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

Breathers guilt

This blog is written my husband Scott. It’s his point of view of all we are going through with my health issues. I cannot imagine my life without him and his insanely positive attitude that helps get me through all of it! 

*********************************

Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. This is the new white noise that I sleep, and wake up to. Am I annoyed by it? Not at all, it’s kinda calming. Do I wish it wasn’t here? Of course I do. As I lay in bed tonight, Drea is staying another night in the hospital. So the white noise of her oxygen machine in our room is silent again. I feel like I should switch it on to fool myself that she’s home.  
The night the oxygen concentrator was delivered was a heavy day, making me realize shit was about to get real. Drea was still trying to process the doctors orders of 24 hour oxygen as Apria was installing my new slumber playlist. The gentleman showed me how to run everything so I could show Drea as soon as she was able to come to grips with her new rubber mustache. 

Our lives have definitely shifted a lot since the O2 had been introduced. The hospital visits, the doctors appointments (here and Seattle, and San Diego), the low sodium diets, the bad days vs. the good days. I’d be lying if I said it’s been easy. It does get tough, but as you have read in her blogs, She’s a god damn tough one, and that helps me out tremendously. A great example of her character, and who she really is, I would come home from work almost daily and she would be sitting in the living completely wiped out cause she saved up her energy and spent it on having dinner ready for us when I got home. Having a 13 year old that is wise beyond his years with a heart of gold is also a key part in our fight. If Drea would ask him to wait on her, hand and foot, all day, he would not hesitate. Evan really is a great kid.

I am deeply saddened for everything that Drea has been going through. And I do feel bad when I’m out doing strenuous activities where lung power is needed. But I realized that I have to do these activities because I can, because I know she would be right there next to me running the dogs in the morning, going on hikes like we used to, and bike rides, if she could. I do get upset when I see someone smoking, or just seeing someone that has left themselves go. Don’t waste what you got!

So if you keep telling yourself that you are going to start exercising, go! Take the stairs, break a sweat at least once a day, take your dogs out daily, cause I know Drea would.  

I’ve had people ask me what they could do for Drea.  I’ve thought about it and it comes down to this; get inspired to go for a hike/walk/run. If she can’t get her asshole lungs better, then at least she can be part of someone else’s lungs. I know she has inspired me to not take for granted what I have. 

I will write again sometime soon, it’s late, I got a lot of work tomorrow. Love you Drea, I love all you that have followed, who have reached out, who have donated ( https://www.gofundme.com/4gzbpkhc seriously this has been a tremendous help ) and who have helped with everything! Thank you all. Good night for now… 

Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. 

It’s not a burrito baby!


Taking some time for myself in the hospital. Guess it takes locking me up here to make sure I rest and relax!  I’m calling it a spa day.  I’ve got a room to myself (with a view),  food is delivered 3X a day and if I play it up enough, maybe I’ll get a hot nurse to sponge bathe me!! 

But seriously, I’ve been feeling bad the past couple months.  I am anemic again so have had a two iron infusions so far.  I’m getting B12 shots, eating low sodium and even making juice!  However, nothing was really helping.  With PH and CHF, people tend to retain fluid in their ankles, feet or abdomen.  Lucky me, I retain it all in my stomach, so I look like I’m about 4-5 months pregnant!  Not cute, especially because it’s not even a burrito baby!  Why can’t I retain that fluid in my butt? I’d have a nice round one for sure!  So when my oral diuretics weren’t working, I made sure to let my cardiologist team know.  I went in today and they said they’d better admit me to the hospital for a couple days to use IV diuretics and get this handled! Having all this fluid there pushes against my organs and puts fluid in my lungs making it hard to breathe, eat and sleep.  So here I am, at the spa, watching the olympics and awaiting my hot tea before I drift off to an uninterrupted sleep.  Hahahaha…I crack myself up sometimes!  

Please send your jokes, good vibes, etc! I’ll still be #kickingphintheballs! Love y’all! 

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

Pity parties happen.

So I cried tonight in front of my son, his friend and husband. Had a rough day of not feeling well. We were talking about ten years ago. Ten years ago I didn’t have pulmonary hypertension. I wasn’t on oxygen. I could do things, active things! Today, I couldn’t put my own socks on without struggling to breathe.  
Pity party for four please with me as the guest of dishonor.  I hate that. I don’t like for others to see the side of me in pain, struggling and feeling sorry for myself. I especially don’t like for my son to see it. He hugged me and I know he worries about me and that makes me sad.  It is too much for a kid to worry about.   This just sucks sometimes.

Liquid filet mignon for lunch on the menu today. 


