Admist a Wintery Dream

May day off, of course, did not go as planned. What did I plan? Absolutely nothing! (smile) Given that Greg was just formally released from the hospital area yesterday, there was a lot to do.When an emergency hits, you never realize how much stuff is pushed aside. Yes, we were well prepared and via my laptop, I was still able to pay bills, work, and do other small daily chores. We also had wonderful family members that helped by taking in the mail and newspapers, watching the house, cleaning out our fridge, and they even went as far as to wash our leftover dishes! We can only imagine what it would have been like had we not had that help. For that we are grateful!Now, as for Greg and his daily progress. Well, today we drove to the CF clinic and had his port de-accessed. Between this and the staples/stitches being taken out, Greg can finally take a real shower tomorrow for the first time since the transplant. Now, I don't want to overlook the fact that Greg was a regular little celebrity at the clinic today. As a flurry of people came in to see him, their smiles bigger than every, you can only imagine what was going through their minds. A man, that some have known since he was 16 years old, who was very ill only 3 weeks ago (when they last saw him), was now in front of them and PINK! Greg's CF doctor, Dr. Biller, even popped in her head to get a quick meeting with him and even though she wore a mask (because she had a slight cold), you could not mistake the huge smile under her mask. She had been treating Greg since he was 16 and only 2 years ago she was unsure if he would live through his fight with a nasty pneumonia. As soon as she stepped in, I bounced in my chair and said "Look! His fingers and toes are pink!", while grabbing his hand to show her. It was as though I were showing off the brand new Strawberry Shortcake bike I had gotten for Christmas to a group of friends. (Okay, stop laughing! I did have a Strawberry Shortcake bike once and I am proud of it! *laugh*)Greg did get tired pretty fast today, but, after the weekend we had and the whole day yesterday, even I was tired - and I didn't go through a life-changing operation! But not to fret - Greg is doing well now and even though his progress now has slowed some, it has not stopped. As long as each day he is getting better and gets healthier, we will take it. Heck, with as long as we waited for this - as long as Greg continues to get healthier each day, we will strive on!

Who wants news???

Didn't I tell you that we would have a lot to share tonight? (smile) Greg's words just a moment ago were: "We are both so exhausted." This is after a long day at the UW-Madison hospital for labs, rehab, and clinic. Here was our day and the outcome:7:00am - Blood labs - checking Tacrolimus and other drugs levels - Tacrolimus level is "9", which is a little low but Greg is on a very low dose so we are not worried - Creatinine (kidney functions) were a bit on the high side at "1.9" and again they are just going to keep an eye on it - White blood cell count is around "12.1" which is lower than last week at "13" so they are very happy - Everything else was fine.9:30am - Rehab - Greg did over 20 minutes on the exercise bike without breaking a sweat or going below a 95% oxygen saturation level (on room oxygen)!! Then he did some free weights but was limited because of his staples and stitches.2:20pm - Clinic - Greg is now 145lbs, his blood pressure/pulse/temperature are all good, the 6-minute walk went well with him doing over 1,200 feet in 6-minutes with his oxygen saturation staying at 95% (this is 200 more feet then he was able to do last week), and all medications are staying the same but have been moved around so instead of him doing meds 8 times a day - he is now doing them 4 times a day. Laslty - Greg got his staples and stitches finally removed!6:00pm - Picked up 17 30-day prescriptions for Greg while we are waiting for them to be filled by mail order pharmacy. (You should have seen the size of the box they put everything in!)Then, of course, there was the 2-hour drive there and another 2-hours back. So, needless to say, we are very tired. It has been a good day though because we were able to speak with the respiratory therapist about what we should expect on Greg's spirometry (lung function tests) from now and 6-months out. She said Greg is doing very well. Also, we met with Ann Marie (transplant coordinator) and Dr. Love (Greg's lung surgeon) who expressed how well Greg is doing as well. Greg is just over 2 weeks post transplant and at this point, there is no rejection and although we need to move some medications around to find the right "potion", it is well worth it! Oh! Greg's biopsy came back for cultures and we found that Greg has no signs of MRSA! (insert BIG happy dance here)Okay, I think that is enough of a novel tonight. Tomorrow I have taken a real vacation day from work to recuperate a little and find my "center" again. Don't worry though- I am sure there will be a post from me on here anyway. (wink)May health and happiness find you wherever you go!

My Apologies

Friends and family - my apologies. I wrote a post this morning and then one again just before this and yet it seems the blog is having some problems again. With that, I will hold my witty comments and updates until this morning. (As I am not even sure this post will make it through)Please know that Greg is doing better every day. His lung functions are still up and down but we were told this is to be expected when first released from the hospital. Not to worry though, these numbers have not gotten low enough to meet the 10% decline rate that the hospital told us to watch for. It is kind of like having an "off" or "bad" day for us "healthy" people.I will have a good amount of updates to share tomorrow night as we will be leaving for Madison in the morning for labs, rehab, and a clinic appointment. We ask that you continue to keep Greg in your prayers. Yes, he is doing very well but this is a critical time in his rehabilitation.God Bless!

Learning curve

With each day comes a new understanding of the new life Greg has before him. We were well aware of the number of medications that he would be on and the new regiment. As Greg puts it, having a lung transplant is like trading one disease for another. This is solely based on the new regiment of medications and that is not to say that the lung transplant is not worth having - it is worth having as it allows the once terminal person to live and live well.As I said before, the learning curve is great because now you have to learn not only when to take your medications and perform your treatments but you have to learn all the possible side effects and what not to take with the medications. We knew that his Prednisone would cause diabetes for a while, at least until the dosage came down to under 20mg but today we found out that another medication, called Tacrolimus (Prograf) can also cause a form of diabetes. So, armed with new information, Greg and I plan on speaking with the transplant team tomorrow, during clinic, to ask them about this new information.Some has said to me that I should go into the medical field now because of all the new knowledge I have obtained over the last 9 years of this relationship. I have to admit that I have thought about it but right now I only have one patient, who needs me, and I need him. Until that patient is able to run a marathon, my medical skills will stay limited to him. Just call me a "Greg Specialist". (wink)

He didn't think about it

Throughout this weekend, Greg and I have not only enjoyed our time at home and caught up on some chores, but we were able to spend a great deal of time together. Tonight, I looked at him and smiled. Of course, he smiled back but since I continued to look at him and smile, his next response was: "What?" I laughed and took his hand in mine."Have you ever thought about the new lungs?", I asked. He let out a small chuckle and said: "No, I don't think about it." Of course, me being the person I am, I continued to ask the same question in different ways. Finally, I answered for him. "You try not to think about the new lungs you have because it kind of feels strange to know the lungs you now have were in someone else a month ago." He gave me one of those "Greg looks" and I knew I hit the nail on the head.Let me explain why I asked. It is not because I am nosy or anything - it is just that God made me naturally inquisitive to understand how other people feel. I wanted to know what it was like - did he feel any different - had he ever thought about it - where was his mindset? Now, I have heard that some people become depressed thinking that someone died so that they can live and I knew already that wasn't even on Greg's mind. I guess, just as I have said before to other people, you never truly know what a person feels or goes through until you walk a mile in their shoes. Since that is impossible, I guess I can only sum up Greg's thoughts in those actions that took place this weekend.Yesterday, my wonderful husband turned to me in our kitchen and said "Watch!". He, in turn, made like a Choo-Choo train out one end of our kitchen and around to the other entrance to our kitchen. The smile on his face was larger than anything I had ever seen! Now, you are wondering what in the world this is all about. Well my friends, since we bought the house, Greg has never been able to come full circle around our kitchen for the oxygen tube would not allow it. Whatever way Greg came into the kitchen, he would need to go back out of because of his "oxygen lifeline". Now, he is free of it and can finally move AROUND his house without getting hung up on anything.To be a prisoner in your own home due to a 25 foot oxygen tube and to finally break free of that bond. There are no words to describe it! With that, my question no longer needs to be asked.

Simple Things

As the holidays roll around, we realize that it is the simple things in life that are the most important. Greg's holiday miracle proves how important life is and how unimportant material items are. With every breath Greg takes, I visualize the breath giving each of the cells in his body the oxygen that it needs in order to live and grow. I have already said how amazing the whole transplant experience is but, again, until you walk in another man's shoes, you will never truly understand. Granted, I would never want any of you to be in our shoes and need a transplant to begin with - I just hope that as the holidays come, so does the realization that material items such as new cars, big screen televisions, and jewelry are not so important.With that said, Greg and I hope and pray that everyone realizes the true meaning of the holiday and how important it is to celebrate it with their family and those they love. Yes, we have been blessed but our greatest blessing came from a family we have yet to meet - the donor and his family. They have illustrated the true meaning of the holidays - and we pray that everyone keeps this in mind - no matter how stressful the holidays make become.

Rainy day in Milwaukee

Yes, we left a rainy day in Madison and traded it for a rainy day in Milwaukee. And you know what??? It doesn't bother us one bit because we are HOME!!Even though Greg did not sleep as well as usual at home, he did sleep better than in the hotel. His massive amount of staples and 4 chest tube stitches do not allow the man to sleep in his normal position - on his side. So, his back has become sore and he wakes in the middle of the night, catching himself trying to turn on his side, but, alas, he cannot turn. At this time, he has now been able to find some solace on the couch and as long as he gets as much rest as possible, then his body will continue to heal. Had we stayed in the hotel, he would have been worse as there is no place of comfort there.As most know, people are better able to heal in an atmosphere in which they are most comfortable. We are happy that the hospital understood this as well or Greg may have been extremely sleep deprived come Monday morning. As long as we continue with his care at home; watch his incisions for any leaking, discoloration, or puss; take medications on schedules; do nebulized treatments on schedule; and perform his vitals and spirometry on schedule; his health will continue to rise.Now it is time for me to part as our cupboards are barren and as we all know, Greg NEEDS food. (laugh)

My cow for a kingdom!

