Thursday, September 8, 2011

Just checking in

All is still going well.  My numbers are good and my bloodwork came back pretty much normal.  I'm not scheduled for another biopsy or doctor visit until October, so that's good.  My only issues are chest pain (still from the surgery).  That may take up to a year to heal because they went through all the muscle and nerves across my chest.  It hurts all the time but even more when I've been particularly active.  It's a catch 22 because the exercise is so good for me and the healing process, but it causes enough pain that it increases the need for pain meds and wipes me out for a day or two.  I'm also fighting fatigue/sleepiness which is probably from one or more of the meds.  Unfortunately, I can't fall asleep at night.  I will be sooooo tired, but as soon as I lay down, I toss and turn.  I also get up once or twice a night to use the bathroom (another side effect).  The strangest side effect I have, though, is itching.  I don't have a rash, but my skin starts itching every night and I scratch until I've left horrible looking marks wherever I've scratched.  I need to be very careful because if I actually break the skin, it will leave me open for infection,  I lather myself with lotion designed for itching, but it doesn't work very well.  All of that is still a very small price to pay in exchange for life, though. 
Hannah and I did make corndogs the other night.  We couldn't find the Dipsy Dog mix like they use at the fair so we made some batter using a recipe we found on-line.  They weren't pretty but they tasted okay.  I found a few website that sell the Dipsy Dog mix so I may order some.  We did not, however, dress the dogs like livestock.
We have been cleaning the storage area in the basement in preparation for a yardsale we are having on the 17th.  That's been kinda fun because I have come across a lot of memory evoking items that have made me laugh and cry.  I have gotten rid of a lot of things that I couldn't remember why I kept them in the first place.  A lot of things are going into the yardsale so wish us luck.  Any money we make is going to be spent on something fun.
There's not been a whole lot else going on.  I have enjoyed spending more time with Jess and Parker which is always a treat.  I also went to my great nephew's 7th birthday on Monday.  My niece's kids are so freaking cute; she and Bert did well.  They are really good kids, too.  Jamie makes me very proud; she is an amazing wife and mother and her kids reflect that.
I will write more later.  Take care all!
Becky

Friday, August 26, 2011

quick updates

The biopsy I had a couple of weeks ago showed no rejection, pneumonia, etc.  which is awesome.  However, they cultured the biopsy they did in July and after 6 weeks, it has grown out aspergillus (sp?) which is a fungus that all of us breathe every day but usually only people with compromised immune systems have problems from it.  I have to use a nebulizer twice a day now with an anti-biotic to fight the aspergillus.  Oh well, still better than the alternative!
Stay healthy!
Becky

