Lung Transplant - Pulmonary Fibrosis, Cystic Fibrosis, COPD, Pulmonary Hypertension and Bone Marrow

Lung Cancer and Beyond - Live Strong Cancer Survivor Camp

2012-10-13T12:03:00.002-07:00

A wonderful Cancer Survivor Weekend

http://http//www.youtube.com/watch?v=CdLYDkaj1Wk&feature=youtu.be

This video sends a strong message of what lengths a friend will go through to help another friend. This tribute is greatly appreciated.

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CELEBRATE LIFE,
Alma

Alma update 12/16/2011

2011-12-16T10:55:00.000-08:00

Here is a summary of what I have been experiencing. Ever since my transplant in May I have been getting hot flashes. I had gone through menopause in 2005 after chemotherapy due to lung cancer. The doctors have no idea why I am experiencing the 20 to 30 hot flashes I was having a day. At least 8 to 10 of them were during my sleeping hours of which I was waking up every time because they were so severe. Anyways the solution to the hot flashes was an anti-depressant. I went on it and that shot my blood pressure up. I started taking blood pressure medicine and had an allergic reaction. I felt like I was walking on stilts and my legs were constantly hurting and they started stinging a lot. I took a look at my legs and there were bright red and hot to the touch. I was bedridden for over 2 days. Needless to say I stopped taking those meds and now I am on another one. Hopefully this one will work. I will not even get into my sleeping patterns. Let's just say that we had to experiment with different doses and I believe that is squared away. However, these are just minor symptoms as compared to where I was last year at this time.

Forever grateful to God, the donor family, my parents (my earth angels) and my breath!

Celebrate Life,

Alma

Borrowed Time TV Show on Organ Transplants

2011-12-07T16:02:00.001-08:00

Borrowed Time is a docu-drama that puts organ donors and recipients in contact with one another. The show is hosted by Damon Gault who is himself the recipient of a heart transplant.

Each episode captures the heartache, gratitude and life transforming stories resulting from an organ donation. Damon interviews both recipients and donors, prying deeper into their narrative, discovering what events led the person to confront the brutal reality of a failing organ.

Please watch a preview right here or on Facebook at Borrowed Time.

You can also like the page on Facebook to see when this will be on Television. Contracts were signed last week.

Thank you Damon for your work on bringing awareness of organ transplants to the public.

David please join me in

Celebrating Life,

Alma

PFF Research Fund to Cure Pulmonary Fibrosis

2011-12-03T15:39:00.001-08:00

The Pulmonary Fibrosis Foundation (PFF) announced that it has established the PFF Research Fund to Cure Pulmonary Fibrosis, a fund created to support research that will assist in the development of successful therapies for pulmonary fibrosis (PF). For more information please go to http://pulmonaryfibrosis.org/research/PFFgrants or click here.

Celebrate Life,

Alma

8 1/2 yr post heart/dbl lung transplant

2011-11-26T15:46:00.001-08:00

On September 24th Chaz Devlin rode over 79 miles on his bike after receiving a heart and double lung transplant 8.5 years ago. He rode the Bike MS: City to Shore Ride 2011. Join me in congratulating Chaz on this great accomplishment! Here is a Facebook page on the ride and here is their web page.

Congratulations!!!

Celebrate Life,

Alma

Happy 10 Year Lung Transplant Anniversary

2011-11-24T16:20:00.001-08:00

It gives me great pleasure to wish my dad Happy Birthday and Happy Anniversary. Yes he celebrates two birthdays and our family was blessed 10 years ago when he received a lung transplant. So much for statistics! His secret is taking his anti rejection pills on time, doing his spirometer daily and listening to his doctors.

Read about his transplant journey here.

Dad I love you!

Dad join me in Celebrating Life,

Alma

Mike Keim

2011-11-06T17:52:00.000-08:00

Mike is a 911 dispatcher and he likes to people watch. If you put him in a crowded area he is good for hours. He does not like scary movies and never eats the ends of his French fries. He believes that Monopoly is the best game ever. Family is the most important thing in his life. Mike is going to be the second person in the world to receive a double lung and bone marrow transplant from the same donor. This procedure had to be approved by the FDA. So Mike had to fill out a lot of paperwork for the approval as well as his doctor’s and the hospital (DUKE).

Mike was diagnosed at four years old that he had a low immune system SCID (bubble boy disease). He had developed a swollen knee and it got so big that he was not able to put on pants. The doctors believed that Mike had low levels of igG (Immunoglobulin G is a type of antibody that circulates in the blood and recognizes foreign particles that might be harmful) and rheumatoid arthritis (is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs). Part of the treatment was receiving IVIg (IVIg is an infusion of IgG antibodies) every two weeks. Now at the age of 26 he still received IVIG ever two to four weeks. This treatment is manageable, it is all he has ever known and that it is just part of life. The only challenge of sorts is the day of the IVIg treatment. After the treatment he is tired for the rest of the day. He needs a double lung transplant because throughout the years his lungs have been scarred from colds and bronchitis. The bone marrow transplant will take away the low immune disease and he will not have to take anti-rejection pills for life like the rest of us transplantees.

Mike also has celiacs disease a digestive disease that interferes with the absorption of nutrients. These patients cannot eat gluten (found in many grains and in many everyday products such as medicines, vitamins, and lip balms). As a teenager Mike had problems with bloating, gas and diarrhea and was misdiagnosed at first. A doctor had given him growth hormones and testosterone shots before the celiacs disease diagnosis. It seems like this disease can take a while to be diagnosed since there are so many varied symptoms. However , nowadays more doctors and the public are aware of this disease so for the most part it is diagnosed quicker. Mike is very approachable, is honest and a straight shooter. If you ask him a question expect to get his real opionion. He says that he always chose the ‘big’ friends as his protectors. Being a small framed guy he would seek the ‘big’ players this way he knew he would always be safe.

The hidden blessings that came with these diseases for Mike are that they have made him stronger, made him grow up quicker because of his reality. He does not take things for granted and he cherishes the ones he loves more. “Gets you thinking about what means the most,” he exclaims. What keeps Mike fighting is that he wants to see his older sister graduate college and become a teacher and he wants to see his little sister become a trauma surgeon. As far as his parents go he is going to take care of them as they get older. “No nursing homes for them,” he talked to his siblings and told them if anything ever happened to him that all his assets are going to his parents for them to live comfortably and for their retirement. He explained his feelings and the siblings agreed with his decision. He said, “A door never closes without another one opening. I found with my diagnosis who my real friends were, and who truly cared about me. I learned to be even more aware of those that I love. I met a whole new group of wonderful people I would have never met."

The lowest point in Mike’s life so far was the last stay at the hospital. It was a five week long stay and he was in ICU on a ventilator and could not eat or talk. “This was the hardest thing that I ever faced in my life. At times I was so depressed. I could not talk nor eat for 2 weeks and then I was attached to a ventilator machine so I could not move much and laid in bed for the majority of the day.”

Fight like Mike: Saving a local hero - Video (click here)

Mike holds special gratitude Duke’s Center for Living and all the people from his county, Cobb county, Marietta Georgia, for the entire fund raising they are doing for him. They send letters of support or comments on Facebook. They were able to send his entire family to Ashville for hot air balloon ride. Co-workers donated sick time for Mike so much so that they maxed out at 250 hours in a few days. His co-workers made a waiting list and they had to turn them away because of the overwhelming response. He refused to clean his locker at work because he is going back to work as soon as he is able to. He is going to be a productive human and donate his hours to someone who needs just to pay it forward. When he was in need he was helped. He actually cannot wait to go back to work.

I asked Mike what had he learned in this lifetime that he would like to share and I quote, “Don’t take things for granted. Cherish the family. When my voice was taken away ‘I love you’ were the first words I said.”

I can tell you that there were times when I was at Duke’s Center for Living when I did not speak to mike because I did not want to exert the energy to answer. I have to tell you how proud I am of his progress because when I interviewed him a few weeks ago he talked and talked and talked. It is a real honor and priviledge for me to have met Mike and some members of his family. I have grown to love them and I wish them all the best in this journey to health. There is no doubt in my mind that Mike and I will be chatting and walking and perhaps jogging or running together some time in the future.

Please enjoy a song that means a lot to Mike. It might become his mantra.

Who Am I by Casting Crowns (click for video)
Who am I, that the Lord of all the earth
Would care to know my name
Would care to feel my hurt
Who am I, that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart

Not because of who I am
But because of what You've done Not because of what I've done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind
Still You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours, I am Yours

Who am I, that the eyes that see my sin
Would look on me with love and watch me rise again
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me

Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind Still
You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours

Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapor in the wind Still
You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours I am Yours
Whom shall I fear
Whom shall I fear 'Cause I am Yours
I am Yours

Mike, join me in

Celebrating Life,

Alma

Skys Carebares for CF | Dedicated to the legacy of Sky Hillier

2011-10-27T06:57:00.000-07:00

Here is a message from Shantelle Harris:

Hi to all my wonderful family and friends...I'm asking everyone to take a moment and look through my late Husband Sky's Legacy website, posted below with some changes...Please share it with our CF family/community, repost it, blog it, comment on it...all for increased awareness for Cystic Fibrosis...Thank you from the bottom of my heart...

