could talk to this guy for more information, he had a heart and kidney transplant.


Transplant Recipient Sails Around the World


Transplant Connect

[BlueWaterMD]

I work in an ER where we see a lot of transplant patients. A lot of the patients do very well, especially if compliant with their medications. Unfortunately, when there is a problem it is often not something that can wait days to weeks to get to appropriate medical care. These problems can be with the heart itself (including organ rejection), drug toxicity, serious infection which may not be controlled with oral antibiotics as she is immunosupressed from her antirejection drugs, as well as many other serious issues. Even if you can get to a doctor in the South Pacific, they probably have never seen a heart transplant and would have no idea how to handle it.

Do not stop sailing, but I would think about the risks of sailing through the South Pacific long and hard before undertaking such a journey. Also discuss this in depth with your Cardiologist before planning such a trip. Good luck with everything.

[fishwife]

Originally Posted by Roostre

the rest of her life.

She is down to 2 meds that must be taken each day. Mycophenolate mofetil which is a generic for Cellcept and TACROLIMUS which is generic of Prograf.

We would like to spend one year in the South Pacific (longer if the budget will allow).

How difficult/costly will it be to get these medications:
1. In major ports in the S. Pac?
2. By having them shipped to us while there?

Hi,
As you are aware, the two drugs your wife requires are anti rejection compounds and it's not going to be good if she can't get them.

The availability of these drugs is not going to be good anywhere off the beaten path so I'd find out the maximum shelf life of each drug. If it's over a year I'd suggest that you take them with you.
Shipping medications is fraught with difficulties. Working in poorer areas, I have experienced medicines being deliberately 'lost' and then hearing that they may be available at a very high price via a questionable source.

The other thing you both need to consider is your wife's increased susceptibility to infection and how you will cope with that if it should occur in an area with poor or none existent medical facilities.

These are general points, your wife's medical adviser is the person to address her particular needs.

Purely from my own point of view, if I'd had a heart transplant and been granted a new lease of life, I'd go cruising. I'd be sensible and reduce the risk of wasting the gift I'd been given, but I'd go.

P.

[speciald@ocens.]

I have a few heart problems myself buy not as complex as those of your wife. Our insurance company has allowed us to get 6 months supply of my meds at a time (but not without initial hassle). Also it is important to carry a copy of her prescriptions with you should any customs agent question the drugs. Thirdly don't travel without medical evacuation insurance. It should cost about 3-400/ year and may also be supplied with high end credit cards like Mastercard World Elite.

[Auspicious]

I'm not a doctor, just a guy who gets paid to solve sometimes complex problems.

If you want to go I think you should go. Talk to the doctor and understand the risks and complexities. Talk to the manufacturer of the meds needed and fully understand how long the shelf life is. If anything needs to be refrigerated look at your systems and provide redundancy - perhaps triple.

best of luck, dave

[osirissail]

I didn't know all the implications mentioned by others above and the BlueWaterMD of transplant recipients. So I would revise my recommendations to definitely never do an extended water passage with her - although I do have cruising "couple" friends where the man sails the boat to the new locations and the wife flies in via airlines to join him in the new destination.
- - But I would seriously suggest only doing locations where you are within range of med-i-vac capabilities. You might investigate the D.A.N. insurance at: DAN Divers Alert Network
to see if that type coverage might be of value to you.
- - Of course, coastal cruising and especially the Gulf of Mexico and eastern US seaboard is quite enjoyable and never boring. In the Caribbean, I would be hesitant to go anywhere but the major islands like Puerto Rico, USVI & BVI and maybe the French Islands.
- - Of course, all of this is offered with a lot of concern for her well-being - but - in the end that is totally a decision only she can make as to how far to stray away from "safety" systems. It is her life and you and her need to decide how far to "push the envelope."
- - Also currently there is a increasing incidence of Dengue Fever in the Caribbean and south coast of the U.S. and Florida. That stuff can be real nasty. The reluctance of governments to use "full strength" insecticides by airborne spraying is allowing the situation to escalate with 6 deaths so far this year in Trinidad and over 300 confirmed cases in hospital. The other islands are having a proportional increase in cases and some deaths. South Florida is also reporting significant numbers of cases.

[Roostre]

Wow! Loads of great advice and opinions already!!

Thank you.

Originally Posted by Aaza Dana

Firstly - when my Dad was diagnosed with Cancer, he stopped travelling. He put this down to not being able to get affordable travel insurance with his condition, and a fear of losing his house if a plane had to do an emergency landing because of him! I have issues with this philosophy, since I believe life is for living, so who needs a house, and screw what's left in the inheritance. That's probably not relevant!

AH, but it is EXTREMELY relevant! We agree 100%!! (The kids are raised and out on their own for a few years now and both doing nicely.)

Originally Posted by Aaza Dana

BUT - will insurance be an issue for you guys? Is she likely to need medi-vacuation? How much extra premium will you have to pay due to the existing condition? These things add up, if you can afford to pay them.

