Add one to the list

There are always pros and cons to taking any medication. "Here, take this! It may make your hair fall out and you may start to talk like a chimp, but it will get rid of zits!" (laugh) Actually, with transplant drugs, 90% of the drugs taken are for side effects of the other drugs. Ironic, isn't it? Of course, we love tossing aside any of the medication but sometimes the drug bottle becomes sticky and it is like trying to get packing peanuts out of your hair and off your clothes! (I dislike packing peanuts very much!)

This morning Greg woke up with an acid taste in his mouth and soon enough, he was throwing up. Luckily, he hadn't yet taken his medications so we didn't need to worry about whether or not they were absorbed before he got sick. But, he knew that it was time to go back on the Ranitidine, which is nothing more than Zantac but none-the-less, it is yet another medication to add back to his list. Are we discouraged? No. But, I will admit that I hate this drug because it makes my food smell like nothing. Yes, you read that right - Greg does lose his sense of smell and most of the time the taste buds pack their bags as well. So, I either have to spice up the dishes more (and go through heartburn myself) or he has to deal with it. Luckily, we both agree on the latter but this is just one of the wonderful roller coaster rides of the transplant drugs. We can't complain though - thank God it is not anything like rejection!

~Shan
http://www.angelcove.us

Not a creature was stirring

Did I use this title before? I think it was a year ago that it was last used because of the calm and quiet right after the holidays. For us, the quiet is quite welcome as that means there is nothing wrong on the "health" part of our family. Greg's lung functions are still in the high 70's and he has hit his all time high a few times in the last couple of months. His next transplant clinic appointment is in January with no future bronchoscopy planned at this time. Just the normal routine for this visit - CT scan, physical, blood tests, long wait to talk to the transplant team, and then after hours of waiting for the transplant team, a 5-minute conversation with them before heading home. (smile)

It is nice to not have the worry of medications and illness on our minds at this moment. Yes, he is still on medications but nothing has changed for a while so this is a status quo time for us. Of course, I always get nervous when things get quiet. This is normal for any caregiver and loved one of someone with an illness. You try to enjoy the "down time" but fear that this time can and will change in the blink of an eye. So, part of you stays on guard, never truly allowing yourself to relax. It is a sad reality of life with a CF and post-transplant person in your life but it does get easier as time goes on. It is important though to never lose site of how valuable these times truly are - for you never know how long they will last.

He is too funny!

Okay, so I didn't realize that having Christmas at our house this year was going to be so much work - around 28 people! So, Greg and I have been hard at working getting our house in order and boy is my husband funny! For so long he sat on things and then at the last minute he is out looking for bar stools for his rec room. He is so excited that he can do everything himself - without the need for oxygen and the like - that he has been non-stop. He has been asking me every night: "So you want to go with me?" Where now?? (laugh) I have baked ziti to make, cookies to bake, and a homemade Italian dessert I have never made by myself before. Then there is the other cooking, cleaning, decorating, etc. And the man is doing circles around me. If I didn't know better, I would swear he was on drugs! Wait! He is on drugs - loads of them! They are called transplant drugs! (laugh)

Still Climbing

"6 months after the transplant and you will reach the highest lung function you will ever reach", says the surgeon just days after a double lung transplant. There is no response today other than to laugh. Over a year post-transplant and my husband has hit a new all-time high! I believe that his new all time high gets him to the 77% lung function mark. Yes, boys and girls - he just keeps climbing that mountain even after the hospital told him he would reach the peak at 6 months and either stay there or fall slowly down the slope. Well, he is still climbing - looking upward - and working to reach the summit of all lung functions. Yes, you guessed it - Greg is working towards a perfect 100% lung function!

I will grant you that he may never reach it - heck, there are a majority of healthy humans that never reach it but it is his goal, his ambition, his future! As long as he continues to exercise, take his medications regularly, and put his health first and foremost, he has great odds of reaching the summit.

