advice on how to get through a transplant

[IhaveAA.AAdoesnothaveme]

I am new to marrowforums. Recently I was scheduled to have a transplant on the 29th of June. But, unfortunately I recently broke my ankle. Even though the fracture isn't that severe my doctors have decided it is best to delay the transplant until the bones and ligaments are healed. I know that they know best. So, the new date for my transplant is July 25th, I have been asking questions but I feel that people that have gone through it have the best advice. Since I am 15 the idea of strict isolation really scares me, I love my friends and my boy friend and I can't stand the fact that I won't be able to see him very often, as he lives 2 hours away from the hospital. Also, I'm really curious on about strict the isolation is. They have explained things to me but, do they really enforce it? Also, I am incredibly close with my nephew and he is only 4. As far as he is concerned I know that he will likely not be allowed to visit. But, I am worried about the impact on him. I am almost like his big sister and not seeing him for that long, I know it will be hard for him. Other than skype, is there any advice for us. And also does it have to be a parent staying the night or would my 25 year old sister be good too? We are really close and I feel like her being there would put a smile on my face once in a while.

Thank you in advance

[cathybee1]

Hi there,

I can't respond to any of your questions, but I wanted to let you know that your msg didn't go into a black hole somewhere! The thought of being by myself during something like this would be very scary to me. Yours are all very good questions, and there are a lot of people here who have gone through transplants. We're from all over the world, so it may take time for folks to respond to your questions. We're glad to have you with us.

[mausmish]

Hello and welcome! There's no easy answer to your questions because each facility is so different, as is each patient. However, there is lots of good general advice here in the forum posts and lots of individual blogs elsewhere on the web, written by those who have undergone transplants. Those whose posts here were especially helpful for me beforehand include (but aren't limited to) users Squirrelypoo, Laura, DebbieW, and Flamingo Jim.

I'm one of those odd people who likes to spend a lot of time alone so that wasn't a big issue for me. But even so, the nurses, techs, and even the maintenance people were all so kind and friendly, it was a big help. Also, my iPad was a real asset. The nurse told me that all the transplant patients on that ward had iPads.

Please feel free to contact me if you have more questions. The link to my blog is in my signature.

Karen

[Neil Cuadra]

IhaveAA.AAdoesnothaveme,

I'm sorry to hear about your transplant delay but July will be here before you know it.

I'll tell you about our experience at a hospital in California and hope it's somewhat the same for you. Isolation may sound scary but isn't like solitary confinement in prison (although the institutional food might be no better ). You aren't really all alone. Nurses and doctors will still be in and out. Visitors may be allowed as long as they first "scrub" (like a doctor going into surgery): wash their hands with a scrubby brush and put on a cap, mask, and maybe booties or a surgical gown. The idea is to save your life by preventing you from getting an infection while your immune system is being rebuilt, so it's well worth the trouble, and if the hospital staff doesn't enforce it then you certainly should.

When people aren't there in person there's also Skype, as you mention, and IM and SMS and Twitter and other social networking sites. If you're like most young people I know then you're connected with friends, including your boyfriend, whether or not they are there in person!

You might miss your nephew but it's only temporary, and kids that age don't have a good sense of time. If you say hi in videochat now and then he'll probably be happy to see you that way. And if he gets a toy "from you" (which you can arrange with your family ahead of time) so much the better.

Hospital rules are necessary but they are designed to benefit patients. I don't know what the rules are about people staying the night, but if it's supposed to be an adult then I'd guess that your sister qualifies.

There are two reasons to have family members around. One is because they are your support team and keep your spirits up and your life closer to normal. The other is very practical: they can help take notes and keep records, talk to the doctors with you, be your "spokesperson", and help you if there are decisions to make about your treatment.

When my wife was in isolation, visits from family members, even some who merely waved through the glass, were a welcome dose of good cheer. Your nephew could probably be brought by to wave at you that way, if seeing you "looking sick" wouldn't be too scary.

