The Maintenance Plan for my Liver Disease
Ever since discovering that I have cirrhosis of the liver, it has been a series of doctor appointments, lab work, ultrasounds, FibroScan, and changing my life. This new lifestyle is a part of the maintenance plan for my liver disease.
Monitoring my liver and it's condition has become practically a part time job. I am finally beginning to feel like I am getting the routine down. It took a few months and felt overwhelming at first. This is what my maintence plan looks like until something in my results causes it to change.
Index
My Gastroenterologist is Monitoring my Liver Disease
Dr. Feder, my gastroenterologist, has come up with a maintenance plan for my liver disease. She has made sure that I feel supported during this process, and I am grateful for that. She has also refered me to the appropriate medical departments to help with other parts of my liver journey.
One of the doctors that Dr. Feder refered me to was Dr. Lotfi. Dr. Lotfi is an endocrinologist who specializes in metabolism. Since working with Dr. Lotfi, I have been able to loose weight for the first time in years. She has helped me understand better how my liver disease effects other aspects of my body; such as, my weight.
What is the "Maintenance Plan"?
To summarize this plan: have tests done and attend appointments, repeat. My liver maintenance includes a series of blood work, ultrasounds, FibroScan, and even a camera down my throat!
The plan is as follows:
Every Three Months:
Comprehensive Metabolic Blood Panel
Complete Blood Cell Count
Prothrombin Time/INR (Blood Clot Test)
Alpha Fetoprotein, Tumor Marker (Cancer Monitoring)
Every Six Months:
Ultrasound checking for liver cancer, and checking my spleen, pancreas, gallbladder, kidneys, and aorta.
FibroScan
Every Two Years:
Upper Endoscopy (for both my liver disease and my gastritis metaplasia diagnosis)
Every three months there is a follow-up appointment that follows the tests taken during that time. This appointment is where I discover if there are any changes that I should be alarmed about and the ones to be proud of.
Why is this my "maintenance plan"?
Cirrhosis puts me at a higher risk for liver failure, liver cancer, hypertension, enlarged spleen, and other organ complications. To ensure that we do not miss signs of further liver damage or complications, we have this schedule of tests to follow.
If my blood work, ultrasound, or any other scan were to come back with something concerning, Dr. Feder would let me know the news and what the updated plan would be from there. I trust her with my care and appriciate the transparency she provides me with on my diagnosis. From the beginning, she has educated me on the statistics and the information to why we are taking the steps that we are, with my maintenance plan.
I am blessed that my last tumer marker test came back negative, and nothing that we weren't already aware of appeared. That is a win in my book!
I choose to celebrate each win I come across during this health journey. The win I most recently celebrated was testing negative for any cancer markers or tumer markers. At every phlebotomy appointment, I can't help but to feel anxious. I understand that this uneasiness I feel until the results come back normal, it means that I care and that I am in this fight for more time with my whole heart.
Take Away of my Maintenance Plan so Far.
Overall, my maintenance plan is clear and I understand the reasoning behind each step of the plan. There are times where it feels overwhelming having medical appointments all of the time. I understand though that these appointments are important and help prevent a situation that would lead me to having even more medical appointments than I do now.
My Standing Appointment with my Phlebotomist
There is one part of the maintenance plan that gets to me; getting blood work done every three months!
The worst part of my maintence plan is all of the blood work that has to be done.
Most of my life, when I have had to get blood drawn or have an IV put in, it has been a difficult process. A routine blood drawing at times become a game of "which vein will cooperate today?" This has led to me having anxiety towards getting blood work done.
What helps me before my appointment is bringing something to keep my mind occupied while I am in the waiting room. My activities of choice is either working on a knitting project or reading on my kindle.
To get through the blood drawing itself, I have to take slow deep breaths during the whole process. Now that I have become a regular at the lab, I have no shame in my deep breathing game.
Let me clarify something, it is not the phlebotomists fault for the difficult time drawing my blood. My veins are smaller than the average adult and butterfly needles (needles they use for children) need to be used to draw my blood. The smaller needle helps most of the time, but difficulties still happen and then they have to attempt a different vein.
After most drawings, I will have bruises the following day. I am showing this so others who have similar experiences know that they are not alone. For me, this bruising is normal and the complicated process of drawing my blood is too.
I will have to get used to this experience, since I have a standing appointment with the phlebotomist, every three months.
Other Aspects of my Maintenance Plan
Another aspect of my maintaince plan has been:
Choosing sobriety
Eliminating toxins from my diet (artificial foods, nitrates, sulfates, preservatives, over the counter medications that effect the liver)
Exercising 45 minutes a day
Working on my self-care and mental health during this journey
Sobriety
Choosing sobriety at 29 years old was not as hard as I thought it would of been. I know that I am not going to drink alcohol and that choosing alcohol would be choosing death. Even though that is a dark viewpoint, it is what works for me. I have had a fun life with alcohol and now alcohol no longer serves me. The part with sobriety that I struggle with, is that the choice has been made for me by my liver disease.
Eliminating Toxins
Staying away from foods that are not natural has been a part of my lifestyle for a while now, with some slip up moments in between. Now, I have taken this part of maintaining the health of my liver seriously. Part of eliminating toxins that can cause more damage, is eliminating ACE inhibitors and non-steroidal anti-inflammatory drugs. Both of these categories of medications are common to use. Ibuprofen is a popular over-the-counter medication that my household uses. I would have never realized that I was adding stress to my liver by taking Ibuprofen, if it wasn't for my diagnosis.
Mental Health
Mental health is a part of this journey that I am learning the importance of. Working on my mental health and the relationship I have with myself has helped me with handling my diagnosis. Waking up and choosing myself every single day, with the decisions I make, is a huge improvement to how I used to live my life. That change is something I am grateful for and I am glad that I now have it.
**Please note that this is not medical advice. I am in no way a medical professional and it is recommended that before starting anything new, you consult your primary care physician.
This blog is for me to document my journey, compile the information I learn about my chronic illness, and change my life in the process. Information that my doctors have given me, new information that I learn about my disease, and as I grow on this journey I will update my blog to reflect that.**
Thank you for reading the maintenance plan for my liver. As my plan adapts and changes, I will publish updates on this blog.
Have a beautiful day!
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