Year coming to an end

With the year coming to an end, I can only look back in awe of this past year. As with anything else in our lives, there have been good times and bad. Greg's recovery from his transplant was nothing short of a miracle in and of itself. Unfortunately, we have lost a couple of friends that have not been so lucky. One friend, James, finally received his miracle but it was short lived and he never made it out of the hospital. Another friend, April, became from her disease (Cystic Fibrosis) and was in the hospital for months; never to leave the hospital again. I have known both of these people almost as long as I have known my own husband. It is because of Greg and his illness that I sought out others with Cystic Fibrosis - to gain knowledge and to learn more about the people inflicted with this disease. Alas, I never thought I would make such great friends and then to hear of these passing - it is sometimes more than my heart can take.

You see, I am the "save the world" type of person. I want to help everyone I can with whatever God has given me. That is my purpose in this life - to help others - including my wonderful husband. But giving does have its price and the emotional bonds that can be created through giving of oneself end up being stronger than anyone can imagine.

So, as I look back on this year, I realize once again that I have grown into a more well-rounded spiritual, physical, and mental human being. We learn from our mistakes and try to do the best with what we have been given. The passing of two very young friends highlights how much of a miracle Greg's transplant truly is and how we should give thanks each and ever day to God for this miracle. It is not that Greg is more special than any other human being - it is just that God has more work for him to do on Earth before he can be granted the rewards of heaven. Maybe it it is to teach us more about compassion for those with illnesses or maybe it is just to hold someone's hand in their time of pain - either way, I am grateful for every second that Greg is here with me...

Throw the towel in

Advice does not come easy - especially when dealing with a terminal illness or a organ transplant. So, normally I will stay away from giving advice and just give information on our own experiences in these areas. I usually stay away from phrases such as "you should" or "what I think" but, alas, this time, I may have gone over that line without even noticing it. How do I know this, because once I gave a certain person information on the difficulties of these types of situations and how they need to look at their own lives through a magnifying glass to assess the situation, the person's attitude changed. What was once a person seeking help and not feeling that they can make it through the roller coaster ride of a spouse with an illness such as Cystic Fibrosis, turned into a person explaining away how their previous thoughts may have been premature.

Okay, so I can say that some good came from our communications but I did forget one of the finer rules of medical illness in families - never given advice - even if asked - because each person's experience is different than another's. Did I forget that each situation is as unique as those individuals going through it? No, not for a moment. But, my problem was that I didn't convey this enough during the communications. That is why I am posting this as an addendum to my previous posts.

No two situations in CF, lung transplants, or any other medical cases are the same. Each is as unique as the fingerprints of humans. We are all different people and even if the disease is exactly the same (even though diseases act quite different on different individuals), the way we handle them; mind, body, and soul, is very different. For example, a person in Greg's position may have decided to party their lives away instead of get their degrees - they would have just died but on their terms and most likely would have died sooner because they gave up on life. However, my husband did not and he is still alive today. Why? Because he handled it differently than a good number of people out there. Does that mean he is any better or happier than others out there that handle CF and transplantation differently? No. It just means that he is different and lives by his own rules and understand the consequences or rewards of his actions. We must all take responsibility for the choices we make regarding anything in our lives - even giving advice.

Final Suggestion

Another "conversation" took place between my friend and myself on whether or not this person should enter a relationship with someone who has Cystic Fibrosis. Again, I thought this information may prove of some help to others considering such a relationship... Again, this is only my advice based on my own relationship with my husband who has CF and a double lung transplant.

I read through your emails again and I can see that you are confused by this whole thing - rightly so. I cannot tell you whether or not you are overanalyzing things - I am not you and am not in your situation. I can only speak from my own personal experience and give you information bases on that. So, I will not say whether or not you should continue with a relationship but I will give you information based on our relationship.

First, you asked about Greg being on a vent for 8 months. Yes, he had a tracheostomy after 2 weeks of being on the vent and after a couple of months he was able to be on a trach mask during the day. Of course, with CF, the stuff still needed to be coughed up and out of the trach so we also had a suction machine that went with us wherever we had to go. Those were difficult times but it only made us stronger. :)

As I have said before, I wouldn't trade my relationship with Greg for anything. If I had to do it over again, I would. He is well worth it and you need to take a look at what you have in front of you and decide which path your are going to take. By continuing in a relationship with this person, you don't necessarily have to give up anything in your life but you may have to make significant changes to your life and lifestyle. That which you are accustomed may not be tomorrow. You are the only one that can decide what is right for you - no one else.

