Breath For Bill: December 2009

Monday, December 28, 2009

Tired today

So today - Bill was extremely tired - so he rested most of the day.

I took Mikaela and cousins bowling with some friends. They also got to play in the snow - we finally got enough to shovel!!

We meet with the urologist tomorrow and hope the cath could come out.

Saturday, December 26, 2009

Holiday Joy

We have had a joyous holiday with Bill home and recovery. We are trying to get into a routine of all his meds, PT exercises and walking. He has been very sore the past few days - we think with him moving around more is body is getting to do more things. Walking is still a challenge - his legs are a bit better but his ankles and feet are still very swollen, especially the right side.

For Christmas we went to his sisters house for gifts and dinner - Bill asked for seconds - which was good to hear!!!! Afterwards Bill went home to rest and put his feet up and Mikaela and I went to my parents to see the Long Island Clan. Mikaela was so excited to see her cousins and vice versa!!!

"A house is made of walls and beams; a home is built with love and dreams."

Tuesday, December 22, 2009

BJ Home!!!

Enough said!!!!

Happy and tired...long day of docs!!

Many blessings to everyone...this will be a Holiday and New Year to remember.

Monday, December 21, 2009

Chest Tube Out

Getting closer to home - we hope. We met with the surgeon today - they pulled Bill's last chest tube - yeah!!! Now the healing on the right side could really start. His lung x-ray looks good and Bill is feeling well.

We have appointments all day tomorrow and hope to hear good news!

We look forward to seeing everyone. God Bless and Be Well.

Sunday, December 20, 2009

Mikaela and friends add some fun

So this weekend was awesome. We got to celebrate the last night of Hanukkah with Mikaela. Dana has been our savior - visiting us every weekend. We also got a special visit from friends - we loved playing Rock Band, swimming and going to Dave and Busters. It was good for Bill to visit for a bit with everyone, rest and still have the chance to see Mikaela in her glory. I still do most of the running around -Bill is resting and recovery nicely - he was able to walk to longest today - we are hopeful for our appointments this week.

Thank you to all for the prayers and thoughts for Bills recovery!!

Thursday, December 17, 2009

Adventure Day

Today was Bills first real trip out. We went to Target!!!! He enjoyed pushing the cart and buying some warm fleece relaxing pants!!

We ejnoyed the sunshine that Ohio has and the relatively mild weather. We hope it lasts. Looking forward to Dana and Mikaela's trip down this weekend - Dana your the BEST!!!

I made Bill another home cooked meal - yum!!! Can't wait for family to come down so we could order out.

Wednesday, December 16, 2009

Just Chillin

The Man - enjoys relaxin in our suite. We took a tour of our area - I found all my hot spots - Target, Kohls, Borders, Panera, Buffalo Wild Wings, and more!!!

Bill is cravin ice cream so I just bought him Rocky Road - lol.

Lookin forward to doing more things with Honey Bunny. I'm sure this weekend we'll hit Dave and Busters with Mikaela if she comes down.

Bill is still swollen but walkin and just being with me helps!!! I'm actually going to cook tonight!

Tuesday, December 15, 2009

DISCHARGE - the man

YAHOO, WOOT, WOOT, YEAH, YEAH

Bill was discharged today - he is with me. We will stay in Ohio for about a while, various appointments and such. Bill looks forward to having a lot of fun with me!!!!

We will tour the area tomorrow and do some holiday shopping!!!

Monday, December 14, 2009

Mikaela Weekend

So this weekend was great - because Mikaela came down and finally got to see Daddy!

They we're both so excited. She kept Aunti and I busy with shopping and playing Wii.

It was great having them here for Hanukkah. Bill is starting to remain stable and we hope for good news tomorrow - discharge!!!

Pray and be well!

Friday, December 11, 2009

Looks like Monday!

So the docs came in - Bills one chest tube is still releasing fluid - too much for them to release him feelin comfortable. So we will hang out here for the weekend and discharge on Monday.

Swelling looks better -but a bit weak today.

That's all. Happy Hanukkah!!

