Day 6 UW


It’s day six and I guess I should update. The last couple days have been really rough. My body was given a diuretic holiday, which meant no diuretics for the past two days. This is meant to let make my kidneys recover and get my blood pressure back to a better range so as not to further aggravate my kidneys. I was also given some IV fluids that helped make my kidneys happy again. Well all that sounds really great and everything, but it also made breathing quite a bit more difficult. I’m so extremely short of breath, that turning to my side in bed nearly felt like I was running a marathon. So the past two days I have been using some lorazapam to keep me calm and not feel so much air hunger. I apologize to all of try to call text or visit. I hope you can understand that things sometimes need to take priority with my health and also my stubborn nature refuses to let a lot of people see me like this. I feel very vulnerable right now needing so much help to do things, but I know this is only temporary. I’ve got a good support system here in Seattle as well as having Scott here, his step mom Lori, brother Travis sister-in-law Karly and a very very dear friend who knows what I’m going through, Rebecca (Spokane) is here with me as well. I also have up really good friends here like my sister from another mister, Rebecca (Seattle), who would be here any moment if I needed her and so many other friends I truly am blessed!!

Thursday’s CAT scan showed that I have some “clouding” in my lungs that were not present from my last scan 2 years ago. The team here is ruling out an infection, so they are able to start me on a steroid that will hopefully knock down this inflammation, which could help the breathing, which in turn would let my heart not have to work so hard.  This may help with the fluid retention, then make my kidneys happy (right?). Today is steroid day #1, we probably won’t see any signs for a few days, so I will still be here for a bit. 

Keep reading, calling, texting, sending love and prayers!!   We appreciate you all more than you know! 

Love, Drea and Scott 

https://www.gofundme.com/4gzbpkhc

Day 1 UW Medical Center 


Met with the medical team this morning. Labs have shown that my parathyroid is still high, so I will be seeing an Endocrinologist to further evaluate.  A Cat Scan of my lungs was done last night which showed some infiltrates, definite changes that were not present in a previous CT from 2015.  It could be pneumonia but because I don’t have the usual symptoms of pneumonia like, fever, chills, cough, etc, they are unsure.  Pulmonary docs should be by soon and they are discussing doing a bronchoscopy today.  That is where they put a camera down my throat to see what’s in there and take brushing/biopsies to test for infection.  

I saw my pulmonary hypertension specialist as well, who is planning to do a heart cath tomorrow to get an accurate measure of what my pulmonary pressures are.  

Things are moving along, I am glad that I made the decision to come here. I have a team of physicians trying to figure me out.  I’m an enigma, a puzzle at this point due to my complicated medical history.  I have faith they will get the pieces in place  and I will be back to kicking ass!  

Scott and I appreciate everyone’s thoughts, prayers, and love from all of you amazing friends and family!  The donations to my GoFundMe have been a huge help this trip!

Peace and love, Drea
https://www.gofundme.com/4gzbpkhc

http://www.m.webmd.com/a-to-z-guides/bronchoscopy-16978

Post hospital update

At this point, there are too many things going on medically with me and I am not about to write a medical dictionary to include to this post. I ain’t got time for that! I guess the main thing is  that my lungs are getting worse which causes my heart to work harder to pump blood through my body. Which leads to fluid retention in my abdomen that forces the other organs upwards.  Right now I can feel my liver right up against my rib cage. I have been taking care of this for the past year using heavy duty diuretics to help get the water off. However when you do that,  you’re also putting strain on other parts of her body so my kidneys started to fight back and all the other cells and what not in there or fighting trying to figure out where to go and what to do and it’s like they have a referee in there but nobody knows where to start first who’s going to win this battle. All of this leaves me extremely exhausted and short of breath doing minimal activities. I’m very weak and very very short of breath even changing my clothes are taking off my socks. I was glad my mom is here because I need help getting dressed after I shower due to pure exhaustion.

You can imagine how frustrating this is for me as well as others around you see the struggle. I need to see a endocrinologist ASAP  because something is out of whack with my parathyroid. Spokane doesn’t have an Endochrinologist available that would be able to see me without being on a long 3 to 6 month wait list. So I am  most likely going to be going to Seattle to see my pulmonary hypertension specialist at the University of Washington and see about transferring my care there for the time being.   I think that would be the quickest way to get things resolved and to be able to see the specialists in a timely manner and that will give me and my family peace of mind.  My main motivation to do this right now is because we have a family vacation planned to go to Kauai in March! I am not going to miss that trip! So they are going to do everything they can to fix me before my flight leaves March 1st!

I appreciate all your words of encouragement and prayers and the love you all have showed me this past year. I enjoy knowing that you read my thoughts and often times  help me remember that I am strong. Life is rough, it can be a difficult bitch that can break you but only if you let it!

As I sign off, I realize maybe this is not a very coherent blog.  But it’s real and it’s raw so I’m not going to edit it.

I feel like Dorothy in the Wizard of Oz  off on an adventure to find the wizard. The wonderful Wizard of Oz who is going to help them all. I just need to find my wizard!  A pair of some ruby red heels wouldn’t be bad either!  img_0611

https://www.gofundme.com/4gzbpkhc?u=12367756

If I can keep going, so can you. Persistence and stubbornness helps too.

So it’s a new year right? I’m not gonna talk about that or resolutions I have no intention of keeping.  My only goal is one I have had my whole life and that is to KEEP GOING even if my body isn’t cooperating.  

I’ve known a life of illness and struggle due to side effects to cure the rare cancer I had as a childhood Neuroblastoma.  But because of those treatments I have been fortunate to have these years to live, have a loving and supportive family, amazing friends, the best sister I could ask for,  a phenomenal husband and a son who I can give my whole heart to, who I will do anything for no matter what.

If anyone knows struggle it’s my own mother.  She has had to be strong for me my whole life, sometimes that meant sacrificing her own happiness.  Watching your child going through horrid treatments with the hope they will get better is unimaginable to me.  Yet, she was there. She always has been by my side, making tough decisions so that I can have a better life and see that what I went through better mean something.  I wish I would have seen this when I was younger and we had our own issues. But that is what maturity does to you, eventually being able to see that the world does not revolve around you.

As I write this, my mom is again here by my side.  She moved in with us in December to help us, to help me  and most importantly be here for both my sister and her grandson.  She has made my home complete and made my life so much easier so that I can rest and not overdo myself.  I’m not gonna lie, I feel pretty spoiled right now.  

Which brings me to this week.  I have been struggling the past couple weeks, more shortness of breath and becoming exhausted easily.  I think the cold and very dry air is making my PH/CHF symptoms worse.  I’ve basically been a shut in except for very short outings. Today I was sitting at home bindge-watching Luke Cage with my mom, (seriously it’s a great series) when flowers were delivered.  I had no idea who they could have been from. Well, they were from her!  What? She takes care everything around the house I need, including making meals when I can’t and yet she took the time to send me flowers because I haven’t been feeling well! 

So will I keep going, you better damn well believe I will.  Always forward! 

https://www.cancer.gov/types/neuroblastoma/patient/neuroblastoma-treatment-pdq