My recommendation would be to continue on with the friendship and try not to look at the CF. Think about it - if you were looking to get into a relationship with this person and this person did not have CF, would you? If you did and this person was diagnosed with cancer after 5 years of being married, what would you do? Most people would stick around - it is because we have this in our face now that we think about it more and more. We base decisions on the disease rather than the love or the relationship we have with the person. If you have that strong of a bond and love for one another and you are willing to go through hell for each other (even if hell never comes), then it is all worth it. If you have your doubts about the relationship in itself, then it will never work and you cannot feel bad because of it - that is just a normal part of a relationship.

I hope this helps and if there are any other questions I can answer, please feel free to contact me any time!

New Transplant Forum

There is a new transplant discussion forum out there and I have been asked to moderate the caregivers section. It is the 2nd Wind Forum and is designed to assist people that are either waiting for a lung transplant (pre-transplant) or have received one (post-transplant). The Caregivers section's primary focus is to keep your loved one healthy by keeping yourself healthy. Now that is ironic! During Greg's transplant and overall care, I had to keep reminding myself that if I was not healthy, I would not be good to anyone at all - especially Greg. So, I took the time to research all about staying healthy and have often provided information to others on keeping themselves healthy.

I will grant you that hospital food is far from "healthy" at times and there is little time to get exercise but it is possible to stay healthy on top of such a life-changing event as a single or bilateral lung transplant. If you truly think about it - the sicker the caregiver gets, the more worried the patient gets, and therefore the patient gets sicker. It is a vicious cycle and by moderating the Caregivers section, I hope to enlighten other families about the negative impact this cycle can have on both the sick and healthy in the family.

I hope you will come and join us at the 2nd Wind Forum and share your experiences with lung transplantation and organ donation.

Had to give the bad news

You may remember that I was giving advice to someone who was looking to enter a relationship with a CF person. Well, after a few discussions, I had to give this person the bad news - as far as my experience tells me and from what I was hearing from this person - they were not meant to be in a relationship with this other person. The person with CF is just not emotionally strong because of this illness and since they had not even formally entered a relationship as of yet, it just doesn't seem to me that it is going to work out.

Now don't go blasting me about breaking up a relationship! I am just being honest. In about 99% of the relationships with a CF person, I stand behind the relationship and tell them they can make it through and it is worth it. Unfortunately, these two are at totally different ends of their thinking patterns and I am not sure if the relationship would work without the CF. I am saddened by this because I have found such a wonderful love in my husband - even though he has Cystic Fibrosis and has had a double lung transplant. He has a beautiful soul and I would hate to have him removed from my life. But, unlike this other person, my husband has always seen himself beyond the disease. He used to go to work with O2 and home IVs in his bag. This disease never stood in his way and it was only during his times of true illness (to him) that my support and care were really needed. Yes, I have gone above and beyond for this man during his time of need but when you enter a relationship with someone with CF, you have to realize that at some time, there may come a time when everything in your own world stops and the only thing that is important is that person and their health. Vacations are brushed off, kids may never happen, and the career path you chose may not be the same one you travel down. Yes, it is called sacrifice and with this disease, they are made often.

Holidays Fast Approaching

With the holidays fast approaching, it is difficult to stay on top of what needs to get done. There are Christmas presents, baking cookies, insurance, holiday events, taxes... Wait! Okay, so those that do not have a medical condition in their family don't really put a lot of thinking into the insurance or taxes but in our family, we put a lot of thought into this things and need to make sure that everything is set up for the next year. Luckily for us, we have gotten the insurance signed up for (medical, vision, not dental) but there are the tons of medical expenses that we need to gather information on. Last year I did great on this because I took care of most of the medical items throughout the year but, well, I handed it over to my husband, and, well, his records are lacking in several areas. So, now I have the joy of going through all those medical trips, things we paid for out of our own pockets, and other deductibles. Can you just hear my anticipation? (laugh)

