Never Underestimate the Power of Love, Prayer, Faith, Friends and Family
Walk With Me as I Navigate Illness, Family, Love, Faith, Healing & Miracles
I have created this website as a way for friends and family to easily get updates about my Transplant Journey. Thank you for walking this path with me and your continued support, faith, love and lifting me up. This page will also serve as a way for others fighting similar battles to have a place to come for information and guidance. Support system for other WARRIORS! Thank you for allowing me to share with you!
My name is Melissa and I am dying. Now that I have your attention, let me get right to it and share with you what a powerful journey I have found myself on over the last few years. I grew up in the Pacific Northwest, raised in Port Angeles, WA and have spent my adult life in Sequim, WA. I have two beautiful, amazing, talented children that I couldn't be more proud of. We live on 5 acres in a lovely home we can call our own with our furry family member, Aulani. My strong, supportive mother has lived with us as my health declined and she is an inspiration to me every day.
A few years ago I was out for one of my daily jogs I liked to start the day with before heading to a job I love dearly, working as a case manager for my very own Jamestown S'Klallam Tribe. I found on the way home I just really couldn't catch my breath. This was not normal for me but I figured I was coming down with something and didn't think about it for a bit. That was the last time I was able to jog. I saw a provider, who initially diagnosed me with adult onset asthma and gave me a couple of inhalers to try but none worked. This went on for several months until I was referred to a Pulmonologist in Port Angeles and his initial thought was the same as the original provider but I knew something was off. And I wanted answers after several months of inhalers and becoming more and more short of breath. One take away I've gotten from all of this is to never, ever stop advocating for yourself. I spent a very long time being misdiagnosed by more than one person and took countless pointless medications. All of that time was precious to me and I can never have it back. That is time I could have spent on lifesaving drugs that may have slowed the progression of my disease. Instead it took over my body and progressed very quickly while my shortness of breath was continually blamed on something I don't even have. I went to a different provider, who I still see to this day and absolutely adore, Dr. Crim. He really listened to me. He ordered a chest x-ray and had the results right away, at that very same visit. And he immediately noticed something wasn't quite right. He showed me what it looks like when someone is living with lung disease. I remember sitting in the exam room as he went over the images, showing me the abnormalities and it was like he was talking to someone else. I was 38 years old. Lived a healthy lifestyle. How could this be? I was numb when I was sent to the lab for a workup. While they drew my blood, my ears were pounding and my palms began to sweat. This isn't supposed to happen to me. But I quickly pushed those thoughts away and thought, well, it has to happen to someone, right? And I'm a tough cookie with an amazing support system, whatever this is, I won't be alone. And I could focus again.
The Pulmonologist was also surprised by the results and scheduled me to have a lung biopsy done at Swedish Medical Center. Having a lung biopsy is not something I would call pleasant. It was a scary thought in itself but then waking up from surgery with a tube protruding from my side to drain excess fluid - it is a bit off-putting to look at. And the pain was intense! Fortunately almost all of that pain went away when they removed the drainage tube a couple of days later - what a relief! So, I had Interstitial Lung Disease but which one? That diagnosis is an umbrella statement for many lung diseases. They landed on Idiopathic Pulmonary Fibrosis until they could evaluate further. Idiopathic is the medical term for "hmmm... I don't know?". I was referred to the University of WA to see an Interstitial Lung specialist, Dr. Raghu and a Rheumatologist, Dr. Wener. I can't say enough about how hard they both worked to find the cause of my lungs being attacked by my own body, turning my lung tissue into scar tissue and making it incredibly hard to breathe. It was finally determined through a ton of tests that I have Systemic Sclerosis related Pulmonary Fibrosis. Systemic Sclerosis is a nasty little autoimmune disease. Sadly there is no cure for that one and it will also progress in other ways. More on that later! I began seeing them in the Fall of 2017 and had regular 3 month check ups to update my Pulmonary Function Tests, get my regular labs and scans, etc. I was started on supplemental oxygen at my second visit to UW but it was only 2 liters per minute (lpm) and totally manageable. I even got one of those fancy portable oxygen concentrater to carry about with me and lived my life as normally as I could.
