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Thursday, April 27, 2006

Blessed Art Thou

I love hearing when someone else has received an organ transplant and is well on the road to recovery! A friend of mine, whom I met online, just received her double lung transplant last week at the same hospital as my husband and had her final chest tube removed today! It is always a blessing to hear about those that not only make it to receive their miracle but also make it out in a much better shape then when they entered. Blessed art thou that understand the true gift of life!

Wednesday, April 26, 2006

Contagious People

All the viruses that have plagued our home for the last couple of weeks are now gone and we are finally starting to get back to a normal life. The last thing we want is another cold or flu coming around us and risking Greg's health once again. Unfortunately, some people do not understand the importance of keeping germs away from my husband. They feel that as long as they do not touch him or breathe directly into his face, that he will be fine and the cold they have will not spread. They are wrong.

Being in a closed environment with a contagious person is a bad thing for anyone who is immune system suppressed. Germs and bacteria live on hard surfaces for a couple of hours and the bugs can also be recirculated through a vent system without the building. There are even some people which compromised immune systems that wont even go into a public place if they know there will be more than a couple of people with something they can catch. This is one of the reasons why we don't even attend the church anymore because there are tons of sick people looking to get well there.

Nonetheless, a family member of mine has called and told me that she is in the area and will be popping by in the next couple of days to see us. She has a horrible cold that she hasn't been able to shake for a month now and sounds like some nasty little buggers are living in her lungs. Great! That is all we need - someone with not only a cold but a chest cold coming into the home of someone who had a double lung transplant! I have told her point blank that she better lose the cold before she comes over and she has agreed that she does not want to infect my husband in the least bit. The problem is that she is still making arrangements to come by even though the cold is not gone yet. Why? I would like to say it is because she wants to see me, but I would be lying. It seems she had a package shipped to my house for her because she knew she would be traveling cross-country and that my location would be the closest to where she was at that given time. Of course, she didn't tell me about the package being delivered until she told me she was only a couple of states away and heading my way!

Sure, she is a direct relative but my priority is my husband. I have no problem putting her package outside and waving to her from the window. There is no way that I am risking Greg's second chance at life for someone who decides to pop over with a highly contagious chest cold.

Monday, April 24, 2006

Broken Fever

It is finally gone! The fever that was once plaguing my wonderful husband has packed its bags and hit the royal road! I am not sure what destination lay before it and, quite frankly, I could care less. I am just glad it has finally left the four walls in which we dwell.

So, what was the culprit? Not a clue. Right now we are still waiting on Greg's sputum culture and chest x-ray results to come back. The sputum cultures can take up to a week, depending on what grows but the chest x-ray should hopefully come back in the next 24 hours. Either way, we are elated that there is no longer any fever or cold in this house - including the one that I once had!

Where do we go from here? We sit back and enjoy the life we were given. As anyone can see, the life of a post transplant patient and his or her family can have its ups and downs. It is enjoying the "ups" while you have them that matters. A new life was given - a gift and a miracle - why spend it worrying about tomorrow? Enjoy today!

Friday, April 21, 2006

Reenter the Fever

Some time during the afternoon, Greg got very hot and sweaty. It was just a few minutes but it signaled the end of his fever. From that point onward, he was a nice 98 degrees for the rest of the night. Unfortunately, the celebration didn't last. This morning he awoke with yet another fever of over 99 degrees and we made sure it was a long time since he had gotten up and showered.

Needless to say, the transplant hospital wants to keep tabs on this low grade fever. So, the transplant coordinator called up the local hospital and sent Greg over for a couple of chest x-rays and a sputum culture. We have yet to hear back from them as to the results and are anxiously keeping our fingers crossed in the meantime.

While we wait, my cold continues to taunt me. I will be fine for a couple of hours and then sick as a dog again for a few more. We aren't sure what is plaguing our family but, whatever it is, it is not welcome!

~Shannon
http://www.angelcove.us

Thursday, April 20, 2006

Persistent Low Grade Fever

This low grade fever of Greg's just won't go away! Now he is over 100 degrees and the Cipro/Tylenol combination is just not working. Besides feeling a little tired, he is doing well otherwise. His lung functions remain high but he is coughing up some greenish-yellow phlegm. What does this all mean? I have no idea! All I do know is that I am nervous once again and rightfully so.

Granted, there is more nervousness to be had if his lung functions were declining. So, I should count my lucky stars that the lung still seem to be doing relatively well considering the state of things. It is the unknown that brings on the greatest fear. If it only had a name, we could start to treat it.

