This topic has been first and foremost in my head since the day AFTER I arrived at the hospital for my stem cell transplant. And every time I sit down to draft this I get a big block and can’t figure out what to say first. I’ll thank my mother for helping me start to throw my ideas down on a table and flesh out what I want to say and now I’m finally sitting down to start drafting my post. There are a number of readers that are either just starting or getting ready to start their own transplant process. I am hoping that what I write here is in some manner helpful. I will post to get something out there as there is an immediate need. However, I will also update and edit, leaving this as a work in progress. I would also ask that those of you that have been through the process, please tell me what YOU would do differently. Not just for my sake but for the roughly 700 unique visitors to my blog weekly. I don’t have a large following but I’ve been amazed at how many people read and respond and the global reach of the blog. But that’s not what we’re here to talk about….
WHAT WOULD I DO DIFFERENT?
Overall, think small quantities. Going in I was thinking I wanted water and gatorade. I drank lots of water but lost the taste of gatorade after the second day. If you have someone visiting, they can always bring you more but think small quantities, variety and flexibility.
Clothes and other “hardware”
You’ll need underwear and you’ll need lounging clothes. I brought a pair of shorts – never wore them. The hospital will not do laundry and you’ll not want to wear a “drafty” gown. I recommend (for guys but I guess they’ll work for girls as well) Hanes 100% cotton lounge pants (target/walmart underwear aisle). they have a drawstring – you will lose weight! If you have someone who can help you do laundry then bring enough for four days and have them take and wash the dirty clothes every two days. That’s four under garmets, four shirts (loose t shirts) and I would say three pants but I only had two.
Scarf and hat – they recommend you bring but I wore the scarf once and the hat, only for pictures. This is dependent upon the hospital – how cold is your room, etc.
Slippers – you can bring socks, I would recommend they be 100% cotton and ‘breathe’ but slippers you can take on/off and will help make it easy if you want to go for a walk. I almost never wore socks in the room – my feet were too hot.
A “Husband Pillow” (see images here) that can be used in bed to give you better support when you want to sit up. In my room I had a chair and a bed. I also had a table which would raise/lower so that you could eat/work/play on the table while in bed. However, if at the chair, the lowest setting of the table was too high and typing on a laptop was uncomfortable. For that reason I would also consider bringing some sort of pad for the seat as the chair itself was uncomfortable and not a good spot from which to work.
Your “toilet kit” – you can’t use a razor, you won’t need vitamins or aspirin. Do bring deodorant, body wash and shampoo. You will smell – they say garlic, I say rancid! Bring stuff to cleanse yourself. It won’t work (you’ll still smell it) but you will feel better. Be prepared for a miserable shower as well and you can’t get your pic line wet. Mouthwash – you’ll want to keep things clean and avoid mouth sores. I recommend TheraBreath and it was cleared by my docs – it’s a no alcohol mouth wash but does give a good cleaning and is similar to the bi-carb mouthwash the hospital uses. You will NOT be able to use any mouthwash that is alcohol based. You will also want an extra soft toothbrush and mild toothpaste. I would also recommend having Aquaphor for dry skin – this is good stuff and the hospital may be able to prescribe it for you.
– Your kit needs: deodorant, body wash, shampoo, an EXTRA SOFT toothbrush and very basic toothpaste (not too minty), TheraBreath mouthwash, baby powder and Aquaphor. I’d like comments from anyone if they think there should be more.
Food and appetite
The hospital food is horrible – if you have a better experience, please let me know! Talk to your nutritionist and find out what you can and cannot bring to the hospital. Also confirm if you will have a refrigerator in the room or available to you on the floor. Remember, your tastebuds will change. Ginger Ale will sound great, until after the first few sips, then it will be syrupy and sweet. Someone recommended Fruit Loops which were great, the first day – now I have an entire box of FL! Remember, think in small quantities. Also think about what’s being done to your system. I am currently (as of 20 Feb 2013) Day 21 and my “processing system” is still not back to normal. You may be constipated and you may be loose – think of foods that can assist in those areas. Additionally you will lose weight. You may want to lose weight but this isn’t hte way to do that! There will be days when you can’t eat but for when you can, have stuff on hand so you’re not reliant on hospital food.
Here are some recommendations on foods.
– instant rice – Here is an example – this is microwaved for 1 minute and sits for another 1 minute. It’s bland but it’s filling and you can add your own condiment or sauce if desired. Just be cautious with spicy sauces! Great for ‘binding’ food (if you’re loose).
– apple sauce – plain, not cinnamon – get a few of the single serving and try to get apple sauce, not manufactured “apple flavored mush”, in other words, avoid the chemicals if possible.
– dried fruit and jerky – dried mango, dried apples, dried apricots – just be sure to get the dried fruits that are simply dried fruits. Look at the ingredients, it should say “mango” and nothing else, no sugar, sulfite, etc. Then you’re getting good (for you) dried fruit. I would also recommend beef jerky – this may not be of interest but it is salty and loads of protein. Avoid the ‘flavors’ or get in small quantities.
