Many of you have read my story about looking for a Living Kidney Donor and about my journey with Chronic Kidney Disease from Branchio-Oto-Renal Syndrome. If you haven’t CLICK HERE to read the beginning.
With today being World Kidney Day and March is Kidney Month I wanted to share my transplant story with everyone to let them everyone know what happens when you sign a donor card.
On Saturday August 8, 2015, my husband received a call at 6:30pm on his cell. I asked him who it was and he mouthed that it was the hospital. I was confused on why the hospital was calling. I didn’t clue in because I had just been napping on the couch and his cell woke me up, so I was half asleep.
Mike handed me the phone and the woman on the other end told me she was with my transplant team and was excited that they had a potential match for me. She was very bubbly and because I was half asleep I was still trying to register everything. So when she said “Isn’t this exciting?” I just replied with a “yeah” in a monotone. But as she was talking about how it might be a dry run (a dry run is where you arrive at the hospital and prepped for surgery but there is some reason the surgery doesn’t go through. It can be because it isn’t a match or the kidney is damaged and the surgeon calls it off. Several reasons as to why it is called off.) I was more awake and realized what was going on. After only 8 months on the list, I could have a transplant tonight!! She told me I needed to bring 3 manuals of dialysis just in case. She asked me if I could be there by 8:15pm. I live an hour away but I told her that wasn’t a problem. I was starting to get excited and nervous all at once. She wished me luck and I thanked her so much for calling.
I couldn’t believe it. I could have a kidney. No more dialysis! But I didn’t want to get my hopes too high because I have seen several people get calls and get a dry run. Seriously what was the odds that the first time I get the call, I receive a kidney? So I packed quickly and brought my suitcase downstairs and notified Mike and the kids we had to go. So we packed up the kids and the dog traveled to my mother in laws house to drop them off and then head to the hospital. (At this point I had been on the list for 6 months.)
We drove to the hospital and I was told to report to the ER and let them know I was there for a transplant. They called up and found out a bed was ready for me and I was to go up. So we went up and I was shown a room.
In my first story about how I was sick, I stated I was in the transplant room because they didn’t know if I would survive. Well I ended up in the very same transplant room. I don’t remember the room but Mike did when we walked in.
I had to fill out paperwork right away. Normal surgery stuff. Then I received the I.V. and then got into the hospital gown. We waited. The surgery was suppose to start at 10pm but my surgeon came in and said they were waiting on the kidney that should be there any time, since it was 2 hours away. The person was on life support so they had the family come in and do their good-byes (so sad to remember hearing that because it makes you respect the gift that much more. Not that I didn’t respect the gift knowing it was coming from someone deceased but you start thinking about the family and wishing they weren’t going through the pain they were at that point. )
At 11pm they wheeled me down with Mike and my sister to the recovery room. To get ready to meet the rest of my team who would be there with me for the surgery. I was so nervous at this point. I kept asking if it was going ahead because we still didn’t know. I also was nervous because I have never been put out and my fear is being forced to sleep. I didn’t like that idea. I met the team and before midnight the nurse told Mike and my sister to say good-bye. I was then wheeled into the OR and I could see there was someone in the other OR across from me. Maybe another transplant? Going in the OR and seeing the team was making it feel so real. Everyone was doing things to prep for surgery. I asked again is it a go? They said as far as we know yes. So I told the nurse, I am nervous about being put out. She said don’t worry it will be fine. I moved from the gurney to OR bed and then the nurse said they were just putting a mask on me. They stated it was just oxygen and she would let me know when the medicine was going in so I would know to count. I breathed twice and I was out.
