"End Stage" CF

The words "end stage" are two words that no one ever wants to hear. To be completely honest I never thought that, Cystic Fibrosis even had a "stage" until recently, when I was diagnosed as "end stage". 

Normally when referring to stages in any disease your mind tends to go to cancer over other diseases. The truth is, all life threatening diseases have a turning point when it gets to what can be considered "end stage".

I want to explain a little more about my new situation, my plans, and what my mind set is at this point in my life.

First let me say, this is still NOT a death sentence for me by any means. A doctor can and never will be able to tell me when I will go and how long I have left. I am too stubborn to leave this world without doing 95% of everything I want to do.

☆Sometimes I feel that when you are born with a disease the doctors slap your tiny baby butt with a stamp of an expiration date.

All a doctor can do when it comes to life expectancy is go by scientific studies, statistics, and somewhat of an educated guess. In my opinion this makes the doctors almost ignorant to a point, to say a set time that we will leave this world.

Basically, when it comes to CF and how they determine end stage, it is when you are past the point of no return. For many people that can be determined by many different factors. I can only base this on how I meet the criteria.

☆Please, do not get worried if our situations may be somewhat similar, because our bodies are different and so are the treatments. Unless your CF doctor tells you where you are to your face, do not just assume anything.

I was put on the lung transplant list back in May of 2014. My PFT's were bouncing around the low 30's with frequent hospital visits. Which is normally the first step to get evaluated for a transplant. After the week we spent at UPMC Presbyterian Hospital, meeting with the transplant team, and learning all about a double lung transplant we had a lot to figure out. Much like anyone would dealing with such a big and scary decision. What weighed on me more than anything was that pesky little bug that will always be in my system, Burkholderia Cenocpacia.

A lot of surgeons who specialize in lung transplants will not do a transplant on a Cenocpacia patient due to the complications. UPMC is one of the few in the US that will do it. However, after hearing the risks and statistics post transplant, I have decided not to go through with a double lung transplant.

A lot of you are wondering why I wouldn't go for a second chance at life, or why I would turn down something when so many have successfully lived years after transplant? The risks and complications with B. Cenocpacia are at a higher level than a CF patient without it. 

Taking immunosuppressant medications after transplant are hard enough on a Cystic who is negative for Cenocpacia, and it is terrifying knowing I would be even more susceptible for infections and rejection if and when it became active again. Fresh donor lungs with Cenocpacia have a higher risk of it becoming active and attacking the new lungs. Making it somewhat pointless.  We were told that the average survival rate post transplant of a CFer with Cenocpacia is roughly 6 months. To me once you add in recovery time, extra risks, and medications adding more risk, I do not see it ideal for MY life, personally.

☆Now, that is probably not the case for many or any other CFers, as anything is possible and no one person thinks alike. Some people who have had the transplant and Cenocpacia have surpassed that estimate by several months and even years. It is just not in the cards for me. Also, other hospitals will have a different survival rates and can change. May it be more or less time post transplant.

I believe that there is a "healthier" CFer in need of a double lung transplant that may be able to have better luck with the amazing gift of lungs having better odds than I do. I would rather live the rest of my life with the lungs I was born with and allow them to let me live as long as I can. Than live the rest of my days in agony, because of this crazy bug. Knowing, that I can possibly help someone else live by passing on donor lungs make this decision a little easier for me.

☆Turning down the transplant is one of the main reasons I am considered "end stage" and being put on a new course of treatment and in the care of Hospice.

Other factors that play a role in my medical standing are, my PFT's and my FEV1 dropping rather quickly. Starting out on November 6th my FEV1 was 32% and as of today December 26th they are 20%. 

☆Update as of July 20th 2015 my FEV1 is now 16%☆

The antibiotics are no longer improving my health, but only keeping me from falling further down the rabbit hole. At this point there is nothing else the doctors can offer me, other than a steady course of antibiotics to keep things stable. Keeping me informed and being here for questions or bad flairs, helping me with pain management, and staying comfortable. Every coughing fit, deep breath, laugh, or even yawn hurts horribly.

