Who's On My Care Team As A Lupus Patient?

Dealing with lupus and other chronic illnesses, I have a huge care team. It’s definitely not something to brag about but it is just the reality of dealing with so many medical issues. On my care team I have my rheumatologist, pulmonologist, nephrologist, dermatologist, obstetrician gynecologist (OB-GYN), maternal fetal medicine specialist, dentist, head and neck doctor and oncologist. I see these doctors frequently and they all communicate with each other to ensure that the treatment plan is in sync.

My lupus care team

Rheumatologist

My rheumatologist is my main doctor that deals with my lupus and now my Sjogren's as well. He orders the majority of my lab work and I see him the most throughout the year. I usually see him every 3 months unless something happens.

In every visit, we always go through my labs and go over how I’m feeling and if any new symptoms appeared. Whenever I have a flare or if something is wrong, he’s my go to doctor and will send him a message right away. If he is not the best to solve it, he will triage it to someone who is better suited.

Pulmonologist

My lupus has affected my lungs so I see a pulmonologist. One of early symptoms were chest pains and shortness of breathing. So, we usually do pulmonary function tests every year to check how my breathing is. Because of my lung issues I also have to do CT scans to check my lungs.

Nephrologist

My lupus has also affected my kidneys so I see a nephrologist. One of my early symptoms was protein in my urine and swollen legs and feet. This was the hardest symptom to control.

My rheumatologist and nephrologist had to work hand in hand to ensure that I was getting the proper treatment. I went through several medications trying to figure out how to lower the protein levels and thankfully we found the perfect blend.

Dermatologist

Lupus also affects my skin so, just to be proactive I added a dermatologist to check my skin. If I’m out in the sun, I will notice the rashes on my cheeks. With lupus and other chronic illnesses, I am also more susceptible to getting skin cancer, so I wanted her to check every mole on my body. I also noticed that I was losing hair rapidly and my hair was thinning so bad that you could see my scalp. My dermatologist was also able to check on that.

OB-GYN

As a woman, I’ve always seen an OB-GYN doctor. Because of my lupus, it was now recommended that I do pap smears every year. I dreaded this every year, but being proactive is key. Having lupus also puts me at high risk if I decided to get pregnant. So, I was referred to see a maternal fetal medicine specialist. She explained all the risks and all the extra things that I would need to do if I ever became pregnant.

Dentist

I see my dentist twice a year. She does the cleanings and at every visit I hope there is no new cavities. But, after my lupus diagnosis, my teeth has not been the same. My gums are receding, I’ve had tooth decay and then after getting Sjogren's, my mouth was really dry which added more issues.

Head and neck doctor

When I found this lump on my parotid gland, I was referred to a head and neck doctor by my rheumatologist. My visit with the head and neck doctor snowballed my lymphoma diagnosis. He was very thorough in my visits and ordered a neck MRI and 2 biopsies. Without that, I would have never known what was behind that lump.

Oncologist

Because of my lymphoma diagnosis, I now see an oncologist. Thankfully we caught it early enough, that chemotherapy was not needed. Through her guidance we decided on a treatment plan that was best for my current situation while also dealing with my lupus and Sjogren's.

It’s true what they say. It takes a village to raise a kid. Or in my instance, a village of doctors to keep my health in check. I am truly grateful for them all and am thankful that they are able to work together.