Okay, so we don't own a cow but since we are in Wisconsin, I thought it only fitting. (laugh) The kingdom though, well, that we have. Believe it or not, Greg and I are free! We called up the hospital and asked for permission to go home for the weekend and they actually granted our request! So, boys and girls, we are home!!! This is, indeed, our kingdom and had we had a cow, we would have gladly traded it for our kingdom! (laugh)It was around 3:30PM at the hotel when Greg and I noticed how extremely bored we were. Normally, we would be out and about shopping and exploring the town. Given that this is Thanksgiving weekend, umm, well, all the nuts were out driving and in the stores. With that, we started to look at what we could do this weekend and noticed that our time would have been spent mainly in the hotel. Argh! (laugh) Upon staring at the same wall for the 100th time, I looked at Greg and said: "Why don't we go home? We are both tired, can't sleep on this bed and couch anymore, and there is nothing to do in the city during this holiday weekend." We talked about it and called the transplant coordinator. Of course, we were given a list of things that we need to pay special attention to in order to denote rejection but since we have been very anal retentive in Greg's care for the last 2 years (since he almost passed with pneumonia Thanksgiving 2002), they felt comfortable with granting our request.So, here I am - sitting on my couch and Greg laying down on his couch (we have a sectional) - thanking God for every moment and thanking UW-Madison for everything they have done for us. Yes, we still have to hotel room through Monday but we kept it reserved just in case. Also, Greg needs the hotel room on Monday between the 7am labs, 9:30am rehab, and 2:20pm clinic appointments in order to do some meds, rest, and eat.Our way of looking at things is that it never hurts to ask - worse case, we will be told "no". We are highly thankful we asked - especially Greg, who has now fallen into a deep and restful sleep for the first time since his discharge on Monday - on HIS couch. (smile)

Rainy Day

Although some may be put off by the rain, I have often seen the rain differently. The rain, to me, washes everything clean and makes a new beginning: it nourishes the Earth and provides substance for life. Needless to say, it is one rainy day in Madison, WI.With this new life Greg has been given, we still live each day in amazement. His lung functions are steadily increasing and his stamina is building. Yes, he is still in some pain at times and the staples/stitches are a bit restricting but Greg is able to do things each day that he could not do the prior day. For instance, today Greg sat on the couch here in our studio suite at the hotel. Just looking at the couch, you can see how uncomfortable it is but nonetheless, Greg was able to sit on it today and read the newspaper with little discomfort.I have to admit that I still watch his chest rise and fall as he sleeps and just stare in awe of the miracle. Even during rehab today, Greg did 20 minutes on the exercise bike and his oxygen saturation never went below 95%. This milestone has the hospital agreeing that Greg has met the criteria for full discharge. Does this mean that we get to go home today? Alas, no. It just means that he is way ahead of schedule once again and that it was worth the 3.5 years for these great lungs.Someone once said that everything is in God's time - it is just that our time and God's time just never seem to be the same. Well, just as God provides the rain to nourish the Earth, he provides that which his children need most - in Greg's case - a great set of lungs!In God, all things are possible!

Breakfast at Madison

There isn't much to tell, really. The night was uneventful and we truly miss our bed. We continue to repeat our new mantra: "Just a few more days." (laugh) Don't get me wrong, this hotel is very nice and comes with a great deal of amenities - it is just that it is not "home". We long for the comfort of our own home; where we are masters of our own domain.I do have to laugh though. Going home yesterday was an eye-opener. As we walked into the cold house (55 degrees), we noticed that we are highly under-decorated! The white walks screamed "hospital" and the echo that filled the air was nothing short of a voice confirming the reality of the house's lacking. Personal touches are definitely a necessity. For this is the home that we are starting our new lives in - the home which will grow with Greg's new lungs and our future.And what a future it will be! Granted, we are all in charge of plotting our course for the future but more just follow the current and hardly ever make waves of our own. Oh - wait - what is that? Do I see a ripple coming from Greg's direction? (wink)

Gobble, Gobble

Surprise, surprise, surprise! Greg and I went to Milwaukee (back home) to catch up on some things and also surprise Greg's family for Thanksgiving. Yes, I have been holding that secret for some time now but since Greg's family reads this blog, I could not let the cat out of the bag. (Even though the cat was trying to claw its way out and was hissing like a wild animal, alas, I could not - I gave my word to my love)Everything went well and although Greg's body is only 13 days post-transplant, he was able to tolerate the ride very well and enjoyed himself as well. It was great to be surrounded by family but, well, Greg and I felt at a loss at times. Don't get me wrong, we had a great time. It was just that it seemed that the family had shrunk. In the last year, Greg has lost two uncles and his grandmother was not well today. Yes, that is just 3 people but those 3 people were predominant in this family and I, for one, missed uncle Bud's laughter. I know that Mrs. Uncle Bud (Auntie Vicki) will read this post at some time and I do not mean to upset. It is not that we don't feel him around us because we know he is always with Greg - it is just that Greg had so wanted to share this with him - in person. But, had uncle Bud not been an angel, he could not always be around Greg; protecting him and guiding him.But I digress - the day was about giving thanks and as I have stated before, we have a great deal to be thankful for. Unfortunately, it usually takes something life threatening in order to make you more aware of what you already have. For us, we are not lacking any of the vital things in our lives - we have a roof over our heads, food in our home, health insurance through a great job, health, family, friends, and let us not forget: love, hope, faith, and a God who cherishes us . . . His children.Happy Thanksgiving and God Bless You All!

Difficult Night

Waking up at the crack of dawn is not an easy task. This morning, it proved to be even more difficult, even with the Elvis Presley signing "Blue Christmas" through the alarm clock.Greg had his first difficult night. We aren't sure if his body is screaming from everything he did yesterday or he just slept in the wrong position last night. Either way, a part of his incision is hurting him on the upper left side and his left ankle as well. The ankle I am not too concerned about as it is something that can be easily remedied. It is the incision that I am cautious about due to obvious reasons. Greg isn't concerned - just very tired.So, I gave him a pain killer for his incision pain and he is sleeping once again. We have waited 9 years to work out together; a few more hours is not going to kill us. Depending on how he feels, we will either work out later this morning or just wait until Saturday morning (since he has labs, IV, and rehab tomorrow morning).This is not to say that we are no thankful in the least bit. There are always ups and downs and if this is as bad as the downs get, we will gladly take them. For now, we will sit back and enjoy our Thanksgiving for two years ago, Greg almost passed on this very day after a run in with pneumonia. This Thanksgiving day is definitely a day to celebrate!

An addition to our collection

Walgreen's has become a second home to us. Wait! Make that a third home given that the hotel is actually our second home at this moment. As there was a small amount of inflammation in one of the bronchs, Dr. Love put Greg on yet another drug - Zithromax (250mg once a day for 7 days and then one every other day until he finished his bottle). So, I think that makes 15 drugs Greg is currently on and a few should dwindle in the next few months. But, again, we have been at Walgreen's a few times since we left the hospital . . . I am sure Walgreen's doesn't mind the extra revenue. (smile) Thank goodness for insurance!Shall I use the word "amazed" again? Greg walked around an entire mall, even after rehab, without getting tired once. Okay, his legs were a bit tired as they weren't used much for a week but his lungs and stamina were great! Heck, I was more tired than he was. Then, we went out to eat and you should have seen all the food he ate! Normally, I would get nervous but he was eating like his old self again . . . Except he was trying new foods. If you know Greg, he usually sticks to his "usuals", but today he even tried my Tiramisu! You don't understand - I have been trying to get him to try it for over 9 years now and he always turned his nose up to the idea! So, I guess you want to know what he thinks of it, eh? He likes it a lot! Go figure!Well it is time for me to get ready for bed. Greg has requested a date in the morning - just the two of us - all cozy together - on a couple of pieces of fitness equipment. (laugh) Ciao!

Silver Lining

There has been so much of a silver lining surrounding us that I am awaiting the black cloud. Unfortunately, this way of looking at life was taught by my father and grandmother and it is difficult to unlearn. As I have said before, there is no need to worry and it is going to take a while to get Greg's medications just right for the long-haul. With that said, I shall share Greg's test results given today:
Greg road the exercise bike for 15 minutes in rehab today - just 12 days post-transplant and the hospital is happy, happy, happy.
Biopsy results are back from yesterday's bronch which shows "0" - which is NO rejection! (insert happy dance here)
Some of the results of this morning's labs are back - his white blood cell count (WBC) is a little higher than before he left the hospital (~16) and they are going to keep an eye on it. His kidneys are functioning great as well as the rest of the numbers. His magnesium is a little lower than they like but if they increase the magnesium, they will get more magnesium expelled from his body due to increase bowel movements.
All results are being shared with Dr. Biller (Greg's CF doctor in Milwaukee) as well as Dr. Love. If Dr. Love has any concerns, meds can be changed or Greg could have another lab workup on Friday, instead of us waiting until Monday. We will keep you posted.
On a side note - it seems that the public relations department from the hospital would like to write a news article about us and Greg's transplant. We are shocked! Ann Marie (our transplant coordinator) just needed our permission and they will be contacting us at home next week. Wow!
So, that is it for now as I am just finishing up some work, Greg's has a couple of meds to take, and then we are out the door to the mall. (big smile) Not sure if it is the memory cells in his new lungs but Greg has a shopping itch to scratch (he normally hates shopping) and I am not going to complain! (laugh)
If you ever catch yourself looking for that black cloud, you can easy miss the silver lining!

