The life and times of a CF lung transplant patient

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It all started with the dog…

^Ocoee^

I know I have been a very neglectful blogger but I’m going to blame it on it being a hard few months especially the last one. It all started with my dog pushing me down my stairs.

I knew at the time when I spotted the dog toy sitting at the top of the stairs with my big german shepherd mix laying there next to it and the thought popped into my head, it was a bad one. Giving no heed to this intuitive thought, I went ahead and picked up the toy and threw it down the stairs. Instantly Ocoee was up and after the damn thing and he wasn’t going to let something as small and unimportant as ME get in his way. He bulldozed through me sending me at least 2 stairs down before I caught myself on the  hand rail. I yelled at him for being such a dope when really I know it was my fault for throwing it down the stairs and standing in between him and the direction the toy went… anyway I went on my way back up the stairs in towards my original destination not thinking twice about the event that just occurred, and certainly the impact it would have on my summer.

Two days  after this incident, my back suddenly became VERY painful. I waited another day to try to let it settle. It didn’t. I ended up going to the local ER for an x-ray and maybe a script for some pain meds. Seeing how my dad works in that hospital and in the radiology department we all thought it would be a quick in and out. It wasn’t. I ended up getting an x-ray as well as the pain meds but when asked if I wanted to stay the night just in case it got worse seeing how all the meds I’m on normally slows healing processes significantly, I agreed to stay the night. The night  and the next day went on without incident. All the while I was trying to let my Shands doctors know that I was admitted in a different hospital other than Shands for pain. Well by the time the doctors were correctly contacted and informed, I had sprung a fever! It shot up very high very quickly. Sent all the local doctors in a twirl as they have not ever treated a lung transplant patient and were very nervous to try anything with me until they talked to my transplant team. Four days into the admission we finally got the plan together that we would have me discharged that Tuesday because on that Wednesday, I already had an appointment scheduled for Shands. We thought I would get discharged and if my team saw me the next day they would be able to determine if being admitted at Shands was necessary. Of course they thought I needed to be admitted. I was extremely worried I wasn’t going to be able to go on vacation with my family the next week. We had planned this awesome get away to Anna Maria Island with some scallop fishing planned… I didn’t make it. Just add it to the list of things Iv had to miss out on because I was sick… oy. I at least got to eat some of the scallops they caught when I got home (it’s really only food that matters in this life anyway right?)!

This whole time I had been taking dilaudid for pain since I got to my local hospital not thinking to much of it other than it really helped with my pain issues. I continued with the pain medicine for another 2 weeks using it up to 5 times a day once again not really thinking much of it other than it made me feel better… unbeknownst to me, my body had slowly become addicted to the stuff. To be fair, my doctors were telling me that I was pushing it and they did try to ease me off of it treating me like an adult to make the right decision on my own to stop taking it. When I didn’t, they decided to take me off of it completely. The next week and a half were crazy awful. I went through a little mini withdraw experiencing extreme pain, fevers, and finally depression. thank god it only lasted for about 2 weeks, I’m not sure how much longer of that I could have taken. It wasn’t just the physical issues that got to me… the mental anguish I went through was some tough shit! I had anxiety attacks daily that would bring me to an unruly state, no one could get me out of. I was screaming and crying scared out of my mind that I was going to die though nothing was physically wrong with me. After testing out oxycottin for long-lasting pain relief I experienced the worst trip of my life. I was on the phone with my mother for hours trying to calm down when she finally came up I had used some organic oils a good friend of mine let me use for things like this that actually calmed me down. Having mom there helped to bring me all the way back. I had a few more bouts of serious anxiety she helped me through with the aid of the oils even after being sent home.

I was home for exactly ONE week to the day before I started to have another fever and the long reaching claws of Shands grabbed a hold of me and pulled me back. Here I am now quickly recapping my month from hell. This hospitalization has weighed heavily on me. The most difficult I think both physically and mental I have yet endured. I must say though I have had so much love and support coming from all over its almost overwhelming. It really helped me through the roughest and toughest times in here to see all the support I have. I just want to once again  thank all of you and let you know how much I love you all and how much each and every single prayer, positive thoughts, light vibes or whatever really means to me.