I'm doing this as I've been asked to speak infront of many thousands of people at an OHL special Hockey game ...we will be saying all names of people (Angels and warriors) who have been affected by CF. I have also been asked by the organizers to share Skys transplant journey/Great Strides videos for all to see for awareness...so to all my friends out there please message me if you can take part or help in anyway...all for Cystic Fibrosis and a Cure!!! (Look for info on Skys site soon ) Love you's!!!

Please visit the website at http://www.skyscarebaresforcf.com/blog1/ or click here.

Celebrate Life,

Alma

Getting Listed for Organ Transplant

2011-10-26T19:08:00.000-07:00

Once again Susan Martin shares with us her writings. She has put her experience of getting listed into words and we wanted to share this with you. If anyone wants to share any of their writings please contact me.

I Got Listed…

Another Step Closer

Ever since I arrived to participate in Duke’s LungTransplant Program August 3, I have anxiously been awaiting the next phase…to be listed. For over two months I watched people come and go. Every day we all waited for news: who got listed….who got a transplant, and who is healed enough to come back to Center for Living and who is finally going home.

On September 29^th, I was notified by my transplant coordinator that I was officially listed with the United Network for Organ Sharing (UNOS) as a bilateral lung transplant candidate. I learned that as donor organs become available, they are allocated to patients on this list according to size, blood type and severity of illness in accordance with the National Lung Transplant Allocation Policy.

Duke has no way of accurately estimating the length of time before donor lungs will become available for me. While I am on the waiting list, they will continue to monitor my condition and provide care for me through regular visits to the Duke Lung Transplant Clinic. The Team expects me to continue to follow the recommendations they have made to improve my chances for a successful lung transplant. If there is any more significant deterioration in my condition, I will be reevaluated of my condition status.

I was given an Allocated Listing Score (ALS) of 31.696 which is based on my physical and lab tests. Most patients are transplanted in the 30-40 bracket. (Wow, my score was 69.) This relatively new system is a more appropriate format to assure the person who most needs the organs will receive it rather than who has been on the list the longest. When donor lungs become available, a “match list” is created to match the lungs with suitable candidates based on blood type, distance from the donor hospital to their transplant center, and age group. If no appropriate recipient is found among the candidates closest to the donor hospital, potential compatible recipients at greater distances will be offered the lung(s).

So…now I am living in the “I’ve been listed” stage of this transplant process. Many things won’t change. I will still strive to live a healthy lifestyle, eating right, exercising at the same daily rate of 3 hours a day. I will be attending any education classes I have missed, and any clinic appointments or tests that will need to be performed during the wait phase. It is possible that a candidate can be removed from “The List”…so I am diligently going to be doing my very best. However, there are many things that WILL change.

I think the first thought, after getting over the shock of finally being listed, is the realization that this is really REAL and major surgery is right around the corner. I feel fairly calm. I can relate this to another time when my life was about to undergo a really big change. When I was expecting and felt my children kick, that is when I realized the blessing of having a child really IS real! That’s also when I started thinking about names, shopping for baby things and “nesting” in preparation for bringing the babies home. For the past week or so, I have begun making lists of things that need to be done, packed my hospital bag, talked to others who have been through the surgery, printed out phone lists and chore list of who to call, cancel appointments, bills to pay, or other needs that my husband / caregiver will need to tend to once we get “THE CALL”.

Life Revolves Around My Phone

I have learned I am on a leash….only as far my cell carrier goes AND within 30 minutes of the hospital. We have been instructed to have our cell phones with us at all times. Of course, my phone has become my new best friend. I sat down and went through all my available ring tones and found the loudest most obnoxious ring I could find. I also raised the volume level up to the highest one available. So…my phone is now ready.

We made sure we had provided my coordinator with every phone number possible. We have a home phone, temporary apartment phone, two personal cell phones – one from our home area code and one from 919 area code and my husband’s work cellphone from the Sheriff’s Dept, which he carries 24/7. Having phones from the two area codes enables people at home to call without long distance charges, as does having one from NC for local business and medical needs. The first week we were here we had to give our number to an office who said “Oh…that’s long distance”, so it just made sense.

I am notorious for losing things…my keys, my glasses, my phone. Last time I lost my phone was while I was using a weight machine at the Center For Living. It slipped out of my workout pants pocket and one of the staff managed to figure out it was mine. What on earth was I going to do to assure I had my phone with me at all times and more importantly that I don’t lose it? Where are those free address labels I always get in the mail at home. One of those would be perfect for sticking on the back of my phone for helping get it back to me if I do lose it. I’m the kind of cell phone user who just keeps it in the car in case of emergency and only my kids and husband had the number to it. I have never used it as a regular source of communication. How am I going to develop a new habit of carrying it with me all the time and making sure it is charged every day. What to do….what to do??? Fortunately, my son had sent me a care package with a lanyard clip from his place of employment and I had an ah-ha moment. I attached my phone to the clip and now carry it dangling from my neck like a big oversized weighty piece of jewelry. In this case, my necklace will be the link to my next phase…”The Call”.

We went to visit a local life and science museum and while inside we became engaged in hands-on exhibits. Both my husband and I got a sense of panic when we simultaneously noticed that our phones, with 2 different carriers, were not getting any bars! We immediately left the building and spent the rest of the time viewing outside exhibits, where we were able to get 1-2 bars. It was a nervous time of constantly checking the phone to monitor reception capability.

We now plan all of our shopping, meals, errands and entertainment around the cell phone. When my husband walks the dog, he carries his phone in case he gets the call. If I am the one to get the notice that my lungs are here, while he and Bobber Dog are on the trail, I can call him and let him know, so he can cut the walk short.

And speaking of dogs…when we came to check out hotels and apartments last spring, we also had a list of 4 possible dog boarding facilities. The funny thing is we visited all 4 – but we stumbled on one only two miles from our new home that we liked way more than any of the others. We brought all our dog’s records and met with the facility owner and explained our situation. We needed a place she could go to when we got “The Call”…even if it was 2 AM in the morning. It has never ceased to amaze me how the Lord’s providence has made all of the arrangements and paths opened to us in wonderful ways. This was one of them. Anyone who owns a pet knows how stressful it could have been if we hadn’t been able to provide for our pet’s needs too!

I have to admit, I have developed a new phobic behavior. I live in a temporary apartment and the phone is typical hotel style “local service only”. There is no caller ID service. Whenever the phone rings I freeze, no matter what I am doing. I gasp a deep breath and briefly hold it. I look to see if my caregiver is close enough to grab it. When I answer “Hello” and in that momentary pause of silence before anyone responds, I shiver and look to God for strength. Relief floods over me when I hear a familiar voice on the other end.

…just in case I get “The Call”

I’ve had another shift in behavior as a result of getting listed. I have found waiting has become an excuse for misbehavior with a claim of “just in case I get “The Call”. We have been told that there is no limit on what or when we can eat or drink, other than after we get “The Call”. At that point we can no longer have anything to eat, or to drink to minimize any problems during anesthesia and surgery. I have also heard from many patients that it is days or even weeks before they are able to eat normal food again. I know there will be dietary changes that must take place post surgery. I have caught myself several times rustling through the kitchen looking for items that will likely be taboo later…like my husband’s Krispie Kreme Donuts and my Brach’s Candy Corn! (Who knows if I will ever be able to eat that again. This might be the last time! I argue to myself.) But even worse, I’ll wake up at midnight and go rustle up a quick healthy bite and drink…just in case I get “The Call”. (After all, there’s no telling when I’ll get “the Call”. I wouldn’t want to wait on an empty stomach. That’s not wise, but tends to be the emotional excuse I blame on my misbehavior.) I’m working on this one…. I know one of our lecturer’s explained it was okay to keep eating normally because from the time we are called to the actual time of surgery hours later, enough of the digestive system has been performed to involve action in the small intestine, so there is little risk of being sick.

I have talked to another person who was listed the same day I was and she said she is going through the opposite effect. She is hardly eating because she doesn’t want to have anything in her stomach…but this week at a dry run (a call to come…but the lungs later deemed not right for her) she realized that perhaps her behavior is not smart. She got the call at 12:00 noon and she had to wait all day and up until after 8 that night before it was determined the surgery was off. She had spent nearly 12 hours without anything to drink or eat. By the time she got home she felt like she was “starving” and ate way too much before bedtime.