On top of that, I am running two online stores - Dakota's Den and Living Miracle - of which I am both redesigning and even added a couple of new designs to Living Miracle this morning. Unfortunately, we have not received a letter back from the donor family but I started to think about them and what I would want to say to them this holiday. Then I found a couple of wonderful poems that seemed to take the words out of my mouth. So, I created a thank you design and gift of life design around these poems - intended as a gift to the donor's family. I wish I could give this gift to them but it will just have to wait until they are ready. I do pray that they are okay and that they are able to enjoy the holidays as best as they can... But I don't know life from that side of the coin... So I will just pray and continue my work on raising awareness of organ donation.

Anyway I can help

Someone had contacted me recently about entering a relationship with someone that has an illness. I agreed to respect their privacy and feel that my reply to some of the questions that I had sent may help someone else by outlining my perspective on entering such a relationship and how we overcame the roller coaster that is illness and found support in our love for one another.

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How was it for me and my husband when we first started to date and throughout our relationship? Hmm - a roller coaster ride! Greg told me online that he had CF and I went crazy researching it since I never heard of it before. It was then that I found out that 97% of men with CF cannot have children on their own. Coming from a large Italian family, this hit me hard. Not only was there a chance that I could be a widow by the time I was 30 but I may also never have children of my own. Because of this, I broke up with him a couple of times within that first 2 years - because it was just too hard. But then I realized that I was empty without him - without talking to him, without seeing him. When I think about him, I smile and my heart skips a beat (even today). I will admit, I have had crying fits and even had one large yelling tantrum at God while standing in front of Greg - for giving such a beautiful person such a horrible disease. I weighed my options greatly and finally realized that 10 minutes with Greg was worth more to me than 50 years with someone who I wasn't happy with but that was not sick and gave me children.

How do I balance our marriage? Hmm - I don't. (laugh) In the beginning I used to think about the disease and how I would balance the healthcare and relationship. Then I realized that the disease and Greg were two separate entities. I have learned to take his disease as things come. I originally thought there would be no way I could handle everything but have found strength in my love for him. We have discussed the end stages of life for both of us so we were well informed should anything happen... I prepared with life insurance for Greg... Should he not be able to work and I die. I know at what stage Greg would want to die if on machines.... And so on. As far as relationships... We do what we can to live as normal as possible and before the transplant, we chose our events carefully and would check to see if anyone else has colds... Etc... Before attending.

Do we have children? Yes and no. Being married in itself is like having a kid - my husband. (laugh) Actually we have a chocolate lab puppy and we are getting another one in 4 weeks. We have made the decision at this moment not to have kids because he is immune suppressed. But, I have always known, since I was a teen, that I would adopt older children one day because there are so many in need - all because they aren't a baby anymore. This also helps make sure that all the colds small children get are not posing such a influence on Greg's health.

Do I work? Yep. Even while my husband was the sickest and waiting for a transplant, I switched jobs, was going for my MBA, and bought a house. Greg was on disability and on O2 24/7. I made sure that my job would cover the insurance right away and explained his situation. They gave me the opportunity to work from the hospital and hotel when he was sick and during his transplant. Now I work mostly out of my house (my team is in Boston) which works out well to help prevent colds. I travel to and from Boston and he works full time in an office. We have separate things we do and do things together as well.

Okay - not that this email is not long enough but now I get down to some advice. (smile) The main thing I have learned throughout this all is that if you truly love someone, you can get through what usually seems impossible. I have sacrificed some "normal" living when Greg was at his sickest. Also, the main thing with entering a relationship with someone who has a "terminal illness" is that it opens your eyes before you enter the relationship. Many people get married and are healthy and then stricken with a disease or something - which they are not prepared for. The upside is that we learn to be prepared - the downside is the we sometimes over analyze things because of the disease.

My suggestion is that you evaluate what you want from your life. I didn't plan on my life being like it was or is today - I just happened to fall in love with a man, who happened to have CF. Look at the person first, the disease second. But before that, you need to look at yourself. It is not selfish to think about you... It is the right thing to do. Evaluating the situation before the relationship starts is very responsible because this way you are protecting yourself and the other individual. The last thing a sick person needs is someone to walk out on them when they need them most.