Thursday, August 25, 2011

5 month anniversary

I awoke this morning with a headache and fully intended to have a pity party.  Then I received a text from Jimmy wishing me a happy 5 month anniversary.  So, I decided to try not to have a pity party even though I had a terrible headache, had to go for more bloodwork, AND had to have a cavity filled (all before 12:30).  The reason I had decided to have a pity party is because I have been reminded recently of all the things I can never do again.  Such as go to the fair and walk through the livestock exhibits (don't ask me why, but that was a big highlight of mine every year).  Worse than that, I can't eat out of 'food trucks' which means I can never again eat a corn dog from the fair or any other fair, carnival, picnic food.  Corndogs are my absolute favorite and I would eat at least two every time I went to the fair.  They were fresh dipped and fried - add a little mustard.  YUM!  And when they came out with a FOOT LONG?  Shut the front door!  Hannah (my 14 year old) said we can make corndogs at home.  I think I will have her dress the dogs as small livestock and her, Corey, and Jimmy can black out a few teeth and be carnies.  We can do the clear the pool table game and guess my weight, etc.  It'll be just like the fair!  Only this time I won't get drunk or sunburn, won't come home broke, and won't wonder what, exactly, the attraction is with smelly livestock anyway.  I guess my one true regret is that I didn't get to see my great-niece, Samantha's first place zucchini bread on display.  I'm sure her mom took a picture.
About 2 1/2 years ago, Jimmy took me to Key West - if you haven't gone, GO!  What an awesome place.  We had the opportunity to go snorkling off of the Dry Tortugas (if you don't know what/where they are, look it up - it has great history).  I declined to go snorkling because the water was too cold.  The crystal clear, beautiful blue, perfect snorkling water was too cold.  How stupid could I be.  Now I can never go snorkling; or swimming in any fresh or salt water; or public pool; or hot tub, etc.  I can, however, swim in our pool with our friends and family and avoid the crowds, the seaweed, the jellyfish, oil slicks, etc. 
I can never eat at a buffet.  We love chinese buffets, too.  I can't eat food at outdoor get togethers like family reunions or backyard barbeques for two reasons:  One, community dishes (everyone uses the serving utensils or reaches their hand into the same chip bowl) and, two when food is left out, the bacteria begins to grow immediately.  For people with healthy immune systems this is typically not a problem.  For me, however, I have no immune system and a very small amount of bacteria could put me in the hospital.
I can't see my grandchildren as much as I like.  With them being in school and Parker now in daycare, they are exposed to so many illnesses.  We all try to be very ambitious about hand-washing and using the anti-bacterial soap, but the germs seem to be everywhere.  I had imagined having Parker spend the night a lot and taking him to the zoo and the park.  When I am fully healed, I will be able to do those things (with help, of course), but that will be another 7 months or so.  I feel like I'm missing his infancy and toddler years.
On the other hand, I lived to see my husband, children, and grandchildren.  If not for the transplant I wouldn't still be here to enjoy life which includes spending time with my husband, kids, and grandkids.  I wake up every morning breathing easily; I get my kids up and off to school; I do laundry; I paint (paintings, not the house); I go out to lunch with friends and many other things I had not been able to do for quite a while.  Despite the whining (see above), I am eternally grateful for the gift I've been given and plan on making the donor family very happy and proud of who received their loved ones lungs.  I will not let her death be in vain.  I thank God every day for all of my blessings and try to think of ways to make it a great day.  Some days it just takes a little longer to kick start my celebration of life and shake off the pity party.
I love you all for listening - I hope I'm not too much of a crybaby and, as always, I ask for your feedback.
Take care and God Bless,
Becky

Thursday, August 11, 2011

Hospital stays, diagnosis', and other 'fascinating' information

So, just to get things right, I went to Jimmy for verification on my hospital stays as well as some of what went on during my 35 day stint when my brain decided to check out for a while.
Initial Stay For Transplant - March 25 thru April 8 (also had stomach surgery on March 29th)
Home - on April 8, ER on April 9
April 11 - Routine bronchoscopy (I must have one of these periodically to check my lungs for rejection or infection).  This time I had pneumonia and was put back in the hospital.
April 16 (would have been Diane's 57th birthday) -  home
April 19 - Back in hospital with uncontrollable vomiting.
May 23 - Home (I will give you the complete story of this stay later in the post/blog).
May 31 - Back in hospital with pancreatitis which, by the way, is the most painful thing I have ever experienced and I had natural child birth.  I was not allowed to eat or drink the 3 weeks I was suffering from this horrific illness.  For reasons I will discuss later, I was given morphine for pain instead of dilaudid which works much better, so the pain was pretty intense.
April 19 - HOME!!!  So far, for good!

During my 35 day stint, I was diagnosed with Mono, Epstein Barre, Histoplasmosis, VRE, CDIF, as well as had extremely high createnin levels (they talked about putting me on dialysis); I was vomiting, having migraines, had extremely low blood counts including a white cell count of .7; I had two blood transfusions, was not eating (I lost almost 60 pounds since March 25), and became confused and disoriented. 

