June 6, 2011 – Long hotel stay and first post-transplant clinic appointment
I signed the discharge papers, gathered my personal items and new large pill case and I slowly made my way down to the car. It was a great feeling to leave the hospital and start living my life again. It was a nice day outside and the air felt good. Cody’s dad Jim helped me into the car and Cody drove. We headed back to the University Inn, which would be my residence for the next 12 days. My aunt had sanitized the entire room before my big return. Cody’s family helped us settle back in. I carefully laid down on my bed, ate some dinner and rested my tired eyes. I was looking forward to catching up on some sleep since I didn't get much during my stay at the hospital. I was given a pain medication to help manage the pain while I recovered and was ordered to try and eat 60 grams of protein for the first six weeks in order to get stronger. That demand felt like a tall order. Sixty grams of protein is a lot of food. Before my transplant when I wasn’t feeling my best, I had no appetite at all; so to go from that to having to force feed myself was a bit of a struggle.
For the first few days at the Inn, the most action I got was a quick trip downstairs to the continental breakfast and back. Everyday tasks were difficult but I knew with each day, it would grow easier and I would feel more like myself again. I was taking my pain meds around the clock to ensure I didn’t fall behind and then end up in a lot of pain. The doctors reiterated that I should take the pills on a schedule at first to prevent “getting behind on the pain.” I followed all of the doctor’s orders, took my evening pills, packed my bag with my pill case and waited for my first clinic appointment which would be the day after coming home from the hospital.
The first appointment seemed fairly routine. My creatinine was still higher than they anticipated but no one seemed alarmed. They explained that sometimes it takes a while with some patients for these numbers to go down. The lower one's creatinine, the better their kidney is functioning.They told me I would see the transplant clinic for approximately three months before transferring back to my Nephrologist, or kidney doctor. Early on, my aunt and I went to clinic two days a week. We met pharmacists, dietitians and all kinds of people in white cloaks. There was more information to take in everytime. I knew as time went on, the appointments would become simpler and probably quicker.
At this point, the amount of medications I took almost
reached 20 pills two times a day! It felt like swallowing a small meal
all at once. Luckily, I’ve never had any issues swallowing pills. After a
few days only, I pretty much took all the medications in one gulp.
There was somewhat of a learning curve when it came to taking the
prescriptions. My pill box is separated into different times of the day:
morning, lunch, dinner and bedtime. Certain meds could only be taken in
the AM and other in the PM and so on. Filling the pill case took much
thought and careful consideration. I needed to make sure I didn’t miss
any doses, especially the immuno-suppression drugs. Those are the drugs
that suppress the immune system in order for the body to not recognize
the newly transplanted kidney as a foreign object. If my immunity were
like everyone else, my body would fight the kidney off and it would
eventually fail. It’s vital that transplant patients never miss these
doses, particularly early on.
I signed the discharge papers, gathered my personal items and new large pill case and I slowly made my way down to the car. It was a great feeling to leave the hospital and start living my life again. It was a nice day outside and the air felt good. Cody’s dad Jim helped me into the car and Cody drove. We headed back to the University Inn, which would be my residence for the next 12 days. My aunt had sanitized the entire room before my big return. Cody’s family helped us settle back in. I carefully laid down on my bed, ate some dinner and rested my tired eyes. I was looking forward to catching up on some sleep since I didn't get much during my stay at the hospital. I was given a pain medication to help manage the pain while I recovered and was ordered to try and eat 60 grams of protein for the first six weeks in order to get stronger. That demand felt like a tall order. Sixty grams of protein is a lot of food. Before my transplant when I wasn’t feeling my best, I had no appetite at all; so to go from that to having to force feed myself was a bit of a struggle.
For the first few days at the Inn, the most action I got was a quick trip downstairs to the continental breakfast and back. Everyday tasks were difficult but I knew with each day, it would grow easier and I would feel more like myself again. I was taking my pain meds around the clock to ensure I didn’t fall behind and then end up in a lot of pain. The doctors reiterated that I should take the pills on a schedule at first to prevent “getting behind on the pain.” I followed all of the doctor’s orders, took my evening pills, packed my bag with my pill case and waited for my first clinic appointment which would be the day after coming home from the hospital.
The first appointment seemed fairly routine. My creatinine was still higher than they anticipated but no one seemed alarmed. They explained that sometimes it takes a while with some patients for these numbers to go down. The lower one's creatinine, the better their kidney is functioning.They told me I would see the transplant clinic for approximately three months before transferring back to my Nephrologist, or kidney doctor. Early on, my aunt and I went to clinic two days a week. We met pharmacists, dietitians and all kinds of people in white cloaks. There was more information to take in everytime. I knew as time went on, the appointments would become simpler and probably quicker.
