Medical Insurance Woes

I have come across this bridge once before and, last time, I don't remember it weighing as heavy as it does not. Ironically the circumstances were much different and my husband was very ill. Yet, I sought out other job opportunities to get me out of the hell I was working in. That was when I came across my current position at one of the most well-known Internet companies in the world. Now, I am plagued with that question once again - do I stay or do I go?

My position doesn't fit me nor does it provide the challenge I need in order to keep my brain from falling asleep. It isn't a bad position but is just a dead-end one, in which I stare at my screen and work on auto-pilot. Why haven't I left yet? It is the dooming fear of every person in a relationship with someone who is not in the best health - plain and simple - I carry the medical insurance. Not just any medical insurance but one of the best medical coverage plans ever! Sure, I found this job when my husband was sickest and I was still carrying the medical insurance back then but on my last interview with this company (there were 5!), they got on the phone with the human resources department and insisted that my medical coverage start immediately!

Will I be as lucky the next time? I know my career wont go anywhere in this organization and the only way to advance is to find another position. To my surprise, my phone has been ringing off the hook with companies that not only want me but are willing to make a new position in their organization just to have me. So, the opportunities exist out there but is it worth it when there is so much riding on me leaving? Even one day without medical coverage is not a possibility in our lives...

Tips for Talking With Your Health Care Provider

You and your health care providers are working toward the same goal: your health. Health care providers can advice you and help treat health problems, and your good healthy also spends on you. First, take advantage of clinic and hospital visits to get all the information you need to care for yourself. Second, become a partner in decisions that affect your health care. To form this partnership, you and your healthy care provider will need to talk with each other and plan your care together.

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Freedom from Nebulizers

Finally - a much needed holiday! My mind has been swimming in a sea of thoughts and ideas for the last few weeks without being able to make much sense of it all. First and foremost, Greg had a scheduled loop pulmonary function test (PFT) just yesterday and did amazingly well on it. The transplant hospital needed to find out more specific lung function numbers in order to determine if he should have the stent in his right airway removed. From what he was told, a couple of his numbers were in the 100% + range, meaning that he has better lung function than most people who are healthy. We knew he was doing well but never thought he was doing this well. Needless to say, the results have been sent to the transplant hospital so that they can schedule his stent removal. Given that his original transplant surgeon will be moving away come July, they want to get him in as soon as possible to get the stent removed. Of course, Greg would feel a lot better if it is the original surgeon that removes it and so would I!

So, what does the stent removal mean? Well, it means that there is one less foreign object in his body to worry about causing an infection and such. It also means that the only inhaled medication that he is currently on can be stopped finally! Right now he is on Pulmozyme to keep things clear and healthy around that stent. Once that little bugger is out, there is no need for the medication anymore. That means Greg will be nebulizer free for the first time since he was 16 years old! You can see how happy that would make someone who has been tied to that machine twice a day for 16 years!

Otherwise, everything is going well on the health front which has allowed me more time to figure out what I want to do with my career and other goals that I have before me. Now for the hard part - sorting them all out. With health concerns on the back burner, it is nice to finally get a chance to focus on the goals of a normal life... Even if you aren't used to it.

Relationships and Respect

Anyone that tells you that a relationship or marriage doesn't require work is full of it!

The ability to look past one's faults and see them as a true human being is an ability that many do not have in this world. People tend to attract other people that are either the same as themselves or the complete opposite. For the former, the individuals get bored or annoyed because the person is too similar. The latter entails being around a person that does not share in the same feelings about things that you do and, as we all know, feelings are the core to every human being.

In my marriage, I had once believed that I had married someone like myself. This man was to be the one person that knew what I was feeling without me even uttering a word. Then I came to realize that although we did have similar views, we were very much opposite. We are, indeed, the ying-yang.


We are complete opposites with a very small bit of the other deep down inside. That is the core of our being, the one part that links us to the other person. But, as you have probably already noticed, a majority of who we are is complete opposite from the person deemed as our "soul mate". That is where the work comes in. That is where we must realize that we are not, in fact, as similar as we once thought but need to use the small amount of similarity we have and grow from them.

Coming up on 7 years of marriage and 11 years of being with my husband has taught me a lot. Sure, we have had a lot more to go through than most; given my husband's "terminal" illness and his fight for life with his transplant but, that does not mean that we are immune from normal everyday relationship woes. We don't have knock-them-out fights or anything but we do disagree on a number of things. It is respecting the other individual's thoughts and feelings through those disagreements that makes the relationship strong. Sure, I would love to be right 100% of the time but, I am human and fallible. Would I tell my husband that? No way! However, I would tell him that although I may not agree with his outlook on something, I do respect his opinion and how he feels about it. Respect for individuality is the heart and core of a strong relationship. Without this, a relationship is either doomed to fail or will become so miserable that there is absolutely no joy in life. The choice is yours...

