I made a few more trips to the Dungeon/hospital for iron infusions. For the past few weeks I have been running around with a half my hemoglobin blood count at 6 when the normal level is between 11-15 g/dl. I dealt with daily fatigue and tiredness. It’s scary how I can just push on this way but this is when I get into my warrior mode-pushing forward opposition. Even when I felt my heart pounding out my chest with every step I have this way of still moving forward. I had my sister in town with me the past 2 weeks. It made life easier since my sister is very maternal to me. But it didn’t change how symptomatic I was getting. My labs weren’t so great but I had so much going on with my sons activities and fundraising for the transplant games. I never took my eye off the goal even though I knew how quickly things can change from one day to the next.
I had my check up last week with my transplant doctors. After having abnormal labs I honestly wasn’t sure where I stood with my kidney function. I had a scary reading and decided to not let it take captive of my thoughts. With my sister and family in town I decided to focus on them. It’s not that I wanted to be in denial of what could be happening in my body; I just knew I better enjoy what each day was bringing to the table. I started having constant swelling in my feet and knew I have been walking around borderline ready for a blood transfusion.
The past couple months I have prepared to attend the transplant games and I didn’t want to think of anything stopping me from this goal. But I know fait can have its way. I knew I would have to accept if my health took a turn because this is just the reality of my situation. The days were still planned around my doctor’s appointments. Literally one day we dropped the family off to the mall ran me to the hospital where I got my iron infusion. Couple hours later picked me up and back at the mall we all were. I had a goal to still keep up with my physical activity even though it was tough. I’m getting ready to walk/run a 5K and possibly run a 100 meter yet I have this present condition would possibly overall destroy the plan to attend the transplant games.
Back to the appointment, thankfully my creatinine (kidney function reading) was lower no hospitalization needed but my overall GFR (which is a baseline for the overall kidney function) is border lined to the point of being put on the transplant list. I’m not so surprised; I know I could have lost my kidney transplant the day I received it when it was a sleepy kidney (a condition when kidney doesn’t function right away), or the day I caught the nasty Valley Fever infection or the day they decided to stop immunosuppression medications… There were so many times that this transplant wasn’t supposed to work out for me. Somehow it did. I knew early on everyday I had with my transplant would be a miracle within itself. It’s exactly what my doctors wants me to focus on. He commended to keep doing whatever it was that I was doing. Somehow its been working out for me. He told me if I’m lucky I’ll get a few more years with my transplant. It’s hard news but something that I’m not scared to here. As I mention each day is a gift and only time will tell.
He told me to think about getting back on the list but to be on a hold status until my kidney actually fails. There is no thinking about it. Everyday counts for me, this is also true when it comes to being on the waiting list. I want to be put on the list right away since the last time I was put on several months after my kidneys failed. It still didn’t change how long I had to wait. It’s what’s just the reality of the current waiting time. It’s why I advocate because I knew the difficulty to match my blood type. Now I know how much of a difference it makes to be transplanted as soon you can.
After my labs on Monday I seen that the iron infusions wasn’t budging the numbers in my hemoglobin and I called the advice nurse. Right away they told me to go to the ER. I spent that whole evening receiving 2 liters of blood. They wheeled me in and were shocked I was walking around this way. I could have had a stroke at this level. This overall strained my kidney function too. I understand why my kidney specialist tried to avoid the infusions. My antibody level is already high. I have had many blood infusions in the past. High antibody levels can make it difficult with finding me future donor. This was another reason I was difficult to match in the first place. If I only recieved my transplant much earlier I would have had a better chance with my transplant. The years of dialysis only made me sicker. But no “if onlys” I just have to ask “What next?”
However, I chose not to wallow in my sorrows. I now seen how the Transplant Games was going to be a huge inspiration to my life. I didn’t know what the heck I was thinking at the time. I’m now 9 days away and had several obstacles that made it seem impossible to go but I went into warrior mode. I first had this vision to go when I had the rejection stint. I had no idea where I would be as I would be recovering from this. However all I can do is focus on each day as it came. Last Sunday I met the team “Team Norcal” for the first time. Just to be in a room with fellow recipients alike and donor families was already an emotional experience. To here the many stories gave me such a hope in my situation. I’m not alone. I was in a room with many survivors ready to celebrate life in participating in the games. Transplant recipients running, swimming, biking, etc… What an amazing thing to experience and I’ll be one of them. Now we’re 9 days away and still cleared by the doctors to go. Trust me I feel like holding my breath until the day I can step into the plane with the family.
In in excerpt in the book Warrior Chicks by Holly Wagner (My present read):
Warriors do not complain or whine or try to get you to feel sorry for them. Somehow warriors manage to find joy in the midst of their scariest times. The apostle James challenges us this way.
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well developed.
Thank you for following along my journey. I will keep sharing as much as I can keep living. God Bless~
***This post is dedicated to Grandma TaoTao whom we lost 2 years ago to this day…***