A Patient's View On Rejection

I've been MIA for the past few months. After my last posting, doctors found rejection in my lungs. It's been a stubborn bout of rejection. The first time they discovered it, I had A2 rejection and was given high dose steroids. The second time the rejection was found, it had gone down to A1 so the doctors let it be. The third time it had jumped to A3 rejection, so I was hit with high dose steroids again. The fourth time the rejection had gone down to A2. Since rejection had been found four times in a row, the doctors decided to do something more drastic. They sent me to the hospital and gave me ATG (also known as the Rabbit).

The steriod rounds were exhausting. I would get admitted for three days. Each of those three days, I would receive 500mg of solumedrol (IV version of prednisone). That stuff is not fun. I wound up with severe insomnia. I felt exhausted but couldn't sleep. And TV was horrible, so I couldn't use that to keep me occupied. I got irritated with a doctor because he came in early one morning and realized I had been up all night knitting.  His response was, "At least you're keeping yourself busy." It took a lot of self control to not blow up at him. 

The high dose steriods also messed with my taste buds. For the first couple of hours after receiving an infusion food would taste bitter. The first time it happened, I hadn't been warned about the change in taste and I drink some milk. It tasted like it was spoiled. I thought that I had been given spoiled milk. When I tasted water, it was so bitter I had to force myself to drink it. I finally went online and read about other people's experience with high dose steriods. There I learned about the change in taste. Some patients even warned to wait two hours after finishing an infusion before eating anything. Was definitely good advice.

The other issue I noticed with the high dose steriods was that my anxiety went through the roof. I couldn't handle more than a couple of people at a time in my room. That made it hard since the transplant team is like a mini mob, all wanting to come in my room at the same time. I wanted to scream. I'm sure the severe lack of sleep did not help my situation any.

My latest hospital trip lasted 10 days. It was pretty hard, both physically and mentally. Since I had shown rejection four times in a row, the doctors brought me in to treat me with a heavy hitter. It was called Antithymocyte Globulin Rabbit (ATG or Rabbit). Because of having Cystic Fibrosis, I have taken some harsh medications. None have ever knocked me on my rear like ATG did. The first dose made me tired, and fuzzy brained. SB said I sounded drunk. I had trouble focusing. I had a horrible headache. My right sinus swelled up, and the right side of my body got really sore. I felt as if all my energy had been sucked out. Something as simple as getting up to use the bathroom felt exhausting. The following day, I felt like I had the the flu. I had a slight fever, a headache, fatigue, and achiness all over. I felt miserable. 

The way they did the ATG was a six hour infusion one day and then a day break. I had four treatments over ten days. At one point I got a two day break because my kidneys pitchecd a fit. Don't blame them. 

ATG works by attacking the T-cells in the body. T-cells are the body's soldier cells. By attacking them, the immune system is being attacked. The idea is to destroy the immune system and then let it rebuild, hopefully the transplanted organ stops being attacked by the new T-cells. We will see if it works. The treatment left me worn out. I've been home a week and still don't feel like I've had enough rest. I have to be extra cautious about my exposure to germs. So it's extra santizing, and wearing my mask more often. Also avoiding large crowds. That part has been hard because How To Train Your Dragon 2 is in theaters right now and I really want to see it. 

And to top off all the medical issues, SB was hit by a car on his way home from work. He was on his bike and someone ran a red light. He survived, just dealing with getting himself checked out. He's on medical leave from work. His bike is a mangled mess. Bills from that are mounting. And his not being able to work makes it hard for him to pay his rent or buy food. 

So between my constant Stanford visits and SB's accident, we haven't had time to stop for a breath. I keep hoping things will calm down soon. Both of us need a vacation.

To say it has been a roller coaster is an understatment. Going in and out of the hospital makes it hard to do normal things like find a job or spending time with friends.

Please donate $2.24 to help with continued transplant expenses.

http://cota.donorpages.com/PatientOnlineDonation/COTAforSolanaC/

Bumpy Ride Part 3

The transplant ward was quite nice. I was place in a private room right by the Nurses Station. I was still in a lot of pain. The nurses seemed to know what they were doing though. They were used to dealing with transplant patients so none of my issues were new to them. 

I was still in a lot of pain. And I didn't have the strength to walk on my own. I couldn't even walk to the bathroom. 

The beds in the transplant ward caused me some issues. They were not designed for someone under five feet. The nurse would have to help me scoot to the edge of the bed and then help me "jump" down. They didn't have any steeping stools for me to use. Since I so light, we ended up using a garbage can as a stool. 

I wish I could say, I did a lot of resting but the doctors were pretty much shoving me out of bed the moment I woke from surgery. Just to get them to stop nagging I tried standing (with a nurse holding my hands). I almost passed out. My legs were so weak. It was like I had no muscle left. I pretty much didn't. I weighed less than 75 lbs. 

On the ward I would try to walk little bits. Sometimes, just to get to the commode was exhausting. I had very limited mobility with my arms so I needed a lot of help from the nurses. 

I was also very thirsty and very hungry. I gnawed on ice a lot. I wasn't allowed to eat or drink until a swallowing specialist cleared me. It took a couple of attempts before I was allowed to eat solid food. 

The pain seemed to go on forever. I couldn't a get comfortable enough to sleep. And when Imdid reach a point when the pain seemed bearable, the doctors old switch up my meds and I had to start all over. Sometimes the pain would be so bad I was in tears. One night I called SB at would because I was in so much pain. I needed a distraction. 

I was averaging about 3 hours of sleep per day.

The high doses of steroids didn't help much either. I had a hard time falling asleep and then I couldn't stay asleep. Most nights I'd wake up in a panic and couldn't go back to sleep. It got so bad that the doctors put me on melatonin to help me fall asleep and Xanax to help with the anxiety. 

During the day, I had a different set of problems. I've always been claustaphobic when it comes to masks and here I needed to wear a mask every time I left my room. It was torture. The nurses were really patient with me. They would hook me up to a pulse ox and show me that my levels were fine. They also let me lug my teddy bear around (a gift from SB). I'm sure they've seen more unusual things than a 31 year old carrying a teddy bear everywhere. 

Because of the surgery and my limited mobility and having gone through surgery, the doctors order Heparin shots three times daily. To say these shots hurt is an understatement. It was like being injected with liquid fire. The stuff burned. I just wanted to scream. A couple of times I did. The nurses felt bad every time they had to give me the shot. 

Bumpy Ride Part 2

In the operating room, I was lifted to a metal table.  They covered me with blankets.  My port was already access before I had flown to Stanford and the surgeons were talking about using it.  I remember thinking that something must be wrong with me because I wasn't afraid, not even worried.  I was completely calm.  A nurse put some warm blankets on me.  I was given something through my port.

