The listed list

Not much has been happening in medical transplant world lately, or in regular world for that matter (hence my lack of posts, well that and pure procrastination!) I have realized I never posted a hospital packing list.  I looked for this myself pre-TX but never really found one and thought I should make one for my fellow TXers, so here goes

Once listed pre&post TX hospital bag

Blanket (it's nice to have a soft one the hospital ones are often kinda scratchy)

Note: although for a normal hospital stay I would suggest bringing your own bedding (pillows, sheets, etc.) in the case of a transplant I wouldn't recommend it.  The bed gets pretty nasty from all the blood and goe that it's better to stick to a blanket and maybe an extra pillow that you can easily move out of the way and use the hospitals bedding for the rest.

Soft washable pillow

Pull ups or depends (I would recommend for anyone, it's hard getting to the toilet and this provides some protection if you don't quite make it!)

Pics for the walls (it helps liven up the room plus if you go crazy like me, pics can remind you of the world out there you are trying to get back to)

Eye mask and ear plugs (if you can sleep with that sort of thing.  I personally hate them and would rather deal with the light and noise)

Good shoes for walking

Slippers or easy to get on shoes

Sox

Hairbrush

Hair ties

Chapstick

Toothbrush

Toothpaste

Safety pins (great for keeping that gown closed during walks)

Clothes to go home in

A few things to do

(Don't go crazy in this department, most of the time I was either not up to doing anything or my brain was just too confused to really do something)

     Some ideas are:

          Coloring book

          Book

          Music

          Bible (if you are spiritual)

          Simple craft

          Small simple puzzle

          Card/board game

And most importantly a new fan

I got soooooooo hot after my transplant I used up all the ice packs in the ICU before my parents went out and got me a fan.  I loved that little fan so much!  My family laughs about it now because any time anyone got in the way of my fan I would motion to them to move ( about the only firm motion I could do!)

I think I got the basics covered.  If I come up with more I'll make an amended list. The thing to keep in mind if you have been in the hospital a lot before is that a transplant hospital stay is like nothing else you have probably experienced.  It is very very different from a typical CF "tune up". I usually feel decent most of my tune up time and have energy, the motor skills and the mental capacity to do a veriety of activities.  During my transplant stay I hardly had the motor skills to surf Facebook and no where near the mental capacity to comprehend what I was doing!  Stick to simple and comfort when packing for the hospital.  Your days will probably consist of sleeping, procedures and of course walking, walking and then some more walking.

A few other hospital tips:

In case you aren't already aware don't bring food, you most likely won't be able to eat it and it will just sit there tormenting you.  If you are lucky enough to eat while in the hospital you can send someone out to get you food once you know you can consume it.

Ask a nurse if the hospital you are at has a medical cosmetologist.  They will come and wash, cut or style your hair.  I had this done twice and loved it both times.  It is so hard washing your hair in the hospital even without having had surgery, yet having clean hair does wonders in helping you feel better!

Me after my second shampooing!

Getting back to life

Happy new year!

So I may have fallen off the blog wagon for just a bit there, but don't worry despite the wait for you it's a good thing, it means I'm living life.  I have been home now for almost 3 weeks.  I think I'm starting to get used to it.  It was a little weird at first.  So far the altitude has not effected me!  I noticed it a little at first but I could still breath fine and felt good!  For Christmas I went up to Aspen which was great!  I had not been in over a year.  Again the altitude barely effected me, I had no problem walking all over town.  It was so nice to be able to keep up with everyone and not feel awful!

My biggest challenge with being home is sick people.  I am still trying to figure this whole immune suppression out and being around people, especially sick seaming ones kinda freaks me out.  Before my transplant I was very much a go out and do things kind of person.  I really did not like sitting at home.  Now however, I find myself wanting to stay home much more.  I also get freaked out at the idea of hanging out with people.  I am still working on being more assertive and asking people to wash their hands and of course checking that no one is sick  before I come over.  This is definitely an area that my anxiety is starting to rear it's ugly head!  Hopefully as time goes by I will get better at this and return to my old fun self, but for now I will continue to be a hermit, hiding in my protected cacoon of sick freeness.