Now, as far as what I am doing and feeling about this I am in great spirits. I am not giving up on my dreams or giving in to my disease. I will be continuing to model for clothing lines and magazines as much as possible, I will be doing Sandi's Candi's in my free time, and I will be making memories with my husband, family, and friends. I have goals for today, tomorrow, and far in the future.

☆My hubby and I have decided that we are going to be taking more trips together so I can visit many states, we will be doing a lot of my bucket list items, and making sure we are always falling in love with one another every day.

♡My family and I are already pretty close, but I plan on continuing to build strong bonds with them. Along with reaching out to the other branches of my HUGE family, that I love and have embarrassingly not been able to spend more time with.

♢I plan on being able to make time with my friends and getting to see the mile stones that they reach in life. Babies, weddings, birthdays, and so much more. I am no longer going to allow CF to stand in the way.

☆♡☆I am focused on quality of life more than quantity of life at the moment☆♡☆

Never Give Up Hope,
   Sandi

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A Hospital Christmas

Christmas morning is slowing approaching and this year I can't help but be heavy hearted, a little blue, and feel somewhat bitter sweet. I sit here and think of the years that have passed and the years yet to come and I want to cling on to those memories for as long as I can.

When I open my eyes and put my feet on the ground Thursday morning, I will not look out of my window for a snowy winter wonderland. I will not be sneaking down the stairs to take a peak at the presents that Santa left unwrapped, before waking my parents up. I will not be digging through my stocking full of goodies to pull out the one lone orange that my mom always made sure to put in our stockings, that I never ate. I will not get to hand out everyone's gifts from underneath the tree, as if I worked for the Christmas Tree Post Office. Calling out the names on the tags and stretching as far as I could to hand them all out like I used to do for many years. Riding around singing and listening to Christmas music, quoting my uncle as we look at the beautiful lights around my small little hometown, saying "ooh ahh" to the prettiest lights, is out of the question for us this year.

My husband will not be waking me up to breakfast in bed with sweet maple bacon, Christmas pancakes, and the aroma of caramel drizzled coffee to perk up my morning. I will not be seeing the twinkle and pride in my husbands eyes as he hands me the presents that he purchased for me over a month ago. Watching me rip through his neatly wrapped packages with enough tape to be Fort Knox approved. Laughing at his silly gifts wrapped in albuterol and tampon boxes. I will not get the joy of seeing his reactions to his gifts as he opens them one by one after I do, like I am used to doing. We will not be getting ready to visit our families to share in holiday spirit. Making sure we match enough to be cute but not so much to make people sick with our cuteness and love for one another.

There will not be the traditional Christmas photo of me and Santa Claus, and if you didn't know my father is actually the real deal. Listening to my mom tell the story of these pictures as she always says "They have one from every year". As if she is still shocked by this tradition my father and I keep.  Photos of all of us sitting by a beautifully decorated tree, stuffing our faces full of Italian food, and spending time with one another. This year even the sugar cookies missed us as my mother couldn't bring herself to make them without our annual cookie party.

These are the things I will not have this holiday season. Instead what I will see this year as I open my eyes on Christmas morn, will be a dark and drewy hospital room, nurse's and doctor's in yellow paper gowns with emotionless faces covered by a thin blue mask. The smell of stale air, rubbing alcohol and latex gloves will fill my room. I will be awakened by an annoying intern coming in after I finally fall asleep, just to wake me up, make me sit up, listen to my lungs, and ask if I am breathing ok. I will be sent up rubber flavorless pancakes and burnt coffee, by a disgruntled hospital worker who just wants to be home with family of their own. Antibiotics will be ran every other hour and medications given constantly. I wil be forced to stay on my floor for the fear of "cross cantamination" if I mingle outside of my room. Making it more of a prison cell than anything else to be honest. Respiratory techs will be in and out with smiles and heart felt words as they know I do not want to be here. Doctors will come in almost like drones just repeating the motions that they do every day. As I lay in my bed sadly knowing it may be Christmas outside of this building but inside with me it is sadly another day in the life of the terminally ill woman.

Of course, my family will be here with bells on, my mom even mentioned a small tree. Lord knows that would be interesting to see, but I have painted Easter eggs in here before so why not! They will bring me dinner, gifts, and love. Sitting by my side and trying as hard as they can to make it seem like I am not in hell. To make it feel like Christmas for all of us as if I wasn't hooked up to oxygen and an IV pole. It will be a Christmas we will all remember, but not because of how great it is. Not because we were able to enjoy the winter weather and sip hot chocolate together.