Patient's Rights

All too often, people feel uneasy about creating any ripples in the water and take what someone says to heart, even if there is something wrong with it. I am talking about patients and medical care here - the most overlooked topic of any disease. Often people work to find a cure for the disease or to bring awareness to it but too many people do not take a more active role in their own or family member's medical care.

If a nurse comes into your hospital room and hangs a new IV, are you going to ask what she is doing? Most people don't and that is where medical mistakes occur. In this case, it make have saved my husband's life - they were hanging an IV bag, filled with a medication that can shut down the kidneys if given too frequently. It was the right IV but it was being given 8 hours too early! He had just had his last dose of it!

What if a doctor or nurse comes into your room with a new pill for you to take? Do you just take it and be a good little patient or do you ask about it? Again, this happened to us and could have caused acute renal failure (kidney damage again!). They gave him the new pill and I asked for a information sheet on the new medication. As I sat reading it, his food arrived and no sooner did I finish reading the information sheet did I look up and see cranberry dressing on his turkey. Whoa! No! The sheet said specifically not to eat cranberries while on the medication as the combination can lead to kidney failure. The nurses, doctors, and dieticians all did not pick up on this.

Being part of your medical care is crucial! Don't feel bad to ask questions or even refuse treatment. Remember that you are a consumer and they are providing a service - a service which you are paying for! You deserve the best care possible and mistakes happen all too often in the medical field. Ask questions, question changes in medical treatment/medication, get involved and do your own research on anything you may have a question on. If it doesn't seem right, question it! If you are not happy with the medical treatment you are getting, ask for a patient advocate or to have a meeting with the doctors or nurses.

We have questioned many changes in Greg's medical treatment and have often brought light to a problem. In the past few years, hospitals have: 1) given him the wrong medication, 2) given him a combination of medications/food that may kill him, 3) given him medication too early, 4) scheduled major surgeries/procedures for things that could be simply fixed (he was dehydrated - they wanted to change his medications, he had an infection in his arm - they wanted to do nasal surgery, his blood sugar was too high because of an antibiotic conflicting with a transplant medication - they wanted to admit him). The list goes on and on but the point is clear, become your own advocate. Stand up for your rights! Do not let anyone treat you as anything less than a human being! Believe in yourself! Take a stand to ensure that you do not become one of this hospital mistakes!

How many lives...

It is amazing how many lives are touched by organ donation and transplant awareness. It was for that reason that I created an online store called Living Miracle, where people can buy organ donation awareness products including shirts, mugs, stickers, hats, and so on. I must be honest and let you know that I had originally created the store to make a shirt for myself that stated: "Organ Donation Saved My Husband's Life. Be A Hero. Be An Organ Donor." All of a sudden, everyone wanted one with their own relationship to a family member on them. So I created ones for aunt, cousin, mother, father, sister, brother, wife, uncle, and the list goes on and on. There are even general organ donation awareness designs. Why am I doing this? For profit? No way! Any of the profits go to pay my husband's medical bills that have occurred since his bilateral double lung transplant and continue to accrue. The real reason is to get the message out.... There are over 80,000+ people waiting for organ donations - that means that they are dying at this very moment! Without a transplant, they will die. For me, I have to question why more people aren't donors. It is not that we, on the receiving end, are wanting people to die. It is more that we pray they will be an organ donor IF they are going to die anyway. We pray for a miracle, not for the donor's family to be in pain. We pray that such a gift would help the donor's family mourn and know that their family member has saved the lives of up to 50 people!! That's right - one person can donor organs, skin, tissue, etc. To impact the lives of up to 50 people who are suffering out there. Wow! What a hero that donor is!

You can find Living Miracle Organ Donation and Transplant Awareness Store at: http://www.cafepress.com/donorawareness/?pid=3784716

God Bless!

Genetics Project

Just last week, I received the following email:

Hi! I'm doing a genetics project on cystic fibrosis. Each member of the group has a different role and I have "patient." I read in your blog that your husband has CF. I was hoping you could tell me some things the websites didn't and your blog didn't..like how cf effects both his and your emotions and what toll it takes on married life and mental well being. if you could write back, I'd appreciate it! Thanks!