Bless you all!
XOXO

p.s.

sry if these posts are a bit rough, its 2 am and I’ve been in the hospital for over a month now lol give me a break.

Puscifer with Corina Round

I don’t talk to much about my musical likes and dislikes on here too much which is actually quite strange because music has always been a HUGE part of my life. It has always brought me comfort, calm, a sense of not being alone and I’ve often used it as a coping mechanism. I play the flute, piano and a little guitar. I love getting lost in the waves of vibrations and energies that music is able to send through me. I enjoy it all, from Brahms and Beethoven to Disney and Lily Allen along with EVERYTHING in between (even country). I only dislike polka but even then I can’t say I hate it.

I have not been to too many concerts however due to my health so when I saw one of my favorite bands were coming to town I had to jump on it ASAP. Puscifer the creative child of Maynard Keenan (lead vocal of tool), scheduled a stop here in Orlando and the minute they opened the sale of tickets, I got mine. Naturally I had everyone else pay for the tickets to the best seats in the house as it was kind of birthday gift.

Going to the show with nothing but my ID and some change is just not how I do things… Like a good CFer, I packed a little snack for myself to enjoy. And like a good CFer, most of what I packed was cheese. I had not just the normal cheddar but also gouda as well as some brie (which is very hard to transport sliced cause it gets all melty and sticky…. I out smarted the cheese though in anticipation that that situation would occur. By slicing the cheese and putting each slice on a piece of wax paper and staking them, the transport of its creamy goodness was accomplished fantastically). To go with the cheese, I packed some crackers and bits of apple, apricot and grapes. After successfully sneaking in this contraband, Miguel, Phonze and I took our seats front row balcony stage left and awaited for whatever magical musical journey we were about to embark on to begin.

The show started with a “mock”umentary Keenan put together using a fake redneck “punk” wanna be star and the issues he encountered with being on the road with his wife and mortal enemy who happened to also be in his band. It was all very entertaining and very humorous. When the actual show began however, the mood quickly went very serious with Maynard speaking about the connection man has lost between the universe through music. How music was a way man was able to connect and worship the universal forces or “god”, but through time, we have forgotten and lost that connection we used to be able to make so purely from our spirit. Music has become industrialized, mixed and mashed up with catchy beats and meaningless lyrics to feed the growing mass of blind consumers. With every new pop song made, something inside each and every one of us becomes more callous to the true power and beauty music can hold.

The band then all came on stage setting up a little faux campsite complete with bar be que grill and fake flames. Keenan set up some chars around it and opened a couple of bottles of his own vino (Caduceus wine) poured him self a glass sat down and let the show begin! It was such an awesome vibe they radiated out to the crowd. One almost felt as though you were sitting in on a little jam session just watching them do their thing. This was all brought home to me as I sat watching, eating my snacks and sipping my own glass of wine. It was brilliant. Honestly can say it was my favorite live show I have ever seen. Even though this outing exhausted me for about 2 days, I would have done absolutely the same.
Good times.

Shout out!!!

I wrote this on Facebook last September and I feel like its important and I should share it once more…

 

So I’m sitting here thinking about my life with CF and all the people who have ever told me that I’m strong and brave or even that I’m a hero, I don’t understand why anyone would have said that… as a patient with CF I’ve grown accustomed to all the hospitals and medications… just a way of life for me.
I believe the TRUE CF heroes are our care takers and loved ones. Not enough is said about the sacrifices they make for us. Here they are aware of our illness and the inevitable low points that come with it and yet they are still at our bedside.

This is a shout out to all the nurses who have just sat bedside holding their patients hands as they get yet another IV med

This is a shout out to all the parents who have stayed up all night to make sure their child is comfortable

This is a shout out to all the close friends who have helped give CPT and prayed by our sides

This is a shout out to all the husbands and wives who commit their entire lives to a chronically ill individual

On behalf of all my fibros and cysters i would like to say Thank you, if it wasn’t for all of your support at least half of us would not be here.

Bribory… yeah it works.

