Tips and Suggestions for Surviving your SCT

I put together a list of tips and suggestions for anyone who will be going through a SCT. I am the caregiver for my fabulous husband Scott, who had his SCT at Prentice -Northwestern University Hospital in Chicago on May 3, 2012. The list also has contributions from other "Real Housewives of Prentice" that I met during our hospital stays...Hope it helps someone. You should get a social worker assigned to you by your hospital, if not, ask for one. They should be able to answer questions for you and help you. - Betty 5/10/2012

Housing

At Northwestern, one caretaker can sleep in the room with the patient 24/7. There is a pull out twin that doubles during the day as a bench. The hospital provided clean linens too. And if you ask for it, a foam mattress topper that makes the bed more comfortable.

There is also a "family room" that has spartan accommodations for free. In the family room there are two chairs that pull out into single beds, so 2 people can sleep there. You need to reserve the room via the nurse's station. First come, first serve.

Your hospital should have discount rates at area hotels for patients and family.

The American Cancer Society can also get you terrific rates at local hotels, in our case better than the hospital can. They actually called around to find available rooms for me and then I had to call the hotel with the confirmation number and give them my credit card.

Check your health insurance. Some cover lodging and transportation, or partially cover it.


Packing


If your hospital allows the caretaker to stay in the room, that doubles everything. Think small, Bev, a fellow real housewives  says don't over pack in case you have to leave the room. If you end up having cardiac issues, or appendicitis as her husband did, you will be shipped off to a different part of the hospital. You have to pack up all your stuff and go and they don't give you much time to do it. In my case they let us store several bags in the nurses station.

Put everything on wheels. We have wheeled luggage, but we have more stuff than luggage. I bought a wheelie wire shopping cart and that thing is a back saver. not only did we put misc. stuff in it for when we checked in, I use it for laundry and groceries....which you will see below.


Here is a list of things that I found helpful.

Clothes - ok I know clothes are helpful. The caretaker will of course need clothes, but the patient can choose to wear their own or hospital pants/gowns. My husband brought sleep pants and t shirts..whatever is most comfortable for them. 

Slippers for both of your are a must
Shower flip flops for the caretaker

Toiletries - The hospital provides for the patient:
soap
shampoo
hibacleanse (special cleanser)
lotions
razor and shaving cream (check with nurse before using)
toothpaste and toothbrush
antibacterial wipes/jel (it's EVERYWHERE)

You can bring your own, but my husband preferred  the hospital toothbrush because it was super soft, and the cleanser they make you use.

The caregiver needs to bring all their own toiletries.

Electronics
our room has a good sized flat screen TV but no dvd. We brought a wii and hooked it up. they did have a TV dvd/vhs combo that we could use. Check with your social worker. I would strongly suggest the wii, we never played it at home, but gave us something to do.

laptop/ipad etc. Our hospital had great wireless. I actually worked a few hours a day from the room to stetch out my FMLA time.

phones

ipod, music player, headphones

camera

chargers /cables/cords

small fan

powerstrip - there was not a lot of plugs, and this way everything was in one 'area' in the room


Miscellaneous - may or may not apply to you...
Coffee thermos/water bottle
Books/Magazines
Thank you cards/stamps/your address book from home
Calendar for the wall - they don't like you putting stuff up, but one pushpin is not going to hurt - right?
Putty for sticking get well cards to the wall. We had one strip that you could stick  about 10 cards in which quickly filled up.
Playing cards
Binoculars - we were on the 16th floor so it was great for the husband to be able to see what was going on out there.
Office supplies - pens/pencils/tape small scissors etc
Husband brought a fly tying kit for fly fishing. Any small hobbies like that.


Eating

The patient of course gets all meals provided. A couple things that we did not know right off...they have specials  - you have to ask for them. There is an additional super secret menu with a few more choices. They have smoothies every afternoon, you have to sign up of it. The nurses will bring the patient Popsicles or juice anytime. The patient should eat as much as possible. My hubby lost 40lbs the first time we were in and we are trying hard to just keep him at that.
We could bring food from outside for the patient, protein drinks like naked or bolthouse were good because low protein is a problem. We can order out any time, but check with your hospital. The nurses station here even has a binder with local restaurants that deliver.

