"Look at you! What a difference a couple of weeks can make," my local surgeon exclaimed at my follow-up appointment with him on Monday.
When you are recovering, it is amazing what a difference one week can make. Since my last appointment at Johns Hopkins at the end of May, I have been working diligently to condition my body again and promote healthy healing. I am not going to lie- it has not been easy and there have been many times where I am limping in pain on the treadmill, but I keep going because I know that the walking and exercise can only benefit my healing body.
The last several weeks have been nothing short of busy and a tad bit overwhelming. For some time now, we have known that my insurance coverage under my dad would run out on my 23rd birthday (June 14th). Now, most children are covered under their parents' insurance until age 26, but unfortunately, the dependents of veterans have gone overlooked. CHAMPVA, my dad's insurance, only covers until age 23. For this reason, I was forced to apply for West Virginia Medicaid to ensure that when my coverage with CHAMPVA runs out on my birthday, I still have access to health insurance. We were concerned that West Virginia Medicaid would not extend out-of-state to Johns Hopkins Hospital, but we were optimistic that with the right referral, they would approve my continued care at the hospital that I have been cared for and had surgery at for the last year and a half.
Despite our optimism, however, we found out the week of June 5th that West Virginia Medicaid had denied my return to Johns Hopkins Hospital to see my surgeon for my post-operative appointment on June 21st and to have my Hickman line removed. This was devastating news and placed a great sense of urgency on the fate of my at-home nursing care and removal of my Hickman line. On June 13th, any orders, procedures, or appointments by Johns Hopkins would come solely out of my pocket.
For this reason, it became vital that my Hickman line be removed as soon as possible to allow my at-home nursing to end. I did not like rushing the removal of my Hickman line and neither did my surgeon due to my history of complications and current state of malnutrition and acceptability to dehydration, but we had no choice.
After a series of frantic phone calls to Johns Hopkins and my at-home nurse on June 7th, the removal of my Hickman line was scheduled for the very next day. So, on Thursday, June 8th, we made the long drive to Johns Hopkins Hospital in Baltimore once again.
After a quick blood test at the outpatient center, we headed to the main hospital for Interventional Radiology. After a little bit in the waiting room, I was taken back to a pre-operative room on the floor. My emotions were mixed: I was excited to have my Hickman removed, as it represented my increasing health (and so i could finally shower without squares of plastic coverings all over me), but also apprehensive about whether I would be OK without it.
I tried to do a little research on the removal of Hickman lines on the internet ahead of time to ease my nerves and answer any questions that I had. While researching did help, I could not help but feel a little nervous for the removal.
I was given a hospital gown to change into and then instructed that the doctors would be in shortly for the removal- no numbing, no anesthesia.
I tugged at the stiff gown and listened to the familiar sounds around me. After only a few minutes, two doctors entered my room with the kits to cut my stitches and remove my line. They explained the process to me in detail and then removed my dressing, cleaned the area, and began cutting the stitches holding the Hickman line in. Once the stitches were removed, they explained more about what to expect during the actual removal.
"You might feel some resistance as I am pulling the line out because we placed a disk under the skin to hold the tunneled line in place."
I felt the tunneled line under my skin. Thoughts began racing through my head- disk under the skin? Resistance? This is coming out of my heart and they are just going to pull it out? I tried to calm my active mind and place my full trust in the doctors standing in front of me.
"Are you ready to get this out?"
I nodded.
"Ok, we are going to lay you back a little further. How are you feeling?"
"Good!", I squeaked, a few tears starting to well up in my eyes.
"Ok, you are going to take a deep breath and then when I say go, you are going to exhale and I am going to pull the line out. Ready?"
I blinked away the extra tears and took a deep breath.
"And exhale!"
I felt some resistance and a little pain and then the line was out in a matter of seconds. I was Hickman free! The doctor then applied significant pressure to the area for about 10 minutes to stop any bleeding.
The last year has taught me many lessons. One of the most valuable, though, has been that things are always envisioned worse in our minds than they actually are. Getting my Hickman line removed was a scary and painful process, but it was also something that was completely manageable and nothing like what my mind had envisioned it would be. Often times we fear the unknown for no reason. We doubt ourselves, fill our minds with worry- all to be proven wrong. Next time you find yourself worrying about an upcoming event, try to remember that you are in control of your thoughts and worrying about the upcoming event and creating scenarios in your mind is not going to change the outcome of the event at all. It just causes you unnecessary worry. Choose instead to feed your mind positive, confident thoughts because, in the end, everything is going to be OK.
The removal of my Hickman line meant that my at-home nursing care would end just in time for my insurance to run out. How are those for early birthday presents?
It feels strange not to have a nurse visiting 2-3 times a week or not reaching up and feeling a line tunneled under my skin or flushing my ports with saline and Heparin every night before bed, but it also feels freeing. It is now my turn to go out on my own and continue to nourish my body back to health.
It is disheartening that my next post-operative appointment in Baltimore will not be covered under my insurance, but, where there is a will there is a way. Thank you so much to everyone who has shared and donated to my GoFundMe. You are truly helping my family and we could not be more grateful for your kindness.
I hope everyone is having a happy and healthy Summer so far! Stay strong and remember to appreciate the simple things in life.
- Kristen