– string cheese – just a few and only if you have a ‘frig. I didn’t eat much of this but it was an easy and simple snack. Again, I’d go for flavor so do NOT get “skim” or low fat string cheese – I want it fat and salty! :)
– Ramen noodles – keep it simple, no spicy noodles, but ramen is easy to make and has a strong enough flavor that you can taste it.
– saltines – need I say more? The quintessential sick food!
– Cereal – if you can get a variety pack of basic cereals (cheerios, raisin bran, etc.) that would be great. Single servings and offering a variety of options. Also, these cereals can be eaten with or without milk!
– Smart Water – you are going to want to drink water. SW offers water with electrolytes. I brought gatorade as well but after the first day or so it was just too sweet. Make sure the docs know how much you’re drinking as they measure input and output (what you put….out…into a bottle….) As you’re going to be on an IV for fluids they know how much is going in. with me they were putting about 3k in but getting 10k out – I was drinking 4L of water per day. That was usual for me. Bottom line, I like the water with electrolytes and no taste or sweeteners.
– mints or similar – Altoids were too much but the mini Altoids would be fine. TicTacs would also work. You can also bring Halls cough drops but I would veer towards cherry rather than the old fashioned mentholyptus version. Bottom line, most sweet things will feel syrupy and leave a taste in your mouth.
This is a part of the process upon which I wish I had placed focus. When I returned home after Day12 I went right back to my regular ways and walked about 2.5 blocks. At the end my hands were on my knees, I was coughing and I really thought I was going to have a heart attack (and I have NEVER felt that way.) I believe it was because I had done nothing, absolutely nothing! That is something I would force myself to change!
– walking – when you’re allowed out of the room, take advantage and just walk around, even if it’s in circles.
– yoga – Lisa D told me she’s walking 75 feet, three times per day and also doing some light yoga in her room. I think this is a great idea but if you don’t know/do yoga, then basic stretching is also something to consider:
* touch your toes (feet together, without bending your knees)
* torso twist (hands on hips, turn upper body as far to left as possible, then far to right, repeat)
* leg lift (stand and lift leg up so that knee is as high as waist, bring down, repeat 10x, switch legs)
* calf lift (stand, feet together, go up on toes to stretch/work calves, return (slowly) and repeat)
* single leg stand (works your hips, balance on one foot, try for 30 seconds, repeat other foot, if this is too easy try rotating body, towards foot you’re balancing on)
* alternate leg lift (sit on edge of bed and lift legs, straight with toes pointed, to height of bed and bring down slowly, repeat 10x and do other leg.
All of these are very basic, very simple exercises I’m either making up or remembering from my workout days! I’m not a physio, not a doctor, these are very basic ideas but you know your body – you need to gauge and do what you can. I would love other suggestions. At the end of the day – keep your body fit when you can. Keep nimble and keep active, don’t do like me and sit in bed for 7 hours watching Swamp People! :)
** Update – (compliments of Kim’s husband’s bout with MM)
– Daily Goals – they had a whiteboard in the room and he set his daily goals. How much he would eat that day and how far he would walk that day. The hospital had given him distances so that he could walk XX number of times around the ward and it would equal a mile. His daily goals were: 2 miles/day, 2 liters of fluids per day, 2 meals per day. I think this manner of thinking is wonderful!
The Help (whether you want it or not)
You’re sick or you’re a caregiver and all your friends will feel bad if they don’t do something for you. And they’ll keep asking or they’ll just show up with a plate of food that you’re not allowed to eat! Or you’ll get flowers or stuff that a) you didn’t ask for and b) probably don’t want or need. They’ll feel better and you’ll have to deal with it – unless of course, you Manage The Help! People will want to help and as either the patient of care giver you can accept this (take advantage of it) or not. My direction to my wife was take advantage of the situation, don’t try and carry the world on your shoulders. When people ask what they can do to help, instruct them and don’t feel bad about it:
* can you pick up / drop off my dry cleaning?
* can you take the kids for two hours on Wednesday so I can do some shopping
* what, you’d like to go shopping for me? Here’s $40, can you get me bread, milk, ….
* I would love chocolate chip cookies
* that’s so nice that you’ve offered to make chicken but I can’t eat chicken, can you do a meatloaf?
* YOU GETTING THE IDEA? Take advantage of the situation and manage the help!
As the patient, you should also take advantage of the situation. When my brother, parents spouse came to visit I would try and think of very specific things I wanted: water, gatorade, string cheese, a tall skim latte, a bagel toasted with butter (they have to buy the bagel and toast it at home, you can’t get it from the restaurant). They want to help, it will make them feel better and you’ll get what you want.
This will be explained to you by your doctor but the calendar is essentially the same for everyone. The day you get your cells back is “Day 0” (this entire section is referencing an Auto Transplant, an Allo may be similar but not necessarily the same and you would need to confirm with others and your doctor the differences that may apply). The significance of this is that the doctors will reference these dates as a guideline for where you stand or where you should be in the recovery process. For me the timing was as follows. I’ll note below that a friend of mine had a different time frame as her SCT was 4-5 years ago.
