Today is a special day it’s my 2 year Kidney Anniversary. This is like another birthday to celebrate. Something that has given me the ability to live a better quality of life. Even though I have been having it rough I really don’t know what my condition would be right now if I hadn’t had a donated kidney. When I received my kidney transplant my peritoneal catheter for dialysis was getting infected, meaning I was close to getting another dialysis access put in. My blood pressure was off the charts. Continued water retention, meant more medications, more dialysis and much more tough days. I know even though I had caught that nasty infection and endured new health challenges I couldn’t lose focus of the gift of being dialysis free.
My donated kidney has gone through a lot and last week it was uncertain that I would even celebrate today. I dont think things are ever certain in life. With me being a natural planner it can be difficult to not have that certainty. That is one thing I could say I’ve learned over and over again that it’s okay to let things go that are just out of your hands. It doesn’t mean I dont plan because I still calendar everything and keep short and long term goals. I just know now what is feasable. I loved accomplishing all that I could in one day but I can now say I rejoice in the one or two things on my checklist. These days it could be as simple as preparing a meal, taking the time to pray or getting to a doctor’s appointment on time, etc… I do have faith that all things do work out someway, somehow.
Last week was tough with my creatinine and BUN creeping up. This is what measures kidney function. I was already feeling like I was finally getting over the bend of this sickness. I started to get out more, meaning doing other things than going to doctor appointments. Spending quality time with my family and doing some personal things too. Than to see the labs not looking good just made me feel like maybe it was to soon to be out. Its hard for me not to think this way. In my spirit I feel the tugging of all the life that is ready to just live. It’s been challenging to go places and anxiety does set in at every cough I here. I literally have been homebound since August so I know a lot of that comes from just not going out. I was thankful for all the visits from friends and family but I am so ready to be out of containment. On the other hand, I have to be wise and I do have to be careful. It’s just the nature of healing and having a low immune system. At the same time I don’t want to be fearful and my faith always kicks in. I feel that is what makes me better. Half the time I try not to think about it but if you can imagine how much thoughts can run through my head. I try to focus on all the blessings in front of me. To fix my eyes on God. This was the message last week at church. I listened to it just the other day but man did I need that message (How to stay mentally tough http://rlcsac.com/#/messages). To get all the thoughts cleared out and really focus on God. That is a challenge but one sometimes so necessary especially when thoughts run idol. Here I was fully active in ministry to barely being able to go to church. I will have to be honest my ADD has been very severe lately. A thought here and a thought there. Lordy Lord. I just keep talking to God throughout the days in my deepest dispare that he knows my heart, he knows what I yearn and deeply desire and I know that is what he sees from me. Not all the crazy random thoughts that can race through my head. All I can do is use my discernment. Pray and somehow I am led.
Thankfully discernment led me to ask my doctor for a repeat lab draw and things were immediately addressed. A prednisone steroid was prescribed along with some antibiotics for a bacterial infection. I had classic symptoms from the prednisone. I started to go into waves of emotions. Uncontrollable tears which I know is a good thing because I believe the healing in tears. My family doesn’t like to see me this way and I sure dont like them seeing me like that either. It’s tough and as a family we have learned to go through it together the best we can. I know this is not out of fear of what could happen; its more sadness of what could be lost. In the hospital my doctors did their job explaining the possible kidney rejection. I was facing a very bad case of disseminated cocci (Valley fever) and it wasn’t looking good. On a medical standpoint my only chance was bringing my immune system up meaning that rejection could happen at anytime. I’ve shed many tears of the thought. I can’t help but think of my donor and this selfless gift. The doctors reminded me what donation means. It is a free willing gift without compensation. My donor had to be prepared for this reality even before thinking to donate. It is why psychology screening is neccesay for both donor and recipient. With that all said it still is a hard reality and one I hope wont have to happen for a long time.
So far my donated kidney has held the test of circumstances now we’ll see if it can hold the test of time. I am thankful for everyday that my body has a chance to function close to normal. I still am not fully out of the woods but I am glad to be able to have come this far. I have written more in detail of my experiences with the surgeries I’ve had but so much time has passed and I’m already in a different place. I love sharing my experiences but for the stake of blogging I will try to keep it current and save the long detailed writing for possibly a book one day. We’ll see…
I’m still dealing with pain. I was close to weaning myself off of percocet but I guess my pain level is still pretty high. My back has been giving me alot of issues. I have to remember I now have 2 titanium rods and eight screws. Every now and than I get jolts of pain. My wound on my chest and shoulder are slowly but surely getting there. It’s kind of funny how I’m so focused on getting off of pain medications but I guess when you thrive to feel normal. Normal is a high. Something I probably would’ve never thought in my younger days. Home health care is still there but they only have to come once a week. My wound nurse/case mngr is motivated to see this wound fully heal. I’m starting to have a very special relationship with her too. She really took the time to hear me out as I was going through the blues. It’s been a slow process but it is improving. Lately painful again, which they say is a good sign that I’m getting closer to the next step which will eventually scab up and create new skin. My hubby is now if trained to change my dressings as well. I’m a very lucky lady having a nurse as a husband. I can’t say it enough how grateful I am for his patience and his love. IV infusions have lessened from 3 x’s a week to 2 x’s a week. I have the same AMPHOTERICIN B (infection med) & IV infusion buddies. Today one of them graduated making it be her last treatment. Graduation at the infusion center means getting a PICC line removed. One I can’t wait to have done but I will say it saves me from being poked by a needle. The initial plan was for me to graduate at the end of this month but it will depend. I have another MRI scan ordered because of the back pain I’m experiencing. I had doctor appointments yesterday with both my kidney & ID specialist. They are happy to see me gaining weight and I’m glad to see them both smiling again. I had to tell them both at one time that this isn’t their fault. I have some of the greatest doctors. Very personable and committed to seeing me through. They laid out the possible scenarios, of course covering all basis. UCD will order a kidney biopsy soon to get an accurate test of how my transplanted kidney is doing. There is a few reasons of why I had an acute rejection. One is that I’m getting better and may need more immunosuppresion, another is that the IV med AMPHOTERICIN B is creating a toxicity or the recent and current infection or just plain something else. So I’m ready and willing to do what I got to do.
Until than I will be celebrating each and every day, the good the bad and the ugly.
I’m thankful to still have a story to tell.
For my 2 year KindyVersary I created a facebook community page to share my story and continue advocating to save lives. Check it out: Maribel’s Kidney Story