If Wishes Were Horses

I have 8 more days until my surgery,  Frankly, I’m a little nervous about the whole thing.  I don’t like the whole blood clotting issue. I have #FactorVLeiden and #LupusAnticoagulant.  Then, there’s the #primaryimmunodeficiency.  I’m trying to think positive.  I think that in my case, this would be a little easier to deal with if I wasn’t a nurse. In some cases, ignorance is bliss.   I know the surgeon was a little freaked out, but thankfully agreed to remove the gallbladder. The first surgeon refused and no amount of cajoling could change his mind. I think that’s what has me a little nervous. 

I’ve been thinking about my best memories a lot lately.  One that came to mind was when I was swimming in the lake with my then boyfriend and, he asked me how does one pick out a horse.  I laughed and told him that you don’t really pick out a horse.  They pick you. 

As soon as the words were spoken, out of no where, I heard a loud whinny and this horse comes running through the yard and right to the lake where he stood neighing and tossing his beautiful head. He was a gray dapple.  My boyfriend remained, swimming in place, with his mouth hanging open. I swam to the dock and went to the horse. He was very friendly.  I looked him over for a brand, a tattoo, anything to identify him, but saw nothing. I walked up to the cabin to change out of my bathing suit and into something more horse-friendly. my boyfriend started making calls to figure out who may have lost a horse. 

I had an hour of pure bliss with the stray horse before we figured out where he belonged.  He was from the neighboring farm.  He must have gotten out through the gate which someone had left open. I walked him back to the farm with my boyfriend following behind on a four-wheeler, steadily bitching about the flies flying around the horse. The horse was named Jack.  He was about 3 1/2 yrs. old.  He followed me back like an obedient pup. I got him back in the pasture and secured the gate. I rubbed his forehead a few more times and climbed onto the four-wheeler.   I could hear Jack whinnying loudly and felt bad for him.  He was just starved for attention. The lady that owned him wasn’t real nice or, I may have asked if I could come visit Jack from time to time. It would have satisfied my horse-craziness and, Jack wouldn’t be so lonely.   

Once back at the cabin, my boyfriend teasingly said, “Would a million dollars pick you like that horse just did? We could go buy a lottery ticket, if that’s how it works.”

“I wish!” I laughed.

That day was one of the nicest days ever. It had started on a positive note and ended with a star-filled sky and the call of an old hoot owl in the distance. I like days like that. I don’t need a lot of excitement to satisfy me.  I like the simple pleasures. 

I’ve never asked for much in this life.  I just want peace of mind.  I have family and friends that love me and support me. I have my dogs and this little bunny that make me smile and touch my heart. I don’t need much more than that. I just wish my surgery was guaranteed to go just right so that I can continue to appreciate the present and dream about a future.  

If wishes were horses, we’d all be riding!Image



No Bucket List Needed

I’m up late when I’d rather be sleeping. I’m nauseated, despite having taken compazine.  I’m preoccupied with this upcoming cholecystectomy (gallbladder removal).  It should be a routine operation, but for me, having 2 clotting disorders, it’s high-risk. The doc will fill me with some CO2 to better visualize the structures-this, in itself, is risky, according to my surgeon.  I’m on Xarelto to thin my blood, so there is a bleeding risk.  I will be  hospitalized a day or 2 prior to the operation to get me off the xarelto.  They’ll heparinize me, get me at the level they desire, and perform the procedure.  I’ll recover for a couple days and be weaned off the heparin to go back onto the xarelto.  I should be hospitalized about 5 days if all goes well.  

Now, the surgeon very frankly said that he could kill me if he did this procedure.  He said the Co2 alone could be a nightmare.  He recommended not having surgery at all due to the clotting risks and, infection risks.

My primary doc said that leaving the gallbladder in would be riskier.  If it infects, with my history, I’m toast.  He said it should come out within the next 3-4 weeks.  We will get the hematologist on board, and he’ll monitor me throughout the hospitalization.  I will see that doc in 10 days for his preliminary exam and, discussion of game plan with the surgeon and my primary. Oh, and me.  I’m very active in my care.

Having said this, that leaves the real possibility that I may not survive the procedure or subsequent infection I may acquire from the hospitalization.  They will monitor me for any sign of infection very closely due to my primary immunodeficiency.

So, for now, I’ve found myself trying to make certain that I’m reconciled to the possibility that I could die.  I’m scared, but not of dying.  I’m scared of leaving loose ends.  I want people to know they were loved and appreciated. I want my family to know how much they mean to me, especially my sister Cheri. She has stuck by me throughout thick and thin.  She has helped me get where I am today. She has been my role model, my best friend, and like a mother.  Because of her, I have achieved dreams.  She has helped me overcome my demons.  She’s always been the most constant person in my life.  Together, we’ve felt the caress of a Caribbean breeze.  Together, we’ve faced tragedy and triumph.  Together, we’ve climbed mountains. We’ve laughed hard, played hard and, worked hard. Always together.

I love my whole family, and have been lucky to have them all in my life.  My daughter has taught me what’s important, I mean truly important.  She is the best part of me.      I have wonderful friends that have enriched my life.  I think of the fun I had going to nursing school with Kelly and Jessica,and many others.  For all the strife, we helped each other get through it.  There are just so many.  Nic made me see why we don’t t should never eat our own young.  Stephanie reminded me of me when I was younger.  Tony shows me the importance of following one’s dreams.  Mama Sherry has shown me acceptance, forgiveness and unrequited love. My siblings have brought great joy into my life.  I’m proud of them all.  A few of my brothers have taught me not to be selfish and estranged from the people that they should be closest to.  I’ve felt the love of a good man.  Box helped me stand on my own and work for my keep.  Construction wasn’t easy, but at least it payed some bills. I’ll never forget him and will always be thankful to him.  There isn’t and never will be another like him.

