Holiday

Well these last few weeks have definitely been busy. It seems like we all go crazy for a month getting ready for Christmas and then it is all over in just a few hours.  I guess that is part of the fun.  I was really excited for Black Friday because Jason and I were trying something new and I am always up for a little adventure; but besides that I didn't get into it much.  Two weeks before Christmas we went out and cut down our own tree.  Another thing that was new for us, but it took us until December 23 to get the motivation to decorate it.  This is not normal for me at all because I love this time of year.  All the lights, and the music....(Christmas music on the radio was annoying me, they start way too early)  I know some of the issue was because I just didn't have the energy for a lot of it, but I am not sure if that was the whole problem or not.  It kind of makes me sad.

Enough is Enough

I went back into the hospital on December 2nd.  Again I was coughing a lot, fevers all the time, not sleeping through the night.  I had to go in yet again, but this last hospitalization sucked.  Things were just going wrong left and right.  I am use to hurdles.  I come across them every day and can normally get through them.  When things come at me one after another, and I am not feeling well to begin with…I do eventually break down at times.

Evaluation Complete

Update on what is going on.  A few weeks ago I had an angiogram done.  They needed to take measurements in my heart so they needed to send a catheter up the vein or artery in my groin until it got to my heart.  Because it was an invasive procedure I had to be admitted into the hospital for the day.  My grandma brought me because I was going to be under anesthesia.  I was also told I would not be able to drive for two to three days after the procedure.  We got there around 10:00 and I was put in a room.  I was told I had to wait for the doctor to arrive and I was scheduled to have it done at 2:00.  They gave me an IV and surprisingly took me down around noon. I waited in the recovery room for about an hour for the doctor and then went in.  The procedure itself was not too bad.  They gave me a little bit of a sedative and a local where they put the needle in my groin so I felt minimal pain.  The doctor talked to me the whole time and was great.  He was making jokes with me and told me he was going to bill me for all the educational information he was giving me.  I was asking about everything.  I wanted to know what he was doing and why he was doing it.  I can't really relay much of it back because to be honest a lot of it is a blur to me. I remember a few things he said to me and I remember talking to him, but I don't remember much of the context.  Those drugs can really mess with you.  lol

Get Busy Living or Get Busy Dying

Since I have been off the antibiotics I have been feeling relatively good. The first couple days after I got home I was still getting winded easily.  A couple days ago though I have been noticing an increase in my energy.  I am doing my best to keep myself as active as possible without over doing it.  It feels great to be able to do things.  Today I even had energy to do some cleaning in the second bedroom.  We still have a few boxes that we never unpacked so I decided to tackle some of that while I had the ambition.  lol  Hopefully this lasts for a little while.

The Other Side of This Life

On September 29th I had my orientation with Roswell and then went back into the hospital for IV meds right after.  I was having a very hard time breathing and needing oxygen all day long.  Even with the oxygen on I couldn't walk ten feet without becoming winded. Thankfully I was able to get through the orientation and that went good.  There was about twenty of us and we all sat through a slide show and learned what was expected of us as volunteers.  We were all given a health assessment that we had to fill out.  One of the things on the list was getting two PPD's.  I had one done earlier in September so all I had to do was get one more and have my doctor fill out the form.

Back in N.Y.C.

On Sept 6th I had my primary appt for my PPD and chicken pox vaccine.  The PPD was just a small injection put under the skin.  It creates a bubble and then the doctor draws a circle around it.  In two days the doctor has to read it.  If it is gone you are tuberculosis free, if it is pink in color then you are positive.  Mine was negative.  The pink bubble was gone in a few hours for me.  I had the echocardiogram done on Sept 9th.  This was a simple test where I just laid back while they took images and reading from my heart.  It was a lot like an ultrasound.  Shortly after that I got a call from Roswell Cancer Institute. I had applied there to do some volunteering.  He called to set up a date for Orientation so I could start.  I really want to be a research coordinator someday, but all the job offers require one year of experience.  Right now I only have six months so I figured this was a good way to start with the experience and maybe get my foot in the door.

Testing 1, 2, 3 cont.

Monday I went for the DEXA scan and upper GI.  These were scheduled on different days because the DEXA scan can't be done if any contrast was used for a previous test within seven days.  They were both simple and not bad at all.  For the DEXA scan I laid on a table while they took pictures of my hips.  It was quick and painless.  The UGI wasn't too bad either. The barium that I had to drink didn't taste too good, but it wasn't the worst thing I have had to eat or drink.  First I had to fill my mouth with it and then swallow when the doctor told me. I think that was the worst part.  He took pictures of it going down while I was standing and then he laid me down on a table and took pictures of my stomach from all angles.  My favorite part of these is seeing my insides on the screen.  It looks so cool as the barium goes down the esophagus and then splashes into the stomach.