Dismissing Myself

I know I have been absent from posting to this blog for a few days now. Recently, things have become very hectic in our lives and we have been showered with a number of things that have to be done and they have to be done now. Not to worry - Greg's health is doing fine and we are both living somewhat normal lives. It is just that I have decided to take a couple of days to get my mind a little clear. You see, I spend 8 hours a day on the computer working and then a few more hours each morning and night either doing work for my own business or updating my blogs. It is far from an easy task and that is why I have decided to prune some things in my life.

No, this blog is not one of the things that I have decided to prune from my life. I have, in fact, decided to leave a majority of online medical support groups that I have belonged to for many years. Why? Frankly because it is difficult to deal with one disease in my life let alone the fact that I keep losing friends to a young death online. In the last 6 months, I have lost more than 5 friends to cystic fibrosis or an organ transplant complication. Sure, things happen but at this time in my life, I have to concentrate on my family and my own life. Selfish? Not at all! As I have expressed before - if you are not healthy then how can you be good to anyone else. Honestly, I am not healthy and though I choose not to disclose what exactly is ailing me at this time, I will say that it is time for me to concentrate on other areas of my life - those offline.

What does that mean for this blog? It just means that my posts will not be daily but, instead, will be every few days. Don't fret my friends - I promise at least a couple of posts a week.

Bad Dreams

There is always the fear in the back of my head - wondering how long it will last. I have been able to push aside the fears of Greg getting sick with almost a sense of expertise at this time but that does not mean they do not enter my dreams. They don't take the form of a nightmare but, it is more like they are little reminders of what could happen if we are not careful.

Last night was one of those times again. I don't remember the entire dream but I do remember that Greg was healthy one minute and then, in the next, he was not able to breathe. I did not panic because it wasn't a dream that I was taking part. It was more like watching it on the television and getting the sense of knowing it was a part of "normal" life. So, was it really the fear of the unknown sweeping its way into my dreams or just a gentle reminder of how precious life is and how we need to live life to the fullest? Honestly, I couldn't say. However, I can tell you that I am reminded of the frailty of life on a daily basis when I hear people coughing and sneezing, and I find myself turning around to judge how far they are from us and the possibility of getting what they have.

Sure, they could just have allergies and there is nothing to be concerned. Unfortunately, I have a built in radar now that senses things and is constantly on the lookout for what could disturb our lives. I am sure you are thinking that this takes up a great deal of energy and you are 100% right! Unfortunately, it is one of those things that comes with not only being a caregiver to someone who is post-transplant but also just being a woman. Learning how to relax and enjoy life is the ultimate goal.

A New Angel

Jennifer was just 21 years old and loved by all. Her aunt recalls her as: "My dear, sweet, perfect, angel..." Alas, Jennifer passed away from Cystic Fibrosis (CF) on Friday, May 12th, at 9:40pm. She was awaiting a double lung transplant and was on a ventilator and too sick when a pair became available.

It is a very sad moment when I learn about the loss of yet another person fighting against CF. My sister-in-law, Diana, was only 16 years old when she passed from the disease and I couldn't imagine what my husband nor his parents went through during that time. Since meeting Greg in 1995, I have become an advocate to fight against this disease and, sadly, I have lost a great deal of friends to this killer. Most were either teenagers or young adults. Most had never had a chance to fully live and yet they are called back to heaven so quickly.

Yes, I could curse God for these people being taken but what good would that do?I have learned the truth a few years ago about death and even though my heart is saddened, I cannot help but smile. You see, what is better than everlasting life? I often tell people that if my wonderful husband would be called home during an early age, I would mourn because I am human but I would rejoice (and be somewhat jealous) in the fact that he would be able to meet God face to face and live truly free. No earthly burdens and no diseases to fight - just a chance at true life. And yet, I would be stuck on this Earth - having to live out my days among materialism, disease, pain, anger, and so on.

I know it seems a strange way of looking at death but in all honesty, I know in my heart and soul that it is the truth. Since we have already looked death in the face, we have seen that there is more than what our mind can comprehend. No, we aren't any holier-than-though, cult-going, Bible-thumping, off-the-wall freaks. We are simple human beings that just understand in a higher order and live our lives as best we can - to help others and learn for the short time we are on this Earth.

Love and Life

"Where there is love there is life." The words love and life are highlighted in red and green to match the green organ donation awareness ribbon. This is a prefect design to show your support of not only organ donation and transplants but, also to those organ donors we hold in high regard.