The next thing I knew was someone was trying to wake me from a good dream (I can't remember the dream now, just that it was good).  I didn't want to wake up because I wanted to finish my dream.  I heard a voice say that it was after noon and that the surgery was a success.  I thought, "What surgery?"  I had completely forgotten that I had gone in for a transplant.  It took a while for my drugged brain to put things together and realize that I had just gone through transplant surgery.

I heard my mom ask if I knew who she was.  I nodded what I thought to be a strong nod (my mom says I barely moved my head).  I could hear my sister's voice in the background telling me she was right there.  I couldn't open my eyes to look around.  I did manage strong hand squeezes to questions, but that was the most of my moving capability.

I was still on the vent. The nurse told me I needed to stay calm and not fight it, that the vent was helping me breathe.

My mom and sister left to get some sleep (they had stayed up all night waiting for me to get out of surgery). SB came in to keep me company. He joked and kept me calm the rest of the time I was on the vent. I was so glad when they finally took me off the vent. The nurse had me cough while he pulled out the tube. I tried talking, but my voice couldn't even whisper.

The nurse was awesome. He kept explaining to SB what he was doing and why. I kept trying to pay attention, but was still tired and would doze off.

The ICU was pretty nice. I had a glass room with a sliding door. A nurse was by my side at all times, constantly watching monitors and making adjustments to my IVs. I wish I could remember the names of the nurses there.

They tried to keep me well medicated. Some of the meds had weird side effects. At one point I was trying to show SB where "glowing purple flowers" were. At another time I had to keep my eyes closed, because if I opened them everything seemed to be wobbling.

The surgeons came in to check on things. They let me know that things went really well, and that they couldn't have found a more perfect fit. I just kept saying, "Thank you." They might have gotten sick of me thanking them so much.

Unfortunately, I was in quite a bit of pain. To say I felt like I had been hit by a MAC truck would be an understatement. I felt like I had been hit then backed over and then run over again. Loki getting treated like a rag doll by the Hulk is nothing compared to how I felt.

The transplant doctors didn't seen to want patients to get rest after surgery. I was still in the ICU and they were wanting me to get out of bed and try walking. I did try, but it was definitely a failed attempt. I didn't have strength to stand. The nurse had to hold me up so I wouldn't pass out.

I also wasn't allowed to eat yet. I had to see a swallowing specialist and get cleared. The specialist wasn't ready to risk me choking on anything so I was only allowed to have ice chips and suck on these lemon flavored Q-tip things. When you are so thirsty and hungry, those Q-tips are like chocolate.

Physical Therapy and Occupational Therapy came in to see me and give me tips on ways to move and dress so I wouldn't hurt myself. I received a bunch of rules about sternal precautions. Most of which, I knew I wouldn't remember so I did ask them to give me a sheet with the precautions written down.

I spent a few days in the ICU before they transferred me to the transplant ward.

Bumpy Ride Part 1

Wow.  It's been a bumpy ride since my last post.  I know I posted a one liner when I got my transplant call.  I didn't give any explanations or anything.  It was pretty shocking.  When you get the call, you're literally trying to make sure you have everything together and are making phone calls to everyone to let them know what's going on.

I should start from the beginning.  On February 13, I had gotten back from Stanford for a regular follow up clinic appointment. I wasn't feeling well (trying to recover from a nasty cold).  I went to bed feeling worn out and was hoping that sleep was all I needed.  I woke up two hours later with my heart racing and feeling like I was suffocating. I checked my pulse and oxygen levels.  It was a heart rate of 157 and O2 of 86%I called 911 and they took me to the local hospital.

The local hospital wasn't equipped for dealing with trauma, much less a CF emergency.  I was complaining that my head felt funny, I was hot to the touch (but no fever), couldn't breathe, I was scared.  The worst part was nothing was being done.  The doctor hadn't come in to see me, but had ordered no water, no liquids, not even ice.  I was dying of thirst.

SB met me at the hospital, and was getting impatient when I wasn't receiving help.  I had been there for two hours and nothing had been done.  SB wound up calling my CF hospital and got some advice from the on call pulmonologist.  If you are at a hospital and you feel you are not receiving adequate medical care, you can request to be transferred to another hospital.  It is your right.

So two hours after I showed up in the emergency room, the doctor finally came to see me and said she thought it would be better if I was transferred to my CF hospital.  She had made contact with the pulmonologist there (same one who told SB to request the transfer).  I was going to be transferred by helicopter.  They gave me some Ativan to calm me down (I was freaking out over the fact I couldn't breathe).  It didn't seem to be kicking in though.

The helicopter arrived and the two nurses came in to get me ready.  They were light-hearted and did a good job keeping the mood calm.  While they did a lot of joking around, I knew they were more than capable to handle anything that might occur while we were in flight.  My mom showed up before they wheeled me out, so she was able to see me off.  I was loaded up in the helicopter and we took off.  Unfortunately, I can't say much about the ride because the Ativan decided to kick in and I fell asleep.  When I woke up we were landing on the roof of the hospital and I was being wheeled into ICU.   It was 6am on Valentine's Day when I made it to ICU. I fell back to sleep.

At some point, they determined that I was severely dehydrated and CO2 was getting trapped in my lungs.  This was making my heart work on overdrive.  They hooked me up to fluids and set me up with a high flow.  The high flow was a pretty neat set up.   It allows for a higher flow of oxygen than the normal hospital set up.  It's moisturized so the nose doesn't dry out. The higher flow can force the trapped CO2 out.  When I got set up with the high flow, my heart started to calm down.

Because I missed out on Valentine's Day, SB came to the ICU with the works.  He brought fake flowers (no real flowers or live plants allowed in the ICU), chocolates, a Teddy Bear, and Date night.  We had dinner by light saber and watched Return of the Jedi.  All the nurses thought SB was such a thoughtful guy.  I have to agree with them.  He really knows how to make a girl feel special.  Even when she's hooked up to IVs, a high flow, heart monitor, and pulse ox.

I was eventually moved to the floor.  Progress was slow.  They were trying to wean me off of the high flow.  I was working on being able to move around again without short of breath.

I had been in the hospital for nine days when my sister and I were having a Girls' Night. We were watching The Wedding Planner and I was about to dig into some Mac and Cheese. My cell rang.  I wondered who would be calling since I was low on minutes and I had told everyone to call the hospital phone.It was Stanford.  A set of lungs were available and it was a match for me.  I was in shock.  It suddenly went from my sister and I having a Girls' Night, to us trying to get things ready for Stanford.