My trips home have now come to an immediate halt. We only live two hours away from Duke, but even that is just too far to be able to respond in a timely fashion – which is one reason why I moved to Durham. Now, instead of being able to go home on weekends, I have to have a caregiver with me 100% of the time. Thus….it means having to impose on friends and family who will volunteer to babysit me for a day or two. I have to ask them to leave their home and responsibilities in order to be with me…just in case I get The Call so they can take me to the hospital. I am blessed because all three of my kids have volunteered, as well as a couple of friends, but the unknown time-frame is difficult to plan for. I can’t imagine how stressful it must be for patients who live in other states and even so far as Arizona and California. There is no respite available, no emotional “relief” or physical assistance available.

When I first came to Duke as a pre-transplant patient, we were told that the average time from listing to transplant was 19 days. Just last week, I heard those were old stats and that the current average is 12 days. (I waited 11 days. My quest was getting on the list. That took a long time.) Today, October 12^th is the completion of my 13^th day of being listed. Now being slightly outside the current average, I know that every day puts me closer to “The Call”. So far, this is probably the most emotionally intensive portion of this process. Waiting.

Susan Traxel Martin

Thanks again Susan!

Celebrate Life,

Alma

A day in the life of being in the lung transplant program at Duke University (Part 2)

2011-10-19T11:03:00.000-07:00

The transplant program at Duke has really taken off, and to be quite honest, it is outgrowing the large facility; oxygen equipment and the room to store it in, classroom space that now requires splitting up the groups and caregivers; waiting for equipment to free up. It’s usually not too long of a wait for anything – but there are some times that are less crowded than others. While we were on the floor, a white board has been set up with three groups identified: Walk, Weights and Bike. Each category has 15 or so names listed. The group has been split up into exercise stations that we will rotate through in a clockwise manner. Meanwhile… the graduate group is already at the stations working their way thru, so the next hour will be a bit congested with the two groups overlapping.

As people who know me know…I don’t like being crowded. Closeness with others makes me uncomfortable. Not because I am bashful, or think I am better than anyone, but because I just get overwhelmed with a sensation…like a claustrophobic type anxiety. I don’t like shopping malls, church dinners at group tables, crowded festivals and events or any activity in a group that becomes too crowded. I NEED my space. This will probably do me good in the future when my immunity suppression is in place making me more susceptible to germs, fungi and bacteria. It’s not that I don’t enjoy talking with other people, but I want the openness of space around me…so I tend to sit apart from the crowd. I also tend to be more of a listener and observer than a talker and doer…that is until I am “on-stage”. I love to educate and share information in a structured setting. Therefore, over the years I have made my times alone, even in a crowd, a time of “learning”. I really do like being a people watcher and behaviorist. It’s the “Harriett the Spy” in me.

I have noticed something universal in this new life. There is one very obvious thing that tends to separate and reveal the pre-transplant people from the post-transplant people. And interestingly enough – it is conversation during our workout day. The pre-tx folks are so busy just trying to breathe, they don’t have the breath to chatter with those sitting or walking next to them. Many of the ones who have received new lungs are always talking,,,they hardly stop. It was probably in their make-up to be that way anyway...but it si charmingly interesting to watch them pair up and chatter away, unencumbered by shortness of breath. (Very good observation. My parents would ask me to stop talking after transplant. They were only kidding of course but I just would not stop talking. It was like I was making up for lost time. Just having the energy to talk is a true blessing!) It can be irritating sometimes too though. When the trainers microphone stops working and the “talkers” laying on mats next to each just other keep talking… it’s hard enough to follow the instructions, and sort out the trainer’s muffled voice from all the machines whirring and churning all around us, without having to sort through all the gabbing going on. And when it happens on the track, it causes traffic jams because the talkers block and restrict two or three lanes as they walk side by side which only leaves one for the rest of the pack to single file through. It’s like a log jam on a plume as walkers single file wait for their chance to wiggle by. The pre-transplantees don’t have energy or air to waste on conversation. They save it for when the break times come, before and after sessions, when we slip back into our chairs and knock the oxygen levels back to our resting numbers. So even though the masks and cannulas, or lack of cannula, give the 2 populations away visually, the behavior differences between the two groups is prominently evident. I will be watching to see how this dynamic interaction changes as more of my group gets their transplant and make their way back to the group for post tx rehab. Who then will be the talkers…and who will be the walkers? Should be interesting to see if my observations and guesses prove right.

Always thinking…

Each day we are rotated to start at a different station. So, if I started at the weights today, then tomorrow I’ll start at bikes and the next day my starting activity will be walking. It breaks up the monotony that way. Another help in breaking up the routine is by alternately walking counter-clockwise around the track one day and switching to clockwise the next. If the group I am assigned to is walking, then first we must report in to the trainer desk.

They verify that our tanks have sufficient oxygen in them to get us around track for our duration; if it is set to the proper oxygen level, and if we have our counting beads with us. On our first day we were presented with a cord of approximately 30 little plastic colored beads strung on. I tried using them a day or two. But I found them too small and easy to miscount with. I bought me some larger wooden beads with substance of varying textures, sizes and color tones and made my own counting beads. The trainers set a timer for 20 minutes, unless it is Tues or Thurs, and then we have to walk for 30 minutes. Ugh! I remember my first Tuesday walk…. I thought I would collapse before those 30 minutes were over – but the good news was… I had walked a mile and a half in 30 minutes – or 19 beads (laps).

Walking around and around can get really to be a drudge, particularly for an outside visually oriented person like me, but I try to entertain myself with creative past-times. I noticed a large luna moth dangling on the outside of the window one day, so each time I passed, I focused on looking at it. Each lap the moth became the visual target. Other times, if my caregiver husband was there early for a class and seated in the classroom, I would see him with every pass of the doorway I made, so I started entertaining both of us with smooches blown in his direction…next trip around was a curtsy…next trip was three jumping jacks, or I might throw him an “I love you” in sign language ala gang style etc. I would have a whole lap to think about what my next antic would be and then spring it on him, which helped pass the laps away!

I'm sure I'm not responsible for it in its entirety, but I do know I have been a major contributor to the T-Shirt entertainment circle. There is nothing more fun than to walk the track loop and wait to see what the next T-Shirt says. I try to make each day special as I carefully select a shirt from my immense supply of interesting and unusual T-Shirts. Most I have purchased during vacations, from organizations I supported, from my church or because they would serve as a memory of a special time I had. I love to see what kinds of unusual shirts I can come up with. I have some about trees, trails, rivers and lakes, some about Yogi, Smokey and Capt Kangaroo, Squirrels who are wanted, Bears who are wanted, and wolfs who aren't wanted by many, and of books that I always want. I have cop related shirts, Cartoon Characters and Scenic locations. So far I have only one shirt style from my church, but it was two different colors with the same words. I am seriously thinking about reviving my "Charlie" hats too. Thank goodness I live close enough to haul my collection of shirts back and forth. What will I do during Post Surgery Rehab? Start the rotation all over. Shucks no! I have a whole ‘nother box of T-shirts I have outgrown because of this disease. After surgery, at least for a little while, I will have likely lost enough weight to fit all my Size Small shirts again. Lots of Geocaching and Hiking t-shirt garments to come! I can't wait to bring them all to life again! I love casual work-out garb! LOL

Uh-oh! Problem alert! Someone on the treadmills is wearing strong cologne or body spray. Unfortunately he has positioned himself directly under a rotating fan so that it sends the chemicals in a broad swipe across the track. I can already feel my eyes itching and my airways closing up and I reach for my rescue inhaler. I realize that those who don’t have allergies or breathing problems don’t realize the serious health effects that many perfumes create. It isn’t all perfumes – just ones that use certain synthetic chemicals that compromise our lungs and airways. The reaction is frightening as I begin to gasp for more oxygen to try and balance out the danger of increased shortness of breath. I try to steer myself to the lanes farthest from the poison that attacks me. When I hear people tell me about their headaches and allergies, I wonder if the fragrances they are wearing may just be the very culprit for their own discomfort. I have had to leave businesses, restaurants, doctor’s offices and locations where someone’s chemical fragrance is permeating the room. And large gatherings where folks tend to dress up often present challenges for me such as concerts, church, theater, etc. I had truly hoped the signs that ask for a fragrant free environment might be accepted. If you know there are people who suffer, why would you not? This is twice this man has come into the gym with a strong fragrance on. I have asked for help from staff – but if it happens a third time, I will pray and then approach him myself and ask for his help. I know some may not understand my cries for help, but like I said about helping others through doors, after my surgery, I will never EVER wear cologne again. That is a pretty strong statement from someone who once sold Avon and always wore cologne, but… I have suffered the migraines, the itchy eyes, the swelling of my throat, the uncontrolled coughing. Moving right along…

Some days I would sing songs in my head and wish I had a radio with headphones or knew someone who could teach me to use one of those mp3 thing a ma jigs. I know I am too cheap to wanna buy songs to download, so I daydreamed about burning some of my own CDs instead. After one of my fellow patients had a visit from a rabbi, I got to thinking about other religions. The Greeks use worry beads and Catholics use their beads to do their hail Marys. I have no idea what or how that works, but why not create my own religious application. I decided I would start a lap and pray for a specific person or subject of concern or praise for the entire lap. Now the mind is an interesting thing. It is pretty darn hard to stay focused on one subject for that long of a time without wandering. So this became more of a meandering conversation time with God instead of a traditional prayer. It’s probably the way God wants his children to approach him anyway. So, talk I do, mentally at least, no breath wasted…as often as possible. I wish I could say I was totally consistent with that for every lap, but I can do better. I’m still thinking about getting those contemporary praise songs. I might have a bit more high step with songs to help me get through the walk. I DO love music.