People didn't have to visit every single day or stay for very long. It was knowing they were there for her that gave my wife the boost. Nobody was allowed to send her flowers, food, or stuffed animals, but people sent her notes, photos, or picture postcards that she put on a bulletin board, and that was another nice way to keep friends in mind.

You may not always feel like having visitors. When you don't, don't be shy about telling people it's a bad time. Anybody who cares about you will understand and not be offended. Like you, they'll know it's temporary and that what's important is that you get better.

[squirrellypoo]

Originally Posted by Neil Cuadra

The other is very practical: they can help take notes and keep records, talk to the doctors with you, be your "spokesperson", and help you if there are decisions to make about your treatment.

My biggest practicality was my fiance and family doing my laundry so I didn't have to wear hospital gowns, and also bringing me more toiletries when I needed them (I went through toothpaste at an alarming rate!).

And I totally agree with Neil that the rules are there to PROTECT you, not to punish you! We affectionately referred to all children under ten as "germ bags" during my transplant, enough so that our 5 year old neighbour happily started referring to herself as one, too.

Also, it's amazing how fast the time flies with internet, music, dvds, and your hobbies surrounding you. I ended up not even getting to half the activities I brought "inside", and I got loads of gifts (one a day!) while I was there, too.

But I'd definitely let people know that they should email you things, but not to expect a response from you. Some days I felt bad that I just couldn't write the big, long, thoughtful responses that people deserved, especially not with so many coming in.

And I know how you feel on the transplant delay - mine was delayed the night before my first date, to a month later...

melissa

[Stinkerbell]

I can only tell you of our experience:

My husband (38 years old) was transplanted on 1/21/11. At Roswell Park, isolation means that you are not allowed to hang out in any other patients' rooms. Your door must stay closed at all times unless there's a medical reason for it to be open (observation, panic attack, etc). I did not have to gown up or scrub when I went into the room; I just had to thoroughly wash well prior to going in. Our children (9 and 11) were allowed to visit but no other kids were allowed in. They weren't allowed to snuggle in bed with him though. Overnight visitors were discouraged, but I know nurses bent the rules from time to time because sometimes what's not exactly good for the body is good for the soul. They encouraged visitors as long as everyone is healthy.

Now that he's home, the kids still can't have friends over. We call kids 'walking petri dishes', although germ bag is more succinct. lol

[mausmish]

At Johns Hopkins, i was allowed visitors but no germ bags, erm chilrdren under the age of 12 (15 during flu season). My visitors had to be healthy but did not have to scrub or wear masks or gowns. They were required to use hand sanitizer before passing through every door between the elevator, the ward, and my room, before and after visits. I was not allowed in other patients' rooms but was encouraged to walk the hallwalls within the ward for exercise so long as I wore a mask and used hand sanitizer before and after.

The doctors at both Hutchinson in Seattle and at Johns Hopkins in Baltimore told me that a lot has changed over the past few years regarding views on isolation. They've discovered that the most dangerous germs are usually already inside us rather than from external sources, being held at bay by our immune systems. That's why they give you the prophylactic antibiotics, antfungals, and antivirals. You still have to be sensible about exposure to others but very few centers have the stringent isolation rules they did 5-10 years ago or more.

[Steve_F]

I had a Stem cell transplant in March at the University of Michigan, my sister was the donor.

Before going in, i made sure that I had a laptop and lots of reading material (Color NOOK) to keep me busy. My wife came up almost every day and spent 3-4 hours in the room. My brother and his wife as well as my sons came out also. Once the neutropenia was over, I was able to go off the floor and visit with my grandson in the cafeteria (4 years old) as long as we both wore masks.

On the floor, we were encouraged to get out of bed and walk around the nurses stations (like an oval race track). This got you contact with nurses that have seen you on other days and even some patient contact.
There was only a few days that "required" no contact, and they were around day 8-10 when I was very subject to infections. I was also pretty wiped out those days.

Keep an attitude that you are there to get better every day and believe it because you are!

