The majority of questions I asked during the pre-transplant appointments were about housing. It was of utmost importance for us to have our duckies in a row for our stay after surgery. I realized afterward how grateful I was to have had that piece in place beforehand.
Through some internet research of hotels and visiting the area for pre-transplant appointments, we found a hotel that was ideal for our situation. Here are some of the things we considered in our search:
The NYC options we considered:
There were families that came up to me in the ICU waiting room after surgery, asking where I was staying because they hadn’t made arrangements yet! In combination with the emotional angst of having a loved one in an ICU, they didn’t know where they’d spend the night, or what their long term arrangements would be. You don’t want to be in those shoes if you can help it!
Some thoughts about lodging:
We preferred a hotel for several reasons. It’s not the cheapest option but, thankfully, we had funds from a family/friend sponsored fundraiser that covered the cost for us. It would be naturally more cost effective to stay with friends or family.
We resisted that choice because infection control is crucial after surgery. Because of a suppressed immune system, one has to be careful, particularly about sharing bathrooms. We also needed to minimize exposure to other people, particularly young children, so staying alone in a hotel room was best for us. It was also a very strenuous time emotionally for us, so we were thankful to have our own space, not having any expectations put on us by well-meaning friends or family.
Another positive of our chosen hotel was being able to stay in a suite. We had a stovetop, a microwave and a full refrigerator. Because a suppressed immune system requires extra diligence with food preparation (hot foods must be HOT, cold foods must be COLD), having a stovetop and microwave to heat food is a tremendous plus. Also, many of the IV medications needed refrigeration, so the full sized fridge was a must. We were able to shop at local grocery stores and prepare foods in a transplant-friendly way.
My husband was not allowed to eat fresh fruits or veggies of any kind for six months. No deli meat or cheese, no sushi, no undercooked meat. No grapefruit or pomegranate of any kind. Preparing our own food, rather than relying on restaurants, made compliance with these restrictions easier. We did ease into “eating out,” learning to make certain requests – in a tactful way – such as asking water to be served without lemon, meat to be well done, asking for his food to be served immediately, even if mine wasn’t ready yet.
The down side of a hotel is that it’s not personable. The staff at the Comfort Inn was amazing – friendly and helpful. But it was still a hotel and feelings of isolation and loneliness did set in. I have heard of situations available at other transplant centers such as longer term housing on the hospital campus for transplant patients and families. In Manhattan, such a service doesn’t exist, so we opted for the hotel.
There were a couple of other hotels that the hospital social worker gave us, but we preferred the one we found online that was a bit further outside of the City. The benefit of choosing one closer to the hospital in NYC is that shuttles are available if you don’t have access to a vehicle. Of course, shuttle times are limited, so you have to plan your day around those constraints.
There are other options that aren’t on the hospital campus itself, but are likely more affordable than a hotel. The Ronald McDonald house on the east side is an option and there is at least one other home similar to that that is a possibility. These options are worth considering, but arrangements have to be made through the social worker.
In Manhattan, transportation is always an issue as is parking. To avoid that, we have a friend who had a transplant at Columbia who rented an apartment in Manhattan, utilizing taxi transportation (public transportation such as subway is not permitted). But the bill was a whopping $5600/month for the apartment alone.