Day -1: This was the day I arrived at the hospital. This was the day my pic line was inserted and that evening I received my Melphalan dosage. This could change for you depending upon where you’re having the procedure done, etc. I have a friend who’s arrival date was day -5 as they waited four days AFTER the Melphalan prior to doing the transplant but that was four years ago. I know someone else that went into hospital last night (19 Feb) but won’t have the Melphalan till potentially Thursday. Important part here is working back from Day 0.
Day 0: the day you have your stem cells transfused back. This is usually 12-24 hours AFTER the melphlan. For more details on this see my post here. This is also your “birthday” so I was told!
Day 1: I was beat – from everything that happened day -1 and day 0 I was just beat.
Day 2 through 4: This is no-mans land, you’re not really wiped out and your numbers are starting to drop but, for me, it was still not too bad.
Day 5 through 7: I think I got into bed around 18:30 on day 4 and didn’t really get out of bed till the evening of Day 6. It wasn’t really till Day 7 that I felt I was turning a corner.
Day 8 through 10: you’re starting to come back and I felt like I had turned a corner but it’s important to remember you have near 0 immunity – you need to be cautious and keep up the stuff they tell you to do (in other parts of this post I’ll identify that.)
Day 11 through…: This is the point where you are starting to recover. For me, my numbers were at a “passable” state. Ask your doc what they’re looking for to make you eligible for discharge. They’re going to be watching platelets (ability to coagulate your blood), white blood cells (immunity) and neutrophils (also immunity). If you have no other occurrences (infections, cold, pneumonia, etc.) then you can be looking at a potential discharge between Days 12 and 15. If you have other complications then your time frame is going to be dictated by that. Which brings me to the next topic….
Listen To The Docs
You’re going to get lots of drugs. Learn what they are and what they’re used for. The goal is to get you through this process. This process is tought on your body and the docs, more importantly, the nurses, will help make sure you’re doing ok. But certain things you’ll need to do. Here’s a quick run down of what I had and why. I will be updating a more specific description of each later on my other page but for now here’s my thoughts.
– Nystatin – the doc is most likely going to give you this in hospital. This is EXTREMELY important. This prevents fungal bacteria in the nether and more ‘swampy’ regions! There should be an ointment that is applied to the rectal area (with bacitracin) and a powder that is applied down below and under the arms. where other people being sick can be an issue for you, it’s the stuff your own body may produce that could be lethal (causing a staff infection). Make sure you use the Nystatin – as miserable as it is – it’s a great precautionary measure. It also comes with a mouthwash – more like mouth paste! You rinse and swallow (tastes a bit like butterscotch). It coats the gums/mouth and also prevents bad bacteria in the system.
– Zofran – anti nausea med, they gave this to me twice a day (morning/evening). They only day I got sick was the day they were going to take me off the zofran and I threw up miserably. This will help you manage the nausea.
– Protonics – this is like an antacid (zantac, prilosec).
– Accyclivir – anti-viral – will protect you against shingles
– Levaquin – anti-biotic – protect against non-viral issues
– Benadryl – got it during the transplant, as a pre-med, to protect against any allergic reactions to the preservatives used to keep your stem cells. This will put you to sleep.
– Ativan – wow – good stuff! This will knock you out – it’s a sedative, used to relax you. When used in conjunction with others it made me loopy and hallucegenic!
– Decadron – aka Dexamethazone – steroid – enough said!
– Oxy Codone – an opiate, pain killer. I had it on Day0 as the pic line was starting to hurt. OxyC in conjunction with the dex, benadryl, ativan, etc. helped me be hallucinogenic!
– Immodium – when needed
– Colace – when needed
I believe that’s the extent of the drugs I had taken and why. Coming home I still take the Accyclivir and the Protonics. Zofran I only took once since home.
Occupy Your Time
You’ll want things to do. You’ll need things to do. However, that will be based somewhat on the environment. I had my laptop and a dozen things I wanted to get done. But I didn’t have a place I could sit comfortably to work on the computer. I brought a cribbage board and a deck of cards – I played solitaire once, that’s it – again, the environment, it just wasn’t comfortable to play anywhere. I did read on my iPad. I did watch a movie or two on my iPad and macbook. I also had a small speaker (JamBox) that I would use to play music. Bottom line, you know yourself, have things ready: puzzles, word find, crosswords, sudoku, movies, books, knitting, whatever floats your boat! You will be board, find things to occupy your time and keep you mentally stimulated! I used my blog as a way to keep me occupied and everyone else up to date and found a bunch of people that actually enjoyed it Thanks to all of you.
I hope this is helpful and offers advice that’s of use and of interest. I would like to keep this as a work in progress offering suggestions from others on things they found useful or they would do differently while in the hospital for a stem cell transplant.
Please comment and please pass this along to anyone and everyone!