Stares in amazement

Up early to get lab work done around 7am, before one of his anti-rejection drugs can be taken but before the man can eat. And while I am getting ready, I catch him once again and cannot help but laugh. Granted, this is the type of man that will go around feeling the texture and outline of new buildings he encounters (that is the architect in him) but it is as though he were a child, encountering his first butterfly. The amazement and awe of the moment, captured in his eyes and smile, is all that can be seen. What would make him act in such a way? He was staring at his fingertips once again.It is difficult to know what must be going through his head in that moment. The years that his fingertips and tips of his toes have been lacking oxygen had caused, what the doctors call, "extreme clubbing". When we first met, his fingertips often reminded me when the children in my family used to put the pitted black olives on their fingertips to eat them only as a child can eat them. The rough shape of that image could be easily seen in his fingertips pre-transplant, but now, the image can no longer be seen in person and my mind finds it difficult to remember what they used to look like.But, Greg remembers quite well. He just sits there, in amazement, at one of the small miracles that resulted from a larger miracle. His new lungs are now feeding oxygen to the one deprived extremities of his body, nourishing the cells, blood vessels, skin, and nails; turning the blue-purple nails to a healthy shade of pink. When I asked Greg what he was doing, he looked up at me with a smile on his face and said "They are still pink". Yes, my love, thanks to God, they ARE still pink! (big smile)

Walking & Ribs

It is not as you may think - walking and ribs are totally separate items. As Greg just said "walking, walking, and more walking". First, there was the bronch this morning, tonight there was dinner at Houlihan's and then we stopped at a small shop that we thought was a candy/nuts shop but it turns out it was more like a dining linens. Either way, Greg walked all around and although his ankles are sore from not being used for a while, he did so well tonight. Oh! And then there was walking around in Walgreens to find unsalted cashews (high protein to repair tissues and muscles, high fat for CF, and no salt so Greg won't gain unnecessary water weight), while we were getting another med for his liver.Now for the ribs . . . are you ready for this??? Greg is back! We went to Houlihan's for dinner and he had a half rack of extra meaty ribs (again, meat is great for protein to rebuild muscles and tissue from the transplant) with some french fries (without the salty seasoning). Man, did he just down it all! He loved every bit of it. The great part is that we were following his transplant guidelines - watched the salt, watched the sugar, had loads of protein, and Greg maintained his CF portion of his diet (high fat, high calorie). Oh! And I forgot the bowl of French Onion Soup that Greg had as well - oh, the look of pure joy on his face! He enjoyed every second of that meal!It is the simplest things in life that bring the greatest joy! God Bless!

Bronch Results

Okay, I won't post the pictures they gave us from Greg's bronch today but everything went great. The lungs are pink and healthy, the stoma (connection site) is healing well, they went ahead and washed out any "muck" down there, and lastly, they took a biopsy. All of these things are either normal or positive so there is no alarming news to tell anyone. Just great news - by the grace of God, he is doing wonderfully!They also put him on a medication to protect his liver and decrease his Prednisone from 40mg a day to 25mg a day. The next week is filled with a flurry of things to do: Wednesday - Labs & Rehab, Friday - IV Treatment (done every two weeks, 6 times, to fight infection) & Rehab, Monday - Labs & Clinic, and then (can I get a drum roll please??) we get to go home straight from the clinic Monday afternoon! Patience my dear, patience! (laugh)As I sit here writing and listening to Greg snore . . . err . . . sleep-off the meds he was given for the bronch, I can't help but be amazed. I watch him sleep, his chest rising and falling steadily, and can't help but stare in amazement. It is just amazing how those lungs are his own but yet a gift from another human being. Those lungs were not given by God upon Greg's conception but, instead, a gift from God, given through another human being. How amazing how such a gift can change the lives of those that receive it . . . this, my friends . . . is just the beginning!

Not fully awake

My body finally decided to let its guard down last night and for the first time, I was exhausted. After talking to Greg about it, we decided that my body finally let go of the adrenaline rush and with that, all my energy disappeared. Sleep? Yes, I did sleep but only vaguely, but nonetheless, I did sleep and so did Greg. We are both up this early because I have to put hours in at work and Greg is no longer comfortable in one position (on his back). Luckily, we both feel well rested to get ourselves ready for the bronch today. That is at 9am and they say that it will take 1 hour after the bronch before Greg can leave the hospital as the sedative has to wear off.I know this is not one of my fun loving and fully energetic posts but that will change with time. Now, we are at stage two of this new life and slowly getting used to living but not living. Why? Well, if we were allowed to go home, we could at least settle into our new lives in an environment that will foster us settling in. When you are in the hotel, everything is everywhere and by the time we settle in, it will be time to go home. (laugh) Figure! But, being as anal retentive as I am, I just wish we were home so we can stop living out of bags. (laugh)Again, we are not ungrateful at all and still feel that every second is worth the gift we were given!

Home away from home

Greg was released today from the shiny white prison! It took a long time, per usual, to try and get everything squared away at the hospital. The funny, but not so funny part, is that the nurses stated that they were told he was going to be released on Tuesday and not Monday. Normally I would believe them but this time I don't. You know why? Because both Greg and I, on numerous occasions, told them this as well. But, alas, we have left that place - at least until tomorrow morning. (laugh)Greg is totally off oxygen, is on 1 home IV treatment for the MRSA (1 week left), a number of pills, nubulizer (inhaler treatments), and diabetes control but it is all worth it. Actually, it sounds like a lot but if you really think about it, this is pretty much the way it was pre-transplant. Does this mean we are in the same situation? No way! Not by a long shot! His lung function has already doubled, he has no oxygen, he is able to breathe, and over time the number of medications and treatments he has to do will decrease. It will take a couple of months for us to get settled into our true regiment but for now, we are truly grateful! Yes, we aren't home, and yes, we have to go back to the hospital tomorrow (bronch), Wednesday (labs and rehab), Friday (rehab), and Monday (labs and clinic), but after that . . . Home we go!!!What is one more week? As long as we are out of the hospital, we are one step closer to freedom then we were before the transplant. What a miracle!

Today's the Day

The day has finally come where my wonderful husband is to be released from the hospital. There are a flood of emotions that we are going through right now. Originally, before we realized he was dehydrated and low on calories yesterday, we were nervous about this day and whether or not we will be able to handle everything that needs to be done. Since Greg started to feel better yesterday and look/act more like his old self, the nervousness has passed and I find myself curious of what this new life will be like. Granted, we are not on our way home at this point but we will be alone for the first time since his miracle - just me, him, and his new lungs.We laughed yesterday as I told him that I may poke him every hour just to make sure he is still breathing while he sleeps. (laugh) It will be strange for me because all I have ever known is the coughing and hearing him breathe all the time. I have caught myself, in the hospital, looking at his chest closely as he slept, to make sure he was still breathing. Even though I have a great deal of medical knowledge, it truly escapes me how someone else's lungs can be put in his body and work so well. It is strange because I have been an organ donor since I was 14 years old, before I met Greg, yet I never realized what a miracle it truly is. I guess it is not for me to understand but to be thankful and praise God for the miracle that he has blessed us with.Now is the time for me to ask you all - are you an organ donor? If not, why not? When you leave this world, wouldn't you want to save this lives of over 55 people and leave a legacy of a hero? What good will your organs do you when you are no longer part of this world? I am sure that when we finally get to contact the organ donor's family, they will find peace in knowing that their loved one's lungs are giving someone a chance to breathe in this world and that the donor truly is not gone from this world. I will grant you that this will not fully take away the grief of losing this person but the peace found in the miracle of organ donation make help them find even the smallest form of solace in this world.We pray that you will not be an organ donor any time in the near future but we do pray that when the time does come, you share your gift of life with someone like Greg.

Water does the body good

It is amazing to us how a hospital can give you a ton of drugs to make everything better but not supply you with drinking water after they cut off your IV fluids. Hmm. Well, it seems that this is exactly what happened to Greg and for the last couple of days, he has been getting more and more dehydrated. Last night he even asked his nurse to allow the IV to run a little longer after his antibiotics were done, with just sodium chloride. This was because he was sweating a great deal from this inflatable leg massagers and she told him "no - just take a few sips of water and you will be fine". Hmm. Since I get dehydrated easily, I witnessed my signs of dehydration in Greg and my mother-in-law gave him her unopened bottle of water. In an hour, Greg drank almost the entire 24 ounce bottle of water and within another hour, his face brightened up and he started to feel better. Hmm. What do we say to this type of illogical thinking from a nurse? Luckily, they didn't try to give him yet another pill to "fix" him.On the good side of the day - the last chest tube was pulled and between that and the water, oh, and the fact that I ran out to get him McDonald's (it was allowed), he was his old self again shortly after lunch! It was amazing how sick he looked in the morning, due to lack of water and lack of nutrition (cause we all know how nasty hospital food is), and how perky, bright, energetic, and fun-loving he was in the afternoon. Even more amazing is that now he is a little uncomfortable but not in any pain at all! Wow!We are still being told that tomorrow afternoon is Greg's discharge and to the hotel we go! It is amazing that only 10 days from his new lease on life began, he is being released from the hospital to start this new life. From a difficult surgery comes the ability to finally breathe easy. Thank you, Lord!