It always makes me feel a little weird when I go to my doctor and I am the one asking for specific tests and for exactly what I need.  But after living in this body for 39 yrs and dealing with it’s “issues”, I’m starting to get the hang of it.  For the past few weeks I have been more tired than usual. I’ve been more short of breath and my heart started to feel like it was working over time. At first I just attributed it to the traveling I was doing. Maybe I over did myself, ate too many tacos or putting my body through hell in higher altitudes from my trip to NM.  But after nearly two weeks of being home and not getting better, it hit me…maybe I’m low on iron again!  So yesterday I went in to see my doc and asked her to run some labs.  More specifically, I wanted to check my ferritin level.  Normal is between 12-150.  Mine was 34.  Yes, I know, that is within the normal range.  However, when you also account for my other health issues, pulmonary htn and HF, that’s pretty low!  My heart has a hard time pumping 02 as it is, and My UW doc wants my ferritin to be around 100.  So here I sit this afternoon, getting an iron infusion.  I pat myself on the back today, for being my own advocate.  I am also grateful I have a Dr who listens to me and trusts me as well.  We have to speak up for ourselves as patients.  If you feel something is wrong you need to listen to what your body is saying! If you feel your Dr isn’t listening, get a second opinion! 

Just Breathe? Easier Said Than Done.

IMG_2280
Double Rainbow in beautiful Albuquerque!
I am back from NM where I spent two weeks with family.  I had a great time visiting family but sorry I wasn’t able to see some.  As expected, the higher elevation there kicked my ass.  My body felt heavier, I retained more water which made it look like I was pregnant, I felt like I was walking under water, slower and weighted down.  Normally it feels like I am breathing through a regular straw, but that straw turned into one of those skinny bar straws with the thinner air.  My oxygen saturation would drop into the low 70’s if I took off my 02 for any reason.  My heart raced and I had more palpitations.  I was exhausted from my body trying to work so hard to get oxygen!  Much of the vacation was spent sitting and chatting with people and resting as much as I could. It was nice spending quality time with everyone like watching the birds with my Grandpa, doing a puzzle with my Mom, visiting with my dad and step mom, and eating all the yummy green chile that I could!

 

IMG_2153
My AMAZING support system! LOVE them so much! At UCSD for Lung transplant clinic.
While I was gone, I did receive the final word from UCSD regarding lung transplant.  The specialists there turned me down.  They felt my case was too complicated and that a lung transplant would be too risky.  I was certain this would be the case but did not want to discuss it until I had their final answer.  The transplant team  was absolutely amazing!  When we met with Dr. Yung he explained why my case was so complicated.  This was crucial for me as the other three places I was referred to just sent me a letter.  UCSD wanted to take the time to review not only my records but to meet me in person before making a decision.  Dr. Yung felt that was the least they could do for such a big decision.  He said that I would make a good candidate for transplant based on my social supports, my intelligence and the fact that  I was a former medical social worker.  However, he said, that because of my body structure, radiation damage (scar tissue) and potential complications, they cannot in good faith do the surgery.  About the “body structure”….along with radiation damage, I also have scoliosis.  This was partially fixed with a spinal fusion I had done when I was 14.  However, I still have some curvature in which my spine is compressing one of my lungs so that it can not fully inflate.  Dr. Yung said that even if they could get a new lung in that space, it is doubtful that do any good because the new lung would still not be able to inflate properly.  He also said that if the surgery took more than 9 hours to get my old asshole lungs out, the new baby non-asshole lungs would be dead.  That would be no bueno!  Then there is the whole, no guarantee the transplant would take and I would risk rejection.  Also, I would be trading in one chronic illness for another, taking anti-rejection meds that cause kidney damage and put me at high risk for skin cancer, so I would have to stay out of the sun!  If you know me, that is just NOT gonna happen.  I LOVE the sunshine.  In the end, Dr. Yung said he feels that medication for my pulmonary hypertention would be the best for me at this point to help maximize my lungs and life span.

I am sorry if this makes you sad reading this.  I hope it doesn’t.  I am not sad about it.  Actually, I was relieved.  I finally knew why I was being “rejected”.  I now have an answer for anyone who wants to know if I can get a lung transplant.  No, no I cannot.  Honestly, I never wanted one.  I felt I had to go through this to feel comfortable saying no.  It’s complicated to explain but in essence, I was only willing to consider a transplant for others.  And in the end, I found only one good reason to have one and that was for my son.  I wanted to be sure that I had exhausted all options to be here for him as long as I can.  HE was the only reason I would have gone through the surgery and that is difficult to say to people, difficult to say to people  I love and who love me.

So what’s next?  Well, I will continue to go see Dr. Leary at the UW for my pulmonary hypertension.  I see him again in August and hopefully we can get started on another medication to help me breathe better.  I will continue to see my Cardiologist Dr. Everett to monitor my heart.  I will take care of myself and continue to seek out alternative therapies to combat my symptoms.   But in all actuality, I am just gonna keep living and enjoying life!  I will continue to travel as much as I can, while I can!  I am sure as my disease progresses that may get more difficult.  I will go to every concert I want to, spend time with my family, and be a fully present mother for my son!

Please share my story if you think it would help anyone.  Thanks to all the readers, friends and people who reach out to me, it helps keep me going!  I like hearing from all of you!  And if you could share my gofundme.  I am so ever grateful to those who have donated because it has made a huge impact on our lives and not worry about how we are going to pay our bills and health costs!  I love you all!

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

rmdrake