I don't remember a lot of what occured during this time period.  Jimmy has filled me in on some, but not all.  He said it is good that I can't remember everything as it would just upset me.  At some point, I will ask him to tell me everything because it makes me uncomfortable not knowing.  What I do know is, I saw many doctors during this time to try to determine what was wrong (and there were various things wrong at different times).  My regular doctors who visited me daily were Dr. Allan Ramirez (Pulmonologist and the Transplant Lead); Dr. Victor Van Berkel (my surgeon who stands about 6' 7"); and Dr. Milo (Infectious diseases specialist).  In addition, I had visits frm Dr. Moffett; Dr. Moore; Dr. Jameel; Dr. Kondrapennini; Dr. Perez; and at least one other doctor who attempted to treat my migraines, but we don't have a record of her name.
Each day, any combination of these doctors would come in and quiz me:  What's your name; date of birth; today's date; where are you?  What's your husband's name? kids names?   I became so frustrated every time a doctor walked in that I would tell them to look at the board on the wall behind them if they wanted to know the date or my name.  I hated seeing them come through the door (except Dr. Milo and Dr. Van Berkel - they were the only two that didn't question me).  Apparently, one or more of the medicines they were giving me for pain or nausea had effected my thought processes and caused me to forget things and become moody and unpredictable.  Some days I refused to take my medicine.  One day I couldn't remember Jimmy's name or some of my kids' names.  Most days I didn't know what day it was; I thought I had been in the hospital for two weeks and it had been a month.  One of the meds made my vision so blurry that I couldn't read or watch tv.
I also suffered bad headaches.  Jimmy would get to the hospital around 9:00 am and stay until 9:00 pm or so depending on my condition.  I apparently wouldn't let him turn on the lights or watch tv because it hurt my head, so he would sit for 12 hours with nothing to do but watch me sleep or try to carry on an erratic conversation with me.  The doctors weren't certain that the confusion would ever get better - they told Jimmy it may be permanent if they couldn't figure out what was causing it.  I became dependent on dilaudid; every time I woke up, I would ask when I could have another shot.  On top of that, I was getting hydrocodone tablets every 4 hours and phenegran (by injection) every 4 hours.  I was so drugged that I couldn't get out of bed by myself. 
My step-kids came in the day before mother's day to visit and I barely remember them being there; Michelle, my daughter-in-law, said I looked like an elderly woman in a nursing home.  My mouth was drawn, my eyes sunken and had lost so much weight that I looked skeletal.  They only stayed a few moments and Jimmy took them to the cafeteria to tell them what had been going on and how concerned he and the doctors were about my condition and recovery.
I wouldn't let Jimmy watch the Derby because the tv hurt my eyes.  I got mad at him once and refused to take my meds so he had to call the nurse.  She had him leave and within 10 minutes went out to tell him I had taken my meds and he could go back in.  I don't know what she did, but I guess it worked.  I also refused to do physical therapy or occupational therapy.  I still mostly let them do my pulmonary rehab because I could lie in bed for that.  I refused to eat much of the time because I was afraid I would get sick so they threatened a feeding tube.  I had to undergo a spinal tap and a bone marrow biopsy.  The tap was not a big deal but the biopsy was terribly painful.  Jimmy and my best friend since childhood, Jeanine, were with me.  The doctor who performed the biopsy said she would sedate me but did not and the pain was nearly unbearable.
They finally determined what meds were making me sick and took me off several things.  I slowly started feeling better, but to this day still suffer some effects from that month in the hospital.  I don't remember things from one minute to the next and can't always think of a word I want to use.  Hopefully that will improve.
Several days before they sent me home, they sent me to the nicer room thinking maybe a change of scenery would help me recover.  It didn't really improve my condition, but gave me some interesting hallucinations that you read about in my earlier post.  They finally sent me home to finish recovering because there was nothing else they could do for me in the hospital.  Being at home with Jimmy and my kids and being able to sleep in my own bed did wonders for my recovery.
I had another biopsy several weeks ago and it revealed moderate rejection.  I had to undergo three days of strong doses of iv steroids which, hopefully, corrected the rejection.  I go back on August 15th for another biopsy, so wish us luck! 
Thanks for continuing to read my blog - I hope it's not too boring.  Again, any feedback you can provide is appreciated.
Love to you all,
Becky

Wednesday, August 3, 2011

Drug induced hallucinations...

While I'm waiting for Jimmy to sit down with me to write the blog on my 30 day stint at Jewish, I thought I'd share some of the strange effects the pain killers had on me.  I was constantly visited by people who weren't there.  They generally would sit next to my bed, just visible with my peripheral vision...of course, they never spoke, but they annoyed me none the less.  I usually told them to go away and they did.  Mind you, this meant I appeared to be talking to myself or the nurse/aide/doctor who happened to be in the room.  I had to explain that I wasn't talking to them, but the person who wasn't really there.  One day, a Tarc bus drove by my windows.  I was surprised because I was on the third floor.  A really annoying occurence was the white mist that was constantly covering my room.  Also, the wallpaper had very small specks on it that moved around like bugs.  The strangest hallucination I had was the last day or two of my 30 day stay.  They moved me from the room I had been in because they realized that I had been in the smallest, darkest room they had for nearly a month.  They decided to put me in a very nice, large room with windows, hardwood floors, an armoir, and chaise lounge for Jimmy.  I imagined that there was a secret corridor behind the fancy mirror on the wall and that the nurse, her husband, and teenage daughter lived there with their cats.  I actually saw them and heard them when the mirror was 'open'.  I even told them that I couldn't be around cats after the transplant and they promised to keep them out of my room.  I also apparently told my mom and brother that the room was haunted, plus I had small men hidden under my bed.  When I tell you what happened during my 30 day stay, these hallucinations will make a lot more sense.  I hope to get to that tonight; from what I hear, it's a wild and sometimes scary story.  Until then, take care.
Becky

