Wednesday, July 10, 2013

Cruising along on dialysis

In the last update on Mom she was recovering nicely from her June 11 surgery to take care of an infection in her abdominal wall muscle and remove a piece of surgical felt that had been purposely left in place when her peritoneal dialysis catheter was removed in October of 2012. Thank goodness that infection and surgery occurred when it did, because that gave Mom some time to heal before going on a 7-night Caribbean cruise.

"A week-long cruise? But isn't she on dialysis?" Yes, normally a cruise longer than a couple of days would be out of the question for a dialysis patient unless they arranged to have dialysis at ports where the ship docks. But fortunately last year we found out about a company called Dialysis at Sea ( which selects specific cruises and staffs them with medical personnel and dialysis equipment, allowing patients on hemodialysis to book a room through them so they can go on a cruise. Earlier this year we booked a cruise on Royal Caribbean to the eastern Caribbean, and we sailed out of Ft. Lauderdale, FL on Sunday, June 23.

Mom had previously requested wheelchair assistance to board the ship, since it is a pretty steep walk up the gangway to board. Once we were on board she was able to walk around, although she did get out of breath fairly easily, especially when walking long distances. Since this ship (Allure of the Seas) is the largest passenger cruise ship in the world (until next year), there were plenty of opportunities to walk long distances.

We met the Dialysis at Sea staff at a mandatory meeting the evening we set sail. The staff consisted of a nephrologist (Dr. R), a nurse, and a tech. They went over some logistics on where to go for dialysis (ship's medical facility on deck 2), made sure everyone knew when they were supposed to go, and answered any questions. There were only a total of six dialysis patients on this cruise, which is fewer than they usually have. Mom's dialysis was scheduled for 6:00 AM on Tuesday, Thursday, and Saturday.

At the beginning of the trip Mom said she was getting winded with minimal exertion, such as walking long distances. She did a lot of walking on the ship Sunday and Monday, and at first she was feeling ok and thought the walking was doing her some good because her blood pressure was staying down. But at some point she noticed her legs were very weak, so maybe she walked a little too much. We did get a wheelchair in her room on Monday, and I started pushing her around in it when she had long distances to go on the ship. She was able to walk off the ship and take tours when we docked on Monday (Bahamas) and Wednesday (St. Thomas). There were no issues with dialysis on Tuesday or Thursday, but she did ask them to remove more fluid on Thursday because she was noticing some swelling in her ankles (edema), which has never been an issue with her before. And then Friday happened.

June 28, 2013: Mom and Cathy both had appointments in the salon/spa Friday at 6:30 PM. After taking Mom there in her wheelchair I went back to our room and waited until they were done so we could go eat dinner. Cathy called me around 7:45 PM and asked if I could come get Mom and take her to the medical facility because she was having trouble catching her breath. The salon was on the same level as our room, but at the opposite end of the ship. I arrived and found Mom sitting in one of the chairs where she had been getting a shampoo. Her hair was wet and she was leaning forward because it hurt her chest to lean back. We got her in the wheelchair and headed for the medical facility, which was on deck 2 at the opposite end of the ship from the salon. One of the salon workers went with us so we could take the elevator down to deck 2 and then use the employee corridor to reach the medical facility. I told Mom that was our behind the scenes tour of the ship, which normally costs $150 per person.

The employee corridor is wide enough for a car to easily drive through, and it even has a yellow striped line down the middle like a two-lane highway. (I knew from a TV show Cathy and I had watched several months ago that it's referred to as I-95.) As we were going down the corridor Mom got progressively worse, saying her chest was hurting more and more. I wanted to go faster with the wheelchair but since the floor did have an occasional bump or rough spot, I was afraid I might dump her out, especially since she was leaning forward due to the pain. It seemed to take forever to get to the medical facility, but we finally arrived. It was after hours, so the salon worker used the phone there to contact the nurse on duty. There was a sink in the waiting area for hand washing, and I wheeled Mom over there when she said she felt like she was going to throw up. She spit up a little bit and put some wet paper towels on her face and forehead for a little relief. I knew the situation was getting serious at this point.

