My Life- My Journey
by Vera Henderson
I got married when I was twenty-four years old. While some people thought this was a bit young, I felt like I had waited far too long to start my life with the love of my life. Why do I mention this? Because I use this as kind of a marker – a signpost on a journey that has brought me to a place where life, while difficult, finally makes sense. This journey of mine has been one of light, laughter, tears, and realization.
My sister asked me to write a detail of the “challenges” I have endured over the last twenty-plus years. Here goes.
- After being married for 8 years we had failed to get pregnant, so Richard and I decided to adopt. We contacted an agency and began the process. We had to move into a larger apartment in anticipation of the baby we wanted, where we set up a nursery and even met the birth mother. She changed her mind after she delivered. So, we had to start over. We met another young woman and after waiting four months, we thought we would have a daughter, but the young woman’s family stepped in after the birth, so we were without a child for the second time in 18 months. I refused to go through with the pain of dashed hopes again, donated all the nursery items and decided the two of us would just have to be enough for me.
- Ten years into my marriage, I was in the emergency room for the twelfth time (and on my anniversary, just to make things fun) for an unknown skin condition which causes severe pain and which we finally discovered, after many years, is so rare there is no cure-- Hidradenitis suppurativa (also referred to as “HS”). I was told it would continue to get worse as I grow older.
- Twelve years into my marriage, I was diagnosed with two different heart conditions-- cardiomyopathy and congestive heart failure.
- Thirteen years into my marriage, I finally conceived. But I was told that due to the combination of diabetes, cardiomyopathy, and congestive heart failure, that my heart and body is “too damaged” to carry the child to term. It was strongly suggested that I abort my child in order to save my own life, but doing so was never an option for me. I spent six months of my eight-month pregnancy hospitalized, and due to a series of complications, I had to undergo an emergency cesarean. That day, I became the proud mother of a beautiful 4lb, 6oz baby girl, Maya Ann.
- After two months of maternity leave, I returned to work. Three months after my daughter was born, I contracted the chicken pox virus from a client. Being 36 and catching chicken pox, this was my second time coming near to death. With 105 degree fevers and lungs filled with fluid, it was not a good scene. After a week in the hospital, I was able to come home. I was grateful that Maya was not infected with the virus.
- Ten months after Maya was born, I re-entered graduate school. Between working full time and going to grad school at night, I managed to work myself into the hospital about once each quarter. Fun times! It was during these hospitalizations that I was first told that given the damage my heart had sustained, I probably had about seven years, give or take, to live. The pregnancy took a toll on my heart, as expected, and over the next three years there were numerous hospitalizations. As a safety precaution, my medical team decided that a defibrillation/pace maker implant (ICD) was warranted.
- Three years after Maya’s birth, I had my first episode of V-fib. This is when your heart beats so fast that it stops beating normally and only quivers. I was having dinner with a good friend when I passed out. My device fired and restarted my heart. I experienced what would have been sudden cardiac death, if not for my ICD. This was just the first of (as of this count) 10 episodes of V-fib.
- I could go on regarding heart related challenges, but it would be boring. To summarize, my heart function has continued to slowly decline over the years. However, it would turn out that the doctors’ seven-year prediction of my life expectancy has, to date, been surpassed by over three years.
- In addition to the diabetes and heart conditions, there was also a thyroid condition and the rare skin condition, HS, was beginning to negatively affect my mobility. It required numerous hospitalizations and three excruciating surgeries with the removal of tissue and skin that would require several weeks’ recovery time.
- In the midst of all of this, I developed Gastroparesis, which prevented me from eating and digesting food properly and eventually led to sustained periods of malnutrition.
- So that we could be closer to my mother and sister, our small family relocated to Wisconsin from Chicago, Illinois. My mother was up with me, around the clock, for three days when I began to slip in and out of consciousness.
- When I failed to improve, and stopped responding to conversation, my sister and god-sister began to ignore my resistance and took me to the Mayo Clinic hospital in LaCrosse. This wasn’t the closest hospital, but they knew that was where I wanted to continue treatment upon moving to Wisconsin.
- During my pregnancy, my veins were completely shot. This has made blood draws almost impossible for the past several years. On this particular day, it took a little over four hours for the ER staff to obtain a blood sample. This was only one such instance in countless hospital visits over many years, and is the primary reason I have come to dread seeking medical attention when I need it.