We made calls to everyone, telling them what was happening.  It was pretty crazy.  I was trying to process the news, nurses were trying to get things prepared for my transfer, hospital staff (whom I've known forever) were dropping by to wish me luck.  I felt pretty overwhelmed.  My doctor called to wish me luck.  SB was on his way from work.

I got news that I would be transferred by helicopter.  It would be the second time in a month that I would be traveling by helicopter.  Since space would be cramped, I had to arrange for my sister to take all my stuff to Stanford.  All I would be taking were my glasses and slippers.

SB arrived at the same time as the helicopter.  We did a lot of Goodbying.  We took pictures of us (SB, my sister, and me) and did more goodbyes.  SB and my sister came along to the elevator where we did our final goodbyes.  It was hard and there were plenty of tears.

This ride I stayed awake for.  Night flights are really cool.  All the lights look like jewels on a black background.  It was pretty.  Even more beautiful when we got to the Bay Area.  There's even more lights to look at.  The trip seemed to end quickly.

I was wheeled into ICU.  The helicopter nurses wished me luck and headed out to their next assignment.  The ICU nurses got me cleaned up and ready for surgery.  At the same time they did all the admitting paperwork.  I could tell that they do this type of multitasking often.  By 12:30am on February 24, I was in the operating room.

Another Day in Lock Up

Still in the hospital.  Was supposed to go home today but my white cells weren't cooperating.  Apparently, they aren't going down to the level my doctor wants them to.

The good news is that I'm not on oxygen anymore.  I can't go running, but at least I can brush my teeth without getting short of breath.  And my nose is happy about this change in events.  It was really starting to hurt. Now I'm just irrigating a bunch of blood out.

For the most part today has been pretty uneventful.  My boyfriend and I are having our last date night before he returns home.  I have to say, he's definitely set some new standards for boyfriends.

Date Night

Well, I have some good news.  I should be able to go home on Monday.  I could have gone home today, but one of the meds won't be available till Monday.  So I have to finish out the weekend here.  I am looking forward to going home.  Sleeping through the night will be so nice.  Here getting two hours of uninterrupted quiet time is a miracle.

I do have to say that this has been one of my better stays.  I am going to have to give my boyfriend credit for that.  Last night he decided that we would still have our date night even though I am in the hospital.  So he dressed up and made me a peanut butter shake.  Then we did dinner and a movie.  It was really sweet.  instead of letting the hospital ruin our plans, he found a way to make our plans go through.

I can honestly say that this stay has been very amusing.

Lock Up Update

Thought I'd try updating everyone on what's been going on.  I was transferred to UC Davis on Sunday afternoon.  I figured the earliest I would have been transferred was on Monday, but when two hospitals work together instead of arguing, things get done pretty quickly.

So I had my first ambulance ride that I was conscience for.  My boyfriend rode with me.  He rode up front while I was in the back.  I wish I could say the ride was exciting, but it really wasn't. Between Chico and Sacramento is mostly farmland so I dozed the bulk of the way.

Since getting to Davis, I've been pumped full of fluids.  My bladder is not enjoying this.  They've taken plenty of blood. Done X-Rays.  Still no real conclusion as to what happened, just a theory.

My boyfriend has been staying with me.  He's been really helpful through this.  Since I wasn't able to move around, he basically carried me where I wanted to go.  He's good at distracting me during lab draws.  One time, a nurse came in for blood and my boyfriend started talking about food with me.  We were describing different dishes, finally the nurse said, "stop, your making me so hungry I can't concentrate." I got a good laugh from it, and it was one of my easiest lab draws.

I think him being here is probably the only silver lining to being in the hospital.  We usually don't get much time together.  And right now it's in abundance.  I don't think the sleeper chair he's been using is all that comfy, but he isn't complaining.  I do think the lack of good sleep is probably draining on him.

The hospital food is still a mystery to me.  Yesterday, they sent something that they called Chile Verde, but what it looked like was a dog vomited up a bunch of canned food.  Looked pretty nasty.  Now I love Chile Verde and this stuff definitely wasn't Chile Verde.  This time around, I've been craving chicken alfredo.  Can't wait to get home and have some.

As for when I get to go home, there's no say on that.  I think the doctors are waiting for me to be able to do normal things without oxygen before they will consider letting me go.  So that's what I am working on.  It's a challenge since everytime I unhook the oxygen I feel like a fish gasping for air.  My doctor did order a bike be brought in so I get to start on that.

Not much else here.  Mostly trying to catch up on lost sleep.  Sleep in a hospital, what a novel idea.

The ER and Lock UP

So I did plan to do some blogging about the amazing busy time I've been having, but instead I found myself unable to breathe.  I was having such a hard time that when I called UC Davis the Pulmonologist didn't think I could make it there, so I went to a local Emergency room instead.  So I am in Enloe.  The people so far have been nice which makes the nerve wracking part of being a new place a bit less so.  It looks like I was dehydrated again.  As soon as they pumped some fluids in me, I started having an easier time breathing (with the O2 on).  I still can do a lot of moving around but there is some improvement.  The doctor here spoke with my CF doctor and they both agreed that I would be better treated at UC Davis. So they're trying to get me stablized enough to transfer.  Not sure when that will be.

The silver lining to all this is that Enloe is located close so that my mom can get some rest at the house and my boyfriend can relieve her.  He met us up at the ER and stayed the night here with me.  My mom had worked yesterday and needed to get some rest and care for my niece.

Another good thing about being here is that we have a couple of friends from our Bible study who work here.  They've stop by to say hi.  One of them came just in time. The hospital was getting ready to move me from the ER to a room.  They sent a guy from the lift team to bring me up.  I still had a bunch of EKG stuff connected to me and he was going to remove.  I sitting there thinking, "I don't even let my boyfriend see this part of me and here a complete stranger about to lift my shirt."  Luckily my friend told him no, shooed him to the other side of the room, shut the privacy curtain, and removed all the stuff.  She did this during her lunch break.  I was completely relieved.

So I've survived my first night here.  My boyfriend is trying to catch up on some sleep.  He's been up with all my coughing attacks, and my short of breath moments.

I think being a loved one of a CFer can more exhausting than being a CFer at times.

The Crazy Month Of May

 My fiftieth post!  Such an occasion calls for cake or maybe blackberry pie.

I know I said I would be updating more often in my last post.  Things have just been hectic. I've been trying to balance my normal responsibilities with having a boyfriend.  It's a slight challenge considering we live a 30 drive from each other.