I have discovered that relationships are being developed amongst the candidates and their caregivers. We are each other’s biggest fans and supporters. Every group is unique unto its own entity based on its’ individual evolving make up. Our current group has an active blog that is updated daily, thanks to a willing volunteer caregiver. It shares information about who was listed, got the call, is in ICU or step-down, heading back to rehab, and unfortunately who didn’t make it and died. We are all very anxious to hear the local news amongst our peeps. It is a really interesting dynamic unfolding as people come and go, have tests and hospitalizations. There is always a warm welcome and sincere happiness of learning about those whose lives are becoming better. That camaraderie carries over into our workouts. It is rare to walk a lap and not see smiling faces encouraging me along the way to keep going. I find myself crawling out from behind my wall to thank someone for their encouragement and to give the same boost of encouragement to someone I see growing weary. It only takes a moment of my time, but can provide all the difference to someone struggling. There is no question that some lifelong friendships are being made at the Center For Living.

I have discovered that there really is a transition that takes place with the body when it is being pushed hard. Some call it endorphins kicking in. Some say it’s a “runner’s high”, some call it getting their “second wind”. Whatever it is, I know it is real. There are times when I am dragging butt and counting the minutes (or beads) for it to be over. And before I know it, a little over half way done, a physiological transition takes place. It suddenly doesn’t seem so hard as it did just a few minutes earlier. The breathing, though labored, doesn’t seem quite as difficult. An energy boost takes place and I realize “Hey, this isn’t quite as bad as I thought it would be”. Whatever it is…I still wait to see that smiling face with a clipboard in hand staring directly at me! Whooo hoo! Black horse and a cherry tree! My time has come! I’m gonna be called in. Hip, hip hooray! Nothing compares to that trainer’s “look” and the subsequent sense of relief which follows. That is probably the one time in my day that I smile my most sincerest smile. I fight a slight muscle disorder in my face that causes one eye to partially close and one side of my mouth to relax into a droop. When I am relaxed or tired, I look like I am frowning. Mama’s face did this…and thanks to my overbite, so does mine. I tend to smile more one sided – but I can override those lopsided jowls of age with a tad bit more muscle effort. The trainer’s signal into the pit stop is always the best initiative I know these days! I count my beads and stick up my index finger for my 02 readings and promptly collapse in my chair to recover.

Next stop is the weight section and I don’t mean Biggest Loser weigh-in. It’s power lift time! There we will alternate days between working on our upper body and lower body. The physical therapist has evaluated our abilities and developed a weights plan to gradually build our strength up. We have about 4-5 different machines for upper body and 4 more challenges such as lifting hand weights, a cane, squats, etc. The next day involves much of the same designed for our specific lower body needs. We stretch all the muscles in our legs which is one of my favorite parts because I can look
outside the window at the woods, birds and skies. I have to also stretch my hips which have been under arthritic attack for the past 8 years…and walk up and down stairs, stretch and strengthen other leg muscle groups. I have very strong legs so I tend to do a few more reps then asked to do, however, this my third week. No two plans are the same. We all have our own individual starting weights and reps to do.

I am finally reaching the point where it is getting harder to do. I enjoy pushing myself. I know I am an over- achiever, but I had a lot of base strength that was wasting away; it has been responding quite nicely this month. I am pleased. I’m also glad to see how good of shape I really am in. I’ve impressed myself, to say the least. I know I wouldn’t have pushed myself quite this hard at home, and they haven’t pushed me too hard either. I have to find that balance where I slow down and let the muscles do things right. I recognize this and know I have finally reached that point. Now I will be listening more to my body so I don’t get hurt. I proved to myself I can handle this as well as I ever did…and now I have to admit that I am sick…and not to push too far. It is a process…a balance. And I am right where I am supposed to be right now. I KNOW I am strong enough for surgery and an excellent recovery. I have made it my priority to achieve this and I am satisfied that I have done it. Now, I just need to maintain it. I don’t have to prove anything…until it is finished! ;-)

I usually don’t need a recovery rest after weights. I just swing by my seat long enough to grab a few more swigs of water and maybe a bathroom break and then off to find myself a bike. We call them bikes, but they are actually something called Nu-Step. We are seated in a recumbent position. Just like sitting in a car. Our feet are extended onto foot pads. Instead of rotating our feet in circular motion like a bicycle does, we use stepping motions to apply pressure on the mechanism that measures our distance, level of resistance, time, watts produces, steps taken, etc. There are also two handles that some people use to help strengthen the arms and assist with the force requirements. We do this for 20 minutes. I used one of these at Morehead Memorial Rehab so I was quite ready to start this my first day at Duke. I already knew how to set it up for my own personal settings…but the one thing I didn’t count on was the way Duke wanted me to use them – with my feet only. No hands to help supply some of the energy needed for rotations. This meant my legs had to do all the work. Although they started me out fairly low, it was no time before I was put on level 4 for 20 minutes. Next comes level 5…..yowza! I am dreading that! I have no idea where I will be next week. Thank goodness I have hit day 17. Only 6 more days before I graduate. It can’t be too much harder! I’ve gotta admit, wiping off equipment is not one of my most favorite parts of the day. The bleach wipes are very strong and irritate my eyes and airways. I try to get it over as quickly as possible, but if I am already having a bad breathing day, I will ask a staff member to help me and do it. They are always quite helpful that way.

I hate to ask someone to do something for me, but I have learned the hard way I have to admit I need help – or suffer the consequences. This disease has made me dependent on others…not somewhere I ever thought I would be. And it is going to get worse once I get “The Call”. It is a humbling time. I take nothing for granted. I feel very, very blessed that I have been offered this opportunity of healing and pray that God continues to strengthen me as I strive to do all I can to overcome this time of trouble.

Speaking of asking for help…there is a group of people who are actually our unsung heroes. They are our caregivers!

These people care enough about us to place their own lives on hold in order to support us. They have to be strong for us. They must make sacrifices for us: willing to move away from home, family and friends, they will be asked to provide care for us, coordinate our days, drive us to and from the Center for Living, to doctor appointments, attend lectures, go shopping, carry our heavy loads, do laundry, clean up behind us, and then….sit and wait. Caregivers need strong emotional health and nerves of steel in order to put up with the stress and moodiness of their patients. They must be patient and forgiving. Since I am still in the pre-lung status - I can’t add all the additional chores they will be required to perform after our surgery, but I do know they will be our nurses; changing bandages, organizing our pills, injecting medication, using feeding tubes, and above all…worry about us. My husband Danny is here in Durham with me and I would be lost without his love and support. He IS my hero. Without him, I would not be able to be here. Yes, our caregivers are responsible for us; what an incredible commitment and selfless giving act of kindness they are making to help us become well again. God bless the caregiver!!

(God bless the caregivers, especially my mom. She had to go through this with my dad 10 years ago next month and this past May with me.)

Another support system that becomes very important to us is our friends and family from home. What would we do without the prayers and well-wishes from them. The transplant team even states the importance of their involvement in achieving motivation for compliance and healing. Every day I find myself in gratitude for my loved ones as I receive cards, emails, Facebook comments full of encouragement and support. Each friend reaching out in sincerity brings a broad smile to me and helps me stay strong. Thanks everyone for your gifts of encouragement!

Okay, so I’ve done all three sections. It’s almost time to go home, that is, unless we have a lecture. Duke has really gotten their act together. Transplant Team members, of all professional walks, come and present lectures to help educate thepatients.

I have spent a great deal of time these past couple of years reading research notes and articles about COPD and Lung Transplants, but the specifics of how things happen were still a mystery to me. Through these classes, we are being shown different phases of what we will see, hear, feel, encounter as well as some of the more difficult subjects to hear…like what could go wrong. We don’t want to dwell on them… but if after transplant we require having tubes stuck in our bellies and intestines for feeding purposes, or a tracheotomy to help us keep our lungs inflated and breathe stronger, then we – patients and caregivers – won’t be so scared and startled when a nurse or doctor informs us of the need. A lot of unnecessary anxiety is being reversed through the exposure of these lectures. As a public educator, I am very appreciative of this style of preparing patients. A more informed camper is a safer and happier camper.