It will be remembered as the Christmas where Sandi was stuck in the hospital and we had to put together a make-shift holiday and a fast change of plans as we all thought I would be home.

The good thing about it once you dig down deep for one,is that I will not be alone. I will have my family and yes, things had to change in order to make that happen, but they will be here. It is times like these that the reason for the season is most important. Giving of ones self and support is truly what I need this Christmas. I know I am loved and time with my family, no matter where it is spent is precious time that should always be cherished.

Just remember no matter where you are. No matter the situation be thankful for what you do have. The situation can always be worse, changed, and different at the drop of a hat.

Merry Christmas and Happy Holidays,
   Sandi

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18+ Sex & CF - Part Two

Parental Advisory
The sole purpose of this blog is to provide sexual information regarding sex with Cystic Fibrosis,for those who want information. Parents must evaluate the maturity level of their children. Please judge it's content and make sure that it is suitable or not. If not, I suggest they do not read this particular blog.

It is my belief that all of age Cystic's have a right to honesty on a personal level, about health and sexual experiences. The same way that they have access to information about Cystic Fibrosis, respiratory systems or digestion issues.

★YaY that little disclaimer never gets any less awkward. Anyways, I have already written a blog regarding sex and the need to have a good understanding in your relationship that can be read here. This blog is about the health benefits for having sexual intercourse while having CF.

☆Again ALL Cystic Fibrosis patients are different. My "knowledge" in this case is based on personal experiences along with medical studies.

Sometimes people forget that being sick takes a toll out on every part of our bodies. I have noticed that a lot of us are tired, in pain, often sick, stressed, have a low appetite for sex, along with issues when it comes to matters of the heart. Did you know that having sex can actually help you in a lot of those categories.

Yes, it is an enjoyable event that can take place between two people mature enough to understand what intimacy is all about. Yes, there is a huge taboo on the topic. Yes, it is very good for your mental, physical, and even relationship health and here is why.

Being close to your partner can soothe stress and anxiety that comes along with being sick. Touching and hugging can release your body's natural “feel-good hormone.” Being closer with your spouse will make you closer emotionally.

Sex and intimacy is linked to raising your self-esteem and happiness levels, too.

♥I know from personal experience that there are days that I truly feel terrible about myself, mainly my body. I mean let's face it I am a roller coaster of body sizes thanks to CF and medications. After being intimate with my husband I do feel a little pep in my step about the way I look and feel about my body.

As I explained in Sleep and CF our bodies are working overtime in order to breathe. In turn this makes our body need more rest than normal "healthy" people. During sexual intercourse if an orgasm is achieved, the hormone prolactin is released, which is responsible for the feelings of relaxation and sleepiness after sex.

♥So, this can be a pretty neat little trick for any of those spouses of a CFer who may be needing some extra sleep. Wink wink!

Of course our immune system is more compromised than most so it is important to always stay one step ahead of the game. Sexually active people take fewer sick days, according to sexual health experts.

♥Honestly, when I am healthy enough for sex once or twice a week I can feel a small, but noticable difference in my health. Now, this may be caused by several different factors.

You should still do all the other things that make your immune system happy, such as:

★Take ALL medications and vitamins.
★Do ALL treatments.
★Eat right.
★Stay active.
★Try for more sleep.
★Keep up with your vaccinations.
★★Use some type of contraception if not several combinations of different ones.

Lastly but not least by any means. While living with any disease you have a lot on your mind. In most cases you have more things on your mind then sex or having a healthy sex drive. However, the more often that you and your spouse are intimate the higher your sex drive will be. 

♥More so for women then men, the reason is very graphic, so I will not be explaining that in this blog.

Again, I can not stress how important it is to be mentally and physically responsible, healthy and mature enough to have sex. Always have a protection plan, remember CF is genetic and unless your spouse has been screaned for the CF gene you have no idea if they have it or not. Always understand and be there for your spouse during intimate situations and be in it for the two of you!!

Intimacy is healthy,
  Sandi

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