My five year health anniversary

Now that we are in march of 2025,it has been five years since the vp shunt which controls my excess brain fluid failed. I have had it since birth. It lasted until I was 35 years old, with only a minor revision when I was 13 to give me a longer shunt tube. The tube runs from my brain to my stomach in order to drain the excess brain fluid.

In march of 2020, my shunt failed and my days of having a normal life were over. The doctors here in Spain initially tried to repair my original vp shunt but it was too old. I spent 9 cumulative months in the hospital before they finally transferred me to the hospital in Barcelona.

There I was helped by the wonderful Doctora (in Spanish you put an A on the end for a female doctor) Poca. She replaced my 2 shunts (I now had two shunts because one of my 4 ventricles in my brain blocked itself off from the other 3. So, I needed a dedicated shunt just for that ventricle. 

She gave me two new programmable vp shunts which can have their pressure adjusted up or down via special magnets. This allows the doctors to change the pressure without the need to give me yet another brain surgery.

The problem that I was having prior to Dra. Poca fixing everything, was that my programmable vp shunts were not communicating with each other. One would work and the other one would not. It was causing me a lot of problems. Luckily, Dra. Poca fixed the issue by given me two new shunts that had a technology that allowed them to synchronize together.

I was very sick for a while. I have survived 12 brain surgeries and 9 cumulative months in the hospital. My speech and swallowing have been affected by facial paralysis caused by the increased brain pressure. I now require a walker or a wheelchair to get around. I am not paralyzed thank God. I just have terrible balance now. I also require liquid thickener added to my liquids to prevent them from going directly to my lungs. I needed to have black eye patches on my eyes every night to sleep because I couldn't close my eyes fully due to the facial paralysis. This went on from about 2020-2022. 

Additionally, I had to use baby shampoo in the shower due to the regular shampoo burning my eyes since I couldn't close them. My mouth was also open wide for about two years due to the facial paralysis. Luckily now as of 2025 I can fully close both my eyes and my mouth. 

I was previously on a total liquid diet and I lost 25kg or 55 lbs of my body weight. I was unable to do anything except lie in the hospital bed. I went through a deep depression, not motivated to do anything and having no emotions except numbness. Luckily, I was put on an anti depressant (which I am no longer taking) which gave me back normal human emotions and potentially saved my life.

I have come a long way in the past five years. I have not had to be hospitalized since 2022 (and hopefully never again). I still need thickener added to my liquids. I still have limited mobility and need to use a walker or wheelchair to get around. I also still have speech issues due to the facial paralysis. I can eat whatever solid food that I want. I still need thickener added to my liquids but it is not too bad. Now that I am 40, I need to start watching my weight. I need to make sure that my belly doesn't get too big. However, I think that it is not a bad problem to have, considering how much weight that I lost. 

However, I exercise 14 hours a week (between my private rehab center and my at home exercise). My physical therapists tell me not to set goals too far in the future because that makes them seem distant and unachievable. However, I do have one future goal for myself. To be back to normal life in five years time.

I am tired of being dependent on Jenny and Eliana (who have been great) and I am ready to be a contributing member of society again. I am back to teaching English online again and I have completed an audio version of my written memoirs for my speech practice. Additionally, I have been reading more recently (I received an excellent book from my uncle titled The Glucose Revolution). I have also started a course to learn Microsoft office and another one to learn how to use AI. So I am staying busy.

I am nowhere near as independent as I want to be. However, I have come a long way in the past five years. I hope to be back to normal life in the next five years. I can do my daily stuff without too much help. My quality of life is not amazing but it could be much worse. 

I need to keep progressing in order to give Jenny and Eliana a chance at a normal life. They deserve it. I am so very grateful and thankful to all of my family and friends. To each one of you reading this. I am luckier than I deserve. While I wouldn't wish this on my worst enemy, everything happens for a reason, I wouldn't change anything even if I could. 

To close out this novel, no doctor can tell me when or if these shunts will fail. I certainly don't want to start over with my recovery from scratch. However, having these conditions has made me grateful for everything that I have and every day in which I am above ground. Things are not easy or automatic for me anymore. However, I still have a lot of life left (hopefully) and I am better off than some people. 

Til next time, Tyler 

My premature birth

Last night Jenny was and I were watching a TV show on Netflix called Chicago Med. During the episode they showed a premature baby which weighed just over a pound at birth. Unfortunately, he died. Luckily, it was all fake on the show.

However, it got me thinking about my own birth. I was born in 1984, 3 months premature. I weighed in at 2 pounds and 3 ounces or just over a kilogram. I was given only a 10% chance of survival. I was in the NICU and an incubator for the first three months of my life. 

Because the doctors assumed that I would die, they gave my mom medicine to dry up her breast milk. She was on the medicine for a short time, then a nurse got angry at what they had done and stopped giving my mom that medicine thereby restoring her ability to produce breast milk. 

As of 2025, I have had a total of 29 surgeries. That is enough for anyone! Hopefully, I am now done with surgeries and hospitals. I have had some health issues and challenges. Especially, since my vp shunt failed five years ago.

I still struggle with my speech and mobility. I am nowhere near fully independent or recovered. However, I am not paralyzed thank God or in a coma. I can't do everything that I once did, easily or automatically. 

I still have a good quality of life though. I wouldn't wish my condition on my worst enemy. However, I wouldn't change anything even if I I could. I am truly grateful and a lucky guy. I hope to have many more happy years with my family and friends. Even if I don't, I am happy with the life I have had. 

I am very lucky to know that I don't have a degenerative condition which will only continue to get worse. Luckily, it is the opposite for me. My condition should only continue to improve with time and effort. 

I do so much physical exercise because I am trying to speed up my recovery for Jenny and Eliana. If I was alone I would probably be happy with my current progress. However, the girls can't have a normal life until I return to normal life. 

My progress day to day is slow and small. However, when I think about my total progress in the past five years, my overall progress has been huge. 

My parents are the strongest people that I know. They have been through so much in the past 40 years. However, they have always dealt with everything that has come their way with positivity and strength. 

I am very grateful to all of my family and friends and everyone that has helped me out in the past five years. Thank you from the bottom of my heart. 

Til next time, Tyler