There are lectures designed for pre-tx patients and post-tx, as well as for caregivers. Classroom space prevents us from being together with our caregiver for lectures, which I find a bit unnerving because my caregiver is missing out on some of the stuff I am learning. So, I started carrying a recorder with me and bringing back the handouts so we can discuss them together. I feel bad for those who can’t share with theirs. There is just TOO much information to try to remember and talk about later. I also realize that there is probably another reason they split us and that is to give each group the info they need. Caregivers have to be prepared for the irritable patient and the psychological approach to these medical treatments whereas the patient is medicated and probably couldn’t really give a damn while they are under morphine – until they see the procedural evidence in a mirror later~ 100 staples, or however many there are, can be enough to make anyone irritable. LOL

These are the lecture topics we’ve had to attend (and I thought it was bad at work!) :

                    What to Expect During Transplant

                    Meds

                    Transplant School

                    Anatomy & Physiology - Parts 1 and 11

                    Tube Feeding

                    Oxygen Therapy

                    Scar Mobilization

                    Diabetes

                    Osteoporosis

                    Speech Therapy

                    Caregivers Support

Phew. Are you tired yet?????

So, now the day is done. In leaving, steps are reversed. We swap out our oxygen tanks, toss our dirty towels in the bins, peel off our gloves which are literally dripping wet with sweat, gather up our personal lunchboxes, belongings and make our way back to our vehicles or wait for our ride. Since I preplanned my departure, knowing I’d be hot and tired, the walk down hill to a car parked in the shade is almost enjoyable. I know in just a few minutes the air will be cool and I will be pulling up in front of my apartment. I will be hungry, ready to eat and most likely it won’t be too long before I fall asleep.

The first couple of weeks at the Center for Living were pretty rough for me. I was doing some traveling back and forth on weekends or spending time with loved ones, when really I just needed to rest up from this new strenuous activity. My PT time is a full job that I have to plan and prepare for daily with diet, rest, medication and energy. This is above the normal tasks of eating, cleaning, and entertainment. I have to plan my days carefully, when and where I eat, how much, when to take my medicine, what to do when things go wrong…like insomnia. I guess the change of location, unfamiliar surroundings, new routines, exercise energy requirements were really shaking me up hard. I fought hard physically and was mentally drained. I was becoming overwhelmed. My brain was racing around with thoughts trying to absorb the new environment, things we were being exposed to and demanding schedule. Ultimately I had to ask for some medical intervention…and for those who remember…it’s not quite like I “take Sominex tonight and sleep” – it’s better! I don’t feel drugged…or tired but I get the sleep I need! I am very grateful to the medical team and to our coordinators, who keep us going through this process.

Being a major surgical candidate is no light event… like perhaps having a knee operated on… or having a neck operation.

Oh, don’t get me wrong. I don’t make light of either of those procedures. But those of us undergoing a transplant are not having a surgery that will ultimately heal and be better and forgotten because it makes us well. Nope. We will still be sick after transplant. It will be a different kind of “sick” – and we are only beginning to face the challenges that will continue the rest of our lives. We don’t just wait for our scars to heal and then we can breathe, as if nothing ever happened. Oh, yeah, there will be glorious breath…. lungs filling with air, supplying our bodies with the oxygen it needs.No more oxygen tanks…no more coughing spells, no more suffocation. But rejection is always just right around the corner…it’s mask of death peeping thru the curtain. The lifetime of medication, other subsequent health problems that may accompany our new world, like diabetes, kidney disease, steroid ballooning, are ever-present. Having regular bronchoscopies, taking our weight, temperature, blood pressure and spirometers every day, the added care needed to protect our new lungs from
illness, debris, fungus…will always be crying out to us. There will never be fully any true time of rest. All we have done is postponed the inevitable. We hope that future patients might benefit from the research that is done through our journey. We cling to the time we have been granted to learn the true meanings of life and we struggle with the knowledge of mortality.

The scars may be healed, but the “gift of life” is on a clock that is ticking. This gift’s original owner has already gone on ahead of us, and it is only time before we too will be reunited with our donor. I know fear will come to many of my peers after surgery and they will live their post-transplant lives in the shadow of that fear. I choose to live my life looking forward to the future. I have a future here on earth…but I also have a future after life as we know it. I love the thought of being able to climb mountains again, and travel to visit family and play with children in the woods. But I also look forward to being united with Christ, without whom I would not have this hope.

I cannot fathom how people who have no strong family support and faith in God ever make it through this medical process. The stress has to be awful; the unknown, overwhelming. I am so fortunate to be loved by God. I am amazingly calm, at peace and ready to follow these medical people through this process. The hand of the Lord is upon His servant and I believe that with every portion of my being. Healing miracles by God come in many forms, including the hands of surgeons that He grants blessings upon and through. I have been walking in the valley of death for several years now… but I will receive new life. Whether that life will be here on earth or in heaven with Christ, I know that His plan for my life will be fulfilled.

I am humble and sincere when I beg Him to use me in whatever means necessary in the remainder of my life to achieve His plans. I trust Him with my life… with the very breath that He first breathed into my nostrils over 55 years ago. To Him be the glory…forever and ever, amen. And I hope I can shout that from the mountaintops, or at His feet…it makes no difference to me!

Susan Traxel Martin

(For my mother, on this date of August 25, 2011, which would have been her 90th birthday)

2011-10-17T11:27:00.000-07:00

Great news, moving forward my bronchs will be done an Interventional Pulmonologist at Duke. Here is what I found out.
Interventional pulmonologist are kind of in the middle of traditional pulmonologist and thorasic surgeons. Interventional pulmonology is a fairly new subspecialty of pulmonology, whereas specially trained pulmonologist with a focus on diagnostic and therapeutic techniques in airway and pleural disorders to treat many patients traditionally served by thoracic surgeons.

Here is a link to Duke's Pulmonary Intervention Program and more importantly for me is the following:
In this program, Duke has a dedicated bronchoscopy suite, fully equipped with the most advanced flexible bronchoscopic tools, fluoroscopy, digital imaging, and pathology support. The suite is staffed by full-time bronchoscopy staff with advanced nurses and respiratory therapists specifically dedicated to assisting with bronchoscopies. (Direct quote from the site.)

Celebrate Life,

Alma

A day in the life of being in the lung transplant program at Duke University (Part 1)

2011-10-12T06:45:00.000-07:00

I recently read a detailed summary of a day at The Center of Living at Duke University from the perceptive of a patient in the lung transplant program. It reminded me of my days there from 1/27/11 through 5/3/11 prior to my lung transplant. I relieved my days so much that I asked Susan Traxel Martin, the author of this document, if I could publish this on my blog. I am going to post this in a few sections due to the length. However if you ever wonder what a day is like for people in the lung transplant program at Duke University or you know of anyone in a pulmonary program this will give you an insight as to their daily challenges. In my opinion, it does not matter if you have COPD, Cystic Fibrosis, Pulmonary Fibrosis or any other lung disease. It seems that we all experience very similar physical and mental challenges at The Center for Living as mentioned in Susan's summary. Thank you Susan for putting these experiences into words!

I recently began actively making preparations for double lung transplant surgery by starting the intensive physical therapy program at Duke's Center for Living. All lung transplant candidates are required to attend 23 full sessions of Duke’s specialized and personalized exercise program, which prepares patients for the actual surgery and recovery. These sessions are from Monday through Friday, 12:30 to 3:30, and then 2-3 times a week we stay an additional hour for lectures. Many of the exercises are designed to strengthen the body in preparation for specific physical tasks and activities encountered during the time patients are in the ICU and Step Down “In-patient recovery stages” of post-transplant hospitalization. For example...making us do squats will enable us to go to the bathroom by ourselves. Bet you never really thought about how strong your legs need to be in order to lower and raise your body from a toilet seat. Actually, by the time patients find themselves in end-stage lung disease, even the simplest of tasks become enormous mountains to climb over. Things we previously took for granted such as washing our hair in the shower, now take monumental effort and we are exhausted after bathing, brushing hair and re-dressing. The simple act of tying sneakers or picking up something dropped can be a challenge because bending over is quite difficult for COPD patients due to the over-crowded conditions of our chest caused by the expansion of diseased lungs.

So... I am now on day 17 of 23 required sessions before transplant. I was fairly strong to start with, unlike many other patients who have different medical diagnoses such as cystic fibrosis or pulmonary fibrosis. No two people experience the same thing or are on the same level. I do feel quite fortunate to be as strong as I am. I have had to stay in shape for my job as a park ranger, training for personal protection and physical endurance of foot patrols, and walking boundary lines. Of course I have been on light duty for more than two years, and the prednisone steroids I have had to take caused me to gain weight and lose muscle tone, but it is all coming back nicely and the weight is slowly leaving. I sometimes feel like I am on the Biggest Loser show...only my program is The Biggest Winner Club of Duke Lung Transplantees!