I had clinic today and Shands being such a huge center is always packed on clinic day. They schedule all of us to come in at the same time like one giant cattle call. 8:00 AM we are all to report to the clinic, get our x-rays, get our labs drawn, and check our vitals before we are herded into the waiting room. For some reason even though I get there and do all my stuff when I’m supposed to, I always seem to be seen last sometime not being able to leave until 3 or 4 in the afternoon. Today I set to change this recurrence by bringing in some treats I know my doctors love. Every time I’m in the hospital I pack my room with yummy treats to snack on at my leisure. Among these little morsels of yum are Oreos and pistachios. Dr. S will come in my room sometimes to only take some of my Oreo stash and leave without saying a word. Dr. B will come and take pocket fulls of pistachios after he checks up on me. So I brought in their favorite snacks to possibly help me get in and seen sooner. Now weather by coincidence or my bribe actually working, I was seen and out of there by noon today! I will be bringing them snack on clinic days from now on ;)

My visit’s goal was not to give the docs little treats however… I was there on business checking on my health status and what not. A few things to highlight and worth mentioning. My fev1 (lung function) has gone up since i started being active with my horses again, from .55 to .60 (about 17% to 20%) that may not seem like much but ANY change in the right direction is good to me. I have lost some weight though so I need to try to balance my activity level and calorie burning with what I’m eating and how often. The weight issue has always been one of the most difficult thing to deal with and still have yet to find a good solution… just keep eating everything in sight I suppose. The biggest news I received today was most defiantly the COOLEST news Iv had I think EVER! My doctor gave me an approximate timeline for my TRANSPLANT!! He is the doctor who chooses who gets what organs when UNOS calls with available organs and he has told me already that my name has come up a few times but he didn’t feel there has been a good match for me yet. I told me today that judging by my current health and the rate at which they are transplanting, I should expect a call around this October or September! He told me that I will have the winter to recover and by spring, I should be good to have my wedding!!! I hope hes right, that would be so PERFECT!! Keeping my fingers crossed and sending positive thoughts to make sure this comes to fruition!

Going to sleep with happy thoughts!

Changes Come!

If you have been following this blog of mine, you will notice a few changes I have made to it. I have changed the direction and shifted from my goals being about switching my transplant center to the petition for an “opt out” organ donation registry which I feel is more important and much more rewarding. I changed the pages, added a few pictures and tried my best to outline my petitions goal. Also added some stuff to my “who am I page”.  That’s all for the changes now, but there maybe more to come.

Moving on. I recently started having acupuncture sessions to get rid of my horrid, debilitating pain in my shoulder in order to stop taking those damn hydrocodones. The doctor suggested for my pain I should come in 2 times a week for the first 2 months and then just once a week after that. My first session went well, but didn’t really have any results which is normal for some people so I went ahead and followed the doctors orders to come back again that same week. The night before I had my second session, I was unable to sleep due to EXTREME shortness of breath. When he came in to treat me, he noticed I was having more trouble breathing than last time and asked if it was ok to go ahead and fix that… I thought to myself, “no little acupuncture needle in my arm is going to do anything for my labored breathing… not like it will heal the scare tissue in the airways.” but I said sure. He placed the 3 or 4 needles and went on to place the rest. As I sat there I actually started to breath better! After only about 5 minutes (before he even finished placing the rest of the needles) I was breathing better than I do after I do a nebulized breathing treatment!! Astonished, I told the doctor how amazing I was feeling to which he just nodded like it was no big deal. I was freaking out!! I couldn’t believe that I was experiencing immediate results! Had I known this stuff was soo for real, I would have started it YEARS ago! This guy is amazing. He looked at my arm and told me that I was constipated and have been for a while, which he was spot on. I usually don’t have that issue but that week i was having issues with passing things. He pointed out a crease in my arm, and told me that’s how he knew. He stuck a needle in the middle of it and went on with his day. After leaving I felt energized and I could breath again! As the day went on, my shoulder pain stayed tolerable pain wise until about dinner time which is a MAJOR improvement. At dinner that night, I was telling my family about the appointment and how well it went. I went to go show them my crease he stuck the needle in, the crease was GONE! I was dumb founded. I am SO excited about this new treatment and can not wait to go back!