I went on a hike at the end of April.  I really enjoyed it.  Been a while since I was out hiking. Went through an entire Oxygen tank.  My boyfriend was really sweet and super patient.  Even with the oxygen, I had to take several breaks.  Since my pack held my tank, my boyfriend had to carry enough food and water for the both of us as well as a spare tank.  He didn't complain.  The area we went to was called Table Mountain.  Picked a great day for the hike.  The weather was mild and there was lots of green.  The place looked how I imagine Middle Earth to be.

We made it to one of the waterfalls.  To get there required a climb down into this ravine like place.  Was worth it.  There was lots of shade and places to sit and rest before continuing on.  And the waterfall was beautiful.  

My boyfriend and I left our hiking group early since I was running low on oxygen.  Near where we parked was this large tree so we waited for our friends there.  We got some cute pictures while waiting.  It was a great day.

My boyfriend and I went to the midnight showing of Avengers.  If you still haven't seen the movie, I recommend you stop reading this and go right now.  It was great.  Especially, for someone who enjoys superheroes.

The first weekend in May I went on a Ladies Retreat with the ladies from my Bible study.  We were up at Lake Almanor.  And it was beautiful.  You could see Mount Lassen.  I was pretty amazed at snow still being up in the mountains, since we were already getting swim suit weather at home.  The ladies retreat was fun.  We did some Bible study, worship and got to know each other better.  One of the ladies made this amazing stir fry that I am planning on requesting the recipe from her.  Might help with the weight.

After the retreat was my doctor's appointment.  The good thing was my weight was staying steady, bad news was I couldn't breathe.  So I went back to the hospital.  I was there for a week.  I did try to blog there but my nook wasn't letting me on the site for some reason.  I need to get the hang of that thing.  I got it so I can keep up with my writing without lugging my laptop around.  And that's the part that doesn't want to work.

For the most part my stay was uneventful by way of crazy staff.  The only problem I had was the attending brought a bunch of medical students into my room one morning and then asked if they could all listen to my breathing.  I told her (in front of the students) that I wasn't a circus attraction.  I would have been fine if it was one or two students but a whole bunch of them.  And she didn't check ahead of time to see if I was okay with it.  She just brought the students in and then asked.  I felt like they were trying to intimidate me into allowing everyone to "take a listen."  I don't think I scored any points with her.  After that though, she did only bring in two students at a time to see me.

The hard part about this hospitalization was that everyone was busy with work or school or they were sick so I only had two days when I got visitors.  That part was a little depressing.  The up side was that since my boyfriend couldn't make it to visit he sent a care package.  It was super sweet and contained things that I like.  So if your CFer ever ends up in the hospital during a time you can't visit, send them a care package of things they'd appreciate.  Include some good snacks as well cause the food sucks.

When I got out of the hospital, I was sent home with IVs.  Somehow the attending wound up ordering Zyvox as a suspension instead of a pill.  The suspension is nasty.  It takes willpower to not spit that stuff out.  So I had to endure that tastebud torture.

On Saturday my boyfriend and I celebrated our Monthaversary.  It was sweet, he made dinner and dessert and then we watched Underworld.  Cause nothing is more romantic than vampires and lycans trying to kill each other.  Actually, we both enjoy Sci-Fi and Fantasy.  And Underworld is a movie we both agree on.

This past Tuesday, I had an awww moment. In honour of cystic fibrosis awareness month, my boyfriend had gotten both of us purple cf bracelets.  That in itself was sweet.  On Tuesday when I had gotten to Bible study I saw several other people wearing the purple bracelets.  He had asked a bunch of people to wear the bracelets for the month.  

I think that pretty much catches us up for now.  I have an appointment with the transplant clinic next week and another appointment with my CF doctor in mid June.  And between all that, I want to get some more bike riding in.

I hope everyone has been wearing purple in honour of cystic fibrosis awareness month.  If you haven't, you still have the rest of May to wear it. 

March Update

A lot has been going on since my last post. I still don't have internet at home, which makes blogging difficult. I had another appointment at Stanford and one at UCD. I spent a few days in the hospital. Plus I've been trying to do more outside my home (been getting stir crazy).

The appointment at Stanford went okay. Still not sick enough to be listed. All this waiting can get aggravating. Personally, I don't want to get worse than I am now. But rules are rules.

My UCD appointment went well. No change in health. Still trying to get the weight on. And some days I feel totally exhausted when I've done nothing. I found that riding the quad helps bring more gunk up so my doctor recommended I do that at least twice a week. So I've been making a point of taking it out. My dog likes it too, since he gets to go running. I did complain to my doctor about this whole waiting thing. It's frustrating. I finished school got my degree and now I can't use it because I can't work and stay healthy. He suggested I find some volunteer stuff to do. I would only have to put a couple of hours a week in and wouldn't wear myself out. Problem is, I live in the middle of nowhere and have no vehicle. So I'm doing the car search, which exceedingly frustrating. So far, only piles of junk are available in my price range. The appointment ended with me doing a bunch of lab work and then heading home. I slept most of the way home.

At the beginning of February I wound up in the hospital. Still not sure if it was allergies or my CF. I had allergy like symptoms but my white blood cell count was through the roof. So I did a round of antibiotics and my mom cleaned the house from top to bottom just in case. So far no more itchy burning eyes and no more runny nose.

The day after I got out of the hospital, my Bible Study group had its Valentine's Dinner. I had finished my dress the day before I went in to the hospital. It was this gorgeous white gown, covered in black lace with a berry coloured ribbon belt, tied in a bow. It was a thrift store find that I made some changes to. It turned out great. And the Valentine's Dinner was a blast. We were all single and friends, so all that crazy pressure to be romantic wasn't there. We were just there to have fun. Next time though I think I'll make a dress that is a little looser around the waist. I couldn't eat as much as I wanted because I ran out of room in my dress.

Things have wound down a little bit. I still have a Movie Night to plan out. My team and I are just having a hard time choosing a meeting time when we can all be present. Which we need to get cracking since Movie Night is on Friday and we don't even have a movie picked.

In the works is me giving a group of ladies a lesson on how to make a hair piece like the ones I make. Hopefully, it all goes through. I think it would be fun and a challenge. I'm used to art lessons with pre-schoolers not adults. So while I'm sure I won't have to worry about anyone trying to eat the glue, as adults we lose some of our creativity. Pre-schoolers don't know rules about coloures and techniques. They just pick what they want to go together and do it. I had a little girl who made a purple snow man and she was proud of it. Adults have a little trouble letting go of the rules. Snowmen are white, the sky is blue, and the grass is green. Any deviation from that is wrong. So trying to show them otherwise can be a challenge. I was making my list of materials needed for the project, and I really had to think. Besides glue, the rest of my materials can be random. Sometimes I use ribbon, sometimes beads or buttons, sometimes shells. I use whatever inspires me at that moment. It's fun, it's quirky, and there are no rules. I hope this turns out well.