Thursday, December 10, 2009

Getting close...

Well we are getting close - I think they will discharge Bill tomorrow - keeping fingers and toes crossed.

Kidney numbers have been the same for a few days (still high) but they feel they have leveled off and will start coming down - but will still be looked at as outpatient.

Hoping to show Bill our new place in Cleveland and tour around - I'll drive, he'll navigate. - lol

Not much else - but hopeful :)

When you're down to nothing, God is up to something. The faithful see the invisible, believe the incredible and then receive the impossible.

Tuesday, December 8, 2009

Family Conference Game Plan

Bad News: Well ugh!!!- they put the cath back in....need to look at other things in the morning - kidneys, bladder, prostrate. This is my time to be Bill's advocate so I'm calling a Family Conference in the morning with all the teams to find out their game plan for a discharge end of week if possible.

Bill is getting very frustrated - I can't blame him tho.

Good News: Bill got to walk off his floor today - I took him to the Rooftop to see the sites (its ok we really were not outside, its enclosed)

Thx Hollis for the advice.

Good News, Bad News

Good News first - They talked to us about discharge for tomorrow or Thursday!!!! - yeah!

Bad News - still waiting on the kidneys to produce better numbers before discharge!!!

Bill and I take many walks around his unit, we do his therapy exercises - so we are hoping things will start working better.

We are hopful for the discharge date to be sometime this week - if that happens Mikaela will come down to see Daddy - can't wait.

Monday, December 7, 2009

Waitin Still

Back in Cleveland....Bill looks good - still swollen but making laps around his unit. The docs feel the kidneys may be turning around - but really still waiting.

Lungs look good - which is a relief...not much too report...just very sad when I left Mikaela today...she keeps texting me, love technology!

It was so wonderful being home! Soon we will all be together.

Sunday, December 6, 2009

R & R

It was good to be home and will be even better when Bill joins me. It was wonderful to see Mikaela dancin on the stage. She was so animated and her personality will shined through. We did so much, and it was great to see my family and friends.

Bill was feeling good - Hollis had him doing laps around his unit -I am hopeful that things are starting to get better so more recovery could start.

I pray everyday - sometimes twice a day for my husband and the wonderful donor and family that blessed our lives. Words cannot express how lucky and honored we feel to be given a second chance to life.

Thank you so much for your prayers and thoughts - I look forward to seeing Bill.

Take care.

Saturday, December 5, 2009

Surprise!!!!

I surprised Mikaela a day early for her Nutcracker Show. It was so gooooooood to be home and to see her, my family and friends!! I can't wait to see Mikaela perform!!!!

Bill is about the same - the KIDNEYS - please wake up and start working!!!!!!!

I am hopeful and have all the faith in the doctors. One day at a time. I am getting my strength to conquer more days up in Cleveland.

God Bless and thank you for all the support!

Thursday, December 3, 2009

Worn out

A bit worn today. I got here early to meet with doctors - but Bill was swept away the first 5 mins. for daliysis. I tried to sleep in his room (the nurse were very nice they gave me a pillow and blanket)but between the pt guy, the rabbi, blood check, and Anita (the cleaning lady - who is very nice) I only nodded off to bells ringing, the phone ringing and a code blue on Floor 7.....so at 2:15 I decided I should eat something since I'm goin on a bowl of Corn Flakes (they need better cereal selection).... when I finally got up to eat something, another guy was at Bill's room to take him for some procedure, but Bill was not back yet from dalysis....so.......

Bill still has high toxin levels and an air pocket on the right side of chest cavity, the kidneys are the real problem right now...no real answers yet.

Well - I look to tomorrow for a better day - since this one is almost over.

Wednesday, December 2, 2009

Ground Hog Day

Pretty much the same today as yesterday. Walked a bit - its hard tho, cuz he has so many things hooked to him. He passed the PT walk test -yeah! Doctors changed chest tube to help air pocket and still waiting on the kidneys.

Tyrin to keep Bill's spirit up, so I washed his hair in the sink and he shaved - so he looks good. He was up for a picture, but of course I didn't have the camera on me. Maybe tomorrow we will do a photo shoot.