Testing 1, 2, 3

Things are going pretty good.  I felt pretty overwhelmed when I got out of the hospital, but I am starting to get things organized again.  The apartment is pretty much set up except for one room and most of my Dr's appointments are scheduled... just waiting on a few call backs.  My port is healed for the most part.  It is a little less than three weeks since the surgery. I don't really feel it anymore.  Sometimes I feel it when I am lying on my stomach and it hurts when I hit it.  Jay threw a shirt at me and it didn't hurt when the shirt hit me, but then a second after I felt the pain.  It wasn't a strong pain and it didn't last long at all, I just didn't expect it.  haha  It is hard to explain, kind of like a delayed reaction.  Like when you touch something hot for a split second, you pull away on a reflex and actually feel the heat a second later.  I also hit it on the couch when I leaned forward to see my kitty Lindy.  Forgot about it haha.  So a little sore if I mess with it, but I don't even realize it most of the day. The one thing I am really nervous about though is the appointment to get it flushed.  They are going to teach me how to put a needle into it and flush it with heparin.  This needs to be done once a month to keep it from clotting.  I have a cream that will numb my skin so I won't feel it, but I am still nervous about sticking a needle into myself. I am not a queasy person, I could do it to anyone else, I just don't know about myself.   haha

Start Me Up

I went to the Dr's and the PICC line is out. My PFT's went up to 35. So it was worth it to go one more week. I am not going to lie, I am not overly thrilled with being at 35 after a round of antibiotics, but I guess that is where I am at right now. Hopefully I won't have to go back in for awhile and the plus to that is when I do go back in I won't need a PICC line. :) Having this port is going to make that much easier for me.

So I made appointments for all my radiology related tests. Three will be done next Wednesday and then the other two are made for Friday the 19th. I am then going to make an appointment with my primary doctor for the chicken pox vaccine and also to ask her which cardiologist I should go to for the other tests, including the one I am a little nervous about, the right heart catheterization. I don't really know what it entails. It might be easy and no big deal, but I don't know.. something about it makes me nervous. I just have to relax and do one thing at a time I guess.

No Rest for the Weary

A lot has happened over the last week between moving and recovering.  Friday I had the port inserted into my chest. The surgery wasn't bad at all. I honestly don't remember most of it. He told me what he was about to do right at the beginning and then the next thing I remember was him saying, "She is done. Just have to clean it up a little bit." During the week the surgeons told me "This is just a minor surgery", "You might feel sore or have some discomfort", "You can go back to regular activities in 24 hours". Umm...not quite. I woke up and was fine while the drugs were still in effect, but once they wore off I definitely felt it. My nurse got me a lortab, but even with that I was having a hard time sitting up to eat. So Friday I just laid in the bed unable to do much. As long as I didn't move it wasn't too bad. The worst part of the whole thing was when I was coughing. Right after the surgery when everything started breaking up...that was the worst. I really wanted to go home on Friday because I wanted to help Jason pack up the last room, but that was not a possibility. He was a little mad that I got the surgery the day before we were planning on moving, but the surgeons told me I would be fine and I really wanted to get it done this admission. If I had waited I would of had to get another picc line my next admission and then get it done. As inconvenient as it was, I think I made the right decision.

Scars and Souvenirs

Over the last couple days I have been talking to my doctor and we both agreed that the port is the best option for me.  On top of the things that I mentioned in my last post, I was told that after so many of them I can become prone to blood clots in my arms.  So to prevent the pain of placing a picc line every three months and the clots in the future I am getting this access port.  Once it is in and healed it will be like it is not even there.  It is under the skin so it is not exposed. I was told that I won't even feel it in there. All the maintenance that is needed with this port is that is needs to be flushed out with saline and Heparin once a month. This is done with a needle and flush. I won't even feel when this is accessed because I am given Lidocaine cream to numb the skin beforehand.

Penthouse suite 1011

I was admitted into the hospital on Thursday.  I really didn't want to come back in already. I was just in from April 22nd to 29th and then was home on IV's for a week.  My hospital stays are becoming closer and closer together.  As much as I don't want to be here right now I physically didn't have a choice.  I was really having a hard time breathing, I was coughing bad, and had fevers.

New York, New York

On June 30th Jay and I headed for NYC.  We had the hotel booked for two nights, a babysitter for Lindy (my kitty), pop and snacks in the car, the paperwork for the doctor and all of our luggage.  Traveling with CF is not an easy thing because we can't exactly pack lightly.  On top of the normal stuff people take with them on trips, I have to bring my vest, nebulizer, all my meds and my oxygen concentrator.