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

Childhood Cancer/late effects

Just three fighters who all had cancer as children.

Sept is Childhood cancer awareness month. It’s a time to honor those children and their families who have been through this dreadful disease and those who did not. It’s also a time to bring awareness that children die every day of cancer and yet only 4% of proceeds earned through fund raising efforts go towards childhood cancer research. 
http://www.icareicure.org/get-informed/childhood-cancer-facts/

This month I was asked to light the Survivor candle during the American Childhood Cancer Organization of the Inland NW’s (ACCOIN) Candle Light Vigil. I was honored to be able to be given this opportunity. A lot of feelings come up for me when attending events for ACCOIN, especially this event. Too many feelings to name but some were, survivors guilt, sadness, fear, anxiety and hope, anger and gratitude.  

The one feeling I’ve struggled the most with throughout my life is survivors guilt.  A ton of questions come up from the guilt.  Why did I survive when many do not. Do I have a special purpose in life and am I living it? Should I have tried harder to live, work, become a better person? Am I trying now? Am I too lazy? I do not want answers to these inner questions nor am I fishing for compliments. They are just random things that go through my head. 

I’ve learned to combat my guilt with gratitude. I know I have lived my life to it’s fullest every day, or try to. It’s something that I am having a harder time doing now because I’m slower and get worn out quickly. But on my good days there is no stopping me! I know I’m so lucky to be here that I so I try to live a life of kindness, openness (even though I can be shy and have resting bitch face), be of service to others and compassion. I have the best support system that there is. My family is amazing and I am no short of friends that I know would do anything for me. Most of all, I know I helped bring the most amazing person into this world. I was always told that I would never be able to have children. Well, I did, and he will be 14 yrs old in a few months. He is an old soul and sometimes I feel he is here to help me just as must as I am here to help him. He is kind, funny, sarcastic (like his mama), has a huge heart for dogs and animals and so very smart! I’m so lucky to have him! 
I’ve also been blessed with having the most amazing husband. He is the most kind and giving person I’ve ever known. Seriously, everyone knows Scott does not get mad! We’ve never fought in the 12 years we’ve been together. I know, you don’t believe me but it’s true. Our relationship is easy. It’s crazy how easy it is, even during some of the hardest times in our lives. He is by my side through all my days good and bad. And no matter what health crisis comes up he doesn’t think of quitting. He holds my hand when  I feel weak and want to give up, only providing me with hope that we will get through whatever life throws at us. So how could I not want to continue on! 

A child who has gone through cancer, no matter how severe the treatment, is not ever fully “cured”. We suffer psychological wounds, lasting physical problems due to the treatments used and our family and friends suffer along side of us. Our parents have PTSD from having to watch their child get these brutal treatments, where some make it and many do not. We should be spending more time researching for a cure to end childhood cancer and for better treatments period. I, and many others can tell you that the treatments used to “cure” me are now trying to kill me. A fellow “survivor” (I don’t like that term but it’s late and I am lacking a better one) posted this article recently. 
https://www.hsph.harvard.edu/news/press-releases/child-cancer-survivors-views-on-health/?utm_source=Facebook&utm_medium=Social&utm_campaign=Chan-Facebook-General

I know some people were hoping for an update on my health crap, but I can’t form those words now, I’m tired. Just know I’m doing ok, I have good days and bad days. Focusing on the good ones and living my life with gratitude.  Please share if you would be so kind. Thank you for reading! Is like to hear your thought, comments, etc! 

 https://www.gofundme.com/4gzbpkhc?ssid=745310201&pos=1

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

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.

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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!

 

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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

Trips galore…on the road again.

Hi all!  Tomorrow, I will be heading with my husband and son to New Mexico where I was born.  We will be there visiting family and eating a shit ton of green and red chili!  I am sure I will be somewhat non-compliant with my low sodium diet because my family has some kind of obsession with salt!  Seriously, it is ridiculous and surprising they all do not have heart disease!  Anyway, we will be enjoying ourselves immensely.  Though, I am a bit scared about the altitude.  Spokane sits at about 1800ft, my house is at 2300ft.  People with Pulmonary hypertension or heart failure do not do well with high altitudes.  Albuquerque sits around 5300ft, is where my mom lives.  Grants, NM, where my dad and most family live (the town I was born) sits at 6400ft!  I hope I can acclimate to it ok but I am sure I will be more tired and more short of breath than usual.  I may have to crank my oxygen way up! While I was in San Diego, at Sea level, I felt amazing!  I even forgot I needed oxygen once and nearly left a restaurant without my concentrator!  I will put up a few articles i found that explain how high altitudes may affect someone with cardiopulmonary problems at the bottom of this page.

