Alpha-1 COPD and Infusions

[marelind]

Is there anyone out there who infuses Alpha-1 replacement therapy (Prolastin, Aralast, Zemaira) while they cruise? DH infuses once a week and while we cruise he skips his treatments. We have a nurse who comes to the house to start his IV, and he is understandably cautious about who starts his IV. I was just curious if there is anyone out there who has an alternative to skipping treatments. We are taking a 17 day cruise with two additional days on the front end, meaning he will skip for over almost 3 weeks.

[krisnme]

I don't know your answer, but I hope someone does as I am curious as well, Mom is going to start infusions soon and I hope she does not have to stop cruising. I have wondered if it could be done by ships medical staff.

[marelind]

Hi Kris! What our doctor has told us is to go and enjoy the cruise, and don't worry about the infusion. It is not crucial to have the infusions every week, but that overall having them consistently is the main thing.

 

DH has been infusing since 1994 when he was diagnosed. Early on, some suggested having a double treatment, i.e., infusing twice as much every other week, would be as good as a weekly treatment. So he used to have a double dose before a cruise or trip. They backed off that and said there is no research that supports the double treatment.

 

He/we aren't that worried about skipping treatments, but just thought I'd ask if anyone does have a way to infuse. I have talked to people who infuse themselves by starting their own IV. I have even suggested that I learn how to start the IV, but DH will have none of it. Gee, I wonder why?? :D

[kitty9]

Is there a reason why he can't do his treatments in the medical center?

[marelind]

kitty9, I think that is my question... Is the ship set up to provide these services? My guess is that they would charge for those services, and then I wonder if the med insurance would reimburse. In addition, how much practice do they get in the medical center on the ship in starting IVs. It is a skill, and trust me, not everyone has the "touch".

 

I can guess, and I can ask the cruise line access desk, but I was looking for anyone who has some experience.

[kassimer1]

By starting IV's do you mean he has to get a new puncture every week? DH had to have an IV at home and they put a picc line in that stays in all the time and all we had to do was hook it to the pump. Is this a possibility for your DH. Any one could hook it up we had to change the medicine daily . We had a cruise booked thru RCCI and called the special needs dept and they said there would be no problems with this. Unfourtunetly we did not get to go on that cruise due to a medical emergency so i can't tell you how well they did .

[marelind]

By starting IV's do you mean he has to get a new puncture every week? DH had to have an IV at home and they put a picc line in that stays in all the time and all we had to do was hook it to the pump. Is this a possibility for your DH. Any one could hook it up we had to change the medicine daily . We had a cruise booked thru RCCI and called the special needs dept and they said there would be no problems with this. Unfourtunetly we did not get to go on that cruise due to a medical emergency so i can't tell you how well they did .

 

Thanks for your answer, kassimer1. DH does get a new puncture every week. Simply put, he will have these infusions every week for the rest of his life. The picc lines have to be replaced on a regular basis and there is a risk of infection. He has chosen not to go through the picc line route. I'm sorry you missed your cruise. :(

[marelind]

Here is the update to my original post. Just prior to our last 13-day cruise I called the NCL Access Desk and asked if the Medical Center on the ship would start an IV. The rep contacted the Medical Department who said that if we had all the supplies needed they would start the IV for us and then charge us the customary fee. DH opted not to do this for the 2 week cruise.

 

However, we just booked a 34-day cruise. DH has opted for me to learn how to start an IV. :eek: We shall see how this progresses! ;)

[marelind]

And another update:

DH and I want to take a 32-day cruise in 2016. Since finding out that he could arrange with the Access Department to have his treatments on board, DH asked if I would be willing to try to learn to start his IV. I was surprised because, after infusing for 21 years he is very particular about who starts his IV. Long story short, we asked our home health nurse if she would teach me, and she agreed. I started learning fall of 2014, had some success, then a really rough patch. I read a couple of websites, understood what I was doing wrong, and have been successful for a few months now.

 

We are now at the point where I will let the Access Dept. know that we are bringing supplies on board and that I will start him. We will see how that goes...