Per our agreement, since Greg has not hit over 101 degrees in temperature, he did go to work today. However, he also emailed his transplant coordinator as soon as he got in to let her know that things have changed. I am not sure what course of action she will want to take - if it means a trip 2 hours to the transplant hospital or home IV treatment. What I do know is that if he gets admitted to the hospital, I cannot stay with him nor travel back and forth at this time. Unfortunately, I started to develop a cold yesterday and between that and my job, our dogs, and my normal responsibilities, there is no way my body could handle 4 hours in a car each day and hours in the hospital to watch my husband be bored out of his mind. Of course, if he were in a very bad shape, then I would drop everything to be by his side. As of right now though, we are once again in a stand still - waiting for the hospital to respond and tell us what the next step is that we must take to ensure that his body does not get damaged and he does not suffer any organ rejection.

Any and all prayers are welcome at this time.

~Shannon
http://www.angelcove.us

Tuesday, April 18, 2006

Vacationing Sick

Greg had started our 4-day long vacation to sunny Florida with a low grade fever of 99.5. Upon contacting the transplant hospital, they put him on Cipro immediately and told him to continue to watch his spirometry numbers in the morning and night as well as his temperature. Ironically, the whole time he was in Florida, his temperature was the same or normal and it was then clear that we could sit back and enjoy our vacation.

This does not mean we threw caution to the wind and forgot the normal regiment. Among our luggage was his spirometer, blood pressure machine, thermometer, glucose meter, and more than a week's worth of his pills. Since it was only 4 days, he decided to not lug his air compressor, nebulizers, and Pulmozyme on the trip as well. That was part of his normal daily regiment but one that wasn't harmful if he missed a few days.

We didn't miss all the machines one bit. No oxygen tanks, no air compressor, and not having to worry about whether or not he would get short of breath. Sure, it was hot down in Florida and we weren't used to it but we knew when the heat had won and would quietly retreat into the house or a building for some much needed air conditioning. That does not mean that we did not enjoy ourselves. Quite to the contrary, we had a blast! Greg got to golf 3 days out of the 4 and I got to shop and much needed time with my family - whom I have missed a great deal given that I am more that 900 miles away from my closer living relative at this moment.

Now it is time for us to rest. Rightfully so, my wonderful husband decided last minute to take the day off and rest. He is still getting over the low grade fever or cold he has so rest is much needed. It just isn't worth it to stress yourself out, trying to get everything done. The body needs time to recuperate and after everything we have done over the last 4 days, our bodies deserve it.

~Shannon
http://www.angelcove.us

Thursday, April 13, 2006

Low Grade Fever

Sure, we are supposed to leave for sunny Florida this afternoon when Greg tells me this morning that he is going to call Anne Marie. What? Why do you think you should call your lung transplant coordinator?? When this is said, it is usually something not good - not good at all! He goes on to tell me that he has been running a low grade fever since Tuesday morning of nothing more than 99.5 degrees F and his lung functions are good though.

Panic struck in my heart but I remained calm. Of course, I let him have it about not telling me sooner. Our plane leaves at 4:30pm and you tell me now? After he apologized and told me that he didn't want to worry me, he sent off his lung function tests to the hospital from his spirometer, called his transplant coordinator to leave a message, and even emailed her as well. We are leaving no stone unturned in this!

No, there really is no need to panic at this point. The low grade fever can be from a number of things that we were able to come up with this morning:
  1. When he went to take his pills last night, he noticed 1 Tacrolimus (Prograf) pill stuck in the case from Monday that he most likely did not take.
  2. He hasn't been checking his blood sugars.
  3. He hasn't been drinking a lot of water over the last few days and most certainly is dehydrated to some point.

Then there are the weather changes in the Midwest and the fact that he has been running around trying to get ready for our vacation to Florida. We doubt it will cancel our trip but, if anything, the transplant coordinator may either have him just keep an eye on it, change his medications a little, or put him on an oral antibiotic for a few days. Of course, there is still that 1% chance that our trip will be cancelled but, we are focusing on the 99% instead.

Tuesday, April 11, 2006

Power of Optimism

Just because Greg had a double lung transplant and has been given a second chance at life doesn't mean that life is easy or that everything in our lives has changed. Ironically, after overcoming a peril such as life-saving operation and terminal illness, the mind starts to forget what it has learned from the experience and sometimes we go back to the same behaviors, even the bad ones, that we had before the life-altering experience.