Hopin for a brighter day for him. I pray that some progress is made tomorrow.

Tuesday, December 1, 2009

Bill saw blog

So I finally had a chance to show Bill his blog - first he was very impressed with my skills - thank you very much -I have to do something with my time besides going to the Fitness Center. He loved reading everyones messages.

His only complaint was my music choices - soo I added some Eric Clapton and Steely Dan - I couldn't find any Beatles on project playlist - oh well!!

Miss and love you all.

Long Day

Well - this morning was very busy - Bill had a test to check out his new lungs - no official word but heard things look good - waiting to meet with doctor tomorrow.

Then he was off to dialysis - kidneys still not coming around - Bill is very swollen - its to be expected - tryin to get through it.

While Bill was off doing his tests - I got us set-up in a new place to stay - bigger living quarters - bedroom, living room, kitchen (yes - Bill wants me to cook - should be interesting - lol)

This evening we got to finally spend some time together - and walk a bit, than respiratory therapist came in.

Hoping for a brighter day tomorrow!

Quote of the day: Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself, "How did I get through all of that?" - Author Unknown

Living with CF-My take on this remarkable journey

As you are all aware, my wife Deborah has been keeping you updated on my progress. I will never be able to thank her enough for all she has done. She is my inspiration, my coach, my motivator, my true love and is more than I could ever want out of a wife, best friend and mother. She got me through some difficult days, always with a positive outlook and a beautiful smile that warmed my soul.

Basic facts about CF-

Most people have heard of Cystic Fibrosis, but do not know what it is.

You are born with it, you cannot catch it or give it to someone, like a cold.

The disease affects the way in which salt and water move into and out of the body’s cells. It primarily affects the lungs and digestive system.

The average age of a person with CF is 32 years.

In 2004 I first visited Cleveland Clinic, with the possibility of receiving a lung transplant. I had no options at this point, and although I wasn’t at the point of transplant yet, my doctors in Buffalo knew it was only a matter of time and wanted me to be ready when the time for transplant came. The doctors in Cleveland felt I was a good candidate, as I was relatively healthy for a CF adult. Throughout the years I visited Cleveland every 4 or so months for tests and procedures. Every aspect of your body is tested and evaluated. The major concern is surviving the surgery and not having other major health issues which could affect a positive outcome. My hospitalizations here in Buffalo were averaging every 6 months, give or take, and I was given large doses of antibiotics through a pic line in my arm. These hospitalizations would be from 2 weeks to 4 weeks depending on how I responded to the treatments. My last two hospitalizations, in July 2009 and Oct. 2009 were not effective at getting me back to a baseline of the past year and I was officially put on the lung transplant list during my Oct. hospitalization. When the pre-transplant coordinator from Cleveland called me in my hospital room in Buffalo she told me I was listed and to be ready as I could be called in just a few days. I was stunned, a few days, no way, wait, let’s talk about this, what do you mean a few days. I haven’t been home in almost 3 weeks and I could potentially go directly to Cleveland for who knows how long. I wanted to see my daughter dressed up in her Halloween costume and at least spend a few days at home. Thankfully she understood and put me on “hold”. I would not lose my spot on the listing, but could activate myself when I was ready. I spent the end of October and into mid November believing I would rebound, but I was now constantly on oxygen and couldn’t walk from the bathroom to the bedroom without gasping for breath.

Needless to say, it was bad, and at my November 13th visit in Cleveland, I was officially activated. I got “the call” on November 18th at about 4:30pm. I had to get to Cleveland for midnight surgery, so after getting a few things together, we had already packed in preparation, we drove to Cleveland. The drive is 3 hours, it was a nervous, anxious drive and Deb and I talked about many things, we covered all outcomes although I remember Deb really keeping a positive outlook and ignored the negatives as she believed they were not necessary to bring up. That kind of positive outlook really put me more at ease, and again I thank her for that. Cleveland Clinic is huge and the transplant surgery and ICU is in a brand new state-of-the-art complex that is a small city of activity and action. Entering the ICU, I remember was oddly quiet, it almost seemed empty and I was directed to a bed at the end of the unit. I was to spend the next week in this space, it is slightly separated from the rest of the unit and I believe was reserved for lung transplant patients who need separation for the rest of the patients because of potential life threatening infection to the lungs through the airways. I was informed at 11 pm the donor lungs were healthy and the procedure was a go. I was taken into surgery at 11:30 and 7 hours later I had new lungs.

