Wanna hear something weird? Ok, hear me out. I’ve been telling my husband this is what I want to happen, yes it’s my magical thinking but you never know. I want 3D printed lungs. I want to be able to take a pill (you know those little spongy dinosaurs you buy for kids that when you put them in water they expand?) and the pill would be spongy tiny lungs. I would swallow it and it would expand and regenerate/replace my asshole lungs! Then I would just poop ’em out. I know I am a bit odd. But I am going to UC San Diego next month and I will propose this idea to them. They may order a psych consult…OR it may get them thinking. Either way, I feel I have put this idea out there into the universe and set it in motion. I’d like to hear your thoughts or ideas!
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
I didn’t always know what I wanted to do when I grew up. I still don’t think I will grow up….yes, I know I am short, I am done growing though! However, I did develop into an adult, even though I am not “mature”. I laugh at dick and fart jokes, and what not. However, I did manage to go to college and get a “REAL job”. I became a Social Worker but not because I wanted to change the world or anything like that. I am not what most think, a bleeding heart social worker that will bend at whatever poor soul bats their eye lashes at me. I learned that the hard way as an ER Social worker, getting duped by drug seekers who knew how to turn on the tears with their stories just to get meds. Oh no, I am a hard ass, some even called me The Hammer! I believe that people should indeed help themselves, while it was my job to assist them in finding the right resources that will enable them to do so. I became a Social Worker to give back all the energy, love and compassion that my family and I were given when I was a child with cancer.
The picture above was taken in 2012. I’ve always wanted an official picture in front of the American flag like some kind of VIP! Sometimes I look at it and pretend I’m the first woman president. Most of my career as a Social Worker has been at the VA caring for our nations brave Veterans. A career cut too short, nearly making my 10 year pin. I would have been made ten years in April. I worked at the VA as an Acute Care SW, helping to ensure veteran’s were safe discharging from the hospital. Then I took on the job as the Caregiver Support Coordinator. This week I sadly say goodbye to a job as the Cancer Care Navigation Social Worker. I helped to build this new program that I hope will continue through out all our VA’s in the country. It is a new approach to cancer care and helps our Veteran’s and their families navigate what is too often a very complicated system and helps to make sure they get they cancer care they need an eliminate barriers to their care.
I never thought I would have to retire so early. However, due to my health reasons I must now take care of myself and my family. I am very sad to leave and in a state of emotional turmoil about it. I will miss my patients, my coworkers, the friends I have made and most of all the challenges. So on my last week of work, as I pack up my office, I will think about all that I have learned. I will think back to all the lessons I have be taught and patients who have touched my heart. I will thank my mentors, the wonderful supervisors (Cathy and Tom) and amazing friends I have made had along the way. It’s been a great experience. It is now time for me to put my focus toward new possibilities.
I worked three days in a row and I have no words to explain the level of exhaustion I feel. First two days were great. I went to work was productive was able to catch up with work and friends. Maybe it’s the cold air making it harder to breathe? Maybe it’s not and it’s just my disease progressing. Either way, I’m not sure I can go back tomorrow. I’ve been on my new medication almost a month now. I don’t feel any different yet. Good thing is I’m not experiencing any negative side effects either.
I saw a new cardiologist last week and had an echo done last Friday. I will meet with my PH MD on Monday and we will reassess where I’m at and likely schedule another heart cath to measure my pulmonary artery pressures again.
My life is trying to balance family, doctors appointments and working when I can. Im also up to my eyeballs in paperwork trying to fill out paperwork for social security and medical retirement for the VA, while trying to smile, get ready for the holidays, etc. Needless to say I’m extremely overwhelmed, cranky and just want to hibernate and wake up with a new set of lungs!!
I’m bitching a lot I know! So I will go to bed and close saying I’m grateful to my friends and family who are helping support me through this! I appreciate the hugs, check ins, meals and offers of help and hope!
Living with this illness sucks. I had a bad few days last week and realized that it was due to the poor air quality. Pretty much EVERYONE had been out of power for days and was burning wood stoves for heat. It’s been very cold and virtually no wind which has left the air stagnant and nasty. Having PH is like breathing through a straw. Now imagine, breathing through a straw and all you are getting is dirty air. It’s left me more short of breath than usual and causes my heart to race out of control! The above picture shows my 02 sats and heart rate just after taking a shower.
Besides not breathing well, I’ve had a lot on my mind the past couple weeks. While I love to work and LOVE my job, I am starting to realize how hard it is for me to do anymore. A few days there and I am wiped out. It had been suggested that I apply for disability. At first, this was something I didn’t want to consider. Hell, I still don’t but I am not sure how much longer I can work full time. I am not even at work today because I needed more time to recover from last week.
I usually do not let my mind go down the rabbit hole. Sometimes it can get scary down there. However, I need to be realistic. While, medication can help slow the progression of this disease, there is no cure. I know that not one of us knows how much time we have left on this earth. I could die today in my sleep or by going out and getting hit by a car. Any of us could. I have always been one to stress living each day to the fullest as life is too short. However, unless you are given a life limiting disease, you really don’t have to think about the clock ticking.
My one true goal is to see my son grow up and graduate high school and get into college. If I live to see that then I can plan my next goal of seeing him get married and have kids. Until then, I want to spend as much quality time with him as I can. This is the only thing that make me feel applying for disability would be worth it. He is in 7th grade right now so I have only a limited time he will be home. I would like to be here for him before and after school, and be able to take him to his after school sports. I don’t want to leave my husband out either. I want to be the best wife I can be. Going to work leaves me so tired that when I get home I don’t feel like doing anything. This often leaves him to figure out dinner and do all the of the chores. I figure I could continue working and be too exhausted to do anything, or I could focus my energy on family.
Applying for disability is not I am deciding now, but as you can read it is being considered. I would qualify. I looked up my condition on the SSA website and it says that anyone with PAH whose pressures are 40 qualify. My pressures are in the 60’s. I started a new medication called Opsumit on 11/21 and I am hoping it helps making me feel better. So far I don’t notice a difference but I am not having any negative side effects so that is a bonus. Is it more important to me to feel good at work or to feel good at home with my family? I am so torn with this decision and need to look at all my options. I would like to hear from others who have faced something similar, especially if they have PH.
If you want more information on PH please do not google. Go to http://phassociation.org/ for most up to date information.
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.