Until next time

Anna

Rollin on a River

Things are continuing to go well.  My energy has stayed and I have been feeling good.  I have started to adjust to all the meds and do not feel nauseous very often anymore!  It is looking like things are wrapping up here.  I Graduated from rehab on Friday and might be heading home early this week.  We will find out more tomorrow as I have my usual Monday appointments.  It's crazy because as we face the possibility of going home I am both excited and sad.  I am excited to see my family and friends at home, to be in my own home again and, of course, to see my puppies!!!  At the same time though it will be sad leaving the new friends we met out here.  I will also, as crazy as it sounds, miss rehab.  Rehab was such a unique experience I will miss getting to interact with people in the same place as me each day.  It will be a bit of an adjustment to go back to a world where being a transplant recipient is a unique thing.

As we begin to prepare to transition back to "regular" life I am forced to face the future questions.  I am not sure what I am going to do when I get home and what this next semester will look like, I know I want to return to school but I don't know when that will be.  I am mostly taking it one day at a time and just seeing what life brings.  If I have learned one thing from this whole experience it is definitely how to take things as they come, at least how to do it slightly better than before.  Gods got a plan and he knows where and when he will take me there.  

Don't get off this ride just yet!  It has only just begun!

Turkey for this Turkey!

Hello!

Tomorrow is Thanksgiving and it is looking like I will be joining my fellow Americans (who are aloud to eat) in stuffing myself on turkey day! ( not that I actually like turkey, but who knows maybe now I do). Anyway, things have been going really well for me the past week.  I have had energy everyday and have not had a nap in 6 days!!!  I still occasionally have moments of nausea or other weird feelings but I am starting to feel good more often than not.  I have been working on eating and am slowly beginning to cram more stuff down in there at once.  Tonight I pretty much ate a full meal! (It may have taken a few hours but I got it down and didn't feel completely awful!) The real test will come tomorrow. :)

The break brought along some visitors, providing a nice change of pace.  My mom switched with my dad and step mom and got to go home for the week.  My friend Jenna got to visit this weekend and yesterday my sister came!  I have been having a really good time with my visitors and it has really helped me to feel more like myself.  I think I am ready to go home now and get back to regular life.  If things continue the way they are moving I may be able to get home in a few weeks!

I hope you all enjoy your turkey day!

Gobble gobble :D

P.s. it's flu shot time! Be sure to get one if you haven't yet.  Protect yourself and people around you like me (immuno compromised peeps!) 

Moving forward

Hello again lovely people of the Internet.  Its been a bit since I last updated you all and a lot has happened.  We moved! I can eat some food!!! and some time has passed.  I am doing pretty well.  I feel tired almost all the time and sleep quite a bit.  I know I am getting better but some days it is hard to see. I also find it a bit difficult to grasp the concept that one day I will be better.  I will be able to run and dance, swim, laugh, sing...eat, you get the point.  I know the day will come when I look back and this is all just a distant memory but in the moment it is hard to imagine and truly believe.  And yet, I can look back and remember my hospital days when I felt even the small progress I have made wouldn't happen, heck a week ago I couldn't even eat and felt the day I could eat would never come, but it did!

My first meal!

Yes you are correct I can officially eat food.  I am not back to normal eating but I am aloud what is called a chopped diet.  I call it soft foods.  It has opened up many doors for me and I definitely feel better knowing I can have some food go through my mouth.  I have my next swallow test on Tuesday and am hoping I get cleared for thin liquids so I can finally have something to drink, that isn't thick and gooey.

I finally got some pics from the hospital and of my staples for those of you who want to see that.  The picture bellow is from the hospital.  The tubes you see are some of my chest tubes.  I think I had 7 total, though as I count the holes now there may have been 8, either that or one of them split into what looks like 2 holes.   In the bottom right corner there is a red blob.  This was one of my chest tubes.  I had 2 tubes like this one.  They were smaller than the others and had a little ball thing attached to them and they drained right into that.  The rest of my chest tubes were connected to these big plastic containers that kind of reminded me of the thing people use to test pool water.  I am not really sure if there is such a thing, as I am no pool expert, but I feel like I have seen people checking the water with a rectangular shaped box that scoops up the water and then has different chambers that are different colors.  If you know what this is than great you now have an idea of what the chest tube drain boxes looked like and if not, or if such a thing doesn't exist, I just described it so you are set too!  The next picture is of my incision line.  I have staples in for now.  I tried to count them, quite a difficult task, and I think there are about 100 of those pesky little buggers in me.  They really aren't that bad, probably due to the fact that I am still partially numb around my incision, but they do pinch on occasion and I am looking forward to getting them out. (Which should be in the next few weeks here.  I am at week 5 post surgery already, can you believe it!?!)