What am I talking about? Well, unfortunately, my husband had been raised with a very negative and pessimistic role model for most of his life. Interestingly enough, when this person talks to anyone, especially Greg, they spew words of negativity and make the person they are talking to believe that they can't accomplish certain things in life. You would think that after we have been shown that anything is possible in life, that both the role model and my husband would have learned the power of optimism. Alas, Greg did but has now started to forget...

Where is this all coming from? Well, every year or so, I sit down and write up a personal goal list for the next 1-3 years. From that list, I choose the top 5 and concentrate on accomplishing those goals in that timeframe. Since Greg is my best friend, and some of the goals involve him, I have shared these goals with him and was met by criticism. "There is no way we can get out of debt by that date." "What makes you think you can accomplish that?" "That is impossible!"

Let me back up here for a moment. When Greg was very ill and at home on a ventilator, I wrote my first goal list after listening to Tony Robbins. Among those things on my list were to get out of credit card debt, buy a house, have straight teeth, lose weight, and get my MBA. Want to know how many of those goals were accomplished within 3 years? All of them! Within days I made an appointment with an orthodontist, set up a budget, started to eat healthier, sent in my graduate application, and kept my eye out for mortgage rates. This was while I was working full time, taking care of Greg on a ventilator at home full time, being the only bread winner for the family, and taking care of the normal things.

Now, we have two incomes, Greg is healthy, and not only do I work full time for a great company but I own my own web development and graphic design business. That is why I am having an even harder time with the pessimism that I am faced with. I have proven once before that written goals can be accomplished, even in the worse of situations and yet this learned behavior of his has resurfaced. Why? I believe it is the trickle down effect. You see, we are leaving for Florida in a couple of days and the "role model" started telling Greg how he hadn't thought through our flight well - he mentioned something about how Greg never flew after 9/11 and is underestimating the airport rules and such. Well, hello there! I flew to NYC just 2 months after 9/11 and travel between Milwaukee and Boston frequently for business. But, alas, I am just a woman and this "role model" and even though I was able to pull my husband through a terminal illness while doing everything else and assist him through his transplant, I don't have enough brain power to make it through an airport.

So, I had a few choice words for my wonderful husband. I told him he could either shut up or learn how to be optimistic because after all God has shown us in our lives, there is no room for doubt and negativity. Not to worry though - shortly after I made this comment, he applauded me for taking an active role in our lives and striving for the goals I have set. I am glad to see that he hasn't truly forgotten the role of positive thinking in our lives... I just wish it didn't take so much of my energy to keep reminding him of it!

Friday, April 07, 2006

Post Transplant Check Up

Every 3 months, Greg has his post transplant follow-ups at the transplant clinic at UW-Madison. This past Monday, he got to spend his day off getting a battery of tests to make sure that everything is working as it should. Sure, we are concerned about chest x-rays and the sort but his blood work is always the thing that leaves us on pins and needles. Of course, the test results take forever and you get them back little by little, which makes the whole process seem even longer. We are truly blessed though because Greg's main anti-rejection drug, Tacrolimus (Prograf), came back at a "5". That means that he is perfect at this stage since they want that level to be anywhere from a 5-8. Besides that, it seems his kidneys are still doing very well since his Creatinine level came back at 1.3. This is also very good since his normal levels have always been around 1.1. the Creatinine level tells the doctors how well the kidneys are flushing out the toxins in the body - the higher the levels, the more toxins that are in the body. For "healthy" people, the range is from .9 to 1.0, so Greg's kidneys are able to hold their own - even with 14 or so medications a day!

Overall, it was a great visit with a highly positive outcome. We pray that all his future visits go as smoothly!

Thursday, April 06, 2006

Post-Transplant Vacation

One week to go before we leave for beautiful, sunny, warm Florida and we are so excited. This is our first trip since Greg's transplant back in November 2004 and every time I mention the trip to him, a big grin comes across his face and his face turns a little pink from the excitement. It is amazing how something so small as his face changing color, could have me in awe. Before his transplant, he was always blue and now to see a healthy shade of pink... Well... There are no words to express how blessed I feel.

Of course, we will pack the sunscreen and make sure to take extra medications with us but any amount of preparation is well worth what awaits us!

Wednesday, April 05, 2006

Organ Donation Myths and Facts

Many people say they would be an organ donor but that they are scared. I hear this all the time when I am talking to people about my husband's double lung transplant or people find out I am an organ donor advocate. The first thing they tell me is that there is just something that isn't "natural" about it and they cannot picture their organs being harvested. My response is that the person will be long gone and won't even care about the body they left behind. Anyway, what better way to leave an imprint on this world then to save the lives of at least 8 people and positively impact the lives of up to another 50 people through tissue, skin, cornea, bone marrow, et al, donations?