Tuesday, August 2, 2011

Ready to go home (or am I?)

I was in 3 East for the rest of my hospital stays and can't say enough about the level of care I received from the nursing staff.  I wish I could name them all here in case they ever stumble on this blog so they know how much they meant to Jimmy and me.  He knew that when he wasn't there (which was rarely) I was well taken care of.  The first week following my surgery  I did amazingly well.  The four chest tubes were removed and I was out of bed for short periods of time and my surgeon and pulmonologist's poster child for how a successful lung transplant should work.  I had a set back the following week with severe nausea and vomiting.  I was scheduled for surgery on my stomach and esophogus to correct severe acid reflux.  Following that surgery, I did feel better but was in quite a bit of pain.  However, by the end of two weeks, I was off all intraveneous meds and pain meds.  The doctors felt I would be better off at home so I wouldn't pick up an infection from the hospital so I went home on a Friday, just two weeks after surgery. 
The next morning, I experienced numbness in my left hand and arm as well as a pulse rate of about 160.  We called EMS, took a trip to Jewish ER only to be told by my pulmonologist to go back home and increase my blood pressure medication. 
On Monday morning, I was scheduled for my first routine bronchoscopy.  Essentially, I am put under 'twilight sleep' and they wash my lungs with saline and then take several pieces to biopsy looking for signs of rejection.  They didn't find rejection; they found pneumonia.  So back in the hospital to 3 East I went for about four days (Jimmy would know for sure).  I will stop here because my next hospital stay was a 30 day drama that I will need Jimmy's help to tell.
Thanks for reading this far and, remember, your feedback is welcome...I want to inform, not bore to tears!
Take Care All,
Becky

Monday, August 1, 2011

Day One: March 25, 2011

I received the call from my transplant coordinator at around 2:00 am; they had found lungs for me!  It was surreal from the very beginning.   I told Jimmy and he reacted like we were on our way to the hospital to have a baby...running back and forth, trying to find clothes and think of things we may need.  I hadn't packed a bag because I fully expected to be on the list for quite some time.  I honestly thought that I would probably not make it until they found lungs; I was that sick at the time.  We woke Corey and Hannah and explained what was happening then we called their Dad so he could take care of the kids while I was in the hospital.  We called my daughters, Roslyn and Jessica, as well as my brother, Joe.  Jimmy called his kids, Jimmy and Jennifer. 
We got to the hospital knowing that the surgery may not go through.  There are many things that have to happen with the donar and the recipient before it is determined that they are a match.  I could have made it to the OR only to be told that the surgery was a no go.  God was with me and decided these lungs were meant for me. 
The surgeon, Dr. Van Berkle, flew to harvest the lungs and fly them back to Louisville personally.  I was finally taken to the OR which was full of people, all of whom introduced themselves and explained their role in the surgery.  I was strangely calm throughout everything.  I just was in shock that it was actually going to happen; whatever the outcome, it was out of my hands.
When I awoke in the recovery room, I remember Jimmy and a very nice, pretty nurse.  I knew I was full of tubes and such, but wanted the breathing tube out ASAP.  It really didn't seem too long before they were able to remove it and I could speak.  I have no idea what I may have said, but I was on so many painkillers, it probably was not anything important.
I vaguely remember being in a large recovery room for (I'm told) three days where I had a nurse all to myself.  The nurses at Jewish Hospital are phenomenal, by the way.  I seem to remember having visitors, but, other than Jimmy, I don't remember who.  I was then moved to 3 East which is the transplant floor at Jewish.  I'll continue my story in the next post.  Please give me feedback of what you think so far.
Becky