Angel Cove creates beautiful designs to promote the overall and general importance of organ donation and transplants. Each design is slightly different as they display your personal perspective on how organ donation has impacted your life. Bring awareness of your family member's, friend's, or your own life-saving organ transplant or just promote the overall and general importance of organ donation and transplants on clothing items such as t-shirts and sweatshirts, as well as mugs, hats, bags, buttons, and stickers.

Transplant Recipients & Jury Duty

It is everyone's civic duty to report for jury duty. All too often, people do their best to get out of jury duty. These people feel it is a waste of their time and they don't want to miss work even though they are getting paid just the same. So, when Greg received his little white envelope in the mail, my immediate thoughts turned to contacting the transplant coordinator for a jury duty waiver letter. However, Greg made the decision to show up.

Today is the first day of jury duty for Greg. With a backpack filled with papers, a couple of books, all his morning anti-rejection and other transplant drugs, and a surgical mask, he walked out the door shortly after 7 am and headed for the courthouse. He planned on demonstrating his civic duty and showing up to the courthouse as requested but, we both know he will not be chosen for a jury for several reasons:

1. His mask will be a dead giveaway that he is not "normal" and has health concerns.
2. He is required to take his transplant and anti-rejection medications at specific times during the day and cannot be late on any medication - not even if the trial is in session.
3. His health will be placed at risk due to the small confinement of the jury room and courthouse. There is no way to protect himself and the mask only gives him limited protection.
4. He could have organ rejection at any moment and have to be pulled from the middle of a trial to enter the hospital.

These reasons alone would keep him from getting selected to a jury. Sure, he would love to get picked and have to sit in on a trial but the risk to his own health and the stability of the trial make him an unlikely candidate. Nonetheless, he still marched over to the courthouse to show his loyalty to his country and the rights of its citizens - even if he is a double lung transplant recipient!

Normalcy After Transplant

Nearly a year and a half post-transplant and we have finally had our first "real" weekend together. No, it isn't what you think - it was our first normal weekend and it seemed like it went on forever! We not only took care of our normal chores but we also went out to make our house more into a home. You have to understand that for the couple of years that we have lived in this house, we did hardly any decorating at all - especially the outside. This weekend we bought some hanging planters and did some much needed outdoor maintenance.

It was a great experience to be free to do what we wanted and, for the first time, just enjoy being home. Sure, life needs to be lived but sometimes we need to just sit back and unwind. It is called "enjoying the moment" and understanding that it is okay to "be" rather than to "do". We don't need to go out and spend lots of money, occupying our time with material items and entertainment. It is more of just enjoying the moment with each other and doing what makes us happy. This weekend was one of those moments in time when we spent a great deal of time together and talked for hours on end; like we used to. There is nothing in this world to compare to the feeling of being connected with each other and everything around you rather than being enveloped in medical junk. Sweet freedom never felt so good.

A Normal Relationship

We met online in 1995 and feel in love before we even met. After 3.5 years of long distance dating, I moved halfway across the country and we were married a year later. I would like to say it was a romance made in heaven, but every relationship takes work. A relationship is the bringing together of two separate lives and two separate people. Sure, there is love, but if you don't understand respect and compromise, then the relationship will never work.

Only 2 years after we were married, Greg's disease (cystic fibrosis) started to take a turn for the worse and by 2001, he was listed for a double lung transplant. We had no idea what was in store for us and continued to live our lives as normally as we could. That was until he became deathly ill in 2002 and was not only hospitalized for 9 weeks but also placed on a ventilator (artificial breathing machine) for 8 months - 6 of those months were spent at home with those machines and me as his nurse. During that time, we worked together to get him off the vent and were successful. Unfortunately, he was still not able to work and was on 4 liters of oxygen 24/7. It is ironic because our lives were simpler during that time. We didn't fight and we finally learned what life was truly about. We were able to get out of debt, even though we only had one income.

Now that he has received his miracle double lung transplant and we have returned back to a "normal" life, we aren't as happy as we were when he was sick. I know it may sound strange, but please know that I am serious. Both of us agree that when he was sick, we knew how to live without thinking. Now we have no clue what we are doing. Sure, we both work and I even own a small web development business on the side, but we are both lost and our frustration is now being misdirected at each other.

Unfortunately, Greg neglects what I do for him and still, in the back of his mind, expects me to do everything for him as though he is still sick. Of course, I still run on autopilot and continue to do everything for him, but I am miserable in doing so. He hardly does anything around the house or for me anymore and he admits it. He knows that he is letting things continue as though he were sick but the problem is that we don't know how to live "normal" anymore. Our minds and bodies never made the switch back from the "high alert" status of illness to the "relaxing" state of normalcy.