This Morning

I woke this morning wondering how Greg slept. Yesterday, I spoke with Dr. Zink about how often the nurses come in to take Greg's vital signs and wake him each time. The poor man has not had much of a chance to sleep and with everything his body has gone through, his body needs the sleep in order to repair itself. Why don't the hospitals understand this concept?Dr. Zink understood all too well and put an order in Greg's file that Greg was not to be woken between the hours of 11pm and 5am for vitals. Well, 6 hours of undisturbed sleep is better than none, right? I just hope that 6 hours of sleep helped him finally rest so that today, when the final chest tube is removed and we start working his rehab a little harder, he will be more a willing participant.It is hard to watch your loved one go through this and not be able to take their pain away or make them well. I have learned over the years that both of those are God's job and mine is just to be there for Greg and facilitate anything that needs to be done. Yes, the nurses are nice but some of them you can just tell don't care for me very much. That is unfortunate for them since I think I am a very likeable person - just that when it comes to Greg, don't tread on us! (laugh)It is usually only those nurses that have had their own family members go through such difficult times in the hospital, when they learn what bedside manner is. We shall see how the day progresses but one thing is for sure, Greg will be out of that room quite frequently to build up his endurance and find some solace in escaping some of those nurses. (smile)

One is a lonely number

As of this afternoon, there is just one lonely chest tube remaining! It took a while for Greg to get used to feeling pressure inside of his chest again now that the right side has no chest tubes at all, but once he did, he was feeling great! Hopefully after the last chest tube is removed tomorrow, he will have more stamina to get things done. Unfortunately, I have had to push as little more than I would have liked but things are progressing well.Greg is still in a good amount of pain and sore - rightfully so after everything he has been through. So, today I needed to be a little more of a coach (or drill sergeant) to get him motivated to do some things. Of course, I never push him to do anything that would hurt him but sometimes we all need a little motivation, right? How much fun could it really be for someone to tell you to do stretches when you are uncomfortable?? We did work on finding the right dosage of pain medication and besides a slight constipation effects, the pain meds are working well. So, now that the pain is under control (and the side effect remedied), once the chest tube is out tomorrow, we are going to be working a little harder - together!Otherwise though, today was nothing out of the ordinary. It is difficult though to some that Greg is not progressing as fast as he did in the beginning. I have tried to convey the amount of extensive damage that his body has gone through and how, now that the "hard" part is over, it is going to be a long and steady healing process from here on in. We just have to take it one day at a time - no one said the man would be able to run marathons by the time he left the hospital.Oh! One thing that I did forget to mention. It may not make sense to some but to those that have clubbed fingers or toes (http://www.listermedicalcentre.com/clubbing.htm) but, the skin around the fingertips has gotten softer and moves now. On top of that, the clubbing has already started to recede as my mother-in-law and I noticed that you can see where his fingernails used to embed into the fingertip and now do not. It is difficult to explain but the clubbing has already started to go away after just 1 week. Wow! Who knows what week 2 will bring! (smile)

Dreams

The last week has been a non-stop dreaming fest from which I normally would not want to wake. In these dreams, Greg and I are traveling across the country - without the leash formally known as oxygen. We sing, dance, laugh, and kiss until sunrise: without Greg getting out of breath once. In the past, I would wake from such dreams with a sense of longing and despair. Now, I wake from the dreams with anticipation and joy - for the dreams are coming closer each day to becoming a reality.How can I express what the last 3 1/2 years of our lives has been. Hospitals, pain, agony, medical equipment, medical refills, insurance claims, feeding my husband through a tube in his stomach, changing the inner lining of his trach tube and making him cough up yet another lung, Greg watching people be "normal" as he sits on the side and longs to play... how do I describe it? How do I describe the longing he has had to go back to work and get off of government disability?Now, today, because of the grace of God, we are able to dream again - and we are dreaming big! Although we have received many wonderful gifts, cards, and well wishes, there was one package we received yesterday that spoke to us. My aunt and uncle sent Greg a get well card. In the envelope, was a small Atlas - showing us that we are now free to travel without the boundaries of CF - that all boundaries that were once dividing us from truly "living" were broken down - that we can now explore the wondrous creations that God has put on this Earth that are more than 2 miles away from the hospital in Madison. It acts as a significant reminder that although we have a new way of living with these new lungs - the only restrictions that lay before us are those that we make for ourselves. Thank you!

Is it 9pm yet???

Over the last few days, my body has decided to tell me a thing or two. As my normal healthy eating habits flew out the window, my body has decided to shut down (to a point) and it has finally told me that it is run down and cannot continue to eat foods it is not used to, sleep only a few hours every night, continue to talk non-stop to give verbal updates, etc., etc. So, tonight Greg kicked me out and made me pick up a real meal on the way back to the hotel and buy a certain supplement that I used to take twice a day but left at home. I could easily ignore my body but when you add in a man with new lungs who is feeling pretty good, it is like fighting a losing battle. (laugh)So, tonight I am not calling Greg and therefore can only give you the information I already know.Greg is down to 2 chest tubes and functioning even better. He had an "off" days as far as his lung function test (spirometry) but that is due to the fact that he is moving more and the abdominal muscles are sore. The doctors said it is all normal and his lungs are actually in great shape. "Part of the normal healing process" when you take into account how much he has been through. One more chest tube should be pulled tomorrow and then his last chest tube should be pulled Sunday. He is also taking care of himself (washing, hygiene, getting his stuff), not on oxygen at all, walking greater distances without any help (except for carrying the chest tube contraption) up to 4 times a day, handling his own medications, doesn't have to do IPV anymore (http://www.fsma.org/ipv_01.shtml), and is speaking better than ever. Now, due to the fact that there are a number of lung pre-transplant patients that read these updates, I will share with you Greg's medication list (which may change by Monday):
Pancrease MT-20 (1 capsule with Tacrolimus, 6 with meals, 4 with snacks)
Tacrolimus CP 1MG (2 MG = 2 capsules in the morning and 1 MG at night)
Acetylcysteine Inh 20% 4ML Vial (4 milliliter Inh three times daily)
Albuterol MDI 0.09MG/INH 17MG (2 puff INH 4 times daily)
Amphotericin B INH (5 MG = 1 ML INH twice daily)
Dornase Nebulize 2.5 ML (once daily)
Ganciclovir CP 500MG (1000 = 2 capsules 3 times daily)
Itraconazole CP 100MG (200 MG = 2 capsule daily each morning)
Prednisone TB 5MG (20 MG = 4 tablets twice daily)
Ranitidine tablet 150MG (150 = 1 tablet twice daily)
Tobramycin INH (80 MG = 2 ML INH three times daily)
Azathioprine TB 50MG (150 MG = 3 tablets daily at 1200)
Digoxin TB 250MCG (250 MCG = 1 tablet daily at 1200)
Lastly, Greg is now only on Tylenol for the pain as the other pain killers make him sleeping and the more he sleeps, the greater the possibility for muscle atrophy (http://www.nlm.nih.gov/medlineplus/ency/article/003188.htm). Otherwise, Greg is still doing well and every day he is getting stronger. It just goes to show the power of prayer. (smile)
God bless you all and keep you healthy and safe!

Pile of Mush

Since the Percocet (pain med) wasn't working and it was only making Greg sleepy, they decided to have him take Vicoden (another pain med) instead. Well, the good news is that is works wonders. The bad news though is that he is now a pile of mush from the neck down. (laugh) And to think, he only took 1 pill! It is quite difficult to get him up and mobile when he resembles a college student after a night of binge drinking. (laugh) Of course, we don't want Greg in pain but we need to find a "happy medium" as opposed to a "happy drug". (laugh)As I sit here and watch Greg sleep off the Vicoden, I can't help but be amazed at the miraculous recovery of this man. To think, a week ago this very day, I was sitting by his bedside and watching the machines breathe for him. Today, all that remains is a monitor attached to some sticky pads. That is, of course, not including the battle scars that lay beneath the tattered hospital gown. He is a sleeping prince to me - my gift from God. He is my best friend, my lover, and my soul mate. Yes, life would be difficult without him if God would have taken him from this earth - but it seems God knows Greg still has a lot to do in this world and He needs him here to use his talents in architecture and his golden heart to help others. I have known it from the day that I saw his hazel eyes widen and his pulse race as he showed me the first blueprint that he did in college. It was like a kid on Christmas morning. My heart races just thinking about that moment. Yet again, my heart races anytime I am around Greg. (smile)

Visitors from Beyond...