Sadly, there are a great number of fears behind being an organ donor because of the myths that have circulated about organ donation and the life of the donor. In general, the myths include, but are not limited to:

Myth. If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life. They'll remove my organs as soon as possible to save somebody else.

Reality. When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. This effectively shuts the door to your being treated by a transplant physician, who works solely with transplant candidates and recipients. The doctor in charge of your care has nothing to do with transplantation.

Myth. Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered.

Reality. Although a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth. My family will be charged for donating a loved one's organs.

Reality. The organ donor's family is never charged for donating. Your family is charged for the cost of all final efforts to save your loved one's life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient. If you receive a bill for what you believe are costs related to organ donation, talk to the billing department of the hospital. You may have misunderstood the charges, or the costs may have been misdirected. Funeral expenses are still the responsibility of the donor's family.

Myth. My loved one has suffered so much because of his illness. I don't want him (or her) to suffer anymore.

Reality. Your loved one is dead at the time of donation and cannot feel pain. Even after death, every effort is made to ensure that your loved one's body is treated with the same degree of respect as is given a living patient.

Myth. Blacks in the United States have a history of being given inferior treatment as compared to whites. How do I know that my organs won't simply be given to whites and that black people won't be denied an organ whenever a white transplant candidate needs one?

Reality. The national organ transplant waiting list is colorblind. Among all of the medical data listed on the transplant list for each person waiting, no race information is specified. When a donor organ becomes available, those allocating the organ don't know the race of those waiting for it. Allocation is made according to medical data, the severity of the illness and time spent on the waiting list.

Myth. Blacks in the United States have a history of being given inferior treatment as compared to whites. How do I know that my organs won't simply be given to whites and that black people won't be denied an organ whenever a white transplant candidate needs one?

Reality. The national organ transplant waiting list is colorblind. Among all of the medical data listed on the transplant list for each person waiting, no race information is specified. When a donor organ becomes available, those allocating the organ don't know the race of those waiting for it. Allocation is made according to medical data, the severity of the illness and time spent on the waiting list.

Myth. Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest.

Reality. The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently than anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate. Remember, too, that it would be unfair to deny someone a transplant simply because he or she is a celebrity.

Myth. I want my loved one to have an open casket funeral. That can't happen if his or her organs or tissues have been donated.

Reality. Like an autopsy, organ and tissue donation doesn't interfere with having an open casket funeral. If organs are taken, the body is stitched up as if the person were alive and had undergone surgery. The body is clothed for burial, so the stitches aren't visible. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back, and because the donor is clothed and lying on his or her back in the casket, no one can see any difference. For eye donation, an artificial eye is inserted, the lids are closed, and again, no one can tell any difference. For bone donation, a rod is inserted where bone is removed. The body is stitched up and clothed, so no one can see any difference.

Myth. I'm too old to donate. Nobody would want my organs.

Reality. There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth. I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues.

Reality. Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth. I would like to donate one of my kidneys now, rather than wait until my death. But I hear you can't do that unless you're a close family member of someone in need. I don't have a family member in need. I just want to help someone — even a perfect stranger.

Reality. While that used to be the case, it isn't any longer. Whether it's a distant family member or friend you want to help or a complete stranger, you can donate a kidney while you're still alive. Not all transplant centers will agree to this, though.
If you find a transplant center that will consider your request, you will undergo extensive questioning to ensure that you are aware of the risks and to determine the rationale behind your desire to donate. For instance, donors will not be accepted if an exchange of money is to take place between donor and recipient or if there's any hint of coercion on the part of the recipient or the recipient's family. You will also undergo testing to determine that your kidneys are healthy and that you could live out the rest of your life with just one kidney.
Remember, you can also donate blood or bone marrow during your lifetime. Contact your local chapter of the American Red Cross for details on where you can donate or sign up.

Myth. I'm under age 18. I'm too young to make this decision.

Reality. That's true, in a legal sense. But your parents can make this decision. You can express to your parents your wish to donate, and your parents might give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

Myth. Organ donation is against my religion.

Reality. Organ donation is consistent with the beliefs of all larger religious denominations in the United States. This includes Catholicism, Protestantism and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy.