So, I’ve been doing a lot of thinking.  I’ve been retrospective and introspective.  I’ve been creating so that there will be happy memories.  I made a necklace today.  I made portraits of Mackenzie that I framed to give to my sister, Michael, Mackenzie’s paw paw and to my mom Gloria. I’ve been cleaning my room and carefully choosing what stays and what goes.  Momentos.  In the end, that’s all this stuff will really be.  Just stuff that says, “I was here.”

That’s life, a collection of pivotal moments with people that helped me become who I am today.  Somehow, like a sculpture, I carved out a pretty decent  life once Cheri helped me see what a decent life was really all about.  I’ve learned to put others before myself-a lesson I learned from my child and, from my residents  at my former job.  Mistakes? I won’t dwell on them. I’ve made quite a few, but they  helped me be who I am today, I will say that I didn’t learn from my first or second mistake…sometimes, I made mistakes in multiples, but work hard every day to be better than I was the day before.  You live. You learn.

I don’t have a bucket list despite the thought that I might die, either from this surgery or some insidious infection, because everything just about on my bucket list costs too much money! Lol!  So, I guess I won’t be going to Ireland or having lunch with Brian Williams.  I won’t be partying in Amsterdam or swimming with dolphins.  I will set my sights to things more immediate, like having fun with my friends on August 24th at the VFW when we host Disco Night, hanging with my dogs, feeling giddy when I’m around someone special, or getting a rush when Cheri and I go shopping and bringing home our treasures.  The simple things.  That’s what really matters.  It’s the simple things that make me feel best.  When I feel my best, I’m truly in a positive frame of mind.  It’s is this positive frame of mind that is going to help me get through this surgery.  However, if I don’t, I’ll go in peace. I’ve been the best person I can be.  It’s just that simple.

When you’ve seen beyond yourself, then you may find, peace of mind is waiting there.
George Harrison 

So it Begins

April of 2012 found me hospitalized with pulmonary embolisms to both lungs. Strike one! One of those blood clots was lodged in the bifurcation of the main pulmonary artery of the left lung with infarction, which is the obstruction of the blood supply to an organ or region of tissue, typically by a thrombus or embolus, causing local death of the tissue. This type of embolism is usually found during a necropsy. I cheated the grim reaper, but learned that in addition to the pulmonary embolisms, I also had chronic obstructive pulmonary disease (COPD).

I was not very surprised actually. I am a smoker. Strike two! Smoking is the primary risk factor for this disease. Quite honestly, upon being given the news, I really needed a smoke. That just a reality of my 35 year tobacco habit.

I left the hospital on the blood thinner Coumadin and, my albuterol rescue inhaler, Qvar, which is an inhaled corticosteroid that I use twice daily along with Combivent, which is a bronchodilater used by COPD patients who have bronchospasms and need a second bronchodilater. They sent me home with a pretty blue spacer too. The spacer helps me get more of the inhaled medication into my lungs, rather than on the back of my mouth.

At first the inhalers weren’t so easy. One has to master proper technique. You have to press down on the inhaler, breathing in deeply as soon as the inhaler is pressed, holding your breath for several seconds and, exhaling. It’s all about timing. I’m a pro now.

I went into denial after the diagnosis. I even continued to smoke, but promised to gradually cut back. I set ‘quit dates’ repeatedly, but somehow always found an excuse to postpone those dates. I discovered electronic cigarettes which have been extremely helpful, in my case. As a nurse, I would be lecturing patients of the importance of kicking the habit and giving them the necessary information about smoking cessation and their available options. Let’s just say that I’m a much better nurse than I am a patient.

I’m not going to tell you that I was the perfect patient. I’m going to give you the hard truth, even if it seems as if I love smoking more than my life. I am an imperfect person with good intentions. I really want to quit. I’ve tried chantix, nicotine patches, wellbutrin, cold turkey, teas that claim to help one quit, and nicotine lozenges and gum. I even managed to go 52 days without smoking, but went back out of defiance. I still smoke 5 cigarettes a day, but try hard to cut that number back by using the e-cig. It’s a tough battle, but eventually, I am going to find the right method for me and give them up for good. I will not let this habit rule my life. I know I will succeed and make my pulmonologist a very happy man.

Now, strike three hit in October 2012. That’s when my immunologist diagnosed me with Primary Immunodeficiency. This is not cool. My immune system doesn’t work very well, and I have to give myself weekly infusions of immune globulin to boost my immune system. So, now, pneumonia or other upper respiratory infections are even harder to fight combined with COPD. In January of 2013, my hematologist diagnosed 2 blood clotting disorders. My blood is too thick and without blood thinners, I’m at high risk for the development of fatal blood clots. During the same month, my pulmonologist ran a test that showed that my alpha 1 antitrypsin level was pretty low. Normal range is between 100-200. My result was 104. Still enough to protect my lungs, but low enough to make me more vulnerable to lung disease. It also led to having my siblings and my daughter to be tested considering my father’s history and my phenotyping results showing that I’m a carrier. That was scary because I sure didn’t want to find out any of my loved ones had to potential to develop any kind of lung disease. My daughter is a carrier. My younger sister is fine.

I think I will stop here and let you digest all of this before continuing with my story. If you have questions or comments, please share. I’ll be more than happy to answer any questions and, I’d appreciate any comments you may have.

By writing this blog and sharing my story, I’m not only trying to help others, but also helping myself learn to manage my own COPD. Thank you in advance. I look forward to this journey with you.