... the great white walls of the hospital are permitted. The men in their white coats are allowing Greg to have visitors at this time and in all honesty, Greg wouldn't mind the company. (smile) Seeing the same people day in and day out (including his wife) get boring after a while. Of course, visiting would only be during the weekend since people flood through his room during the weekdays to get him out of the hospital all together. You would need to wear gloves and a gown (hospital policy) when seeing Greg but as I have learned, you can get away without wearing a mask. (laugh) Anyway - how is Greg supposed to tell if you are smiling???We understand that it is a long trip for most people and are not expecting any other visitors, except his parents this weekend - but we thought we would put the invitation out there anyway. For those that would like to visit this weekend (hint, hint to a couple of you who know who you are *wink*), give me a call on my cell phone before coming so I can let Greg know. For those of you that are going to visit - wait to you see the color on this man! (laugh) I thought he was tanner when he came to the hospital but it turns out his whole complexion was actually dark due to the lack of oxygen in his body. It is totally amazing!Again, I would like to ask everyone to pray for the donor's family again. It was one week ago yesterday that they lost their loved one and gave the most precious gift of life to so many other individuals. They will forever be considered family and angels of God!

Five, Four, Three, Two...

There are now two chest tubes remaining as of tonight. Greg has one on his right side and one on his left. Slowly but surely, the blasted tubes are departing and we are not sad to see them leave.Greg also had a bronch tonight and all he remembers is that Dr. Zink said that everything went good. It is kind of difficult to get much more information out of Greg when he was in la-la land during the procedure because of the nifty little drugs they put you on. (smile) (I don't think anyone would ever want to be awake for something like that!) This should be the last bronch until next Tuesday at 9am when we have to go in to get a bronch and biopsy.Yes! I did say "go in"! We were told today by Ann Marie (our transplant coordination) that our discharge is Monday afternoon - as long as the bronch turned out okay today and the chest tubes are out by then. At this rate, it should not be a problem. Greg has one test to pass though before he can run out of hospital - he has a 6-minute walk and spirometry to do well on - that is Monday morning. Then I get to bring Greg "home" to our hotel suite and a week later, we meet with the transplant team again (Monday, 29th) to get the okay to REALLY go home. (Did we tell you how much we miss our bed? *laugh*)New stats:
Greg slept on 1L of oxygen last night as his oxygen saturation went below 90% - this is normal though and as the chest tubes come out and Greg heals, his lung functions will get better and so will his sleep oxygen saturation (without any oxygen) - he will not need oxygen when he leaves the hospital
Greg did over 6 minutes on an exercise bike today - that was on top of getting out of bed, bathing his body (I washed his hair due to his limited mobility in his arms at the moment), dried his own hair, used to sink to brush his teeth and shave, walked around the halls for a while without any support or assistance, used the real bathroom on his own, etc, etc. Of course these things may seem simple but to someone who has just gone through such a surgery, they are milestones to celebrate!
As I said before - 3 chest tubes down and 2 to go
Eating full meals and swallowing is getting better
FEV1 was at 1.60 today (he was at .88 before the transplant!) and it gets better every day (http://www.medterms.com/script/main/art.asp?articlekey=20403) Means his lung functions are better every day!
Training was complete and we are now infection and rejection experts (wink)
Full blood test results came back and Ann Marie said they were "great" for Greg only being 1 week post-transplant. The greatest number was that his creatinine count (http://www.rnceus.com/renal/renalcreat.html) was "0.9", which is GREAT and we are especially happy since a couple of years ago Greg was put on a kidney list as well because he was suffering acute renal failure due to the high levels of antibiotic (Tobra) that was used to save his life when he had pneumonia
Greg is considered ahead of schedule for a CF bilateral transplant patient and the transplant team is amazed. With the extensiveness of the disease in his body pre-transplant, he should not have lived as long as he had and he should have been septic post-transplant, which he was not. I guess they forgot that God was in control of Greg's health - always has been and always will be!
Thank you, Lord!

Too Sleepy

I am sure that the nurses have been in and out of his room all night, so I have decided not to call Greg so early to check in. He needs his rest for today is a very busy day. Tomorrow is the last weekday before he may be released so it seems like there are a thousand people in his room at any given moment. I feel bad because every time I guard his door, one of those pesky nurses come in to get his stats. Hello??? You can get his stats off the monitor at the nurses station! That is what the computerized central system is there for. But, alas, they feel the need to poke Greg a few times to make sure he is still alive. Hmm... Wouldn't the monitors start beeping and flashing if he was having any difficulty?? (laugh) Okay, besides the one area of lack of sleep - the whole transplant process hasn't been that bad - at least, not from a hospital point of view.Since there are no Greg reports, I will give you and update on how I am doing as that is one of the most frequent topics of emails that come in. (smile) I am doing well. Yes, I miss my house and my bed but I have already called the hotel "home" a couple of times. Given that we get breakfast every morning and dinner 3 nights a week, along with the fact that this hotel only has suites, a laundry facility, 24 hour fitness room, shuttle service, etc., it is difficult to complain. But, alas, I cannot wait to get home, with my wonderful husband, and enjoy the next 50 years together. (smile) The one thing I miss more than anything is being able to hug Greg. When something like this happens, it is the smallest things, such as a real hug, that you miss the most. As soon as those chest tubes are out and Greg isn't as sore, that is the first thing we are going to do - until then, we will just have to wait. The wait though - is well worth it!

Smile - Uninterrupted

The smile on Greg's face seems to be getter bigger by the way. Wait! Maybe it only SEEMED bigger because of the lack of an oxygen cannula on his face. Yes! That is right folks! As of 5pm today, Greg was taken fully off the oxygen. I can hear the heavenly angels singing in praise!And to add to that excitement - you get more! One of the 5 chest tubes was actually pulled this morning. One down and 5 to go.Wait! There's more - not only do you get this handy dandy dicer. . . (laugh - got carried away there for a moment). Drs. Love and Zink stopped by and they are planning on pulling a chest tube a day and the reason why Greg is in pain on his right side is not really the chest tubes but he has 3rd degree burns on the right side of his chest cavity as they had to cortorize (burn) all the blood vessels closed during the surgery - remember? His blood vessels were growing into his chest cavity and towards his lungs for oxygen.So, here are tonight's "stats":
No longer using oxygen and his oxygen saturation is around 96 when awake and 93 when sleeping. From what we were told, this will get better from here as the chest tubes are pulled and Greg gets his strength back.
Ann Marie (transplant coordinator) is planning discharge for THIS Monday or Tuesday to the hotel. Of course, we will still be going back and forth to the hospital for things for a few days afterwards but who cares!?!?
Had first transplant training session today and tomorrow we get the second half. Learning about when to wear the mask, staying healthy, hygiene, household maintenance, and umm.. Well... Married couple stuff (laugh)
Greg will be having a bronch tomorrow just to see how things are down there and get any yucky stuff up (normal procedure)
Tomorrow Greg gets to visit the rehab (exercise) room for the first time (all rehab has been done so far in his room)
Diet and nutrition will be discussed tomorrow since Greg has to maintain a low salt, low, fat, and low cholesterol diet (okay - that is going to be a hard one for Greg but we will get through it - with a little strong discipline)
Otherwise, the day went per normal. I stayed with Greg while he slept for the first time off the oxygen. He didn't need it but was telling the nurses to take it off tomorrow. As Greg said "It has been a lease for so many years - but also a lifeline as well." Made perfect sense - so I compromised and promised to watch his monitor while he slept. When he woke, I gave him a report and now he is comfortable to sleep tonight without oxygen. (smile)
Lastly, we again want to thank everyone. We have received balloons, cards, a get well basket, and a ton of well wishing emails. I hope you understand why I have not replied to any of these blessings... But wanted to let you know, just the same, that we thank you from the bottom of our hearts and you are truly a blessing in our lives.

Not a creature was stirring

Given that Greg is in his own room now, it is difficult for me to call for a morning update. Since I don't want to wake Greg, the "crack of dawn" posts are going to be put on hold until Greg joins me in the hotel. As far as I know, all went well last night since I didn't get a call and I am sure they were able to easily remove one of his chest tubes. It is amazing how far he has come in less than 6 days. Wow!So, although this is not one of my most energetic posts, I did want to let you know the night went well. Now I must bid you a fond farewell as I have work that needs to get done before I can leave for the hospital.There may be posts during the day, but either way, there will be a post tonight on Greg's day and any new stats/news.God bless you all!

One Down - Four to go

Guess who I just spoke with on the phone?? Greg! (big smile) I left the hospital around 5pm to take care of some things and put in my full 8 hours of work (remotely). So, I called the nurses station and they said his nurse was in the room and patched me through. To my surprise, Greg answered the phone! I don't know if you can see me smiling through the computer but does Cheshire cat ring a bell? (laugh)He said (in a very horse voice) that he is doing well and had a very long walk tonight, up and down the hallways. Also, great news! One of the 5 chest tubes is being pulled tonight. It is #3 and all we know is that it is not the middle tube (under the sternum) but on one of his sides. Yeah! (insert happy dance)Here is the most recent update on the day's events:
Was released from ICU into a VERY small room and after his wife complained, over and over again, they moved him to a much larger room - where you felt you could at least breathe (Room D4/422)
Oxygen saturation is remaining at around 100% when walking or moving around
Was able to do a mock exercise bike with ease - no coughing up a lung or turning blue like he used to - he was very amused by this
Greg keeps staring at his toes and fingertips in amazement - he just can't believe how pink they are - instead of the blue they have been for so many years
He is able to get in an out of bed with ease (once we get the chest tubes out of his way), able to shave himself with an electric razor, and able to use the restroom on his own - these may seem like small things but they are large considering all his body has been through
Only has 1 IV really for anti-biotics for the MRSA
Bronch with pulmonary guys may be scheduled for Monday so Greg can leave the hospital (if they can get Dr. Meyer's schedule free)
Training on the spirometer (http://www.google.com/search?hl=en&lr=&oi=defmore&q=define:spirometer) and first chapter on health and hygiene is scheduled for tomorrow (transplant training)
He has an appetite for ribs at the moment (woo hoo!) - his appetite is coming back
His voice is coming back again and he is learning to swallow better (after having the tube down there for a while, that happens)
Other than that - all is well in Madison. Today is my first official day back at work (remotely) and I am working on catching up on emails and tasks. I even got a load of laundry done tonight at the hotel and ate dinner for the first time in days. (smile) And yes, I am still on cloud 9! (wink) And I will be for another 50 years by my husband's side.