Also in the works is my church's annual Night at the Oscars. You get to dress up (in formal wear or costume), have dinner, and have fun with everyone. I plan on going in costume this year. It's mostly complete. I just have to finish the corset and make a hat. The hat has proven challenging. Mostly, because I just want a small black hat that I can decorate myself. What I am finding are already decorated hats. I don't want to spend a bunch of money on something I'm going to take apart and redo my own way. It's frustrating. So it's back to the drawing board.

I hope you're keeping just as busy and staying out of mischief.

Till next time.

For updates on my transplant journey, click here.

October Update

September was pretty eventful. I wound up in the hospital due to severe dehydration. The attending their completely irritated me. He would not listen. He kept ordering lab draws to the point that I had bruises and my veins were going on strike. I kept trying to tell him to lay off and he wouldn't. I was so happy to finally be going home.

At home I wound up with a severe allergic reaction. So I was on Benadryl for a week. So I was pretty useless during that time.

When I finished home IVs I went to my follow up appointment. My lung function had actually gone down. I needed a break from IVs so I didn't go back on meds. I did gain all the weight back that I had lost while sick. The doctor did a walking test on me. I've been complaining for awhile that when I walk around or try to work out, my heart rate keeps going crazy and my brain starts to scream at me. But I kept getting told that I was having an anxiety attack. I couldn't understand why a simple walk would cause an attack so I just kept pushing myself.

So my doctor ordered a walking test. Instead of testing my sats after I walk (which is how the walking tests at the transplant center are conducted) my doctor ordered that my sats should be checked while I am walking. Well, while walking I dropped to 85%. When I stopped and sat down my sats shot back up. So now when I workout or exercise, I have to use oxygen. It's going to take some getting used to.

My doctor also took the anxiety I feel when I get labs done into consideration. Since I already do relaxation techniques and am still having issues my doctor ordered some anti-anxiety medication. I'm supposed to use it only for labs. We're hoping that it'll relax me enough so that my veins won't constrict. We'll see how it works the next time I have labs.

The following day, I had to take my dog to the vet. He managed to get a fox tail deep into his paw. The vet had to sedate him and really go in deep to remove it. She let me stay in the room for the whole procedure. My dog is back to normal now. He's already trying to chase the sheep again. I don't think he got the memo on how to be a Lhasa Apso.

During all this, I was moving to a new house. So the stress with being sick was combined with the stress of moving. We still don't have everything unpacked.

I also was able to talk to COTA about keeping my blog open. We came to an agreement. I get to keep my Fight to Inhale blog going and use their site for all transplant related blogging.

As you can see it's been a pretty hectic month.

For transplant related posts please click here

In Lock Up: Again

In the hospital again. Since my internet access is limited, I won't be able to post a full update till I get out. Hopefully that will be by next weekend.

The Great Escape

Finally came home on Friday.  Problem is with coming home is that I spend close to a week just recovering from the hospital stay.  I'm still on IVs, but I've pretty much recovered from my stint at Stanford.

Saw an endocrinologist while in Stanford.  She put me on a sliding scale for insulin injections, and I have to do carb counting.  Carb counting means that I have to count every gram of carbohydrates I will be consuming during a meal and then I adjust the amount of insulin to inject.  Since I have an extreme fear of needles, injecting myself is impossible at the moment.  My mother has to give me the shots.

My other issue is that the insulin makes me exhausted.  I told the doctors at Stanford and they claimed that it wasn't the insulin.  I even told the endocrinologist and she didn't think it was the insulin.  I just find it strange that I can't even finish a meal before falling asleep after I receive an injection.  And this happens every time.  I have notified my own doctor.  Hopefully, he'll have some answers or can refer me to someone who does.  I did speak to the nurse there and she said my falling asleep after taking the insulin is not normal.  Especially since my sugars are in the normal range after taking the stuff, there shouldn't be a reason for me to be tired suddenly.

Another plus to being at home is that I get to use my own glucose monitor.  The one at the hospital requires a lot of blood for a sample.  The nurse literally had to squeeze my finger until the blood was dripping before the monitor would read it.  If I had stayed there any longer, I would have been bled dry. 

My glucose monitor at home is the Freestyle.  It takes a tiny sample of blood.  I mean a paper cut would produce too much blood for this thing.  I like it though.  I can take samples from my arm instead of my finger and it barely hurts.  For me that's a good thing since I use my fingers for a lot of stuff (sewing, typing...) and the pain from stabbing them everyday would be too much.

I didn't start with the Freestyle.  My first monitor was an AccuCheck.  I hated the finger sticks.  My fingers were so sore.  A close friend of my mother's is a diabetic nurse and she gets free samples of monitors all the time (companies want her to recommend their products to her patients).  We had gone over to talk to her when I was first diagnosed with CFRD to get some information and tips on what to do.  By then all of my fingers were pretty sore and I was holding off on my favorite hobbies.  So this nurse had me try one of the Freestyle samples that she had.  I really liked it, so she taught me how to use it and arranged for me to get one.  So six years later, I'm still using my Freestyle.

Since my IgE levels are going down, the doctors did lower my prednisone.  I was so happy.  I'm not a fan of prednisone and do all I can to avoid having to take that medication.  It makes my mind race, me feel like I'm starving, messes with my sugar levels, lowers my bone density, and probably a list of things I'm not aware of.  So getting my dosage lowered made me very happy.

Now I am home.  Sleeping in my own bed.  Eating my own food.  Playing with my own dog.  And I get to see my own doctor on Monday.  Life is as it should be...for now.

Lock Up Day Six

I am on day six in Stanford hospital. The level of care is still extremely good. Kind of surprised at some of the services offered here. Patients are offered massage therapy. CFers get two sessions a week for free. Haven't had a chance to take advantage of it with everything else going one, but it sounds cool.

I don't think the doctors are used to argumentive patients.  I'm not saying that I am purposely arguing.  I just want to be sure that we are all clear on what I think about treatment, and what I am willing to do.  One doctor actually told me that this wasn't a negotiation.  I know they are doing their best.  And I haven't told them about my science background (wanted to see how I was treated if, they assumed I didn't understand beyond basic biology).  So they probably don't completely understand why I want a better explanation before agreeing to any treatment.

One doctor did answer as to why I feel pain in my port area even though it's been close to three years since the surgery.  Nerves get damaged during the surgery (they have to make a pocket for the port) and they never completely repair.  So every once in a while there will be extreme pain in the surgical site.  Sort of like the nerves having a flashback of the surgery.  It all feels very real, and the pain is real, it's just that nothing is currently cutting into the area.