I know some of you were hoping t0 hear what UCSD had to say about new lungs.  I am sorry to report I have not heard the “final” word yet.  I should get news day and I don’t wanna write about it until then.  However, I wanted to share some pics from the trip!    I’ll check in when I am home, please send good vibes and thoughts of clean air my way! 🙂

 

http://emedicine.medscape.com/article/901668-overview

The Effects of Altitude on Lung Disease

http://www.altitudemedicine.org/altitude-and-pre-existing-conditions/

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

 

San Diego here we come!

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Just a real quick update as I race around the house getting ready for my trip to San Diego today!  Our flight leaves at 3pm and I am still packing, I’ve never really grown out of procrastinating.  I am probably procrastinating as I sit down to type this,  rather than filling out the paperwork I need to do for my appointment tomorrow!  Any-who, that is the point of this entry isn’t it?  My appointment tomorrow is at University of CA San Diego Transplant team.  It is an all day appointment where they will assess me physically, psychologically (lord help them) and assess my level of support.  It will be up to them based on ALL OF THOSE whether or not they feel I am a good candidate for some new lungs.  I still have mixed feelings on the surgery, which I may delve into at another time.  Ain’t no one got time for that right now, trust me!  I am also not getting my hopes up just looking forward to a doctors visit and a mini vacation with some of the best people!

I am so lucky to have so much LOVE in my life.  So many friends and family have sent me well wishes already to begin my journey.  Please continue to send that amazing energy our way!  Again thank you for the help with my gofundme as this traveling gets expensive and there will hopefully be more trips to  come!  I wouldn’t be half the person I am without everyone’s support and love!  https://www.gofundme.com/4gzbpkhc

 

 

Will I ever learn? I hate limits.

Well I overdid it again this weekend. Went bowling Friday to celebrate Lisa’s bday! It was a lot of fun, harder than I thought though. I would run out if breath pretty quick just rolling a dumb ball!!! Scott told me I could have a spa day if I picked up a split. I am NOT a bowler, in fact, I’m horrible. But I picked it up and now I get a spa day! Yeah! 

On Saturday, Rebecca and I got all dressed up and went to the Strut Fashion Show. That was a great time! I got home late both nights. I’m guessing not sleeping well and too much activity is why I am feeling like shit today. More SOB and very tired. Without my O2 my sats drop into the 80’s quickly. No appetite, I just want to drink liquids cause of the darn diuretic I have to take. I’m just so thirsty! Ugh. I wanted to help with yard work today and was only able to spread my wildflower seeds cause even that was too much work today. Hopefully, I’ll be able to get my starters planted this week. I hate feeling like this because it makes me emotional and think about what I want/should be able to do but can’t.  

My visit to the UW doc went really well. My echo looked great so he doesn’t want to start a new med. He also said that my heart failure is a little bit improved! However, I am also very deficient in Vitamins B and D, and nutritionally deficient. With heart failure people tend to not have appetites. He wants me to see a nutritionist to help correct some of these issues. I also have a date finally to go to UC San Diego hospital to meet with the transplant team! I’ll be going over mid June! I have a lot of mixed feelings about this but I want to hear what they have to say will keep you all updated. For now, I am going to rest and get my mind in a better place because I know that tomorrow is going to be a better day!  

I also want to thank everyone who donated to my gofundme, those of you who send good vibes and prayers! I was able to purchase my inogen portable oxygen machine and I love it!  I will post pics of it once I get some taken! It’s a life saver and gives me so much more freedom! The funds are also going to be so helpful with all this traveling to medical appointments especially out of state! I can’t imagine what I would do if I didn’t have the support of family, friends and even strangers who have donated! I am extremely humbled and thankful, words can never do it justice.


This pic is of me and Rebecca posing at The Davenport Hotel before going to the fashion show.  Rebecca is one of my best friends and also has Pulmonary Hypertension caused treatments to cure childhood cancer.  We share a special bond because of all we have in common. Especially, when both of us need to stop to catch our breath.

Living Off Sour Patch Kids and Hot Sauce!

 

IMG_1719It’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
  • https://www.gofundme.com/4gzbpkhc