Sleeping Beauty

Per the morning nurse, Greg had a very restful night. He was given two pain meds overnight but no sedatives and no problems. His magnesium is a little low but can be easily fixed. Otherwise, he is the same as I left him last night - just very well rested. For now, we will play role reversal and I will be the Knight in Shining Armor and he will be Sleeping Beauty. (smile)As for me, I am doing well. The bed at the hotel is nothing compared to our wonderful and soft bed at home but it is a far cry better than the couches or cots at the hospital. I have also started back to work as of early this morning. Luckily, I am able to work from anywhere and remotely connect to my computer in the office. Given my position as a CRM Systems Administrator, all my work is done via the computer so it is as if I never left the office. This allows me to put in my 8 hours a day from either the hotel or hospital, while attending to Greg and being by his side throughout this all. If I haven't used the word "blessed" enough, I will use it again here. (smile) I am truly blessed to have this opportunity available to me.Well, that is it for now. I will be sure to either send updates as they warrant throughout the day but I will send an update after 9pm CST tonight either way. Again, we cannot thank everyone enough - you all have been wonderful!God Bless!

Cheekbones

Thank you mother and father for the nifty cheekbones that cover my eyes when I smile big enough. Had it not been for these cheekbones, Greg would never know I am smiling behind my mask. Given my sarcastic humor, he would not be able to tell if I am joking or these cheekbones did not cover my eyes. (laugh)Greg had a bronch today and it seems that there was a good bit of mucus down in his lower right lung. This, again, is normal after such a big operation. So, they went down there and sucked it out. Unfortunately the sedation made Greg feel kind of like he had a hangover afterwards so he wasn't as vibrant in the late afternoon.His lowest pain rate of the day was "1" and the highest was "4" (out of a scale of 0-10, with 10 being worst). Ironically, he has no pain from the incision but it is from his chest tubes. Let's pray a couple of those come out tomorrow. He can walk with them in but moving around is quite painful. Fortunately, he has no shortness of breath or pain from breathing. Also, the miracle of the day is that is oxygen saturation is 100% when he is walking with 2L of oxygen. They may get him off the oxygen tomorrow but I will keep praying and see. Once step at a time - you have to crawl before you walk and walk before you run. Right? (smile)Greg and I want to take this opportunity to send a thank you to all our family and friends for your love, support, and prayers. God has truly been listening and miracles do happen. You just have to remember to keep the faith and God works in His times - which may not be the same as your time - but the wait is always well worth it!

Helping Hands at Monster

Helping Hands at Monster
What a treat! Yet another post from me today! Well, I just got great news (outside of the hospital) that I had to share. As you may know, I work for an awesome company called Monster Worldwide (yes, Monster.com) and they have written a story about Greg, CF, his battle, and his miracle - and the CF Foundation will receive a $100 donation from the company on behalf of Greg and may even be drawn to receive a $1,000 donation at a later date. They call it "Helping Hands" and choose a different charity to highlight each month. That means that our story was shared with all Monster employees and the whole company is pulling for Greg and I. (I added myself because my VP would not be happy if I didn't include myself - Thanks Lynn! *smile*) So, without further chitter-chatter, here is the article written. Greg and I are truly blessed. Thank you!

Helping Hands

A Couple’s Battle with Cystic Fibrosis

Shannon Steffen, a CRM Systems Administrator in Milwaukee, married the love of her life five years ago. Despite being very different individuals -- she’s a “little Italian New Yorker” while her husband Greg is a “Packer Backer” the couple “happen to have one of the best relationships out there.”The strength of their love has been tested and proven over and over as the couple battle’s with Greg’s illness, Cystic Fibrosis (CF). The genetic disease is caused by a defective gene that causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.In her own words, Steffen tells the story of their battle with CF on their website:Greg was in Minnesota chatting with me through an IRC [an internet chat room] before we met when the news came out. Greg said that he loves me very much but that he had something bad to tell me. I was scared and as I typed back to find out what it was, my hands started to shake. He told me "I have CF and I can understand if you don't want to be with me anymore". I was shocked. CF?!?!Then I started to think a little. "What is CF?" I had no clue of what that meant. In 1995 it was not a very often heard of disease. He explained that it was Cystic Fibrosis and told me that it was a disease that effects his lungs and digestive system. I was shocked but still didn't understand. He then told me that it was fatal. I asked when he caught this ugly disease and I think he laughed a little (because everyone asks that). I believe that at this point, his fingers were trembling also."Cystic Fibrosis is not caught, it is something you are born with" was what I was told next. I kept thinking it was something like AIDS. He told me that he would understand if I no longer wanted to speak to him. Why would I want to deal with something so horrible. Well being the person I am, I took a deep breathe and calmed my hands down a little.My reply was simply "It is too late for me to leave you, I am already in love with you and will be with you forever". Being that we were on the computers, I don't know how he reacted emotionally but the next thing I read is "Good, I love you so much and don't want to lose you".Again, being the person I am, when we said our good-byes for the day, I ran over to the campus library and took out all the books that I could about CF. I even read a book (forgive me but I forgot the name) written by a teenager who died from CF. It was her journal of sorts. I was touched and automatically started to fight for CF and that is where I am at now.My husband, Greg, is the most wonderful man ever. I do believe that God has made us soul mates for a reason. He has stood by me through thick and thin. How can I not love and be with a man that is so beautiful? I know that it is not his fault that he has CF but it seems unfair at times. How can you be so perfect and yet have such an imperfect body? Deep down inside I know it is to challenge us to appreciate life more often. Greg has taught me that.Lately, Greg has been very sick and is on home IVs every 5 weeks and oxygen 24/7 to help him breathe. His disease was mostly digestive but now his disease as come to the "final stages". Greg lost his only sister, Diana, back in 1988, at the tender age of 16 from CF. He is now an only child and looks at death with new eyes since that horrible day in 1988. He sees through these eyes when he looks in the mirror everyday or when he looks at his two younger cousins, Mike and Joe, who also have this horrible disease.Now we strive to make sure that we don't lose anyone else that is dear to us. We try to walk the 6.2 miles in the Great Strides Walk every year. We spread Cystic Fibrosis and Organ Donation awareness and we keep the thoughts of our already lost and loved ones in our hearts and minds every day that we are able to get out of the bed in the morning and take a deep breath . . .Happily, only days ago good news arrived: they received a call at 1:00 a.m. on November 11th that there was an organ donor and Greg would get new lungs. From accounts on their blog (http://thesteffens.blogspot.com/), the transplant was successful and Greg is recovering nicely.To learn more about CF or to make a donation you can visit the Cystic Fibrosis Foundation’s website at: http://www.cff.org/.

The Gowning

Ack! I wrote a ton of updates, hit a button, and everything went away. Boy that stinks!As I sit here typing this, I can't help but feel a little claustrophobic - it is as though I cannot breathe. Maybe that is because I am wearing a mask, gloves, and gown now. Yes, they have isolated Greg. Not to worry though - he is fine. It seems that they have the cultures back on his new lungs and it seems that right before the lungs were transplanted, one of his lungs' bronchioles tested positive for MRSA (http://health.utah.gov/els/epidemiology/epifacts/mrsa.html) . What does this mean for Greg? Not much of anything. They will start him on a regiment of antibiotics and kick it square in the rear end. The garb is mostly for other patients in the hospital that have compromised immune systems or diseases such as CF. Remember, Greg HAD CF and his lungs are now CF free. This means that Greg is better able to handle this.Okay - stat time:
Oxygen saturation - 99%
Oxygen given via nasal cannula - 2L
5 chest tubes still in (2 could be pulled in the next day or so)
Catheter and a number of IV lines were pulled
Neck IV line pulled
3 nublizers being taken - mucomist, albuterol, and tobra
Kidneys working well
Post-transplant training is being scheduled
Goals list is being created
Could be released to hotel as early as this weekend
Pain is much better today but mostly caused by chest tubes
Oh! And Greg does have a small mucus plug in his right lower lobe. They are running CPAP (http://surgicallyslim.com/definitions.htm) on him right now to loosen the little bugger up and if that doesn't work, they will do a bronch and suck it out. This is normal for 97% of the lung transplant recipients so again, it is not of great concern.
Lastly, Greg may have to stay in the ICU one more day. Why? Because they don't have any free space at the "inn" outside of the ICU. They only had 7 patients this morning but now there are no vacant rooms. Greg and I laugh because we figure that we are still going to be charged an astronomical amount for this room - even though he doest need it. (laugh) Go figure!
Well, this supplemental post is long enough. Yes, I may have more to tell... But yet again... Those that know me know that I always have something to talk about. (laugh)

Nightly Progress Report

The nurse just gave me a nightly update report. Right now the doctor's are making their rounds so I wasn't able to get too specific of information. But, I was able to find out that Greg did well throughout the night and he sat up again from around 8pm - 9pm. They did give him a little something for the pain and he was able to sleep throughout the night.As of now, there are a couple of areas of his blood gases where he is a little higher than they would like. Primarily with how well his body is getting rid of the CO2. With being decreased from 6L of oxygen to 4L of oxygen, who knows what that means. His oxygen saturation is still in the high 90's (~98%) but again, that can mean anything from something being wrong to the clip on his finger that measures this rate not being on his finger fully (which tends to happen since he has clubbed fingers).This does not mean a set back as we knew it was going to be a steady process with peaks and valleys. Medications will continue to be adjusted to deal with these changes in his body and after 3 days of being in a bed, I am sure anyone's body would have a little difficulty with moving around again.I am sure that we will get more detailed reports this morning that I will be able to share with you later tonight. Unless the Blog goes down again, the update should be shortly after 9pm CST again. (smile)Please keep those prayers coming. Greg needs all the strength he can get.