[IhaveAA.AAdoesnothaveme]

Hello everyone,
I would like to thank you all for the support, it helped lots and was really reassuring. The transplant process has not been too bad of an experience. My friends have been really supportive, I skype with them multiple times a day and my friends from camp have special permission to call every night which puts a huge smile on my face. So far my sister has stayed most nights as my mom's work would not allow her time off she still comes up a lot which is great and we skype a lot. My friends have sent cards and one of my friends bought me the newest sims to play in my spare time. My nephew isn't as good of a story. I decided to try and skype with him and it scared him seeing me pale and loosing my hair. He started crying and I felt very guilty. When I lost my hair before he was too young to remember so, I didn't realise how much it would upset him. His father has explained to him that this is helping me get well enough so I can play with him more such as sports and stuff again (he loves watching hockey so he watches videos from before I was sick) so he was a little better. His dad asked him if he wanted to see me again and he said yes. I hesitated for a bit but then my family convinced me that he really missed me. This time it went a bit better and he started crying again. This time I got it out of him and he was crying for a different reason. He was sorry if he upset me last time and he didn't know what was the matter. I told him that I understood how it can be scary but that I am feeling much better and we cant talk on here (skype) as much as he wanted. He was really happy after that. It was fine for a couple of weeks and we skyped quite a bit. Then today he started crying again. I asked him what was the matter and he said that he went school shopping today and he wanted me there like I was last year when we shopped for day care. I told him that we can be on the phone together when ge goes shopping which reassured him but then he asked if I can take him to his first day of school and I told him I have to be better first. He then started getting upset again but I told him to bring the phone and explain it to his teacher. That made him happy again. I feel so bad for the poor boy who is having such a hard time but he is doing much better which I am thankful for. Medically, I got through chemotherapy pretty well. I had no appetite, and still don't, but it is getting better, of course there was some nausea and vomiting but nothing I couldn't handle. I successfully received my brother's stem cells 2 days ago so today is day + 2. So far I am not feeling that bad, I do have some mouth sores and have not been able to eat at all after all my efforts so my doctors ordered a feeding tube (NG), tonight when I skyped with my nephew it scared him a little but I explained things to him and I told him that it will help me get better faster and he said, anything to make you come home faster. He is a very smart little boy! My counts are still rock bottom but since I am feeling well now I am starting school to get a head start, I still want to be able to complete grade 10 on time. So far since I was admitted I have completed the careers part of civics & careers online which feels good. As to all of your suggestions my laptop has come in handy so much. My mom suprised me when I was waking up from my central line placement surgery on the day I was admitted. It had been so useful and I am so thankful for it. So far only one of my friends has actually come to visit as they are scared to make me sick. The one friend who came to visit happened to be my boyfriend which made it hard because all I wanted to do was hug him and give him a kiss but he had to be wearing a mask and it was not allowed. But it was worth seeing him, I had a lot of fun with him but saying good bye wasn't the greatest although we talk on iChat sooo much ! Strict isolation isn't nearly as hard as I though with supportive friends and I want all teens, etc. to know that.

I would like to say thank you for all the tips and suppourt , I love marrowforums!

[Neil Cuadra]

IhaveAA.AAdoesnothaveme,

I've very glad it's been going well for you.

Your nephew is getting an important lesson that a lot of us didn't learn until much later, that the love of family is what matters, not what we look like. Any of us might be a bit shocked to see somebody we know with their hair falling out or tubes connnected. We adults just hide it better, while four-year-olds wear their heart on their sleeve. But if you're smiling, everyone of every age will take their cue from you!

Other than Skype, are you using social networking to keep your friends up to date? My wife's transplant was before Facebook and WordPress, but we used to send a broadcast email to our friends and family every few days so everyone knew how my wife was doing.

I guess people have to use a little discretion, since not everyone wants to read tweets saying "I threw up again. Guess what color it was this time?"

[IhaveAA.AAdoesnothaveme]

Other than skype I am using facebook (I have a list of both family and close friends that want to be updated) I also chat with my friends and family on facebook chat privately. iChat is another thing a lot like skype that I use for better graphics on my mac. I also use blackberry messenger and brodcast messages in a group called Em's fight. My parents update a caringbridge site which is only for people that I know personally. Hope this helped