[MandD]

Glad to read that you've resolved this problem.

 

I have even suggested that I learn how to start the IV, but DH will have none of it. Gee, I wonder why?? :D

 

Your comment reminded me of an experience I had when I was 16. My dad needed to have antibiotic injections (IM not IV) and I was selected to give them. Dad took one look at me with the syringe in my hand and bolted, locking himself in the bathroom.

[xxoocruiser]

Is there anyone out there who infuses Alpha-1 replacement therapy (Prolastin, Aralast, Zemaira) while they cruise? DH infuses once a week and while we cruise he skips his treatments. We have a nurse who comes to the house to start his IV, and he is understandably cautious about who starts his IV. I was just curious if there is anyone out there who has an alternative to skipping treatments. We are taking a 17 day cruise with two additional days on the front end, meaning he will skip for over almost 3 weeks.

 

Personally would NOT make the decision to postpone infusions based on information provided from the experiences of others on this forum regardless of the fact that their replies were given with good intentions. The decision to forgo infusions during the cruise should be discussed with your DH's doctor.

[marelind]

Glad to read that you've resolved this problem.

 

 

 

Your comment reminded me of an experience I had when I was 16. My dad needed to have antibiotic injections (IM not IV) and I was selected to give them. Dad took one look at me with the syringe in my hand and bolted, locking himself in the bathroom.

 

I can only imagine what was going through his mind, probably seeing you as a 3 year old with the syringe. :D

[marelind]

Personally would NOT make the decision to postpone infusions based on information provided from the experiences of others on this forum regardless of the fact that their replies were given with good intentions. The decision to forgo infusions during the cruise should be discussed with your DH's doctor.

 

I agree completely. If you read through the entire thread looking at the dates posted, you will see this has been a 3+ year process. We have walked through the process with the doctor and would not act on what is written here without consulting him. I started the thread to find out what others did. I have added to it to share our journey in case it could be of use to others.

[stsbj]

What about posting on your roll call or the cruiseline ' s thread and asking if there are any nurses, doctors or paramedics who are skilled in IV insertions and are willing to help you out. If you know how to run the infusion, and just need an IV inserted, there my be people willing to help. I'm an RN, and would definitely be willing to help someone with something like this. You could ask for their credentials ahead of time and check things out.

[marelind]

What about posting on your roll call or the cruiseline ' s thread and asking if there are any nurses, doctors or paramedics who are skilled in IV insertions and are willing to help you out. If you know how to run the infusion, and just need an IV inserted, there my be people willing to help. I'm an RN, and would definitely be willing to help someone with something like this. You could ask for their credentials ahead of time and check things out.

 

That's a great idea! Now that I've learned how to insert the needle/catheter, etc., I won't need to do that, but 3 years ago that would have been a great resource. Maybe this thread will help someone else who needs that.

[parlsmith]

I just wanted to let you know that this thread has been helpful to someone else. My husband and I have been cruising for about 10 years now and I was just diagnosed a month or so ago and should start replacement therapy soon. One of our first thoughts/questions was what are we going to do when we go on a cruise. We typically have a few days on the front and back ends so a 1 week cruise = 2 weeks away from home. My thought was maybe finding a medical facility near the port that could do the infusion. It is good to know that having it done on the ship is also an option.

[marelind]

I just wanted to let you know that this thread has been helpful to someone else. My husband and I have been cruising for about 10 years now and I was just diagnosed a month or so ago and should start replacement therapy soon. One of our first thoughts/questions was what are we going to do when we go on a cruise. We typically have a few days on the front and back ends so a 1 week cruise = 2 weeks away from home. My thought was maybe finding a medical facility near the port that could do the infusion. It is good to know that having it done on the ship is also an option.

 

You made my day! Check with your cruise line to be sure. As you can see we primarily sail on Norwegian. Other cruise lines may have different procedures.

 

Are you connected to the Alpha-1 Association and Alpha Net? They are a great resource - have saved our bacon a time or two.