I first off like to apologize to start this new blog with such a graphic photo to look at. But I thought it was important to share what I’m fighting. These days Maribel’s kidney story has been more like the valley fever story. The reality is I’m fighting both and it makes things a little more complicating. This very infection caused so much damage and it’s a shame that it’s a silent epidemic. Since getting the diagnosis with Valley Fever/coccidioidomycosis in 2010. After going on our 1st trip post transplant to L.A. Which I wrote about in past blogs but gonna try to share the past 5 years fighting this infection as briefly as I can I’ll ad some links to past post to fill in the gaps of the story but you could read later because this is a long one. Back to the L.A. trip. We rushed home when we heard Daniel’s grandma’s condition turned life threatening. This is where we believe I caught the infection. It’s a spore that’s in dirt that is contracted in the air.
Unfortunately, Daniel’s grandma didn’t make it. This was very hard on the family. When I started coughing & getting flu-like symptoms I was sure my emotions was getting the best of me. But the fevers kept rising & my transplant doctor told me to go to E.R. When I got the diagnosis I dug myself into research just as I did with kidney failure. I knew that was the way I was gonna continue to fight. Nothing prepared me for how valley fever was gonna respond to me being immunosuppressed.
Most doctors don’t know much about this infection. I was literally the 1st valley fever patient they’ve seen come through their E.R. I was blessed that the infectious disease doctor that I was assigned to knew of the infection and had recently went to a conference that happened to be about valley fever. I’ve never read anything about it going into soft tissues and bones as it did with me. I knew of it but even than did I ever expect getting it. I thought I would just heal like my uncle did. (Read: What is Valley Fever).
I healed the only way I knew how. Just kept going… It was definitely a long healing process. And it took a toll on our finances. All the loss of work, the hospital stays and all the traveling back and forth to the hospital. I can’t thank enough how my church and community gathered to help us with meals, groceries, and prayers during the hard times. I continued to juggle rest with activity. Pushing a little more until I was back to what I would measure close to what my 100% is. I was always a go getter and someone who didn’t dwell for too long. So I continued with my commitments.
After all the prayers and giving that was poured into me and my family I felt I was strong enough to give back again. At the time I was a PTA president for my son’s school. Soon after I was offered a temporary position with Donate Life that I couldn’t pass on. Between being newly transplanted and now having this infection brought many challenges especially with our finances. I felt strong enough to work. This was a place I volunteered with for years, I didn’t feel it could even feel like work. It eventually opened another opportunity to work for the company that handled their human resources.
As I look back just even at photos I believe I was still sick and needed more healing. I thought pushing to move forward was an important aspect to healing. It was at that job I started to get pain in the right shoulder. It took some time to diagnosis. Lots of emailing back and forth. They thought it was possibly a strained arm from being on the phone, possibly tendinitis. Soon I was limping. Finally they did a body scan and it showed that the infection spread throughout my body. The worse was my back, in my upper spine. I remembered the back aches I was getting in the summer that I emailed about but would disappear. I wrote about this and shared more graphic photos of all the areas they worked on (Read: Celebrating Recovery).
My I.D. doctor made this happen quickly and the surgeries were back to back. The healing was intense but my body miraculous healed literally in front of my eyes. As wounds started to heal and the hair I lost started to grow back. I was so grateful to survive and the kidney transplant was still with me. This by date was the scariest time in our lives. Those couple of months laying in bed healing from the multiple surgery sites. It was painful and I had to put a pause button on life (read: How I Choose to Live my Life).
In time life had to go on and I sure wasn’t gonna let no valley fever stop me. I decided that it was time to focus on really getting healthy. After all the physical pain I knew this would be a great way to deal with the emotional aspects as well. I literally would have nightmares about the surgeries and pain. After some absence from my volunteering and life in general. I seen that The Power of Two documentary was coming to town. I was eager to go. I’ve read the book a while back and met one of the twins Isa and wanted to meet her sister at this local showing.
This was the first time I went to a public place after the months of healing. What better place to go to with a bunch of other immunocompromised people. There’s no shame coming in my mask. Actually they even provided mask there. That film was inspiring. It showcased the Transplant Games of America. When I met Ana (the other twin) she totally encouraged me to go. After everything my family went through I thought we needed to take this opportunity to finally just celebrate the gift of life that was given.