Somehow broke my bed yesterday. First the foot got stuck in the upward position and it took awhile to get it to go back down. Now the head won't come up. I had to laugh. Most people "break the bed" doing extra curricular activities. I break one doing CPT.

My sister took a few days off and came over to Stanford to stay with my mom. It was nice having her. Someone to tease always helps the healing process. Her being here also helped my mom out. She didn't have to go back to the hotel alone, and my sister is good at providing a sympathetic ear when needed.

Unfortunately, my sister had to go back home today. She had a boyfriend, dog, and job to worry about. The joys of being an adult.

They brought in a bike for me to continue my workouts. I was so excited. I just hate the fact that no matter how far I build myself up, the moment I get sick I have to start the workout process all over again.  This time though, I am starting the process while still in the hospital.  Maybe that will help the rehab time.

Have had to deal with some issues.

My blood sugars keep going up, so I'm supposed to speak with an endocrinologist sometime today to find out the best course of action for me. I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) a few years back, but my diet and lifestyle were enough to keep it at bay (no need for insulin at the time). Now it's looking like I might have to start taking insulin. So far my sugars only spike up on prednisone days. Non prednisone days show my sugars to be low. So I'm guessing that if I do have to start taking insulin it will just be on prednisone days.  I'll just have to wait and see what the endocrinologist says.

The whole concern about all this is that if I go through with getting a transplant, some of the anti-rejection medications will put me at higher risk for diabetes. This doesn't take me out of the consideration process, it just means that there's something else that needs close monitoring to ensure optimal health.

Personally, I'm still praying for a miracle that will give me another ten years with these lungs.

In Lock Up Once Again

Well, I went to Stanford for the Pre-transplant evaluation. The trip did not turn out like I had planned. It was supposed to be four days of testing with me returning home on Friday. I was planning on giving a full run down on the pre-transplant testing process when I returned home. That has been postponed for now.

Things did not go as predicted. The first couple of day went fine. I was feeling pretty good. Not run-a-marathon good. But walk around without gasping good. By Wednesday night I was vomiting. Thursday I was sent to the ER with a fever of 102.4F and a heart rate of 145 bpm.

It was a little intimidating being sent to a hospital that I am unfamiliar with.  I am used to going to a hospital where my doctor has pull.  He's the type who will meet his patients in the ER and start issuing orders for patient care right away.  So not having him there had me a bit anxious.  I didn't know how the doctors were going to be.

Since I was in Palo Alto, I was sent to the Stanford ER, not the UC Davis ER.  The ER staff was very good and worked hard to diffuse a stressful situation.  I was sent to the Peds section of the ER since the peds doctor was the ER dr who was familiar with CF.  They had a flat screen TV in the room with movies.  In the hall was a cabinet with stuffed animals and colouring books (it was locked of course).   I was sent for X-Rays, Ultrasounds, and blood work to find out what was going on.  By evening, I had stabilized and was sent to a private room on the Cardiac ward for observation.

I was nervous about being sent to a floor, since quality of care seems to change according to the ward you are on when it comes to being in UC Davis.  So I wasn't too sure about Stanford Hospital.

The care on the Cardiac ward was great.  Someone came to check on me regularly, and call lights were answered in a timely manner.  I was very satisfied with my care on the Cardiac Ward.

Friday evening I was moved to Stanford's CF ward (where I am currently).  Yes, Stanford has a CF ward.  Davis doesn't even have that.  And CFers get offered two massages a week during their stay!  Pretty cool.  So far I have not been disappointed by the quality of care provided by the staff.  If my nurse is unavailable to answer my call an assistant comes in to handle my needs.

I actually have a view from my window.  Not just some bare walls and some wires.  I can see trees, grass, and sky.  From the Cardiac ward I could see the fountains.  I have a flat screen TV in the room.  The resolution isn't top notch, but it is better than other TVs I have seen during my many hospital stays.  Patients are provided with Movies on Demand, internet access, games, and cable all from the TV provided.  Pretty nice set up.

RTs don't complain when you ask for manual CPT.  And they don't complain about how much time your treatment takes to complete.  Treatments only occur during waking hours unless you really need a night treatment.  That's more of a doctor decision than an RT one.  It is kind of nice being able to sleep through the night though.

Housekeeping asks your permission before coming in to clean.  It's not like I'm going to say, "no," I like having clean room, it's just nice having someone ask before invading my privacy.

The staff always knock before entering.  It gives a small feeling of control over my environment.

The doctors seem competent.  They don't act stuck up.  And they definitely don't act like the Dr. House.  But they keep that boundary between doctor and patient, which I find frustrating.  They don't act arrogant about it, but they have this idea that I should listen to whatever they decide without my own input.  So it's a little annoying. 

I did insist that the Stanford doctors keep my own doctor in the loop.  He knows my record and what's the best course of care for me.  If they don't want to truly listen to me, I hope that they listen to him.  Else they will end up finding out how much of a problem patient I can be.

Monday, I will be doing a PFT.  Hopefully, it'll turn out well and I'll be allowed to go home.  While I have been treated quite well here, I would rather be somewhere familiar.  Besides, I miss my dog.

Part 3: The Ward

When I was moved to a normal ward, all I wanted to do was sleep.  Which was what I did for a couple of hours before my next treatment.

On the ward, I faced a new set of problems.  Getting a good nurse was a shot in the dark.  Some nurses were great and very responsive.  Others, treated me like I was wasting their time.  Call light response time was much longer.  And sometimes my nurse wasn't even told that I needed her.

Finally got the nose bleeding to calm down.  It hadn't stopped, but it wasn't tissues full of blood several times a day.  They hooked a humidifier to my oxygen so it wouldn't irritate my nose so much.

I was no longer connected to a bunch of monitors.  And I could use the bathroom on my own.

Once I reached the point where I could sit up and talk normally, I decided to try trendelenburg.  I ended up coughing so hard that I started gasping.  The RT had to up my oxygen.  The coughing itself isn't the problem.  When I cough up such a large amount, some of it blocks my throat.  No air can pass through, so my brain starts to panic.  Once all the mucous is out, I can breathe again.  By then, I usually have a headache and have seen the flashing lights.  It took a few days before I could do trendelenburg without having a problem.

Once I was okay with trendelenburg, my doctor decided to add something new to my therapy.  He put in orders for me to ride a stationary bike while inhaling my hypertonic saline.  Now if this had been the first time he had brought up the idea, I probably would have looked at him like he was nuts.  My doctor had brought the idea up to me a couple of years ago.  He had wanted to do an experiment to see if doing a breathing treatment while exercising would increase how deep into the lungs the medication would go.  After some discussion, I come to the conclusion that it was a good idea to test.  Nothing seemed to come of it though

This wasn't an experiment though.  My doctor was just trying to get my crud out of my lungs and get them to strengthen up a bit.  My first round on the bike was like my trying trendelenburg.  I didn't last five minutes.  I was coughing stuff up, gasping for air.  The RT had to turn up my oxygen for me.  I was so shaky, it took me awhile to be able to continue with my treatment.  Like with trendelenburg, it took me a few days to go up to the ten minutes my doctor requested.  I actually began to like that part of my treatment.