Our initial brainstorming on this was to brush up on COBRA and see roughly what the costs would be for a year and how long until it expires. A bit of calling around and it will be $600 to $900 per month and could be purchased for up to 2 years.We have been at this insurance game so long that we are used to absorbing the costs into our budget... we'll likely never be rich and I doubt that the american dream retirement will ever be anything but a fantasy in our situation. This is one big reason we are contemplating taking the risk now why we are BOTH healthy and young enough to enjoy it.

Originally Posted by Aaza Dana

Importing medications shouldn't be a problem, if you have the correct prescriptions. But how about stopping off in S.America and collecting a year's worth there? I hear it's quite cheap there....

I keep hearing such rumors, but is there anybody out there that can confirm this for certain?

[Roostre]

Originally Posted by BlueWaterMD

I work in an ER where we see a lot of transplant patients. A lot of the patients do very well, especially if compliant with their medications. Unfortunately, when there is a problem it is often not something that can wait days to weeks to get to appropriate medical care. These problems can be with the heart itself (including organ rejection), drug toxicity, serious infection which may not be controlled with oral antibiotics as she is immunosupressed from her antirejection drugs, as well as many other serious issues. Even if you can get to a doctor in the South Pacific, they probably have never seen a heart transplant and would have no idea how to handle it.

Do not stop sailing, but I would think about the risks of sailing through the South Pacific long and hard before undertaking such a journey. Also discuss this in depth with your Cardiologist before planning such a trip. Good luck with everything.

Thanks for your response. She has had a few scary episodes with infections on land. At sea would not be good.

You would be surprised how many US doctors have never seen a heart transplant patient and have no idea how to handle it!!

[Roostre]

Originally Posted by fishwife

Hi,
As you are aware, the two drugs your wife requires are anti rejection compounds and it's not going to be good if she can't get them.

The availability of these drugs is not going to be good anywhere off the beaten path so I'd find out the maximum shelf life of each drug. If it's over a year I'd suggest that you take them with you.
Shipping medications is fraught with difficulties. Working in poorer areas, I have experienced medicines being deliberately 'lost' and then hearing that they may be available at a very high price via a questionable source.

The other thing you both need to consider is your wife's increased susceptibility to infection and how you will cope with that if it should occur in an area with poor or none existent medical facilities.

These are general points, your wife's medical adviser is the person to address her particular needs.

Purely from my own point of view, if I'd had a heart transplant and been granted a new lease of life, I'd go cruising. I'd be sensible and reduce the risk of wasting the gift I'd been given, but I'd go.

P.

That is the 'rub' as they say!

[Roostre]

Originally Posted by speciald@ocens.

I have a few heart problems myself buy not as complex as those of your wife. Our insurance company has allowed us to get 6 months supply of my meds at a time (but not without initial hassle). Also it is important to carry a copy of her prescriptions with you should any customs agent question the drugs. Thirdly don't travel without medical evacuation insurance. It should cost about 3-400/ year and may also be supplied with high end credit cards like Mastercard World Elite.

Good advice! I currently have a North American medivac policy that only runs about $210/yr. (Motorcyle adventures.)

[Roostre]

Originally Posted by osirissail

I didn't know all the implications mentioned by others above and the BlueWaterMD of transplant recipients. So I would revise my recommendations to definitely never do an extended water passage with her - although I do have cruising "couple" friends where the man sails the boat to the new locations and the wife flies in via airlines to join him in the new destination.

A good option- My initial thought were very much along these lines. It may be the only sane way!

Originally Posted by osirissail

- - But I would seriously suggest only doing locations where you are within range of med-i-vac capabilities. You might investigate the D.A.N. insurance at: DAN Divers Alert Network
to see if that type coverage might be of value to you.
- - Of course, coastal cruising and especially the Gulf of Mexico and eastern US seaboard is quite enjoyable and never boring. In the Caribbean, I would be hesitant to go anywhere but the major islands like Puerto Rico, USVI & BVI and maybe the French Islands.

Will look into medivac capabilities.

It seems like the Eastern seaboard would be expensive/crowded... we're not real 'touristy' and like to get off the beaten track when we travel.

Originally Posted by osirissail

- - Of course, all of this is offered with a lot of concern for her well-being - but - in the end that is totally a decision only she can make as to how far to stray away from "safety" systems. It is her life and you and her need to decide how far to "push the envelope."
- - Also currently there is a increasing incidence of Dengue Fever in the Caribbean and south coast of the U.S. and Florida. That stuff can be real nasty. The reluctance of governments to use "full strength" insecticides by airborne spraying is allowing the situation to escalate with 6 deaths so far this year in Trinidad and over 300 confirmed cases in hospital. The other islands are having a proportional increase in cases and some deaths. South Florida is also reporting significant numbers of cases.

Thanks for the advice and heads up on Dengue Fever. Surely not something an immuno-compromised person needs to mess with!