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! 

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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…. 

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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.

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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

 

One step at a time….then a mile!

After resting all day yesterday and today I asked Scott if he wanted to go on a walk. We used to this every night after dinner but since I got sick we haven’t. In October I couldn’t even walk half a block. I am excited to report that I walked a mile!  We walked the dogs to the park and back home. It took me a while but helped having Buster pull me along.  I am hoping that I didn’t overdo it and that I won’t feel like poo poo tomorrow because I’d like to try it again! 

I know a lot of you are wondering how the trip to San Diego went.  I will write about that soon. In short, the transplant team needs time to discuss in their meeting and take an in depth look at my lung CT before making a decision.  As soon as I know and process I will blog.  Thanks for reading and the constant encouragement! 

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

 

 

New 3D Printed LUNGS Replace Spokane Woman’s “Asshole Lungs”!

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 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!

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.