Our day's journey starts by getting ourselves ready to go to the Duke Center for Living’s Health and Fitness Center. We start hustling around in our temporary homes around noon to get ready to go. We either want to be able to volley for a good parking space, or be dropped off by a caregiver. I like to park in a place that is shady when I come out in the late afternoon, so I plan ahead. I tend to get there a bit earlier than most of the afternoon crew. The place is already hopping with folks in other activities so the parking lots are nearly full. I have to trudge up the hill (in order to leave handicap spots for those who really struggle or require assistance in mobility). I recently decided to buy my own mat and leg weights and dumbbell weights, so while making my way up the hill I am carrying my mat, a bag of the HEAVY weights, and of course, my ever-present backpack with my oxygen tank, books, ID card, snack, water bottle, gum, therapy stretch band, extra cannula (nose hose), loop of beads, chewing gum and whatever I have brought to entertain me for the next 4 hours. It makes for a long and struggling walk and I am usually majorly outta breath by the time I get to the building. However, I look at the bright side. This extra 25 pounds I am carrying around will help me strengthen bone density and help fight the osteopenia a bit more than just taking calcium and Vitamin D. For someone who never knew what a calorie was or cholesterol, nutrients and supplements were up until a year or two ago, I sure have come a long ways into knowing stuff that helps keep me strong and healthy! Love my almonds, walnuts and pistachios (but do wish they were Reese’s Pieces, Brach’s Candy Corn and caramel Rolos instead)! There is another plus to hauling all this weight around on my back and that is to help strengthen me for my celebration mountain hiking goals post-transplant next year. I’ve already signed up for The Great Girl Scout Hike on a section of the Appalachian Trail. I must be a glutton for punishment! LOL

There are approximately 35 people in my current "23 day" group consisting of both pre and post-transplant patients. There are another 40 or so who already graduated from the initial 23 day requirement, but are taking advantage of a graduate program to help them stay in shape until they are either listed or transplanted, or well enough to leave. The group size is always changing as people come in to the program, get "the call", or return after being released from the hospital for their final 23 days, come for tests, medical issues, etc. Some people have to have additional surgery to help protect the lungs through a stomach wrap procedure before they are released. This helps eliminate acid reflux from damaging the fragile lung tissue so they will continue in the graduate program if needed. Everyone HAS to do the “23 days” both before and after surgery. The graduate program on both ends is optional but highly recommended to remain a viable candidate and make for a speedier, healthy recovery.

Arriving at the building breathlessly, I pray someone sitting by the door will press the automatic door pad to save me the extra steps....and I am struggling with breath too much to try to pull the heavy doors open too. Great! Someone is leaving and they can hold the door. I can tell you one thing, I will, from here on out, ALWAYS, ALWAYS, ALWAYS hold doors for seniors, people with disabilities and anyone who looks like they could use a little assistance. After transplant I will even LOOK for opportunities to help someone in a parking lot, by volunteering to take the cart back. Man, oh man, is that ever hard for me after unloading groceries or packages at a store into my vehicle. IT is so exhausting. By then, I am feeling like I am suffocating and can’t take another step. I can barely make it to my car seat in order to catch my breath. I have had about 3-4 people see me struggling and offer to help...which was VERY hard to accept - but I will NEVER take opening doors and pushing carts for granted again. (I put this in bold because this paragraph moved me the most. It is a sentiment I felt almost every day when I walked through those doors. But don’t worry, post-transplant you will be more than happy to open those doors on your own!)

After checking in to the center by scanning my ID card, I grab a couple towels, head to the women's dressing room to weigh myself, stop by the counter and get a pair of medical gloves (required to help keep us free from passing or getting germs from equipment). I look for the milk crates filled with clipboards and attached pencil on a string and check to see if the pencil stub is relatively sharp, if so, I claim it as mine. I do wish the pencils were sharpened more regularly. Thank goodness knives are not banned in the gym! I, and others, reach for a pen-knife on occasion. How would we ever cut up our apples and oranges and sharpen our pencils? I must admit as I watched one patient sharpening his pencil today, I wondered if he would ingest lead at snack time! LOL Okay, so they are made of graphite, not lead…but it’s what I thought!

I have to swap out my oxygen tank for one of theirs because no two oxygen delivery styles are exactly the same. Duke says we are all required to use their "E" tanks for convenience and quality assurance. Some people use walker/seat combination carts for stabilization, which will also carry their tanks, while the rest of us have to drag our tank burdens behind us. Depending on lung function, some patients may need to haul more than one tank at a time in order to sustain the high level of oxygen needed. If we are lucky, the two large class sizes and patient level make-up will leave enough equipment for everyone. Otherwise, some equipment swapping will be done during the floor exercises. That's another reason I like to get there early. I can get a tank cart with a long enough handle to make my dragging posture more comfortable, and not require me to slouch because it is too short. I learned that lesson the hard way; the adjustable handles are not always what they seem to be. It takes a few seconds of unwinding myself from the length of hose I am trying to connect and fasten to my face. I have grown very comfortable to this medical contraption and it feels really weird if it isn't on. I can always tell when something is “wrong”...not to mention the fact that long term deprivation of Oxygen leaves me sucking for air a bit more passionately. I make haste to swap out.

Once all that is done I take a seat alongside the other patients and wait for the staff to begin their routines. They come by with our medical charts in hand and start drilling us with questions.

"Do you have a clipboard yet? Are you in pain related to this program?

Where? On a scale from 1 - 10 how would you rate the pain? Do you

have to take your blood sugar? What were your readings? How much

did you weigh today? What level oxygen are you on right now? Give

me your finger.(How much is my oxygen? I wonder.) It's 96 percent.

That's pretty good (I think: “96%? Well, you shoulda took it when I

stumbled through the door a little while ago!!!!” ) Okay, let's get your

blood pressure now."

And so it goes...until all 35ish of us are done.

If check-in is done quickly, we still have to wait to get started on our exercise. The graduate class is out on the floor and we have to wait until they are finished. Once we all see their group stand and start gathering up their belongings, it looks like a homestead stampede is occurring. Movement escalates as the seated group begins to rise and shuffle their way towards the center gym floor. My group is so intent in seeing if they can get a piece of prime real estate on the floor and is the cause for the jam. What inevitably happens is that one group is trying to get in between the lines of machines while the other group becomes trapped and blocked as they try to exit and wiggle past.

The first group doesn't have to clean and put away their equipment when they are pooped from the workout...I guess that is a privilege of being a graduate. But after a couple of classes of wiping down other people’s equipment, spreading towels out on the mat and afterwards juggling to put it all away…I just went to Wal-Mart and bought my own weights and mat. Voila! I no longer have to worry about spreading my germs and can save my energy to use somewhere else. I don’t have to wait in line to put my stuff away. I can go sit and start my snack while others tend to their clean up. Selfish perhaps, but I just see it as being wise. I plan on exercise being a major component in my future, so buying the equipment is an investment towards my future health…in more ways than one!

And now the REAL work begins.

On day number one, we have to just sit in a chair and observe everyone else. That way we will have a better time of understanding instructions the following day while lying on the mat. On my first day, I chose to raise my arms and legs along with the group while sitting in the chair. It was hard just sitting. I was really antsy to get down on the floor too. I have been doing exercise at home on my treadmill and bike, workouts with Christian Fitness TV and tapes, and rehab one day a week at my local hospital for two years…so I was really raring to start.

We all strap on leg weights…I am pretty strong so I started with 2 lb leg weights instead of one pound and I just got moved up to 3 pound this week. They are NOT designed for walking…they (and therapy bands) are designed to provide resistance during leg lifts and ankle rotations. We also use the dumb bells to increase our arm strength. We have trainers who guide us through a solid non-stop one hour workout. Every day a different staff member leads us thru the workout from their mat in the middle of the gym, which is surrounded by a circle of dozens of mats spread more than arm distance apart. The patients tend to set up where they find space and after a couple of days they inevitably lay unspoken claim to their turf. I flipped and flopped the first week or so while I tried to “find” my space. Some locations I laid my mat under were in direct line of the air vents. Anyone who really knows me KNOWS I can’t stand being cold. I survived the exercises by placing my towel over me like a blanket. I used more calories and did more wiggling trying to adjust the towel with each exercise than the weights probably used up. LOL Other times, I found myself directly under a light. Again, anyone who knows me KNOWS bright lights hurt my eyes. – To get enough light needed to brighten up the gym requires way more “Brightness” lumens than I am comfortable with. Even with eyes closed it seems to penetrate the fine skin of my eye lid. I didn’t want a headache, so I used my stretchy thera-band as a pseudo blindfold by draping it over my eyes. If it was thera-band time…I used the towel that was supposed to support my head as a face covering instead. I think the staff finally figured it out because they use mood lighting most of the time now. (Thank you staff, especially David!)

Back to the trainers. Duke Center for Living staff are the most awesome people I have ever met. They are helpful, knowledgeable, and determined to help you have a successful operation and recovery. They KNOW their stuff. I like the fact that each day a different person leads the floor exercise instruction because each has their own specific style and area of the body they like to work out on. The routines are all fairly similar, but the trainers add their own twists. We have days that seem tougher than others….because some trainers are “grueling and unmerciful” (again, thanks David) while others use a slower pace with more breathing opportunities built in. But you know the saying, no pain…no gain. That goes for sweat too! I finally found out what that is! I have noticed how attentive the staff is to our needs: always checking the level of oxygen in our tanks, asking how we are doing, providing smiles of encouragement, assisting with equipment. They just represent customer service at its highest levels. I have NEVER seen anyone grumpy or upset. They all seem to really enjoy their work and it shows.