Are you in pain? I shook my head no.
Are you in any pain? I shook my head no.
Are you in pain? No.
I remember being asked this at least 3 times, then I remember someone telling me they were going to take out my trachea tube, uncomfortable, but I was breathing on my own, an important step. I was asked my name, where I was, why I was there and what year it was. These questions determined if I had experienced any brain damage. Obviously, I had not. The first 3-4 days were a blur, the morphine made me confused, disoriented unable to focus or speak clearly. I don’t remember my family visiting or Deb being there, she has told me she was there daily, all day. I did not like it. Eventually I was given an epidural and Percocet in place of the morphine. This helped and I was able to at least form complete thoughts and sentences. 6 chest tubes had been inserted during surgery, these drained excess fluids and blood out of my chest cavity into bags that had to be emptied frequently along with a catheter to urinate and an IV to receive numerous meds. I distinctly remember two chest tubes being pulled after about a week in the ICU, two I don’t remember at all being pulled and the last two I had for almost my entire 4 weeks in Cleveland, the last being pulled on the day I was allowed to come back to Buffalo.

The things I learned about the ICU: it is NOT quiet like I thought. It is a beehive of constant activity, there is no privacy and the nurses, specially trained for the ICU are excellent. Each nurse is assigned only one or two patients and it is their job to constantly care for and monitor them. They are understanding, patient and professional. My last night in ICU, a code blue was sounded, someone was dying and Deb and I watched in awe as nurses and doctors seemed to come out of nowhere to save this persons life. Everyone ran it seemed, and when it was over and the patient was again stable there were some high fives and handshakes then the nurses and doctors went their own way and all was back to normal. It lasted less than 10 minutes but I remember Deb and I looking at each other with, I think, fear and amazement at the job these dedicated people perform on a daily basis.

The lung surgery was a shock to my body and especially my kidneys. They were basically no longer working and I received my first dialysis treatment from a portable dialysis machine in the ICU. The procedure lasted 24hrs. and was administered through an IV inserted into a vein in my neck. With tubes going into seemingly every part of your body, you feel like a science experiment. You basically can’t move unless someone moves you and many times I was literally picked up by 2 men who grabbed the sheet I was lying on and lifted me off the bed and into a chair. The day before I left the ICU I was given my first solid food, it had been 5 days since I had eaten. It was jello, cherry or strawberry, I know it was red, and it was fantastic.

Finally the day came when I was transferred onto a regular floor and it was like the Waldorf compared to the ICU. It was a private room with a huge flat screen TV mounted on the wall, a PRIVATE BATHROOM, no more bedpan, and real food from a pretty diverse menu. The bed had a remote control attached to it where you could adjust the bed, turn the lights on and off, operate the TV and call the nurses station. Each day was about the same, at 2:30am an X-ray technician came in and took an X-ray while I lay in bed, then about 3:30am my blood was drawn, at 6am I took my morning meds. at 6:30am I received my first IV med., at 7:30am my surgeon visited me to review my progress, at 8:30 my breakfast came, and Deb arrived at about 9-10am, always the highlight of my day.

It soon became apparent that my kidneys were in no hurry to wake up and it was decided I would need additional dialysis. The dialysis department is a huge area with dozens of beds, each with a flat screen TV mounted overhead. Basically the technician attached the dialysis machine via the Quinton IV that was placed in your neck and it circulated your blood through the machine, cleaned it of the toxins and excess fluids and replaced it back into your bloodstream. The amount of time this took, I believe depended on how extreme your kidney failure was. My longest time was 4 hours, minus the ICU 24 hour session, but many of the beds were occupied with the same patients when I came in for dialysis as when I left. I went to dialysis 3 times.