Hip Hip Horray!

Greg's room was short a few machines today! Well, today was the day - Greg had the vent pulled and he did awesome! His blood gas tests (oxygen & CO2) came back normal and he was pulled from the vent this afternoon. At this moment he is on 6L of oxygen via a nasal cannula per procedure and that will slowly be lowered until he comes off oxygen totally and only needs room air. He was sitting up in a chair a couple of times today and watched both the Cubs and Packers win. It was so great to see him smiling so much and although his voice is a very soft whisper (due to it being sore from the breathing tube), it was like music to my ears. It is also a lot easier to read his lips then understand hand gestures!Dr. Love stated that tomorrow Greg will be moving out of the ICU and into a normal room to continue his recovery and care. After that, he will move into a hotel in the area (which I am at now) for a week so that he is close enough to the hospital but living on his own. That will be a testing period to make sure all the prescriptions are good and Greg is comfortable with taking his own care into his own hands.
So, now we have the following to get rid of: 5 chest tubs, a handful of IV lines, a neck line, and catheter. Little by little the tubes are going away and soon enough he will be sprinting out of the hospital.
Now it is off to sleep land for me as tomorrow Greg will be walking for the first time in 4 days.
My apologies on the post being so late - I drove home to Milwaukee (1.5 hours away) to gather some items we forgot, get some things for Greg, and check in with my neighbor. I am sure you all understand. (smile)
God Bless!

Another restful night

Just got off the phone with ICU and Greg is doing wonderful. They have him off the nitrous oxide (sp?) again (that is the drug to help the lungs absorb oxygen) because he is making enough of his own. He requested sedatives about 3 times during the night to ensure that he rested his body enough for today, when the tube comes out. Of course, the vent coming off all depends on his bronch this morning (to be done around 8am CST), his arterial pressure, and his blood gas test results.Yesterday he was hysterical! At one time, he threw a "hissy" fit but throwing his arms and legs up in the air and dropping them back on the bed with a "thump". This was to tell the doctors something along the line of: "Come on now! Get this vent tube out of me. We all know the lungs are good - let's get the show on the road." (laugh) Some may be put off by this but not me. You have to remember that Greg has been sick for so long but if you took the nasal cannula off of his face (while he is sitting), he looked normal and healthy. He never listened to the numbers or how doctors told him years ago that he should be stuck in a bed with how low his numbers are. They are amazed at the strength in his limbs and how he moves himself all over the bed by himself, even with all the tubes and the vent. To me, that is just Greg. (smile)Oh! Also, when he had physical therapy the first day, the PT asked for Greg to push his leg out, against the guy's pushing back on it. Greg had so much strength that he push the guy straight across the room. Now how is that for strength?!? What a miracle!Lastly, we want to thank everyone once again. Family and friends have been so utterly supportive and we are so truly blessed. Please take our heartfelt thanks and continue to send us those prayers... and please include a prayer for the donor's family. They are truly heroes!

Disappearing Act

I arrived at the hospital nice and early to have front row view for the disappearing act but was sorely disappointed when the show was cancelled. What the heck am I talking about? Well, the vent never left Greg's room!! Okay, I am really not upset because I have learned that when a nurse tells you something, you don't invest a lot of emotion into what they tell you. It is when the surgeons speak that you should listen. So, when the nurses told me that the vent would most likely be pulled today, I was hopeful but didn't get too hopeful. Now, when I spoke to Dr. Zink today, after Greg's morning bronch, I knew the truth. (Dr. Zink is Greg's other surgeon)During our discussion with Dr. Zink, we were given a great picture of Greg's new airway for his lung that they took during his bronch. Believe it or not, this looks great - per Dr. Zink.We were also told that they want Greg to stay on the vent one more day because of the trauma his body suffered. So, tomorrow morning, per Dr. Zink, the vent will be pulled if Greg's bronch is as good and if he is able to maintain his oxygen levels while breathing through the vent on his own (a test). Please do not be discouraged - Greg was fully awake today for a while, sitting up, and watching the UW Badgers football game (which was a horrible loss for the team). He asked for a sedative tonight to sleep deeper and conserve his energy for tomorrow so we left the hospital early.Oh! My wonderful husband "told" me that I need to grow longer legs. It seems that he thinks me, being 5'5", will not be able to keep up to his walking pace after he is out of the hospital now. (laugh) When we first started to date, I used to threaten to break his knee caps because he was always walking too fast for me. That just goes to show you how good he is feeling - he already knows that I wont be able to keep up with him or his new lungs. What a class act he is! (laugh)Well, it is 8:30pm and I think I am going to head to bed early. I will send a post tomorrow morning - even if it is just to say that it was an uneventful night. God bless you all!

Quiet Night

It was certainly a quiet night and we are grateful. The hospital didn't call me at all, which means that Greg did well during his first full night with the new lungs. A couple of years ago, I would have panicked because I didn't hear anything but I have learned that as long as the phone doesn't ring, everything is the same or better than when I last left him.Today they are going to get him off the vent and I am so excited. From what Dr. Love says (his miracle lung surgeon), he most likely will be taken off it around midday. So, we are not going to rush over there this morning but will still be there shortly after visiting hours start. Since it is the weekend, our free continental breakfast doesn't start until 7:30am and even though we want to be there sharply at 8am (when visiting hours start), we will make sure to take our time and eat our breakfast for it will be a long day and we need all the energy we can get. Oh! I did tell you that "we" is me, and Greg's parents, right? Don't want you thinking I have a alter personality. (laugh)Please feel free to send a ton of prayers Greg's way today. God is definitely watching over him, as well as his other angels: Diana (his sister), Uncle Bud (his second father), and a variety of other wonderful family members and friends we have both lost. Diana and Uncle Bud were extremely close to Greg and being that Uncle Bud had let us know, before passing recently, that he would always watch out for Greg, we have no fears and everything will work out wonderfully. (smile) Heck, we have God and the heavenly angels on our side - what is better?!?So, in ending - I will post later tonight - maybe not until shortly after 9pm CST to let you know all that is going on and share with you Greg's first breaths.God Bless you all and keep you safe and healthy!

Sleep deprived...

Okay, I am highly sleep deprived and have forgotten at times what I have told you all so please forgive me if I repeat myself.I am back at the hotel from spending another couple of hours with Greg. He is in and out of sleep right now and that is good because tomorrow they are planning to pull the vent and let him breathe for the first time with his new lungs. I had to catch myself tonight because I told the Respiratory Therapist no to give him Tobi for his breathing treatment because his lungs don't handle it well. I have to laugh because my mother-in-law turned to me and said "You mean his old lungs couldn't handle that medication. These are new lungs." Wow! She was right. It is a whole new ballgame now and this is going to be an interesting learning process.Here are the stats on Greg though:
He had high blood pressure and was put on a small amount of Nitro to bring it down.
His oxygen level is at 100% on the vent (he has NEVER been 100%).
The medication to help him absorb oxygen has been decreased now to 10 parts per million (was 30 and needs to be 0 before getting him off the vent - they are decreasing it 5 every 4 hours)
He is moving all over the bed and the nurses keep commenting how he wants off the machines - we all laugh because of his stubborness
I had to tell him 12 times today that the Wisconsin Badgers football game is tomorrow because he keeps arguing with me (through hand signals) to put on the game today (I am good but not good enough to tell the Badgers to play today) (laugh)
He is on strong drugs to wipe his memory clean of all this time on the vent (see bullet above this one) (laugh)
Has 1 IV in each arm, 1 IV in the groin area, 5 chest tubes, 1 IV in the neck, 1 IV in the chest port, his G-tube is accessed, and he, of course, has a catheter (sp?).
Otherwise, all is good at UW-Madison. Oh! We got to meet with the surgeon today and he is not showing his enthusiasm in Greg's progress - he doesn't want to give us false hope. But as we have seen in the past, Greg doesn't follow the "norm" and he will continue to teach the doctors that the timeline is not a "one size fits all". He is defintely DIFFERENT! :)
Well, that is all from me for the night. Since we are in the hotel now, the updates are now going to come either 1 a night or I may also squeeze 1 in the morning as well - depends on how much news I have to share.
Our love to all!