I have to laugh sometimes because you can really tell that, although they are all respiratory /physical therapists, none have them have apparently ever been short of breath before. They are “normal” breathers and sometimes their instructions reflect this “handicap” of theirs. (Ha-ha, normal breathers are handicapped. I like this.) I mentioned to a fellow patient one day that I love the work-outs but the breathing rate is a joke. Who amongst us can honestly breath like them at our stage? They like to give us step-by-step instructions via microphone so we all can lay and do it without having to look to see what they are doing. The instructions are, for the most part, well-choreographed. It is very important that proper breathing be utilized instead us all developing habits of holding our breath during difficult times, so they provide breathing guidance.

I don’t know if you, the reader, has ever dealt with breathlessness, but in order to balance our oxygen and carbon dioxide exchange, particularly for COPD patients, it is important to use diaphragmatic breathing. We breathe in through our nose for 2 counts (because we don’t have enough lung volume space left for taking any long deep breaths) and we exhale for 4 counts through pursed lips, which provides a positive pressure. This breathing technique linked together with tightening of the abdomen during the inhale helps strengthen the diaphragm.

Test your own breathing. Place one hand just below the rib cage and at the belly button. Only the belly should be rising and lowering – not the upper chest. Make your hand rise when you inhale deep through your nose and then drop when you exhale through pursed lips. That is the proper way to breathe. Breathing in the upper chest area requires using auxiliary muscles in your neck and shoulder and invites rapid shallow breathing, which can lead to shortness of breath.

The trainers will tell us to take a deep breath the whole time we slowly lift our leg (4 sec)and breathe out while we slowly lower our leg, or arm. The problem is they want us to take in a long 4 count breath…and a long 4 count exhale. Meanwhile, we are gasping for breath and literally taking two breath cycles to their one…. It’s actually kind of comical as I observe new arrivals struggling to breathe at the instructed rate before realizing they have to breathe with their own pursed lip breathing pattern in order to prevent panic shortness of breath.

So, long story short…we turn out heads left and right…up and down; raise our trembling arms and legs; march while laying on our backs with our feet up in the air; raise our butts and make the best arch bridges that even the US Army Corps of Engineers can’t compete with, and do whatever our trainers instruct us to do…within reason… for one entire solid hour until “It is finished!” Okay, so it is not aerobics or cardiac stress we are engaging in, but by the time we finish, I know I have stretched muscles I never knew I had and in some way, it feels pretty good. At least right then. Now tonight, I may think differently. I lay there and wonder how did I ever find myself in this predicament, but I know it is all for my own good. What we sow….we reap, and I am paying my dues for some unhealthy eating and lifestyle that caught up with me in a big way.

After floor exercise, we (or rather everyone else) must wipe down their equipment and mats and return them to the storage locations. It is not easy to pull an oxygen tank AND juggle a couple of mats, two leg weights and two hand weights and stop and clean them before hoisting them up on the storage rack. (Yep, I figured there would be a whole lot less energy involved in rolling up my own personal germ-covered mat real quick and carrying it by the strap over my shoulder. I’m also not real patient when it comes to waiting my turn and fighting for position…)

We return to our seats and take a break. Many folks like to pull out an energy bar, a bottle of water, some fruit or some yogurt. A little pick me up. I generally just swig a little water, gnaw on a couple of nuts and I’m ready to go. I’m on a roll, I want to get this stuff done, so I can go home and sleep! (YES, sleep!)

This is part 1 of a day in the life... This is only the first set of exercises as there are a few more. To be continued on the next post.

Celebrate Life,

Alma

Fundraiser to benefit 911 operator in need

2011-10-11T07:33:00.000-07:00

The Marietta Daily Journal -published this article about a fundraiser to benefit Mike Keim. He is a good buddy of mine and I will soon post a short bio of him on this blog. You can read the entire article below or just click on the link provided below. There you can leave comments if you would like. You can also leave comments on this blog or Facebook.

Mike I hope this is a very successful fund drive for you!

http://mdjonline.com/bookmark/15978053/article-Fundraiser+to+benefit+911+operator+in+need#.TpEPaTpbiOM.facebook

October 08, 2011 10:39 PM MARIETTA — As a Cobb County 911 operator, Michael Keim has helped save plenty of lives. Now he’s in a fight for his life, and his colleagues, who have become as close as family to him, are doing all they can to support him. The Chick-fil-A at 2005 Macland Crossing Circle, at the intersection of Powder Springs Road and Macland Road, will host a fundraiser for Keim from 4 to 8 p.m. Tuesday, when 10 percent of all sales will go to Keim’s transplant fund. Keim, 27, has been a 911 operator since September 2004. He’s been on medical leave since last November, when he and his mother moved to Durham, N.C., where doctors and surgeons at Duke University are preparing him for a double-lung and bone marrow transplant. The organ and tissue must come from the same donor, and Keim’s family says he would be only the second person in the world to receive such a transplant. Keim was diagnosed with a rare autoimmune disorder as a child, and became extremely ill about 18 months ago. His sister, Angie Vanegas, said that is when his doctor, Robin Levy, referred him to the Duke program. After extensive tests, Keim joined the program and relocated to Durham for more tests, physical therapy and to wait for a donor. “He knows no stranger,” his sister said. “He has a ton of friends there.” Between doctor visits and physical therapy, Keim — whom his friends lovingly nicknamed “Pre-K” due to his small stature — spends his time reading and window-shopping. He enjoys politics and is a Herman Cain supporter. He and his mother are staying in a house near the Duke University hospital, though since he’s been in Durham, he has been hospitalized at least three times. As a 911 operator, his work ethic has always been rock-solid, colleagues say. Eulalie Long, who worked the same 12-hour day shift with him for years before she was promoted to supervisor, said he always pulled his weight and then some. “For the last three months before he went to Durham, he was wheelchair-bound. His lungs were working at 40 percent and he was on oxygen, and still he came to work,” said Long, who said Keim is like a brother to her. “He did a lot more than others, but he’s always had that work ethic. “He suffered for such a long time, but you’d never know it,” Long said. “He doesn’t want anyone’s pity, or to be a bother. He wants to live as normal a life as possible.” Keim is a 2002 graduate of Hiram High School and owns a home in Paulding County. He is one of four children of Ruben and Helen Vanegas. The family is members of Grace Baptist Church in Paulding. Keim got choked up during a telephone interview about the fundraiser. “As much trouble as I cause them at work, I’m blessed to have such friends,” he said. “My goal is to get well and recover so I can repay it for someone else someday. It’s a rough battle, but I’m still fighting.” Every few weeks, his dad brings his sisters to Durham for a visit, which he said “brings back normalcy.” “Hearing my sisters argue over who’s wearing whose clothes — those are moment I cherish,” he said with a laugh. Becky Johnson, another colleague at the 911 center, helped organize the Chick-fil-A fundraiser with her twin, Beth Hunter. “If you know Mike, you love him,” she said simply.

Tax-deductible donations may be made to the National Transplant Assistance Fund online at www.ntafund.org for Michael Keim, or by phone, (800) 642-8399. Checks may be made out to NTAF Southeast Bone Marrow Transplant, with the words “in honor of Michael Keim” in the memo line, and mailed to NTAF, 150 N. Radnor Chester Rd., F-120, Radnor, Pa. 19087.

Celebrate Life,

Alma

2nd Pneumothorax

2011-10-07T18:42:00.000-07:00

Unfortunately, I just experienced another pneumothorax, a partially collapsed lung. It was not as bad as last time, none the less, it still was not a pleasant experience. I had felt some shortness of breath when walking but that is normal after a bronchoscopy.

The noticeable difference from the other bronchs came when l i went to bed. I started coughing a lot. It felt just like prior to my lung transplant. I just did not stop for about 30 minutes. It hurt my lung when I would cough. I could literally feel the outline of my lung with every cough. I continued to cough during the night but it was intermittently. The next morning I coughed and it did not hurt as much as the night before. I would cough when I walked some and I had a little shortness of breath.

My post transplant coordinator happen to call me and I told her what was happening and she said for me to stay very aware of what was going on because a pneumothorax is a side effect for some during bronchs and to let her know how I was doing later on during the day. Throughout the day I noticed that I was having problems walking and then when I went up 4 stairs and I had to stop was a MAJOR SIGN that something was not right. It was very late when I got home so I emailed my coordinator and told her that I was going for a chest xray the next day and she agreed.