- Just after leaving the ER to be admitted to ICU, I was transferred to the Mayo Clinic hospital in Rochester, Minnesota. I was in a coma for about three weeks, experiencing only brief periods of consciousness, and gradually suffered complete organ failure. I had to be put on a respirator because I could no longer breathe on my own. All of this started within one long weekend while my husband left his job in Chicago (sooner than his final 2-weeks) so that he could get to my side as soon as possible. All of this started before I could step foot into my new home in the city of Tomah.
- After I came to, I was unable to move and unable to speak coherently. No one could understand what I was trying to say and my hands were too weak to hold a pen to communicate by writing. Eventually, people were able to understand what I was trying to say, but I was dazed and confused. Barely knowing where I was and what was going on, my inability to move had me concerned that I would be paralyzed forever. I had to be lifted in and out of bed, and nurses had to come to my room and turn me every four hours. My legs had turned the color of charcoal. The muscles had atrophied to nothing and they were covered in oozing, pulsing sores and blisters. I can’t say that the pain was unbearable, because I endured it. But I would not wish that pain on the Devil himself.
- I developed kidney stones and needed to have a shunt implanted to help remove them. The nephrology team was afraid to operate because they were convinced my heart would not allow me to survive the procedure. However, refusing to do it was a death sentence of its own, as my kidneys were no longer working properly and the toxins continued to build in my bloodstream. Finally, after some very firm but respectable words from my sister, they decided to take a chance, and implanted the shunt. Much to their pleasant surprise, I survived. My family and I, while extremely grateful and very much relieved, were not surprised at all as this was not the first miracle God performed on my behalf.
- Because my kidneys had shut down, I began receiving dialysis three days a week.
- I was admitted to the Palliative Care wing of the hospital and was told, outright, that I was not expected to leave alive. After three months in the Rochester hospital, two hours away from home, I was transferred to a Madison hospital (an hour and a half away from home) for a total of four months in the hospital. I was then transferred to a nursing home/rehabilitation center where I spent the next eight months.
- During those eight months, the fun and adventures of my health continued to test my strength and my faith. I would undergo extensive physical and occupational therapy, learning to walk and write all over again. As soon as I was able to take more than 2-3 steps at a time, I insisted on having my family members take me to my new home now and then so that I could attempt to go inside. We must have made three or four trips like this, each one ending with me getting a little bit closer to the steps from the curb, and then from the bottom step halfway up to the porch, and so on. I was determined that our moving away from Chicago would not end with me living in a nursing home, and after almost a year, I was finally discharged and could be at home with Richard and Maya.
- I was fortunate that the Gastroparesis had subsided for several months, and my family was very excited about my being able to have small amounts of food and water again, and actually keep it down. Especially since they consider me the family chef. Now I could enjoy my own cooking again. However, soon after my long stay in the hospital and nursing home, my gallbladder began to fail. I pressed for an operation to have it removed, and was denied as, once again, the medical team (now at Gundersen LaCrosse hospital) were concerned that they would do more harm to me than good by removing the gallbladder. Each surgery carried its own risk in addition to the risk that my heart would not be able to sustain the effects of anesthesia.
- As a result of not being able to have my gallbladder removed, I began to experience additional pain—excruciating pain—in my abdomen. My pancreas was becoming calcified as a result of the gallbladder disease, and it soon ceased to work properly, as well.
- Since it had become impossible to take any food or water by mouth, I would receive a feeding tube. This was a very difficult decision for me, but after several weeks of debate, I agreed to have it inserted. The attempt to place the feeding tube through my nose and into my stomach failed as the tubing became bunched in my throat. In spite of the same apprehension about operating on me, I had another surgical procedure to install a GJ tube so that I could be fed a liquid diet that would surpass my pancreas, gallbladder, and stomach. This made more sense to me, anyway, as a tube going into my stomach would further aggravate the now calcified pancreas, causing more unnecessary pain. It would be the same as trying to eat, so what was the point of trying to put it into my stomach?
- Prior to receiving the GJ tube so that my body could get some nutrition, I would undergo oral surgery to have all of my teeth removed in preparation for obtaining dentures. I was very excited about the dentures because several years prior, during a surgical procedure in Chicago, some of my front teeth were broken as the result of a breathing tube situation gone wrong. The hospital was not liable to replace my teeth, and I could not afford to, so I spent many years working as a young professional with missing teeth. It was very difficult for me emotionally because while I could attempt to hide my other conditions and appear as well and normal as possible, this was not something I could hide. Now, many years later, I would have a chance to enjoy a new smile. Or so I thought. I always say that life is filled with learning experiences, and I learned that new dentures can be not only awkward, but extremely painful.
