Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Feeding Tubes & Total Parenteral Nutrition (TPN), Malabsorption/Dehydration, Recovery & Coping, Symptoms & Complications, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
July 1, 2015
Been having bone pain and low energy lately. I am just not able to do much most days. So I had a DXA bone density scan done (recommended to be done every other year for post TP/AIT patients). I found out I have mild-moderate osteopenia in my hips and lower spine. This is like a step down from having osteoporosis. I honestly wasn’t overly surprised based on my history and symptoms, but being only 32 years old, I must admit I felt sad and a bit disappointed to already be facing a bone condition on top of everything else. Just one more thing to try to correct. Add it to my protein deficiency and other malnutrition. But it is not the end of the world.
I received a phone call from my pharmacy dietitian who voiced her concerns about my low Vitamin D levels. And I also saw my doctor. I have been struggling with low Vitamin D levels for the last 4 years and we have tried everything to try to get the levels back up. But what I did not realize was just how low my levels had dropped this year. Levels should be 30-55. Few years ago I was in the low 20s-high teens. My doctor said I am now at 9, which is dangerously low. He said he has maybe only seen one other person who has been this low. (But from what I have noticed from listening to some friends who are patients, I believe low Vitamin D levels can be a common problem seen with a list of different chronic conditions.) So, I know I am not alone in this struggle. But still, I was a bit shocked and disappointed in myself. Upset with my body and my ongoing struggles of malabsorption. I am always trying my best to maintain my health as much as my body will allow.
I understand my case is not normal and we are all different. And I am unable to absorb the way most people can. It is not an easy fix in my case. But we will try some very high doses of Vitamin D and see how it goes. But at least now I know why I have been feeling so out of it lately. Taking vitamin D by mouth (pill, gummies, liquid), by IV in my TPN and by getting natural sunlight, they have all failed me over the years with maintaining a healthy level of Vitamin D. But hopefully we can successfully get my levels back up to a safer range so I can start to feel a bit more human. I will take an improvement I can get.
I also recently have had low calcium and high alkaline phosphatase (ALT). My TPN has been adjusted to receive more calcium. Hopefully that will help some as well. And if my ALT goes up anymore (been up for 5 months now) my doctor we may want to think about having another kind of bone scan done to make sure nothing else is going on.
What else is new? I have been hanging in there. Honestly, I spend most hours (and days) in bed. I have a good day of being active here and there. I still have my PICC line, still getting daily TPN. GI issues still ongoing. Pain in abdominal area and muscles have gotten a bit worse. BP has been low on and off due to summer heat. Waiting to get my heart pacemaker adjusted. Have an appointment with a new EP heart doctor the end of Aug. Yes, I have a lot of health issues going on all at once. Some days I am still surprised that this is my life. In my dreams I am not disabled. And I often wake up wondering if my chronic illness was just a bad dream. I have learned to adjust with each new struggle. But I don’t think people actually understand how much work it takes just to survive. Still with everything I have and continue to face, I remain hopeful. I focus on realistic goals for myself. I continue to live for the good days were I feel well enough to indulge in the simple pleasures. My loved ones remind me just how wonderful life truly is.