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.