Pretty cool huh?

Mom and I have begun to settle into our apartment and our new routine.  Its funny because I thought I would be giving stuff up and have a less complicated medical regimen after transplant, just a bunch of pills right?....WRONG.  I have WAY more to do now than ever before.  Luckily I think as I continue to get better and as time passes the regimen will get less and less.  Being able to swallow my pills will also add to the easiness, its a little hard to put liquid meds in a pill box!  Each week seems to bring lots of procedures.  Just when I think I have had every medical procedure known to man done to me, my doc surprises me with another procedure for me to do.  This past week brought my usual monday morning blood draw, x-ray, pfts (pulmonary function test) and blood gas.  Then I also had a bronchoscopy done and finally the easiest thoracentises I will ever have.

For those of you who do not know a bronchoscopy is a test where they put a smallish tube down your nose or mouth and into the lungs.  The tube has a light and a camera on it so the doctor can see the inside of the lungs.  They can then clear out mucous from the lungs, simply look around and take tissue samples.  The bronch is the only way they have so far to check for rejection.  I will automatically have one done 3,6,9 and 12 months after my surgery and then once a year for the rest of my life.  The bronch I had this week showed some mild rejection so I will have another one in a few weeks to check and see if the treatment for my rejection was successful.  They have a few different ways to treat rejection.  Since mine was only mild and it is my first time I got to be treated with a high does of iv steroids and then an oral steroid taper back to my normal does.  I had the iv at home which was super easy.  Other than making me a bit sick to my stomach and sending my blood sugars on a nice dollar coaster ride, it went fine. 

A thoracentises is a procedure where they take fluid out of the cavity between your ribs and your lungs.     The doctor looks with an ultrasound to find the fluid and then puts in a needle to suck it out.  My last x-ray showed some fluid so I had to get it removed.  The procedure was scheduled for friday.  I went in and was sitting on the table having the ultrasound done, when the doc declared there was not enough fluid for it to be worth taking out!  That was the best news of the week, no big needle in my back, at least not yet. 

Confession time!  I typed this on Saturday, maybe even friday (its been so long I can't remember!) It is now Thursday so naturally things have changed.  This week brought another doc apt on monday (lab draw, x-ray, pfts and abg (blood gas).  We also met with the nutritionist, diabetes doc and my pulmonologist.  Things are looking good.  I also got the okay to stop the bi-pap (yay!)  As long as things keep progressing well, my doc thinks the idea of getting home by Christmas could be a reality!

This week has been a marathon of doctor visits as well.  I was able to get another swallow test scheduled for tuesday, I passed and am just waiting for the doc to give me the official okay for eating normal food and.....DRINKING!!!!  I am so looking forward to a nice big glass of thin liquid!

Yesterday I had another 24 hr ph probe test.  I will have to wait find out how that went.  Hopefully it was good and I will not be needing the stomach wrap surgery.

Well its time for rehab so I got to go.
Later ya'll!

I'm back!!!

Hello!

After nearly 3 weeks of silence I am back to typing.  3 weeks, wow! Where do I even begin.  I guess I'll start at the beginning.  It was around 9 am or so when my phone rang for the second time with an unknown Durham number.  I answered and heard the now slightly familiar reply "Anna, we have lungs" followed by instructions on what to do.  This time Sebastian and Dave were with us so the four of us made the short drive from the hotel to the hospital ( we were in a hotel for the week while Sebastian and Dave were here)  The hospital was a whirlwind as they prepped me for possible surgery.  After only a few hours of waiting I got the second call, it was a go!  We sat around for a few minutes saying goodbye and then it was off to the operating room.  I had two lines put in, one in each hand glanced at the clock, it was 2:57 and that is the last thing I remember.  When I finally woke up I didn't really know what had happened.  It took a bit to process I was post transplant.  I was still on the ventilator and spent some of my first few remembered minutes trying to get off.  I knew I needed to breath so I just kept trying to do that.  Unfortunately due to the complications of my surgery I had to stay on the ventilator for several days (even while I was conscious).  I have no idea how I made it so long on the ventilator without freaking out.  I can only point to God and just know he carried me through.  He really has brought me through the whole process and still continues to each day.  