So, how do we make the switch back now that he is healthy? I am truly not sure. All I can say is that if we don't learn how and learn quickly, our relationship will suffer and that is something that I am going to do everything in my power to fight. I pray we figure this out.

Lung Stent Removal

During Greg's last visit to the transplant hospital, he was informed that he has done so well that the stent in his right airway can now be removed. This, of course, it great news but it does make the butterflies in my stomach a little active. Why? Well, because he has been fine with it in. You know the old saying: "don't fix what isn't broken"? Exactly! Why remove it if it is working fine.

Okay, so I know why they are removing it. It seems that even though the stent works great, it does leave the opportunity for junk to build up around it and could make things difficult for him down the line if he has any problems. It is for that reason that we are all for having the little bugger removed and giving Greg a free and clean airway. Right now we are waiting on the transplant coordinator to set up a day in the next couple of weeks to do this.

For those that don't know; a stent was placed in Greg's right airway a couple of months after his lung transplant. This particular airway wanted to heal itself and, in doing so, it would have closed off the entire airway. The cartilage around the airway was actually still exposed and things just weren't healing properly. So, by removing the stent, they can actually see how much has healed now and exposing it will allow it to heal even more. It is a highly positive situation. It means that Greg has made it one more step closer to being free of all medical devices. Sure, it has been a year and a half since his bilateral transplant - better late then never!

Strength through Adversity

What was seeming to be a great day yesterday morning turned out to truly get on my last nerve. Sure, I am a strong person and I have helped my wonderful husband through a terminal illness and a lung transplant but, some things in life never change. The strength that you have can easily be taken from you if you are not careful. That is what happened to me.

My childhood was not the best in this world as my mother left us when I was not even 3 years old. Although she was to have visitation rights, she would often call about an hour after she was to show, stating that she was not showing up. It was heartbreaking! This continued throughout my life and when I was a teen, I stopped the visitations all together and decided to see her when I would see her. Needless to say, yesterday she called to say she was in the area and heading up to see me. It was still early morning and around noon she called to tell me it was raining out and because of that, she decided to head back home. What? I am 32 years old and she did it again! You would think that I would easily get over it but given that this has been happening for 28 years now, my energy just got sapped and my strength was once again gone.

Sure, I know that people cannot do something to you unless you allow them. It is just that I haven't seen my mother since my wedding day - 7 years ago! You would think that she would want to see her daughter enough to not care about some rain. Come on now! It was rain! If it were that she was sick or something happened and she needed to head home, I would be fine with it.

As you can see, my strength is still not back. It is amazing to me because I have been able to overcome trial and adversity, become an accomplished woman, help my husband fit through his disease, months on a ventilator, and even a double lung transplant never took all of my energy. Yet, my mother, another human being, was able to suck is dry with one phone call. Somehow, some way, I need to overcome this and learn to not let this get the best of me... to learn that I am truly strong - no matter what!

Severed Ties

I couldn't believe it! This weekend I was met with an email that stated that my posts were to be put on review. For those that don't know, I belong to two online mailing lists that support certain causes - one of them was for cystic fibrosis and another for lung transplant patient. It was the latter that said that all of my future posts were put on review because they thought I wasn't staying within their rules for advertising. Quite frankly, a friend of mine finally received her lung transplant and I was remarking about how inspirational she was that she bought some of my products that stated "Organ Donation Saved My -- Life" before she even received the transplant. Marketing? Advertising? I think not! I was just amazed by her ability to believe so highly that she was going to get her transplant that she bought items stating that her life was already saved when, indeed, she was still waiting for her miracle transplant.

So, why am I going on like this on my own blog? Well, because it has to do with the ability to severe ties to your past. I had been on this list for 10 years and for quite a few months, I started to get the feeling like I am supposed to leave the list. God was putting it in my heart to move on to other things in my life as the list was no longer needed. Since I failed to listen to God, He had to give me a bigger sign - it is called hitting me upside the head with a billboard! This incident was that action - it was to solidify the fact that our lives have moved past the need for this board and it was adding nothing to my life. If I weren't to severe the ties, the ties would severe themselves. Plain and simple. When you don't hear God, sometimes He needs to make it quite clear of what he wants you to do. This was one of those times and, quite honestly, I am not really that upset about unsubscribing from that mailing list. It is more of a peaceful feeling. Of course, I can say that now because I have gone through it but when you are in the middle of going through it, it can be one of the most difficult and energy draining times in your life.