Everyday I got on my treadmill and even read the Power of Two book again. These women lived a lifetime of health challenges. I felt I had no room to even complain. Soon enough I made my way to the gym. It looked like my years playing Dance Party on WII came in handy. Zumba became the perfect cardio exercise. I would tag along with a friend, Leilani who was a friend I met at my son’s school during our volunteering. She helped me get in the gym and we attended classes in multiple places. It was fun and I started up feel strong. The nightmares were subsiding and things were feeling stable. We started raising money and we were set to go. (Read: The Power of Your Story)
I had a few obstacles as my creatine (kidney function) started to go up. I started struggling with anemia and became symptomatic. I ended up getting a blood transfusion just a week before I left to The Transplant Games (Read: Warrior Mode). It was an amazing experiencing. One my family needed. To be among a community of survivors.
Unfortunately the symptoms never stopped. Months later I found out my kidney function was at a point of no return. I was going to lose my transplant. I honestly had no more words to say for a while. It was disappointing and soon I would start mourning the loss of health yet again. I couldn’t even write a blog post. Not that I didn’t believe that every word I wrote was true. I was challenged. They immediately put back on the list and that gave me hope (Read: The Kidney Update).
At the transplant games I met those who had to get multiple transplants and some didn’t even have a day with their transplants. So I had to remain grateful for the time I had. Even though I had to fight valley fever along with it. It still was precious time that I didn’t have to be connected to some means of life support “dialysis”.
I did what I did best picked up where I left off. Things were stable for the most part and in a year’s time I was working again. It felt good to work and we sure needed it since we had to move from the beautiful huge home that brought us Sacramento. I can’t stress enough the toll of the “years” fighting infection and now kidney failure yet again. Our vehicles were breaking down and we had no extra money to fix them. We got so behind on bills and we were ready to move to the bay area with family temporarily. That was until my youngest made all-stars for his baseball league and I recently got a job. It prompted us to stay and we were able to find a new home that was more affordable.
I was physically active and the kidney was still with me with the support of peritoneal dialysis. I still made urine, oh and with every drop I was thankful. I called it precious gold because I know life without making urine all so well. God was still so faithful in getting us by. Even if it was just enough, we were surviving. We were challenged again when we had close family members pass away including my father in law. Soon after we when we found out my mother in law was losing her kidney function.
At work February of 2014, I was pushing a box and felt pain in my lower back. I immediately emailed my doctor and a biopsy and MRI was ordered. It was disheartening to find out it was valley fever again. They hospitalized me as I started amphotericin B treatments. The very treatment that damaged my transplant and would damage it completely (Read: The Fight Continues).
The day after I was discharged from the hospital my mother in law suddenly passed away. Separation from someone who is apart of your identity, your being and all you know is a loss that brings a pain that is debilitating and very hard for the human mind to process. I have learned this losing several loved ones within a year. First my husband’s uncle, one month later my father in law, six months later my mother in law, and a month later my husband’s cousin, all unexpectedly. If you can imagine the grief that has stricken my whole family. I’ve experienced loss but not of this magnitude.
As a family we had to take on another kind of grief. Something that only faith would help us though. I’ve had a good understanding when it’s your time it’s your time. This was a constant topic we would have to talk about as a family. This only made me want to live more fulfilled days. I wanted to continue keep living life as normal as possible because I would always say sick or healthy we just don’t know when its our time. I wanted to be busy living and not busy dying. But losing an uncle and mom to kidney failure really hit my realty.
I lost my transplant completely and had to surgically remove it. This was just a few weeks before we had to say our final goodbyes to our mom. This was another reason I lost words to write. The grief felt numb, I could only feel it second-hand. I had to watch my husband ride the waves of grief as best he could. He couldn’t go back to work because he needed a break from death as he works as a C.N.A. taking care of veterans and often hospice care. He also was caring for me as I recovered from the third reoccurrence of valley fever. Going through seven weeks of treatment for the infection and back to in center hemodialysis. We didn’t even have time to properly grieve with all that was going on. Tears were hard to come by as we were so focused to get my health back in order. Once we got through the hump of the recovery and I was gaining my strength.