About 5 days into my stay on the hospital floor my X-ray revealed a shadow which indicated trapped air between the lung and chest cavity wall. When you pushed against my skin on my chest, back or stomach it made a crunching sound, like Rice Krispies in milk, you know, snap, crackle, pop. This was possibly due to a tiny hole in my lung and air was escaping into my chest cavity, not a good thing as it could cause a collapsed lung. I had a bronchoscopy. This is where they put a camera down into your lung and examine it for various things including leaks, infection, rejection, etc. Nothing major could be seen and it was believed the leak was very small and would heal itself, however I had to get rid of the excess trapped air in my chest cavity, so it was decided to put in a larger chest tube on my right side. The one they put in was a ½ inch rigid plastic as opposed to a ¼ inch soft flexible tubing I had in my left side and it was inserted between two ribs about 7” into my chest between the lung and rib cage. The rigid tube was attached to a soft flexible tube that was attached to a little box that measured the fluid and trapped air exiting my chest. The box was about the size of a laptop computer with a handle on it and anywhere I went, it came with me. It was truly uncomfortable, no it hurt, and my primary reason for pain medication was for that tube. It was also the last one taken out of me on the day I left Cleveland for Buffalo.

The surgery also caused me to retain excess fluid, a common side effect from major surgery. I gained 25 lbs. of water weight, my legs and feet were twice their normal size and I looked like Popeye in my arms. This made walking a difficult task as nothing seemed to bend and flex. Each movement was stiff and uncomfortable. And of course to top it off, my right leg was effected from the surgery, also a common side affect. It felt as though I had a stroke on my right side. Simply put, I was one wobbly, drunken looking patient who could topple over at any moment, in a hospital gown with my ass sticking out the back, carrying a box with a tube going into me and a urine bag with a tube obviously also attached to me and wearing a surgical mask. Add to this that I wasn’t able to take a shower for the entire duration of my stay in Cleveland and well, trust me, I was not a GQ cover guy, I looked bad, but I knew I would get better and that is what I had to focus on.

After 3 weeks in Cleveland Clinic I was able to “go home”. This meant of course a suites hotel that Deb had been staying at, well, sleeping at, and it was another step up in comfort and privacy. I was administering my own meds. now, taking my own blood pressure, checking on my lung function with a portable spirometer that every CF patient uses after transplant and Deb was changing my bandages with the remaining chest tube I had in place. We walked up and down the hotel hallways to build my strength, went to Target and Borders and ordered out from the many restaurants that dotted the area. Mikaela came down on the first weekend I was out, and although she had seen me in the hospital, I looked much more like dad, in street clothes and minus any visible tubes. I think it put her more at ease and allowed her to know that I was going to be OK. On December 22nd I had my first post transplant appointment with my doctors. My chest tube was taken out, stitches were removed, some were added and I did my first post PFT’s (pulmonary function tests).

Everything went great and I was officially granted an honorable discharge from Cleveland Clinic. Deb and I were thrilled. We would be home for the Christmas holiday. I remember going outside for the first time into the cold air and thinking would I ever experience this feeling again. Well, I should have listened to my wife, because she never had any doubt I would.

Today I’m going to respiratory therapy to build up my lung strength, endurance and muscle tone, I walk daily on my treadmill at home and although I am often tired and don’t feel like myself, I know I am getting better. I was told to expect a recovery of up to 1 year so I know that a month and half out from transplant is still no time at all. I am looking forward to 2010 and beyond because really, how many people can say they have been given the gift of life.

I would be remiss to not thank all the people who sent me cards, flowers, fruit baskets, monetary donations, came to visit me in Cleveland, called and prayed for me. EVERY SINGLE ONE OF YOU made me feel better, this is not a clique, but what I found to be very powerful in my healing and recovery process. I hope this little history of my transplant was not a dull read, I wrote it because I thought it was rather an adventure, one from my perspective, and one that I know not many people have had the opportunity to experience.

Our Story