This was the longest hospital stay I've had in a while.  I stayed for two weeks.  By the time I got out, I had missed the first week and a half of school.  Had one week to prepare for midterms.  The best part was my mom brought Mick with her to take me home.  He was so happy to see me.  He kept licking my face and wouldn't budge from my lap.

Now that I've been home for a while, gotten caught up with schoolwork, in the middle of moving, and have had a follow up appointment with my doctor, I've decided that I like the bike idea and am now searching for a stationary bike for use during my treatments at home.  Who knows, maybe enough CFers will give it a try, the CF Foundation will fund a research project to see if it really works.  And it's something I don't have to wait for FDA approval to start.

Part 2: The ICU

Once I got to ICU, the staff didn't waste any time.  They switched out my monitors (heart rate, O2, blood pressure, temperature...) for their own.  Because I'm allergic to adhesives they had to manually take my temperature every couple of hours.  They also had to take my blood pressure manually.  My blood pressure naturally runs on the low side.  When the machine tried taking it, the alarms would go off.

I can't say I got much sleep in ICU.  I had a "private," glass room.  It reminded me of the gorilla enclosures at the zoo (everyone walking by feels the need to stare).  The reason for no sleep was that my doctor ordered my treatments to occur every two hours.  One treatment takes an hour and a half, so sleep wasn't likely.  I was awake for 36 hours before my treatments were changed to every four hours.

The way those glass rooms are designed is kind of odd.  I could hear all the noise going on in the ICU (not a quiet place to be), but never smelled anything.  At one point during my stay, there was an announcement for a Code Red on the floor.  Since it didn't state where on the floor, and I didn't see or smell anything, I figured that the fire wasn't in ICU.  Turns out someone burnt some popcorn (complete with flames) in the microwave.  My Respiratory Therapist was freaking out because he was working so hard to get me breathing comfortably, the last thing he needed was for me to have an asthma attack on top of my breathing problems.  From what I was told, the burnt smell permeated through ICU.  I never smelled any of it in my little glass room.

A problem that developed while I was in the ICU involved nosebleeds.  I had been having nosebleeds at home, but they were light and slightly irritating.  My first day in the ICU, I had to keep blowing my nose and the tissues would be full of blood.  The RT was nice and acted like it was normal.  I was completely freaked out.  Only time I've gotten that much blood is in the morning, when it has built up all night.  This was several times in one day.  The only thing they could suspect was my being on prednisone and then being on oxygen.  Was never checked for any CF related sinus issues.

The beds in ICU are pretty cool.  The nurse can push a button and the bed will take your weight, without you having to get up.  To prevent bedsores, there's something like a massager that slowly moves throughout the bed.  And the bed turns into a chair.  The nurse will push a button and the bed starts folding, sitting you upright.  I was sorry to give up the bed when I was moved to a normal ward.

The staff in ICU was great.  Longest I had to wait on a call light was five minutes.  They wouldn't allow a call to go through to my room if I was sleeping or doing a treatment.  Visitors had to get permission from my nurse to see me (sometimes there are people you just don't want to see when you're sick).  They figured out the intervals in which I asked for water or to use the bathroom and came in to help me before I even pressed to call button.  When I first arrived, the nurses made sure to remove anything in the room that I was allergic to.  They didn't want to risk my having a reaction on top of everything else.  And to top it off, they were friendly.  The nurses didn't treat me like I was wasting their time.  They made a stressful situation a little easier to deal with.

The attending for ICU did not make things less stressful for me.  First off, she never introduced herself.  She just kept sending in the residents to relay her orders.  I don't care how good a doctor a person thinks he/she is, I am not going to follow order from someone who can't even come in for an introduction.  I'm not saying that it has to be some long conversation.  Just come in and say, "Hi, I'm Dr.________.  I'll be handling your care while you are here.  If you have any questions or problems, just have the nurse page me."  It's short and doesn't even take five minutes.  This was the first time in my adult life that an attending did not bother with an introduction.

While the attending did not have time to bother with an introduction, she did have time to talk about me to her residents outside my room (remember I could hear everything through that glass).  That's where most of my issues with her came from. 

While in ICU, I didn't eat much.  I was coughing up some nasty crap, and was blowing tons of blood from my nose.  I was sleep deprived, and dietary wasn't sending foods I could eat anyways.  These things alone are reason enough to not be hungry.  I also have a habit of not eating before a treatment.  It's hard to hold food down when you're coughing up a lung.  Since my treatments were every two hours, and an hour and a half each, it didn't leave much of a chance for eating.  My own doctor didn't make an issue of it.  He's been dealing with CFers for so long, he understands this habit.  I was being pumped full of fluids through IV, and was drinking plenty.

Apparently, the attending didn't agree with my non-eating status.  Instead of talking to me and my explaining why I wasn't eating, she had a chat with her residents outside my room.  She told them to tell me that if I would start eating, that they'd have to put in a G-tube.  She also told them to tell me that I had no choice in the matter.  If I had had the strength, I would have yelled at that doctor.  This resulted in me telling my doctor (he checks on his patients each day), who happened to be there with the RT from the CF clinic.  I was fairly angry and asked if the attending was aware of a little thing called the "Patient's Bill Of Rights."  The RT laughed and said that CFers are the wrong people to make threats like that to.

Another day the attending stood outside my room and told the residents to see if they could get me to eat peanut butter.  She completely lost any shred of respect I might have had for her then.  I love peanut butter, I miss eating it.  However, eating peanut butter is not an option.  If the attending had read my chart, she would have seen "peanut butter" in the allergy section.

The attending also told my RT to make me go in trendelenburg.  Now I was having trouble breathing sitting up, there was not way I was going in trendelenburg.  Since my RT refused to force me, the attending sent a resident to come and try to convince me.  I flat out refused.

I decided to pay attention to every order the attending made regarding my health care.  It's a good thing because she ordered heparin shots (I bleed easily and was suffering from a bloody nose, heparin would have made it worse) which I had to refuse.

The attending was basically a woman on a power trip.  And I'm sure she wasn't used to people beneath her (especially a measly patient) saying "no."  Even in my worst state, I wasn't going to let her have the upper hand.  I wonder what her patient survival rate it.  I have no doubt the attending was happy to have me leave "her" ICU.