The chest xray results were a pneumothorax. The first thing I was told was to go the ER and that they would have to place a chest tube in me. Transplant patients avoid ER rooms because of all the bacteria and sickness that could be airborne there. The second option was to try and aspirate my lung in hopes that they could get the air out. If all went well I could escape a hospital stay and a chest tube. The procedure to be done is pleurocentesis (a procedure in which a lung is punctured to drain fluid.) This procedure can also be done to remove air from the cavity as well.
I sat on the doctor's examination table. He was feeling the tissue between my ribs on my upper chest. That was uncomfortable so I knew I was in for a treat. He then covered the area with a surgical drape that had about a 4 inch circumference. He then proceeded to inject me with lidocane, a numbing agent. It was two large needles worth. This needle was about 6 to 8 inches long and it went all the way into my chest. YIKES, it hurts just saying it. Well it did it's job because I did not feel the 2nd needle at all. He then took a scalple and nicked my skin. A very tiny nick. Then came the catheter and introducer. The catheter was 8 to 10 inches long and that went in me as well. Now this hurt but later on the doctor said that the catheter was rubbing along my rib and that is why it hurt. It also felt really weird. It was like my lung was being tickled. Just a really weird sensation. Anyway that was the rough part. Next came the suction. My mother was there throughout the entire procedure. The doctor even said "I will blow the air toward your mother" and he did. You could hear it. It seemed to be a lot of air. Mom said he kept taking out air until the tiniest amount of blood came out. He had me take a deep breath and blow it out hard twice. Then he put a gauze with medication on it and put a lot of pressure on it. Then he had my mom hold it and put pressure on it while he got some more gauze and bandaged me up. This procedure saved me from a hospital stay and from getting a chest tube inserted. I can keep my weekend plans! Life is GOOD!

Celebrate Life,

Alma

My pulmonary doctor at Duke is on you tube...

2011-09-11T11:19:00.000-07:00

Rare organ transplant gives single mom new lease on life

Dr Zaas speaks on this incredible triple organ transplant recipient. She received lungs, heart and liver from one donor.

http://youtu.be/vhHHLf2yZmY

Celebrate Life,

Alma

Happy Birthday to me...I celebrate 3 birthdays now

2011-09-07T18:18:00.000-07:00

Today I got to celebrate my birthday. My first birthday after my 3rd chance at life. I say 3rd time because I survived lung cancer back in 2005 and now I received a lung transplant on 5/3/11. I have 3 birthdays now. However, this one is different. It is very strange to think that this was a birthday that could have never been for me if it wasn't for the organ transplant organizations here in the U.S. I am grateful to the organ donor family and to God. I am also grateful to my parents who were with me EVERY step of the way. I am grateful to my family, my friends, my co-workers and my caregivers. I am grateful to the WORLD! Thank you to each and every one of you. Life is good and breathing is better than chocolate!

Celebrate Life,

Alma

Heart Transplant Recipient - Ironman Triathlon

2011-09-05T16:52:00.000-07:00

Ironmanlife: Racing Thanks to a Heart
The best part is that his t-shirt reads - In memory of my donor.
http://ironman.com/columns/ironmanlife/kevin-mackinnon-profiles-one-of-the-athletes-set-to-compete-at-ironman-70.3-ireland#axzz1X42GdcoL

A clinical study for Idiopathic Pulmonary Fibrosis (IPF)

2011-08-28T18:32:00.000-07:00

Novartis is enrolling adults with IPF in a study. They are testing the safety and effectiveness of a new medication. There are various locations throughout the US. You can contact a study site here or click here to find more detailed information in www.clinicaltrials.gov.

Pneumothorax – Collapsed lung #2 of 10,000+

2011-08-18T12:22:00.000-07:00

I just had a bronchoscopy on Monday. I got out of the procedure around noon and went out for lunch because my appointment with the my doctor was at 2:30. While we were eating I felt some shortness of breath and I asked my mom if I had experienced this last time I had a bronch. She said yes but so I let it go although it odd to me. We proceeded to go to the doctors office early upon my request because I just did not feel right. In the parking deck of the hospital I took my oxygen level with my pulse oximeter and it was at 92. Now that is not normal at all. I am usually 97 to 100%. I told my parents that I needed a wheelchair and so I was on my way to the clinic. In the walkway connecting the parking deck to the hospital I took my a reading of my oxygen again and it was down to 86%. Now I stated that I needed oxygen. Dad was mentioned that I did not have a nasal cannula and I said get me the oxygen I will inhale the oxygen right from the tank. So that is what I did and felt better immediately.

It's weird, I was totally aware of my shortness of breath as I have experienced it for over 7 years but the biggest questions was why, what was going on that this was happening. We got into the clinic and my mom went ahead and asked a nurse to help me. She dropped all her paperwork and came to my assistance immediately. My oxygen level was 83 by then and my heart rate was out of control. Within minutes I was hooked up to 12 liters of oxygen and several people in an exam room with me. They ordered an EKG and chest xray. My symptoms were shortness of breath, a pain in my shoulder an rapid heart beat (no kidding I was scared, anxious and at some point I was almost in a panic state. Breathe deep, yeah right!)

The xray showed a pneumothorax. My lung had partially collapsed. I was sent to the bronch suite where they proceeded to place a chest tube to release the air. My major problem during the procedure was the pain in my left shoulder. I had had it when I got to the clinic and that is one of the main reasons why they did an EKG on me. The pain killer that I was given during the chest tube procedure did not take away the pain. Just seconds after the chest tube was inserted I realized that I was breathing 'normal.' From the bronch suite I was taken into a hospital room where I stayed for several days.

My first day there I could not walk around. I was too exhausted from the anesthesia and the trauma I had gone through. The second day I tried to walk but the pain in my shoulder and lung area was too much so I only did 3 laps around the hospital floor. I had hot packs on my shoulders for over 36 hours before I felt some relief. The PA told me that it was a referred pain due to the fact that the chest tube was very close to the diaphragm. The following day they took the chest tube out and they said to go and walk and that they would take a chest xray in about 4 hours to see how my lung was doing. I proceeded to do 30 laps (which was 2 miles) got into bed and fell asleep for about 40 minutes. A chest xray was taken and it showed that a hole was still in my lung so the PA said to walk again and that they would take another xray in about 4 hours and for me to walk again. I proceeded to walk another 30 laps. They took the other xray and the hole was still there but holding steady. It had not gotten bigger (thank the Lord)! Their follow up it to get another chest xray within 48 hours.

I hope you never have to go through something like this but I wanted to share my experience. The doctor was really sorry. He apologized a few times and mentioned that he had done well over 10,000 of these procedures and that I was the 2nd person that this happened to. Well it is not the best lottery to win but there could have been a lot worse things that could have happened. All shall be well soon. So get out there and

Celebrate Life,

Alma

Coral Springs woman wins gold medals at World Transplant Games - South Florida Sun-Sentinel.com

2011-07-20T02:43:00.000-07:00

Coral Springs woman wins gold medals at World Transplant Games - South Florida Sun-Sentinel.com

After receiving a life-saving kidney transplant in 2003, Coral Springs resident Jill Morton has been on a mission to inspire others.

Celebrate Life,

Alma

Article > InterMune's pirfenidone approved in Europe for IPF

2011-07-20T02:00:00.000-07:00

Article > InterMune's pirfenidone approved in Europe for IPF

InterMune is celebrating after getting the thumbs-up from regulators in Europe for its idiopathic pulmonary fibrosis treatment Esbriet.

Thanks for the information Carolyn.

Celebrate Life,
Alma

Jaime Muñoz - National Jewish Health

2011-07-14T18:36:00.000-07:00

Jaime Muñoz - National Jewish Health

Six years ago, Jaime Muñoz’s doctors in New Mexico told him he did not have long to live. Today, after a new diagnosis and a double-lung transplant in Denver, Jaime Muñoz, 38, can walk into National Jewish Health without oxygen therapy and with hope that he will be with his wife and children long into the future.

A Record-Breaking Triple at McCoy: PawSox and Gift of Life Saves Three Lives!

2011-07-14T08:59:00.000-07:00

Gift of Life Bone Marrow Foundation - A Record-Breaking Triple at McCoy: PawSox and Gift of Life Saves Three Lives! - Gift of Life Bone Marrow Foundation

This is North Devon | Sore ankle is nothing to Mick

2011-07-14T06:42:00.000-07:00

This is North Devon | Sore ankle is nothing to Mick

Since he had a heart transplant 18 years ago, Mick has been an inspirational example of what can be achieved.

THE SMALL matter of a sore ankle was not going to stop Mick Foster representing his country at the World Transplant Games.

Mick, of Holsworthy, shrugged off the injury to win four medals in Gothenburg as the Great Britain team finished top of the table.

Replacing Body Parts | NOVA scienceNOW | PBS Video

2011-07-14T06:22:00.000-07:00

Replacing Body Parts | NOVA scienceNOW | PBS Video

This is absolutely fascinating. I have the video posted permanently on the right side of my blog but many have not seen it yet. Please take a few minutes to view this. It is a great learning and experience.

Watch the full episode. See more NOVA scienceNOW.