It’s time for an update, too much has happened in the last couple weeks I need to catch you up! So we will play bullet point catch up! So, if you want more details, comment below or send me a message.
- San Diego transplant team called me back after reviewing my records and want to see me in person! This means that they do not feel they can turn me down for transplant without seeing “the whole patient”! Which is weird cause three other places said no without seeing my smiling face but whatever. I still feel that 99% I am not going to be a candidate but hey, it’s San Diego so I will go and have a short beach vacation! I will probably be going there in June.
- Heading back to UW tomorrow to see Dr. Leary and get the results of my sleep study and see how to proceed. My medication seems to be working wonders even though I still have some pretty rough days.
- It’s May and it feels like summer! The warmer weather has been a godsend for my health. I am outside more! I walked around the block with Buster yesterday and barely had to stop! I also walked a great deal Sunday when I met my husband downtown after he ran Bloomsday! This is HUGE because six months ago I was barely able to walk 1/4 of a block!
- Something interesting is happening to my palate. I suddenly love spicy foods, the hotter the better. I also found that I was craving sour patch kids yesterday which I never cared for. Holy crap, I nearly ate the whole bag and then hid it from my son before he came home from school!
- Concerts I will see this month in order: Aesop Rock in Seattle on Friday (if I don’t have a heart cath), Violent Femmes on the 17th, The Cure in Portland with my bestie on the 28th and then I see The Cure in Boise again on June 2nd!! I am so excited!
- After a lot of debating, my best friend set up a Gofundme page on my behalf. I couldn’t be more appreciative of all who have already donated and been so generous! We truly have so many wonderful people in our lives! The donations will help with my medical bills and traveling to all these appointments! With funds already donated, I was able to order a small portable 02 unit. It’s so light wt and will help me get around so much easier! Thank you to all who donated, every dollar helps! Check out the link to learn more about the unit that is going to make me so happy! https://youtu.be/volW7IqOyP0
Sometimes it is the smallest things he does. He has no idea how grand these small things actually are. I am fortunate to have him in my life. My husband is the world to me. I worked a full day today and I am exhausted. Working was great, I was able to go through my thousands of emails, make important phone calls to some of my patients and talk to friends. I got home and immediately helped Evan with his homework and made sure he had everything done that he needed to turn in for tomorrow. I thought about dinner for a second, opened the fridge and quickly shut it, making my way to the couch. I stayed there until Scott came home. Without a complaint or question, he was in the kitchen making us waffles for dinner. They were amazing! Waffles and tater tots that he cooked in the waffle iron. Waffles that were as comforting as they were delicious. It is these moments in our life that I know I married the right guy. He is my rock and I know I would not be able to face this without him. Cheers to you Mr. Wilhelm, I love you!
I decided to start this blog to talk about my experiences dealing with a rare condition and as a way to update my friends and family while trying to keep myself sane. I also hope that this can serve as a tool to inspire/educate others.
I was diagnosed with Pulmonary Arterial Hypertension a couple of years ago. This is basically a disease that causes high blood pressure in the arteries of the lungs. This causes the right heart to pump too hard to move oxygen through and can lead to right heart failure. PAH is relatively rare, however, it is difficult to diagnose and often times is not diagnosed because it mimics other illnesses. I have PAH due to a side effect of the treatments I was given when I was a child to cure my cancer. I was treated for Neuroblastoma when I was two until I was six years of age.
The past couple months have not been easy for me. We had a series of terrible fires in our area this summer and the poor air quality, I feel, sort of kick started the PAH into high gear. Most of you know by now, I was put on oxygen and have been in and out of the hospital. I have been through several tests, missed way too much work and slept a lot! On Monday, I saw my Pulmonary Hypertension Specialist, Dr. Joseph (Dr. J). The plan is to start me on a new medication called Opsumit. This drug will hopefully, help slow down the progression of the disease and help improve my life by helping increase my endurance, walk farther and do normal things without becoming so short of breath. I hope to get started on that next week when all the paperwork, insurance has gone through.
Dr. J also recommended that I go to the UW to be evaluated for the potential of a lung transplant. This is huge and honestly scares the shit out of me. He said that because of the damage the radiation did to my lungs to cure my cancer, it has left me with 42% lung capacity. This will unfortunately continue to decrease as I age. I have strong feelings about this but trying not to let my fears spiral out of control. After all, it is only an evaluation. I don’t have to commit to anything yet.
It’s funny because sometimes I feel that I am looking at all of this from someone else’s body. This isn’t really happening to me is it? Haven’t I been through enough already? But it is me and I am going to do what I always do, laugh, keep my head up and pretend I am not scared.