Caretaker - We had a shared family room that had a microwave, coffee maker and full size fridge. you could put food in there and had to mark it with your room number. Bev suggests finding affordable places t o eat. I prefer finding a grocery within walking distance and getting easy things like yogurt, frozen mirco meals, pre made salads etc. If you plan to go this route, bring some plastic cutlery.
I have a coffee addiction. The family room had a coffee maker and coffee was supplied. Since you have to wash your hands every time you go in and out of any room, I just made a whole pot and put in my therms and brought back to the room. Foam cups were provided.

We kept chips, soda, Gatorade, non perishable snacks in the room.  This is where the cart with wheels comes in handy, soda is heavy..

The hospital cafeteria is the last resort for me. It is not that great, and is as much if not more than restaurants close by.


Bathing

The bathroom is for use by the patient only. There are men's and women's bathrooms down the hall for the caretakers and family. This is where you want your slippers. They don't wear the booties on their feet here (which I don't understand why not) so it is a super no no to go barefoot. When you get up in the middle of the night and wander down the hall, the slippers are nice.

The family shower room is for the caretakers. I highly suggest flip flops  - I got brand new ones for $1.99 at Walgreen's.

The hospital provided towels and washcloths for the caretaker.

Exercise

Patients are encouraged to exercise. They walk the halls with their IV poles. Here we have a shared exercise bike (make sure you wipe it down before and after and patients wear gloves) and a set of wooden stairs that patients go up and down.

Bev says the caretaker needs to find time to go for a walk and I totally agree. I run, and both my husband and I  normally bike, kayak, ski, snowshoe, fish, hike, and work out at the Y. Find out from your social worker if there are any fitness clubs that have discounts or if the hospital itself offers any classes. I found a groupon for yoga close by, and the Chicago parks department has a fitness center and running track 1 block from the hospital. Check with your social worker if this is something of interest to you, otherwise walking is free and easy and a good way to relieve stress.

We brought our Wii fit, which is kind of hokey, but there are some cute games that at least get you moving a little and pass the time.


Passing the Time

Movies - I found a redbox 5 blocks away
We have netflix on demand, which we watch on the laptop along with tv shows
START A BLOG - it is the best way to keep not only your friends and family updated and keep a record of your treatment. It is so nice to go back and see when things happened or what order they happed in. Family and friends love the blog. We love it because you would have to make 50 phone calls a week to keep everyone up and then you can't remember who you told what etc.
We use blogspot.com  many people use caring bridge. ours is www.sleist.blogspot.com if you want to check it out

Visitors

If people are coming from out of town, I think it best that they bring someone in case things take a turn for the worse and the visit is canceled. I had all my friend wear gloves and a mask to visit. Of course they cannot visit if they are sick. Little kids to me are a no no, since they are germ factories, but of course if they are your own kids you have to see them. Hand washing is a must.


Nurses

The Nurses are fantastic. We got cheese boxes shipped to them as a thank you, because we are from Wisconsin of course. Lots of people get them cookies etc. They really are saving peoples lives every day. They really like letters and mostly photos after you get home and recover.


Miscellaneous

All rooms are not created equal. We found this out during our first stay of 51 days. We had to move several times. Ask the nurses if there are any ''better" rooms opening up. In our case there is a corner room on each floor that is literally twice a big with windows along both lengths looking out over lake Michigan. We call it the trump suite, and have never scored it, but we did ask for a little bigger room and got it. It makes a huge difference.

The best advice for caregivers is from Bev. Find other caregivers to share with and support. I have 5 "wives"I have met and text them to see if they want to run to the store, or grab a coffee or need anything.

 Laundry - Here  at Northwestern they have an agreement with an apartment building a block away. I use the wheelie cart and found those washer sheets are much better than lugging heavy liquid soap around. I usually throw a load in and go walk or run while it washes.

1 comment:

  1. Hi Scott, Very interesting to read of your experiences. I have just had a stem cell transplant myself in New Zealand. The facilities are a lot more basic- probably because the Christchurch earthquake rendered the doctor's premises in NZ uninhabitable. he and his nurse travel to the North Island each week to see patients.The cost here is only eight and a half thousand NZ dollars. I am having good results. You might like to look at my blog at www.stemcellpatient.blogspot.co.nz

    ReplyDelete