SIGN MY PETITION!!

Quick post,

I am starting with the easy online petition to start collecting my signatures now as I await the approval from the government to put it on the ballot… I can no longer just sit here idly as time slips by. Sooo, please click HERE and sign. PLEASE pass this around to everyone and their mother to try and get some momentum built up! I love love love you guys!!!

Been a WHILE!!!

I know I know, its been FAR to long since I last updated my blog, but I must admit… you haven’t missed much. I shall update you on my more important events that have happened.

After only a month at the new “horse rescue” we realized it was not the place for us or our horses. Long story short, the rescue seemed to have their hands full with the horses they had and couldn’t quite keep up with the care we expected from them. We moved them to a new barn where I am more than happy to say is our new home. Honestly the BEST barn I have ever had the pleasure to step foot on let alone be a part of. It’s a small backyard barn with about 10 boarders and room for 12 horses. Set on maybe 5 acres with an arena, round pin, some little trail, complete with a horsie obstical course!!! The location is about a 15 minute drive from Miggy’s house, making our nearly daily trips out there super convenient. But I must say it’s the people however that make it so super spectacular specialness. I feel as though these people are now my family. They have welcomed me, Miguel and the girls as one of their own and take care of us  like no other barn family EVER!!! I could go on and on about how fantastic this new family is but I would just fill this post up.

On the health front, Iv been maintaining pretty well especially with the horses being motivation for getting up and out everyday. I have more energy, keeping a good weight on, not in so much pain anymore cutting my narcotic usage in about half of what I was taking on a weekly basis. I have even been able to get back in the saddle, literally!! My dad was nice enough to get me a GREAT saddle a few months ago as an early birthday present. Its different from any saddle I’ve ever seen! Its treeless, making it fit Chyenne perfectly and completely made of foam padding, with no hard parts on it at all making it a stunning 2 pounds total! Not only is the saddle good for Chy, it is perfect for my bony butt, I think I’m most comfortable sitting this saddle more than in any seat, bed or chair. I have been in the “big house” a few times in the past months with nothing to serious. My last stint in, they changed my prograf (anti-rejection drug) to cyclosporan due to migraines and debilitating nausea caused by the long-term effects of the prograf. I’m am happy to report that I am now back to my normal functioning wellness.

I am now on to bigger and better things with my life. Right now, I have started the process to make a petition to make an amendment on the Florida state constitution regarding our organ donor registration. My goal is to have the current donor registration changed from having to go out of your way to become an organ donor (checking the box at the bottom of state issued ID registration, or online sign up), to automatically being one when you have a state ID issued to you. Where you currently have to check to become an organ donor, should be an opt out option instead. I believe this small change could have a HUGE benefit for not just patients in need of organs or tissue here in FL but also surrounding states who are in our “region”.  Here are some of the facts to support my amendment…

Current number of patients awaiting transplant as of 10:36 this morning

-114,174

Number of patients who die everyday waiting

- 18

And really, isn’t that enough?! If that’s not compelling enough to convince the average Joe to go ahead and sign up because they believe they have nothing worth giving or saving and donating, take this under consideration, when you sign up to be a donor you’re not only saving people who need organs such as lungs, liver, hearts, kidneys, bowls, eyeballs… your also donating tissue used to save or improve countless lives! Skin, hair and even tendons are harvested to help burn victims, trauma victims, even sport injuries, not to mention all the blood and plasma they can use to help anemic mothers or children with sickle-cell. Honestly just ONE donor can save upwards of 200 people. I believe if you really care so much that your body stay in one piece left to rot in the ground, then you should take the extra time to “opt out” of the donor registration.

So once again I turn to you, the 3 or 4 people who follow my blog, to help spread the word on this amendment! I know I wont do much in my life, but if I can get this going and make my dream a reality, it would be the coolest thing EVER!! I turn my attention of selfishly trying to get a cutting edge transplant operation with the ex-vivo thing, to trying to save all I can with this tiny act.

WISH ME LUCK!!

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