We went inside and got her on a bed in the examination room. The nurse hooked her up to an oxygen sensor and a blood pressure cuff, put an oxygen mask on her, and then drew some blood. Mom was in a lot of pain at this point, rating her chest pain as 10 on a scale of 1 to 10. She was almost constantly moving trying to get comfortable. I was feeling helpless and more than a little concerned at this point, since I thought she might be having a heart attack. I knew the best thing for me to do was answer questions and stay out of the way.

The nurse gave me some paperwork to fill out, and when I got to the part about medications and allergies I asked the nurse if I could go to my room to get a copy of Mom's medication and allergies list. So I did that, and the doctor arrived shortly after I got back. I believe one of the first things he did after assessing the situation was to give her a nitroglycerin tablet. He asked me lots of questions about her medical history (when did the chest pain start, how long on dialysis, is she diabetic, what caused the kidney failure, is she producing urine, etc.). They put a CPAP mask on her to assist with her breathing, and slowly her blood pressure and pulse rate came down. It seemed like the doctor asked her about every 60 seconds if the pain was going down.

At some point they started trying to contact the Dialysis at Sea staff, and the nurse was the first to arrive. The ship’s doctor realized that the problem was fluid on the lungs, and just giving her Lasix (furosemide) would not be the appropriate treatment since it would take too long. So it was looking like they would get her started on dialysis as soon as possible. The nurse spoke to the dialysis tech on the phone, and she found the nephrologist, Dr. R. He arrived around 8:45 PM, checked Mom out, and consulted with the ship’s doctor. Dr. R suggested to me that Mom see her cardiologist when she gets home because she should not have been in that much distress given the amount of fluid on her lungs. The dialysis nurse and the tech were getting the dialysis machines set up while all this was going on.

They did a chest x-ray to make sure there was not something more serious to cause the fluid on the lungs, and then they got Mom started on dialysis around 9:30 PM. The doctor said they would probably do two hours, depending on how things went. Cathy and I went to the 24-our cafe to get some food, and I went back to the medical facility around 11 PM. The nurse said they pulled three liters of fluid off of her. They had to stop the dialysis after about 90 minutes instead of two hours because Mom’s legs started cramping very badly. They said they wanted to delay Mom’s Saturday dialysis session from 6:00 AM to 9:30 AM, to give her body a little time to stabilize.

I wheeled Mom back to her room and she immediately crawled in the bed, put on her CPAP machine, and went to sleep.

I took Mom to dialysis Saturday morning and came back a couple of hours later to see how it was going. The nurse said there was still some fluid in her lungs, but nowhere near as much as last night. I asked if there were any concerns about Mom flying back home tomorrow, and she recommended that Mom wear her compression stockings during the flight to help with the edema in her legs. I also asked her how often they have emergency dialysis sessions like this on the Dialysis at Sea cruises. She said she has been doing these types of cruises for 20-something years (I think she said 27), and this was the third time for her. So once again, Mom is very special.

That afternoon I took Mom back to the salon so they could finish her shampoo and hair styling. The salon workers were very happy to see her looking much better than when she left there Friday night. The cruise ship docked in Ft. Lauderdale Sunday morning, and we flew home Sunday afternoon without any issues. (Even though Mom had wheelchair assistance at the airport, she still got very tired just walking from the front of the plane back to her seat in row 26.) Hopefully this fluid episode is behind us and things will get more stable after Mom starts dialysis at home again. Stay tuned . . .


  1. Your Mom is amazing! What a warrior. We are looking forward to seeing you in October.
    Your blog contains so much information. It is something that I would have liked to do, but I got caught up in too much complaining.
    My three year anniversary is this month. So far,so good. The doxycycline sounds interesting though.

    1. Thanks Cathy. It's so nice to have a non-spam comment for a change. ;-)

      We're looking forward to October also. I hope Dr. Berk presents something about doxycycline, even though it's early in the clinical trial. I'm very curious about how well it breaks up amyloid deposits in the glomeruli of the kidneys, since that's in the bloodstream and it is what clogs up on us Afibs.

      Congrats on the three year mark with the new liver. It sounds like you are treating each other well.