Ultimately, it is your choice if you wish to be an organ donor and your choice should be respected by all. We just ask that you educate yourself on the facts about organ donation since it is not only your life that will be effected but, that of your family, friends, and the people who are desperately waiting for that living saving/altering transplant miracle.

(Reference: Organ donation: Don't let myths stand in your way. Mayo Clinic. Retrieved April 5, 2006, from: http://www.mayoclinic.com/health/organ-donation/FL00077.)

Tuesday, April 04, 2006

Losing Our Transplant Surgeon

Every 3 months, Greg is scheduled for a number of tests at his transplant hospital. This is normal for a post lung transplant patient as patients go through such tests as: Pulmonary Function Tests (PFT), chest x-ray, blood tests, and transplant clinic physical. As it turns out, the hospital is very pleased with how well he is doing and his lung function test was the highest that they have been able to record - Greg has 80% lung function. Not too shabby for someone who had 10% lung function back in October 2004!

Of course, we will take this type of good news without even thinking twice about it and we have! We were caught off guard, however, when we were told that Greg's transplant surgeon, Dr. Robert Love, would be leaving UW-Madison and is relocating down at the Loyola Hospital in Illinois. Great for people down south of us but we don't like the idea of losing our surgeon.

Of course, Greg says that it just means we are free to move out of state now. No! We are not following the doctor to Illinois! (laugh) But there are some great transplant hospitals in North Carolina and Florida... And the weather isn't too bad either. Definitely gives us some food for thought given his new lease on life.

Saturday, April 01, 2006

Men, Women, and Cystic Fibrosis (CF)

I say this in all seriousness. Men are bad news around cf. Many, many men can't stand the heat and so it's divorce time.
stated by F. Wilson 3/30/06 on Cystic Fibrosis mailing list

Although we should never make generalizations based on gender, there are quite a number of people that fit the generalized statement about men with CF. Some of those people are women! :)

Yes, you heard me right! Actually it is not a gender issue as relationships are a lot of work to begin with. Here you are, two separate people trying to see past the differences and love the person that lies within. Statistics will show you that it is not so easy to be in a relationship these days, let alone stay married for a couple of years. People fight of over the stupidest of things and get divorced way too easily these days.

Then you add on a "terminal" illness like CF. No, "terminal" is not my word for it and therefore I have added quotes. :) But, nonetheless, it is a difficult disease and not so easy for a "healthy" person to deal with at times. The roller coaster ride of good/bad health drives those of us that are in the relationship, and "healthy", to go insane. Even though the person with CF cannot leave the relationship and escape the disease, the "healthy" one can. There is an easy fix for the "healthy" person - it's called the door!

So, let's put this together, shall we? You have the fact that relationships are a lot of work because of the differences in gender or just being different people (cause who would want to be married to themselves??) and then you add a mound of Cystic Fibrosis and what do you get? The answer is simple - a pickle of a deal and a great number of "healthy" people that walk away from the relationship.

Now, for those of us that stay - I will admit that we are truly strong people. Sometimes we don't feel much strength but in order to make it work with CF, you have to be a strong person and not many people are well suited for the job. That is not to say that a person needs to be strong to be in a relationship with a person, minus the disease. The way I look at it, a relationship with someone that has CF is called the "CF Triangle". There is me, you, and CF. It is both of us against the disease - it is separate entity. But, most people don't have the strength to fight it with the CF person, let alone when the CF person gets sick and the "healthy" person needs to be strong for both people.

I have to admit that I give credit to those that walk away from the relationship in the early stages. This shows that they know themselves enough to know that they will not be able to be the person that someone with CF needs - on the good and the bad days. This allows room for the person with CF to find that particular person that is strong enough to be that pillar of strength during the roughest of times. It gives them a chance to truly be loved for who they are by a person that is willing to pick up that sword and fight for that other person with everything they have!

Yes, I will admit that I am one of the strongest people I know because of what I have had to do to keep Greg alive at times. From 8 months on a vent at home while I was working full-time, being his full-time nurse (no home health care), going for a MBA, and handling the normal stuff on a daily basis - I have helped Greg find in himself the strength to fight against the disease. I have been wife, mentor, lover, best friend, soul mate, and sergeant all in one. Yes, I said sergeant because I pushed him when he thought he could not go on. I knew he had it in him... He just needed someone to help him find that strength. :) And, God put me on this Earth to be that person for him, just as He has put Greg on this Earth to save my life in other ways.

So, that is how I feel about the subject of gender, relationships, and CF - take it or leave it. ;)