- It is now November 2016, and while I have had a few setbacks (open sores on my fingers—new ones appearing almost daily—painful dentures, a feeding tube that has completely fallen out of my abdomen, etc.), I have trained myself to speak with such clarity that everyone says it is impossible to tell I am missing my teeth, and I have had the fortune of being able to eat small amounts of food again (mostly soup, but also soft solid foods) in spite of the multiple digestive issues never being resolved. However, the malnutrition has taken a toll on my body and I am currently unable to stand, making physical therapy more of a challenge and walking impossible. When the toxins in my blood build up between dialysis treatments, it is obvious because it is very difficult for me to stay awake. This has resulted in my having to return to the nursing home/rehabilitation center. I have recently informed our landlord that I believe it will now be considered my permanent address, but that is for God to decide, and I am fortunate to be able to go to my house and be home with my family, as well as visit my mother and sister whenever I feel up to it.
- We had a small Thanksgiving dinner, and I was able to enjoy very small portions of a traditional holiday meal of turkey, dressing, macaroni and cheese, mixed greens, and pie without becoming sick at all.
- One week later, on November 30, I suffered a fall from my wheelchair while at the nursing home. I informed them that I was not hurt, but they insisted on sending me to the ER as a precaution. Well, that precautionary visit has resulted in another trip from the Tomah hospital to Mayo Clinic… in Rochester, Minnesota, yet again. The worst part of getting here this time was that the medical staff was unable, as usual, to get a vein in order to start an IV. The IV is required for me to be transported via ambulance from one hospital to another, so I had the misfortune (a word that does not do it justice) of having a peripheral intravenous catheter inserted… into the bone of my kneecap. I don’t think I’ve ever actually screamed before in my life. Now I can cross “screaming” off my list of things to do. While it only lasted three seconds, it was excruciating, and I hope to never have to endure that procedure again. It has been two years since I was here last… but this time, I have a hole in my knee.
- It is December now. I turned 49 on my birthday last week, and have been upgraded from the ICU to a regular room. I love the people here, but I hate the room. It is much too small and feels like a closet. My sister says they gave me a tiny room because I will be going home soon. I hope she’s right.
- My chest hurts, my skin is raw from being in this bed, and I continue to promise Richard that I will keep the fight alive, but I’m tired. Really, really tired. The thought of stopping dialysis and letting nature take its course (as palliative care keeps reminding me, daily, is an option) is really appealing right now. However, that is not an option for me because I have to fight for as long as I can to be here for my husband and my daughter. But the thought of being at rest—being at peace—just feels right. Everything is going wrong. I can no longer stand, or even lift my feet or legs. I have bone deteriorating in both inner ear canals from ear infections that never healed. The doctors say the problem will eventually spread to my brain tissue. The G-tube (which has replaced the GJ tube) is leaking so badly that the water and Boost supplement I’ve been drinking comes right out of the site. It reminds me of those cartoons where people are shot and the water they drink pours out of all the holes. I know it isn’t funny, but you just have to laugh.
Copyright 2016 Vera V. Thompson-Henderson
December 29, 2016, Tina at Elevate Services said:
Cousin Vera, I just finished reading your story about your life and I must say that you are definitely a walking miracle! Praise our God! It is a true blessing to be able to say that I am part of your family. I can vividly remember the earlier times in your life, when you and Richard were first married, the years you waited to conceive your beautiful daughter, Maya. Memories are awesome. I watched you at work during your pregnancy, when we were employed at Centers for New Horizons. Your strength, your tenacity was amazing. Just as you are today, so amazing! Continue to live Vera! Vera: Language/Cultural Origin: Latin Inherent Meaning: Truth Spiritual Connotation: Strong Virtue Scripture: Psalm 32:11 "So rejoice in the Lord and be glad, all you whose hearts are pure!" Be Blessed my Pure Hearted cousin! I truly love you and I send kisses from your hometown, Chicago! 😙😙💕💖
January 1, 2017, Brandy Brownlee Shaw said:
You are an inspiration.
Vera, I want you to know that you are an inspiration to me. God's hand is upon your life and He is using you to bless so many. I am praying for you often. And know that your life here glorifies Him and when you return to Him He will say good job faithful servant. I thank God that you are here with us now because you are giving us so much joy and love. You are a blessing to your husband and daughter and your entire family friends and relatives. Thank you for sharing your story we love you very much. God bless.