Thomas and I met with doctors at the beginning of September. I had taken an extreme turn for the worse and each day was getting more difficult than the day before to just survive the day.
Seizures were more frequent, passing out a daily occurrence and the exhaustion and pain was becoming quite excruciating. We didn't know what to do. Getting into Dr. Goodman at Mayo, even being an established patient, can take months at best. We knew that was not an option. We gladly agreed to see one of Dr. Goodman's associates.
Dr. Goodman scheduled me back to Mayo Clinic for day of testing. They ran all the same autonomic tests again. I knew the results were not going to be good, when they could not even complete testing because my heart rate, blood pressure and breathing would not cooperate. The tilt table was a disaster bringing all types of complications, but none as bad as the breathing machine. My autonomic system, not wanting to kick in, made the testing near impossible. I was struggling for air and with that, my heart did not know what to do and wanted to rebel.
As Thomas and I met with doctors, later that afternoon, the test results were not available. We sat and talked about how serious things had become. We talked of the digressing health I was again facing. We asked about the possibility of again receiving the IVIG treatments and other infusions. We were told with the complications that I received last year during these trials, that they would never attempt that route of treatment again, unless we were in a life/death situation and things were dire.
We discussed my health diagnosis in detail. I was given the cold hard facts. I was told that me beating this disease or overcoming it or even having any expectation of a normal life with this disease and severity was less than 5%.
I was given strict instructions. I was told no exercise and no walking and that I was too sick for a recumberant bike. I was told that with my digestive system shutting down that I needed to eat six small meals and then I could not get up for two hours after each meal. I was told I could not cook because I could not stand for the required amount of time it takes to stand and that with my short term memory issues, the stove was no longer something I could utilize. The list of cant's and dont's grew. The list of changes grew, as well.
Yet, Thomas and I had received an answer weeks prior to this appointment. Thomas and I had both been praying together and independently of one another about what to do and where to go for help. In July, Jodi and Suzi had asked me if I would ever consider doing the IVIG infusions and treatments again. I said I would rather die. That I could do anything once but did not think I could go into these treatments again and face how sick I became. It was too much. So, imagine my surprise when I received a very clear answer that I needed to undergo the infusions and experimental transplant again. I approached Thomas and talked to him and he was beyond relief. He said that he had continued to get the answer that this is how we needed to move forward but he also knew how I felt about that round of treatment. So we called the doctors and told them we wanted to proceed.
So when the doctors said that these infusions were not an option, Thomas and I knew differently.
Sure enough, on Monday, I received a call from the scheduling office at Mayo, trying to arrange days and times for me to come in to start the process over entirely. We knew from our questions to the doctor the week before that if they were just scheduling me for treatment, that I was in real trouble. We verified with the doctors that this was my only shot at stopping the rapid shut down of my body.
Mid September, Jodi took me to the hospital and sat with me all three days while the doctors infused medication to kill my immune system and input new antibodies and platelets into my body.
My emotions and gratitude cannot be expressed to Jodi and her sacrificing three full days of her life for me. I am eternally indebted. And so grateful for all those that took care of Hayden, made meals and helped in rotations of babysitting me for 2 weeks while we made it thru the most critical time.
Jodi and I did what we always do. We laughed. We talked. We went one by one thru the kids discussing their current challenges and celebrating their uniqueness and strengths. We talked of the future. Of Christmas presents. Of teacher gifts and how to do thank you's. We talked and talked.
During the treatments, I was promised that the Savior would speak loud and clear through the Holy Ghost so that doctors and nurses would receive answers. Day one the nurses didn't listen. However, day two brought the fulfillment of that promise.
As my IV broke in my arm and infection seeped in, we needed a new line. For an hour and half, nurses tried to get an IV line in to no avail. A PIC nurse was called in to complete the challenge. She was shocked when the ultrasound machine revealed that they were indeed in my veins but there was no blood actually in them. The nurses really talked to Jodi. Jodi helped them piece together what was happening to me. Each day at 1:30, my body has had enough and begins to shut down. Stats were taken each day and it was determined that my body is in shut down mode and my stats do drop well within the coma levels.
Anyways, they finally got in a line in my upper left arm. Infusions began and since the nurses had spoken to Jodi, they called the doctor with suggestions of switching up my pre-meds. This incredible nurse, could have possibly helped to save my life. She added meds and the frequency of them. As my body would try to slip into meningitis and in rejection of the transplant meds, the benadryl, tylenol and allegra would calm the reaction of my body to fight the treatment.
Day three brought more challenges. Jodi had to leave at 1, and Julie came up to stay the next couple of hours and bring me home. Jodi was uneasy about leaving me. When she got home, and was headed out for the Primary program practice, she called to check on me. I told her I couldn't talk because I was possibly being admitted and was trying to talk them out of it.
Even with the premeds, my heart rate dropped to 31, my blood pressure shot from 90 or so to 148/72. They were NOT happy. Nurses started coming over, techs sat in awe and could not believe how I felt and what all my numbers were doing. I told them it is how I feel EVERY afternoon, terrible but I deal with it. They asked if I was going to pass out and I told them no. I stood and walked. They were in awe with where my heart rate and stats were at. They noted that my heart was struggling to keep up and didn't know what to do, so it was basically just shutting down. They were in complete shock when I could walk. Sure it was a struggle and hard, but it is every day.
Only because my doctor has a "do not admit to hospital" order, was I not admitted immediately. I begged and pleaded my way out. On the ride home, I thought I had made a bad decision. I thought I may die.
I turned purple and blue a couple of times. I struggled to breathe. The pain grew with agony. To breathe excruciating.
However, I felt at peace and reassurance that my Savior stood with me. He stayed with me during that long night of fear and pain.
Day by day, it eased. Day by day, I have seen gradual improvement. Day by day, I am gaining a piece of myself back.
Most of all, I felt wrapped in the arms of my Savior. He loves me. He carries me. Through my darkest hours, he is with me. I know I was to walk this road. Beyond that..... I will continue to trust my dear Savior and shows gratitude for each day that I can stay with those I love and that my Savior never leaves me. What a priceless gift.
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