We made all the efforts to come down and be there for his siblings. We knew how important it was for our healing and theirs. This was how I healed, time and time again by the people who invested to be there. Daniel started to work with his cousin James painting and slowly started to return to his job. James also lost his dad that year. I could see how therapeutic that time was. From that time they were inseparable and Daniel was making so much progress and was able to return to work full-time. James helped us laugh about our grief. I can’t forget to mention how much our church family came through for us during the time. They all helped with rides to dialysis and other places. It was tough and we still couldn’t repair the remaining vehicle we had. We are thankful that his cousin helped us with borrowing his truck. Time after time we continued to get by and survive.
January 2015 my husband’s uncle passed away from kidney failure. A month later, James passed away suddenly. It was so hard. Even hard to write about now because the pain is so fresh and still very much with us. I did what I did for almost every funeral in my family. I made his memorial service program. I felt honored to tell my family’s stories. It did come with a lot of work. During that time I started to get some pain in my right arm. Yet again I couldn’t understand what I was feeling because of being in the fog of grief. I started to see the scar tissues where my previous shoulder surgeries getting pinkish.
I started emailing my doctor and she sent me to the E.R. twice. After trying to painfully abstract fluid from the shoulder joint they sent me home with antibiotic. At this time I was also trying to transition back to peritoneal dialysis at home. My body was definitely going through it. I was thankful with each time they let me go home and not the diagnosis of valley fever at least yet. I felt I escaped it every time. But the symptoms didn’t get better and it started to blister up. I emailed photos to my doctor and immediately she asked me to go back to the E.R. This time I asked to just be hospitalized because each E.R. trip cost money.
I’m glad I did because I don’t think I could’ve waited any longer. I was able to get an MRI scan and immediately they knew it was my valley fever (again). The size of the infection was the size of a bouncy ball similar to what they found in my hip. Thankfully the same surgeon who successfully operated on me before was available to do the surgery. It’s been a couple years since I had it in my soft tissues and the symptoms was a different. I was discharged from the hospital before Easter weekend. When my husband did my first dressing change we tripped out how it looked like a cross. The stitches reminded me of the crown of thorns. All I could remember is that I’m living a resurrected life.
I don’t know the connection to my grief and my body just giving in. But it’s obvious that emotions can get the best of my health. This has always been since I was a little girl. After all I was born in grief as my mom just lost her mom when she became pregnant with me. I’m named after my grandmother and all of my life I was reminded that was someone I was never gonna know. But I always felt her presence. Afterall I grew up in the room she passed away in. My spirituality has always been because of this. There is definitely many more stories to tell.
I’m in week 2 into my 4th occurrence with valley fever and 3rd treatments on amphotericin B. The treatment days our back to back with dialysis, lasting approximately 8 hours. I feel like I’m in a dream state but God is still giving me words to say. I was mainly encouraged to share again with all the support we are getting. I talked to my husband about sharing what was going on. I normally stick to my health/faith/family stuff but I thought it was time to let everyone know how it has effected us financially as well.
Daniel has taken off since we lost cousin James and no longer has vacation or any paid leave. My sister set up a gofundme online medical relief fund and we are just amazed how our friends, family, our community and even strangers have stretched themselves in this way. It is already helping us to not worry about finances and just to focus on getting through my treatments and healing. We are working on getting my husband to be my main caregiver as he always has been but hopefully he can be paid for it. A complicating process but we’re working on it. Hopefully we can buy a reliable car too.
I don’t know what is in store for us but I do know we are okay today. One thing I learned during my years fighting for my life is to just take it day by day. It’s all I believe God ask of us.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
I am now inspired that it’s time to share my whole story and start writing again. It will always be my healing source. I added the gofundme link on my DONATION page. Thank you to ALL who has already donated. Every time you have poured into me it has only encouraged me to continue the “giving life”. Even though I can’t actively do what I’ve done before I know I can use what I can give. Right now is my fight… my words… my testimony…
Thank you again for your continued support.
Here’s a video of what my treatments days our like