The next thing I knew the nurse was waking me up in recovery and they said I was going up to my room soon. I could barely speak since my mouth was so dry and I was still messed up from the anesthesia but I said “so it was done.” which now makes me laugh because of course it was done but I just didn’t feel like any of it was real. She said “Yes, you have a new kidney!” I just remember that I kept smiling. So they wheeled me up to my room which was ready for me. I remember seeing Mike and my sister and feeling like I wanted to dance. (even though I couldn’t.) I was that happy. I can only compare it to my wedding day and the birth of my children on what I was feeling. My peritoneal catheter in was still in my stomach area because it was a high risked kidney, they didn’t know if it would react well. It was pumping on the table but sometimes you need a few sessions of dialysis if the kidney isn’t functioning right away. Thankfully, my kidney worked right away and I never needed dialysis again! My PD catheter came out 2 weeks later and my drainage bag came out 5 weeks after surgery. (I had a drainage bag put in with surgery.) My husband said my face was swollen. They put in a lot of fluid into you while you are doing the surgery so I was swollen for a few weeks so I had to keep them elevated.
My first day was hard in that my mouth was so dry and I was so tired. I think I scared the kids when they came up I was a mess trying to get over being knocked out and not being able to have anything but ice chips. I wasn’t hungry but my mouth was so dry that when they would give me a med, I couldn’t take it. I fell asleep while Mike, the kids and my mother-in-law got some food downstairs and woke up to pictures on the board in my room. That made me smile. It says I “heart” you mom.
The second day I was more myself and graduated up to water. I still wasn’t hungry so it didn’t bother me. I found equipment they put on your legs to prevent blood clots were annoying. When I was sleeping, I kept thinking my dog was on my feet and kept trying to move him. (haha) The nurse had me move from the bed to the chair. That was really hard to try to stand up to move. Learning to use stomach muscles again was a lot harder than when I had my c-section. At night I had to buzz the nurses because I was in bed and in so much pain. I had them move me back to the chair. I felt sitting up I wasn’t in pain.
The third day, I was able to have clear liquids so my breakfast was coffee (and boy did I miss coffee), tea, ginger ale, apple juice and jello. Very filling. (haha) I was just happy to have a different flavour. I was still in the chair because I felt it was more comfortable to sit straight up then lay down. I lived in the chair for the whole stay. This day was the day I was to take my first steps. To get your body healing faster, it is recommended to walk. So I decided I was going to walk as often as I could. I had a walker and at first couldn’t stand up straight with the staples. (I had 22 staples) I walked down the hall and back. I saw all the rooms were full and there was even one who had had a lung transplant. My thoughts were of all the people on this wing that were going to get their lives back and all those heroes who signed their donor cards.
The fourth day I was walking all over the transplant wing with my walker. This time I was walking straight up. I walked with my nurse during the day and then with Mike during the night. At lunch, I had real food. I was happy to finally get some food. I had homemade mac and cheese with peas. The one thing I noticed with the transplant is that I can taste food. I mean really taste it. The taste is so strong now. Previously, food just tasted bland but now I could taste it. Things I hated previously, I now love. (Like chocolate)
The fifth day I was discharged. The morning was removing my ivs from my body, making sure my bladder is doing well enough that I didn’t need to have a urine catheter with a bag while at home, learning my medications. I was released by noon and we went to my mother-in-laws so that I could stay with her for 3 weeks while I healed and went to follow up appointments. I was glad to be out of the hospital. I just glad to be with my family. They were up every day but I always felt bad that they had to keep coming up to see me. This journey has been hard one my family especially the kids because being young, they had to deal with a lot.
I was thankful for all those that came up to see me, contacted me or sent me flowers. It was uplifting!
I just had my 7th month anniversary of my transplant and my kidney is doing amazing. My creatinine is 57. (To give you an idea on how great that is last July it was 1300.) My doctor states that my levels are like that of someone who has never had a transplant. I think of the man who donated every day. He is my hero. His family is always on my mind. Especially because they either honoured his decision or made the decision during one of the hardest times of their lives. By doing this, they gave me a new life that I cherish. One where I am not tied to a machine, where I have more energy to do things with my children. A transplant isn’t a cure for kidney disease but it is a better treatment than dialysis. It is one most of us with kidney disease aim for because being on a machine is no fun and very hard on us. I will be on medications for the rest of my life but I rather that and the side effects than the machine. The day the machine left was a great moment for me. I still have doctors appointments with my transplant team but they are every 3 months now because I am doing so well.
For World Kidney Day, I am going to post the Canadian link to sign a donor card on the registry. It takes seconds to sign up. Please let your family know of your wishes. CLICK HERE