I honestly think that doctors should be required to pass a course in bedside manner before renewing their licenses.  They would have to be graded by real patients (ones who are constantly in the hospital) to pass.

I left the ICU just in time to ring in 2010.

Trip to The ER

I know it's been awhile wince my last post.  Makes my goal of posting once a week seem futile.  My being MIA was not without good reason.  The reason which will be detailed out in this serious of three posts.

After Christmas, I got sick.  Caught some sort of cold and still haven't figured out from who.  Instead of getting better, I just got worse.  It got to the point where my mother had to drive me to the ER (I protested the whole way there, between gasps for air).

When we got to the ER a nurse checked my vitals.  My pulse was at 132 and O2 sats were 88%.  This was at rest.  So basically, I didn't have to spend hours in the waiting room waiting for help.  I was quickly taken into a room where they put an oxygen mask on me (set it to 4 liters) and gave me three albuterol treatments, back-to-back.

During this time they also did an EKG.  Second one I've had in my life, and the second one in three months.  The EKG showed that though my heart rate was extremely fast, my heart was still in good condition.

At some point my doctor came in (I had called when I was on the way to the ER).  I'm guessing I looked pretty bad because he told the ER doctor to have me sent to ICU.

Once I was somewhat stable (on oxygen and port accessed), I was sent from a private room in the ER to one of those rooms where there are several patients separated by curtains.  Then I had to play the waiting game.

At some point while waiting, I needed to use the restroom.  I told the nurse.  Since my heart rate was so high, the doctor left orders that I wasn't to get out of bed for anything.  So I had to use a bedpan.  I'm glad my mother was there to help me out because that was an extremely humiliating experience for me.  My bladder can hold quite a bit of fluid (over a liter) before I need to go.  The bedpan that was brought was apparently too small.  So in the end, my sheets needed to be changed, I needed a bath and a clean hospital gown.  Eventually, I was moved to a "private" room (it was a glass room in the same area of the ER).  It had its own toilet.  The nurse had decided it was less stressful to let me use the toilet than the bedpan.

I remained in the ER until about 3am (went in at 2pm).  Then I was sent to the ICU.

No updates.

No updates this week.  In hospital.

In Lock Up Once Again

Since my last post, I was found not to have the H1N1 virus. I was released on the 24 and was pretty happy to be going home. Just had some asthma issues but I figured that I could handle it. I spent three days at home feeling good and healthy. Was a little tired, but otherwise was feeling pretty good.

By Monday though I was having trouble breathing. I figured that I was just a little out of shape from the flu and it was nothing to worry about. By Friday, I was gasping for air when I would brush my teeth. I called and went in to see the doctor and ended up being sent back to the hospital. Turns out that I had managed to get a small tear in one of my lungs, causing air to leak out. This would explain the difficulty breathing and tight chestedness. X-rays didn't show wear the tear was located but they did show air bubbles in my neck. Can actually feel them when I press the sides of my neck. Kind of like pressing on bubble wrap. A little freaky.

So for the past few days I've been going through blood tests, ultrasound on my legs, X-rays... Just to make sure that I don't have any other problems going on. Good thing is I don't have any clots in my body, which I could have told the doctors that since I had none of the classic symptoms of clots (swelling in legs, pain...). My white blood cell count was pretty high though. When I had the flu it was only at 5 now it's at 20000. That means I'm trying to fight off some sort of infection. And I lost even more weight. So since the flu, I have lost over 10 pounds. It took me three months just to get to my goal weight. So this is a serious setback.

I'm back on IVs for now. The tear seems to be healing since I can walk short distances again without gasping for air. I can brush my teeth without feeling like I'm going to pass out. And the air in my neck is slowly going away. My oxygen levels are going up slowly (currently at 94%). And I have managed to gain back a pound. So I am improving. It's just a slow and frustrating process.

Unfortunately, with this hospitalization I have missed too much class to catch up. So I had to file a Planned Educational Leave Petition for the quarter. Means I won't be getting my degree till March 2010 now. Sort of a let down, but my health is more important. Going to have to find ways to keep my mind busy till I can go back to school in January. I only have two classes left, so I feel a little frustrated. My goal is so close, yet so far away at the same time.

This hospital stay had a stressful start. First I get sent here for not being able to breathe, and then I felt like I was dealing with nurses who just had no clue. I had a nurse try to access my port, turns out it was her first time and she missed. Twice. You have to realize, a port is an easy stick. Just have to get the needle in this rubber thing that is under my skin. Much easier than trying to find a vein. In the end they had to have an Action Nurse (someone who specializes in IVs) come up and access my port. She was a nurse I used to know in Peds. She did one stick and was done. Pretty simple.

The port issue wasn't the only stressful thing I dealt with. The hospitalist (doctor assigned by the hospital) kept treating me like a child and she wasn't telling me what was going on. And she kept changing my medications without even notifying me. She even ordered finger sticks before and after I ate. And she ordered heperin shots. I finally just had to start refusing things, just so she would contact my real doctor.

The whole time I was having a hard time breathing and I was thinking that this was stress I should not be having to deal with. Finally got to a point where my mother started staying the night with me so that my wishes would be respected.

Things have gotten better since my own doctor stepped. The finger sticks stopped, and he gives me answers. Even if it's a "we're still trying to find out what's wrong" at least he keeps me in the loop. He doesn't want me going home till I show more improvement. I guess he's making sure not to have a repeat of sending me home and me having to return a week later.

Throughout all this I am surprised that they don't have some sort of note in my chart saying that I'm a noncompliant patient. I had to lecture an instructor on the importance of asking a patient for permission to have a student do a procedure, before letting the student do it in the first place. I was pretty pissed at her and may have come across rudely. The doctor had ordered that I receive my flu shot and pneumonia vaccine. Not really a big deal, but for some reason it was decided to let a student give me the shots and I wasn't consulted. The student's shots really hurt and then the instructor was telling the student that she should be present for another procedure that I was going to have. All this right in front of me without asking if I was okay with it, so I told the instructor that she needs to ask the patient first. She looked a little shocked that I would say such a thing but at least she didn't try arguing with me.

Don't get me wrong, not everyone here is incompetent or unfeeling. I have nurses who are on top of their game. One even brought me information on a new drug that the hospitalist had decided to put me on without even consulting me. When I complained to the nurse, she brought me info on the drug to read, so I could make my own decision on it.

I figure this is a good time to give a little warning to my readers. Some of my articls will be planned out. But times like this, I will put the article I've been working on aside to give you a taste of what is going on right now. Given time, I might actually be able to include some photos so you can have a better view of what it is like.