What shall I call this update?? (& Sending Stuff)

I am unsure what to call this update. Maybe something like I feel a lot better now that I have showered! (laugh) I am checked into the hotel about 4 miles away and the hotel shuttle will be taking us back to the hospital shortly to see the wonderful miracle continue to unfold.Greg is doing wonderfully. His plural (sp?) space around the lungs is still draining which is normal and they are continuing to lower one of the drugs he is on to prepare him for getting off the vent tomorrow morning. Oh! To see him take his first deep breath! I cannot tell how how excited we all are. Of course, Greg wants off the vent now but he is being good and listening to all the doctors and nurses. He knows how much of a miracle this is and he is not going to risk his health for anything now - not even the anticipation of taking that first breath!His color gets better and he continues to amaze the whole staff. We know that there is always the possibility that he can have a setback but we have faith in God that everything will turn out great in the end.So, I have an address for the hospital. You may send balloons, stuffed animals, or cards at this time. They do ask that there be no flowers or plants since it is a filtered ICU. Here is his address:Greg Steffenc/o UW-Madison Hospital4D West Cardiac Surgery & Transplant UnitD4C4 Cardiothoracic Surgery ICU600 Highland AvenueMadison, WI 53792So, if you wish to send anything, please follow the guidelines above but we look forward to seeing just how colorful and decorative his ICU can get!We can't thank you enough for all your prayers and well wishes! We are truly blessed to have you all in our lives!

Thumbs Up

Greg has given the "thumbs up" today to let me and everyone else know that things are going great. I am on cloud 9 right now. When I started dating Greg, he had around 60% lung function and now... now... now... his oxygen level is staying at 100%! The color under his fingernails is pink and the color of his skin is a color I have never seen on him. It is, well, the color of healthy people!His strength is great per the physical therapist, I have given him a full update on everything that has gone on, they are decreasing the drug to help him absorb oxygen (since he is doing it on his own) and when he is finally off that drug (which will be soon), the vent will be pull. From what everything looks, the vent can be pulled as early as this afternoon. Either way, vent or no vent, they will have him either sitting in a chair or standing up by the end of the day. Greg is eager to leave the bed and no matter how much they try to sedate him, he keeps waking up. (laugh) They are getting a kick out of this because he is "helpful" when he is awake and a "pleasure".Right now he is sleeping again and he has signaled to me (cause he can't talk and his eyes are closed) that I need to eat, get settled in the hotel next door, and take a shower. (laugh) Now isn't that the pot calling the kettle black? (laugh) He is defintely feeling good and is the same old Greg!Oh! By the way - some have asked if there is anything they can do to assist us in this time. Right now, prayers are welcome but otherwise, everything is going well. Thank you all for asking and I will pass on the room information once I get the okay from the doctors.Many hugs - from both of us!

Overnight update

Wow! What a night! Around midnight, Greg was finally wheeled back up to the ICU and the surgeon came to speak with me. It seems that Greg was a lot sicker than we all realized. His right lung lobes were absessed and filled with puss. The blood vessels in his whole chest cavity had actually grown into the chest cavity itself in response to the lack of oxygen - the vessels were trying to get more oxygen from the lungs. He was truly at the end stage of his disease.So, shortly after, I got to see Greg for about 30 seconds. His color looks very good and the only problem he complained of was being cold - which they fixed with nice warm blankets. I also got to see pictures of the old and new lungs - at my request - all I can say is WOW! The old lungs looked like something out of a horror movie and the new lungs looked like something out of my college biology text. It was amazing!What happens now - well today they will try to get him in a chair or standing with the vent in and may trying to begin weaning him off the vent if his oxygen levels are good. If he cannot be weaned today, they will try again tomorrow. If not tomorrow, then they may have to wait 7 days because of a chemical that they put in his ventilation line to help his new lungs transport oxygen. So, prayers are welcome always and right now just know - it was an extremely difficult operation due to the extent of his disease but at no time did he ever become critical. What a true fighter!God Bless!

The second half

New update - at 6pm CST the nurse came and told us that the right lung was taken out and the new lung put in. Also, Greg was put on bypass in order to make sure his body gets all the oxygen it needs while taking out the old and putting in the new. We knew this was a possibility because when you think about it - Greg had 18% lung function total - take one lung away and you have 9% (theoretically) - a body cannot sustain itself on 9% lung function while all this is going on.So, not to worry - this is a good thing - we are more than half there and hopefully will hear something around 9pm to tell us he is on his way back to his room. I will try to get online to let everyone know when he is "whole" again and up in his room - stable. As for right now, he is in great condition and the transplant is going very well.Keep those prayers coming and please add the donor family to your prayers - they have given a gift that could never be repaid!

Are we midway?

At 4pm CST, a nurse came to tell us that everything is going well and Greg is doing great. I asked her what that means and she said that the transplant team didn’t tell her any more than that. So, we aren't sure if they have gotten either of the two old lungs out or any of the new lungs in at this point. We do know that the first incision was made around 1pm CST and that his old lungs are wedged in their pretty well since he was on a ventilator for around 8 months back from November 2002 - July 2003.But we now have more blankets and pillows, as well as some washcloths and towels so it is the hotel UW-Madison for us. Our hope is that the transplant will be done around 9pm - 10pm tonight and an hour later, we will be able to see Greg. For now, we have to continue to sit and wait.We thank you for all the love, support, and prayers that we have received. Greg and I are definitely blessed for all of our friends and family - as we are blessed with these new lungs.Once Greg lets me take a picture, I will be sending it along. For now, he is peacefully sleeping while accepting his gift from God.

It's a go!

Around 11am this morning, my wonderful husband was wheeled away for surgery. Let's not go into how long they made us wait in the pre-op area. (laugh) So, you may all rejoice for my husband is now receiving his double lung, life-saving, miracle of a transplant! They figure the transplant should last until some time in the middle of the night and then it will take around 24 hours for him to get off the vent. Of course, Greg being Greg, he will surprise them and get off the vent sooner but they always try to not give you false hope.So, we, his mother, father, and myself, are waiting in the family area - patiently as we can on only a couple of hours of sleep - for the someone to update us on the status of the transplant. As I get information, I will let you know. For now, it is in God's hands and we ask that everyone please pray for him and his continued strength through this wonderful but difficult miracle.God Bless!

Transplant Time!

We received a call at 1am this morning stating that they had new lungs for Greg. Well, it is now almost 7:30am and they should be wheeling him down around 8am. The lungs are coming from Detroit, Michigan and everything looks great. So, ideally, around 9am the surgery should begin, 11am the new lungs should be here, and then 24 hours later Greg will be off the vent.Everything is set and ready to go. He has been prepped and now we just wait until he is wheeled down. Of course, he is hungry and tired (as we all are) but that should be taken care of soon.Wow! Have to jet! They are early and ready to take him down. Ciao

Tune up time

No, it isn't one of our cars but Greg that needs a tune up. You see, those with CF call getting IV treatment as a "tune up". (laugh) Yes, I am able to laugh about it because this has become our life together - every 5 weeks or so (this time it has been over 2 months! Yeah!) Greg gets home IVs for 2 weeks straight in order to clear out his lungs. So, tomorrow he goes to the hospital, gets a line hooked up to a port in his chest and does his IVs at home. The only time he has to be hospitalized for these is if he spikes a temp. Otherwise, the home care company delivers the IV jars (yes, jars - not bags) and Greg hooks himself up, pops the jar in his pocket and lives does normal things without much of a problem.Okay - there is one problem. Greg doesn't get a lot of sleep, he can only take a partial shower (cause of the dressing), and he drives with the shoulder strap under his arm so it doesn't bother the port site. Otherwise, in 3 days, he starts to feel like a new man and can breathe his full 18% lung capacity. Not to worry though - 5 dry runs on new lungs hasn't gotten us down - those new lungs are just around the corner. God is just waiting for the right pair and letting our angel of a donor finish his or her work on this Earth. We are patient - one day at a time - we have faith!

So what's next?

The president has been chosen and both the stock market and many people are very happy. What does this mean? Well, if you are to ask one of Greg's best friends, Steve, the world is going to hell because a Republican is in the White House for another 4 years. *laugh* If you ask Greg and I, it means that we continue to live our lives one day at a time and cherish every moment we have with loved ones. Although the election had its ups and downs, one thing remains clear - whichever candidate would have been elected, people would have still continued to live their lives and adjusted to whatever the government put in front of us.We are already used to our own roller coaster ride but find joy in the smallest of things. One of the smallest things in my life is a set of 4-year old twins - my baby brothers. A few weeks ago, my brother Richard was asking me if he could come to my house (which is 900 miles from him) and in the course of the conversation, he called me "aunt". I may be 26 years older than him but I am still his big sister - so, I decided I was going to be 4-years old again and argue back and forth on him. Sister-Aunt-Sister-Aunt-Sister - each time I changed my tone of voice and he changed his to match. With my final grunting of "Sister", his mother gets on the phone laughing. Sure, to all three of us, it was just a game... and a fun game at that. This was the smallest of pleasures in my life but is cherished nonetheless.So what is next? Enjoy life! Just as Richard and I did - as children only could!

Election Day

No, we aren't going to tell you who to vote for or why one candidate is better over another. What we are going to tell all Americans is: "Get out and vote!" Why? Because your one vote really does count. This election is going to be close and every vote is needed to ensure that the President of the United States of America is truly the person that Americans want and need in the office.Most people think their one vote doesn't count but do you realize how many people think that? Hmm - let's say 500,000 Americans believe that their vote doesn't count because they are one person and they choose not to vote in this election. Well, that is 500,000 votes, not just 1! Those votes could have made a huge impact on the election!So, why not let your voice be heard?? Get out an vote - and, of course, we pray that the person we vote for wins the election but it is up to the American people to decide - ALL American people!