Before my transplant (it is so weird even today to type that, it still doesn't feel real) I had been told that it would be the hardest thing I have ever done, and probably ever would do.  Yes, yes it is.  So far the process has been the craziest rollar coaster ride ever.  Add to that all the drugs in my system and well.....yeah.  The hospital was definitely the hardest.  Although it is exciting being out of the hospital and at our NC home I still have a LONG way to go and each day is a struggle.  My pain has gotten pretty good and I hardly ever take anything for it so that is a definite plus.  

For me the two hardest things are not being able to eat or drink and being on bipap at night.  I am aloud to have 2 sips of a thickened liquid per hour, but when you have had nothing to drink for 3 weeks that hardly cuts it.  I really just want a nice big glass of water.  It is amazing how much we take being able to have a drink whenever we want for granted.  Each moment is a struggle.  I have times when I am okay, my mouth feels wet and I can forget a bit about not drinking, but then the ferocious beast of thirst shows its ugly head and it takes everything in me not to rush to the kitchen and chug all the drinks we have.  I now really feel for the people in countries without access to clean drinking water.

And then there is the bipap.  Due to my complications during surgery my lungs are still not completely good.  I have been having trouble getting the CO2 out of my blood especially at night.  Due to that the docs felt I would benefit from using a bipap machine at night.  This is  hard for me because it means wearing a mask that forces air into my lungs at night.  I hate being hooked up to things at night especially on my face.  I think the hardest part for me is that I did this transplant to have healthy lungs and ditch the o2 and yet I feel like I have almost taken a step back.  I had always been able to avoid the bipap pre-tx, I have a hard time believing that I have good lungs now that I need it.  Everyone tells me it may be temporary and my lungs need time to heal.  I know this somewhere inside but it is extremely hard psychologically to truly grasp.  

My days are pretty insane.  I have the craziest pill regimen ever, mostly due to the fact that I am not aloud to swallow my pills.  The kitchen looks like a chemistry lab most of the time and Beth and my mom are constantly busy crushing pills and mixing concoctions to give me.  When we aren't busy with pills we go out walking.  I still have an aversion to walking but I can do it and I don't even get out of breath (crazy right!)  When I was in the hospital I had to walk laps around the halls.  The first few times I did it the pt people with me would check my oxygen saturation and it was usually in the low 90s.  This always shocked me I haven't had an oxygen saturation on room air that high in maybe 7 or 8 years.  After a few days I began to be able to walk and talk, again that is not normal for me.  

I am pretty tired all the time and my chest feels very heavy.  I have all kinds of scars almost from head to toe (they cut off around my thighs)  I pretty much look like I went through a car crash, or shark attack as I like to claim!  My incision is huge and goes all the way across my chest, in a sweetheart neckline fashion.  It is really quite crazy to look at as it is filled with staples.  

I start rehab next week.  I also have my first post tx check up.  Ill update more later but I am pretty tired right now.  
peace out home dogs!

Day 11

Sorry for the long delay. Sometimes keeping up with all the different forms of communication can get overwhelming. I dropped the ball on Anna's blog. Anna got off ECMO on Wednesday night 10/16. By the end of the17th she had an epidural in place and finally the dreaded ventilator was removed. Anna walked a bit that night. What a huge leap she took in less than a week. Friday night brought her move to the step down unit. After being in the very posh ICU, the step down unit is rather depressing. It's old, the rooms are tiny and the waiting area is pathetic. 

Each day Anna has increased her walking. It's an ordeal getting all her chest tubes (she has had up to 7 of those but is down to 5 now) and IVs situated (I haven't kept track of the IVs. She had at least 12 at once in the ICU, she's down to 2). Anna uses a walker that has arm rests about chest-high. It gives her something to rest on and more stability. She is now up to walking just about 1 mile. I think by the end of today she'll be walking over a mile. Impressive considering her pain level is at an 8 (on a scale from 0-10). The sad news is that yesterday a possible new blood infection was detected. They don't know what it is exactly but her white blood count is elevated. The Drs were concerned it might be related to her epidural (which was providing pain relief) so they took it out. Not good news for Anna. She is in a ton of pain now. 

She hasn't slept much here due to the pain and she's really uncomfortable. She cannot eat or drink by mouth. She would give anything to get even just a sip of water. Her vocal chords and epiglottis are not doing their job of closing her airway and protecting her lungs from food and liquids. She has some exercises to do which may help strengthen things.        

Although Anna doesn't feel strong, I am amazed by her ability to tolerate all she has gone through. She's not up for blogging yet (and probably won't be until she gets out of the hospital---no energy) but when she is, get ready to hear all she has to say. She won't sugar-coat anything! :)