Bear with me, this part seems like I am straying but it all ties up neatly in the end so hang tough with me! Two summers ago I found myself to be nauseated ALL THE TIME. It controlled my life more than my lung disease! I missed meals with my own family, I had to have a 'get outta here fast' path in public in case I needed to vomit. It was a very unhappy time for me and my family and I began to lose a lot of weight. I addressed it with my specialists at UW to see if possibly the meds they were giving me were the cause. I saw my primary care provider and was started on all kinds of fun anti-nausea meds (yep, even the suppositories!). I had ultrasounds, xrays, nuclear medicine, you name it. But they couldn't figure it out. The following spring I was finally seen by someone who said, what the heck, lets try pulling out your gallbladder and see how you feel? I was desperate and said, HOW SOON? I was scheduled for surgery two days later to have my gallbladder out. I was hospitalized for two full weeks due to complications and during the surgery, the surgeon noticed something looked off about my liver so she grabbed a sample (what the heck, she was already in there, right?). It was sent off for testing and I was determined to have liver disease to go along with my lung disease. Double whammy. Don't worry, there will be more to come! Keep reading!
Removing my gallbladder proved to be quite effective in easing most of the nausea I was having. WHEW! I was scheduled to see a Hepatologist at UW but the first available appointment was a few months out. And I was feeling okay for the most part so it didn't bother me much. Time passed, I was seen by the Hepatologist who advised me to have absolutely no partaking in alcohol, we talked about appropriate foods and diets. And I was scheduled for an ultrasound and six month check up to see if my liver would repair itself.
I have always been a busy busy busy and independent woman! Even with my diagnosis and knowing I was living with a terminal illness, I continued my life as normal as possible. I continued to work, raise my beautiful kiddos, run the farm, enjoying life as much as possible, which became increasingly difficult as things progressed. By September, I began to notice I wasn't enjoying life because I was just too exhausted. I felt it was time to move forward and let the folks at UW know. I was told I was not quite sick enough yet but we would continue monitoring things. I scheduled my next 3 month check up for February 14th and headed back home to Sequim.
By December I was feeling more and more crummy and was very excited to get to my next appointment at UW. I explained how exhausted and miserable I was and asked again about being listed officially. He said it was probably time and then he noticed the results of my 6 minute walk test. In September I was able to walk with very little issues and they kept me at 4 lpm (liters per minute of oxygen). My walk test at this visit showed I walked a very short distance with my O2 levels dropping significantly even just with standing. 15 lpm was the flow that was keeping me from desating. I don't know if you've ever had 15 liters of air shoved up your nostrils but it feels like being drowned with air via a garden hose! Not much fun! The walk test and extremely high O2 need was concerning and he wanted me back in two weeks to complete what was needed to be officially listed. Unfortunately I never made it to those appointments.
The day after my UW visit I could barely get out of bed. All I wanted to do was sleep and I began to live in a constant fear that I may not wake up because I could feel my body working so hard to get enough O2 and being unsuccessful. By Sunday, February 16th I knew it was time to get to the ER. The doctor ran tests and ordered scans but could find no reason for my O2 needs to be so incredibly high. I was hospitalized at OMC for 3 nights as arrangements were made to find a way to provide 15lpm at home. I returned home and continued to decline even with the amazing set up. By the grace of God, a visit from the Home Health nurse landed me back in an ambulance on my way to OMC. I was evaluated again by the same doctor that had admitted me previously. Again, she could find nothing wrong with the tests she ran and discharged me. Getting home was quite frightening because I truly did need 15 lpm to keep from desating. My attempt to be provided transport to UW via aid car where I could get the higher level of care I needed was unsuccessful, even though both my PCP and my specialist at UW asked for that to happen.
The following morning very early I got a call from the Home Health nurse because she was confused about why I had been discharged. My PCP and UW providers wondered the same thing and a group effort found me on my way to UW via aid car. And it has been a whirlwind roller coaster ride so far! I am thrilled to be given an opportunity to use this platform in sharing not just updates but provide support to one another. Are you buckled!? Take this journey with me via my blog, use the website to learn more about these diseases and feel free to leave a personal message in the 'Have Something to Say' tab located above. We aren't alone! Lift each other up!