Although these medications are a miracle and are saving my life and preserving Kara’s kidney, they do come with a small price. The doctor’s warned me to be diligent with my sunscreen use from now on, as well as making sure I always keep up on all my other doctors appointments. Someone who is immuno-suppressed is 20x more likely to contract skin cancer as well as lymphomas. Bone density, vision and a host of other things can be negatively affected by the drugs, as well. Overall though, one can’t live in constant fear of these things. At first I was terrified, but now I realize that worrying does absolutely nothing. The positive thing is, if physicians know ahead of time that I’m predisposition to getting these illnesses, then they can be more proactive in my treatment. These risk factors are a small price in my eyes now that I have my life back and can feel like I once was.
While staying at the hotel, there were times of relaxation, bouts of fatigue, good movie watching and moments where it felt like cabin fever got the best of us. I was filled with all sorts of emotions. Above all, I was extremely happy, but I also felt worried. Worrying if Kara was okay or not and how she was feeling was always on my mind. I was also agitated which felt beyond my control because of the steroid prednisone. It was a nice time though; time for me to spend with my aunt who came out to help. I don’t get to see her very often so it was a definite treat having her around. Living in the hotel had its perks. No cleaning, no cooking, no real obligations. It was a wonderful place to recover. The staff was very accommodating and friendly. I also enjoyed the continental breakfast! They served waffles, an assortment of oatmeal, juices, coffee, fruit and an array of yogurt. Like I’ve said, early on this was the most exciting part of my day! Everyone that knows me knows I love food, so maybe it would’ve been the best part of my day anyway!
As time went on, my aunt and I got out more and more. We rode the Seattle duck tour, which was a blast, and made sure to get some walking in. It was important for my recovery to keep moving about. Cody would pick us up and we would venture out for dinner. One evening we went to Dick’s for burgers and Haagen Dazs for ice cream. Driving around in the car wasn’t easy though. I felt every bump and lump in the road, and as we all know, Seattle streets aren’t exactly new. Little outings were all I could handle at the time. With each passing day I knew and felt I was getting stronger. It was an amazing feeling really, when the months leading up to the surgery I felt the polar opposite.
It was about the middle of June when the phone rang in our room. It was bad news concerning my Grandmother. She was having emergency surgery and it didn’t look good. Since I was feeling well enough to return home and make the commute from Bremerton to go to my appointments, my aunt made the decision to go back home to Calgary and then head to British Columbia to help my grandparents. So a few days later, we said our teary farewell. It was so wonderful having her around to help me and since I didn’t know when I’d see her again, it was hard to say goodbye. I knew it was more important for her to be there for my Grandparents now. Everyone had been praying for me when I needed it most, now it was time for me and everyone else to pray for my beloved Grandma. I was thankful that my days of feeling marooned were over. It was time to move on and move back to Bremerton.
~Cherina
While staying at the hotel, there were times of relaxation, bouts of fatigue, good movie watching and moments where it felt like cabin fever got the best of us. I was filled with all sorts of emotions. Above all, I was extremely happy, but I also felt worried. Worrying if Kara was okay or not and how she was feeling was always on my mind. I was also agitated which felt beyond my control because of the steroid prednisone. It was a nice time though; time for me to spend with my aunt who came out to help. I don’t get to see her very often so it was a definite treat having her around. Living in the hotel had its perks. No cleaning, no cooking, no real obligations. It was a wonderful place to recover. The staff was very accommodating and friendly. I also enjoyed the continental breakfast! They served waffles, an assortment of oatmeal, juices, coffee, fruit and an array of yogurt. Like I’ve said, early on this was the most exciting part of my day! Everyone that knows me knows I love food, so maybe it would’ve been the best part of my day anyway!
As time went on, my aunt and I got out more and more. We rode the Seattle duck tour, which was a blast, and made sure to get some walking in. It was important for my recovery to keep moving about. Cody would pick us up and we would venture out for dinner. One evening we went to Dick’s for burgers and Haagen Dazs for ice cream. Driving around in the car wasn’t easy though. I felt every bump and lump in the road, and as we all know, Seattle streets aren’t exactly new. Little outings were all I could handle at the time. With each passing day I knew and felt I was getting stronger. It was an amazing feeling really, when the months leading up to the surgery I felt the polar opposite.
It was about the middle of June when the phone rang in our room. It was bad news concerning my Grandmother. She was having emergency surgery and it didn’t look good. Since I was feeling well enough to return home and make the commute from Bremerton to go to my appointments, my aunt made the decision to go back home to Calgary and then head to British Columbia to help my grandparents. So a few days later, we said our teary farewell. It was so wonderful having her around to help me and since I didn’t know when I’d see her again, it was hard to say goodbye. I knew it was more important for her to be there for my Grandparents now. Everyone had been praying for me when I needed it most, now it was time for me and everyone else to pray for my beloved Grandma. I was thankful that my days of feeling marooned were over. It was time to move on and move back to Bremerton.
~Cherina
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