Yes, I can answer to the individual back in an email but how will that help all of the other people out there dealing with this disease. So, I figure - why not answer in on my blog. :)

The emotional effects of Cystic Fibrosis (CF) on our relationship has never been easy. Shortly after we began dating, I was visiting him in college and I am not sure what caused the discussion of his disease but I remember that I ended up screaming and crying. The message was clear: I loved him, hated his disease, and wondered how God could give someone such a beautiful soul and such an ugly disease at the same time. Not only do you deal with the illness through the physical acts of being sick but you also have a lack of intimacy and closeness that occurs from the disease. First off, and I am being blunt here, intimacy includes heavy breathing and long kisses - how in the world can you do that when the person cannot breath correctly? I cannot even begin to count how many times Greg has coughed in my mouth when kissing or has had to stop in the middle of some "intimate" act because he had to run to the bathroom to cough up stuff. How would that make any partner feel to have someone have a major coughing fit, to where they are coughing up junk, turning red, gagging, etc. when you are being intimate? It crushes you because even though you know it wasn't anything you did, you feel bad and emotionally it is draining.

Now for the married life. (smile) When you enter a relationship with someone with CF, you have what I call a "triangle relationship" - you, your mate, and the CF. It is like the little brother that just wont leave you alone. You have not only your feelings for the person to think about and the commitment to them but a commitment to hospitals, sickness, and possibly being left a widow by the age of 30 years old. Then there is medical insurance to think of, career paths that may have to be put on hold, responsibility of maybe being the only bread winner in the family if the other one should no longer be able to work, and then there is the nursing you may have to do. Me, the person who hated blood, has had to do things I never even imagined to keep my husband alive long enough to get him to his transplant - inserting (popping) a trach tube in his throat, cleaning the trach area every day, hooking him up to a vent, bathing him, suctioning him (and all that come out of CF lungs), cleaning up body fluids, cleaning g-tube area and all growing tissue, etc. Then there are the mountains of doctors appointments and trying to work full time and get some sleep/food. Right before Greg's transplant, I was working full time, the only bread winning, carried the insurance, took care of our house, went to grad school, etc. all at the same time. Not an easy feat.

So, is this all meant to discourage someone from being in a relationship with someone with CF or waiting for a transplant - no way! But, I will admit it takes one heck of a strong person to do it. Someone should not be shamed for walking away from a CF relationship in the early days of it - I give them credit because they know they are not strong enough and it gives the person with CF the opportunity to find someone that will love them no matter what. It is kind of like bringing all the bad things (illness) that can happen out in the relationship right away rather than being married for 20 years and then it happening. A number of people divorce because of this type of stress so it is good in a way that they know what they are up against from the beginning. And, lastly, I would like to say that any person that gets into a relationship with someone in this situation is being blessed. People with CF are the most wonderful people I have ever met and have the most beautiful souls - people say that I am a blessing to my husband but I truly believe that we are both blessed. Would I enter this relationship again, knowing what I know now, in a heartbeat! My husband - with or without CF - is worth it!

Day 1 of 10 days

It seems like it has been an eternity since we had gotten the news - Greg has some pseudomonas in his lungs - just a small bit - but enough to come up on a culture. And so he was started on a 10-day cycle of Colistamethate every month until his next bronchoscopy. Tonight will be the first night of the month where he has to do his nebulized treatment but it is a small price to pay for the freedom of being able to breathe. I would much rather do without the nebulized treatments at all but as he has said all too often: "By having a transplant, you are just trading one disease for another." I will grant you that this is a far cry from what he had to do a little over a year ago; before his transplant. Of course, there was also the huge oxygen tank that once lived in the middle of our house with a 20 ft oxygen tube coming from it - Greg used to call this his "leash" and hated it. With all of this taken into account, we truly cannot complain. Yes, it is not good to have this bug in his new lungs but we are working to get the buggers out now before they decide to plot land. As long as we stay 1 step ahead, we can never fall behind.