Seasons Change: Grad school, minor surgery, new treatment plan

 With many changes ahead I feel overwhelmed, excited, terrified, and like I have a million things to do. Here are the new changes that are coming in my life as these seasons change.

I got into GRAD SCHOOL!!! I got into the Masters of Social Work program at Augsburg University in Minneapolis!! I found out Friday, February 26th a day before the second full moon of 2021, also known as the Snow Moon. I learned that February's full moon is named the Snow Moon because the northern hemisphere gets the most snow in February. Since then we have gotten warmer weather, melted snow, and then another snowstorm but tomorrow it will officially be Spring on the calendar! But let’s face it, we will most likely get an April snowstorm, as the final goodbye to winter. As we have warmer weather, we will be watching the snow melt into big puddles, the grass turn green, and the flowers and trees blossom! The transformation of winter to spring is the messiest seasonal transition with the best results. Spring also seems like it is the shortest season MN has, which is unfortunate. 

However, as this cold winter season changes into spring and quickly into summer...my anxiety starts to take over. The summer heat and humidity, as I have mentioned in past posts, take a huge toll on my health. I spoke in December with my cardiologist about my concerns and asked if we could come up with a different treatment plan. A couple of years ago, I did research about different treatment solutions for POTs patients, like myself. I learned about how well IV saline infusion therapy for POTs patients (along with nutrition/vitamins, when needed) works. 

In the past, I had to go to the ER a handful of times because of terrible flare ups, where I received IV saline fluids along with pain and nausea meds. Sometimes I would get 2-3 bags of fluids and it helped a lot. It helped shorten the length of my flare up and helped me stay hydrated during a flare up. Since most flare ups are caused by dehydration, heat, and humidity--that is why the saline with the IV fluids is particularly helpful.

For me, POTs is not an easy syndrome to explain to anyone. Since POTs is a syndrome and is a dysfunction of the autonomic nervous system there are many symptoms that I live with. These symptoms are not just the high heart rate and low blood pressure but a plethora of symptoms that affect my entire body. My symptoms are caused by the low blood volume and my body's lack of ability to absorb/retain water and other nutrients. To explain my symptoms I am going to list them into two categories: heart and non-heart symptoms. 

Heart symptoms:

~Arrhythmia

~Tachycardia

~Low blood pressure

~Dizziness

~Fainting

~Chest pain

~Fluttering heart/palpitations

Non-Heart symptoms:

~Fatigue

~Headaches

~Chronic pain/body aches

~Cramping in hands, feet, calves

~GI issues including nausea, bloating, diarrhea, constipation, acid reflux

~Exercise intolerance

~Tremors/shakiness

~Insomnia

~Brain fog/forgetfulness

~Sensitivity to temperatures, lights and sounds

~Weakness/unsteadiness

~Temperature dysregulation

Last summer was very difficult as my symptoms increased with my flare ups. I spoke with my doctor about this and starting IV saline infusions once the weather starts to get warmer. My cardiologist agreed with it and I asked many questions and got answers. Since my veins are so shitty because of the low blood pressure/low blood volume and it would not be fun to be poked 1-2+ times a week for the infusions, they want me to get a venous access port in my chest. This means they will be able to access my veins much easier with less intrusiveness and pain to get me the IV saline and meds I need. 

Once I found out that I could start this new treatment and that it involved a major change to my lifestyle, I had trouble sleeping and did more research. I watched videos on YouTube of POTs patients that have ports and get infusions, I asked a couple of questions on my Facebook POTs support groups, I read a few research studies on this topic. I mostly found positive results with helpful outcomes. I spoke with my mom who is a Registered Nurse and my grandmas that have both had temporary ports placed. I only got support and encouragement to go through with this new treatment. 

I feel like I am going to be exchanging one foreign object for another. I have had my heart monitor implanted in my chest for over three years and the battery should be dying soon. The real annoying part is that we do not know when that battery will die. I found out that the port procedure and heart monitor removal take place in two different locations, and it would not be possible to get both procedures done at once. That is something I wish could happen but it just will not. That would have been hella convenient, save time and money, and now I have more exposure to COVID and infections. When I found out I was going to get another foreign object in my chest for what can be a long period of time, I felt anxious because I was just starting to feel relief that I will be getting rid of the heart monitor soon. 

I have scheduled my venous access port surgery for May 7, 2021, on a Friday so I can recover over the weekend. I could have it in my chest for as a long 5-6 years depending on if I get an infection. If I get an infection, they would most likely have to take it out. I do not know when I will start the infusions. I am guessing at the end of May or beginning of June. Whenever I get them scheduled after my port surgery, I will keep everyone updated. I do not feel prepared for such a lifestyle change but I am hoping it will improve my overall health including less fatigue, more energy, less flare ups, less symptoms, and better sleep. I am hoping it will all be worth it. I guess I will find out soon enough.

Thank you for your continued love and support during these stressful and anxious times. I really appreciate it and will keep you updated. Please let me know if you have any questions. Take care!