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

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.

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

 

A new accomplishment!

  
I’m feeling quite accomplished today! I just went grocery shopping by myself for the first time in FOREVER! While the pic above doesn’t look like much (those bags were heavy) it was a lot for me.  I had to stop to rest a lot, especially with bringing them inside the house, but I got it done! I handled it!  Thanks to the warmer weather, I’m able to do more!  

My husband made me cry!

My husband made me cry Sunday afternoon by teaching me about drawing using perspectives, horizon lines and focal points. When the lesson was finished and I looked at what I did I started to cry. It felt good to learn something new and see progress, after months of not working and feeling like I’ve lost myself. On Sunday I felt a glimmer of something I didn’t even know was there.  Who am I really?  I was a social worker,  went to school and obtained a master’s degree in the field.  I worked and loved my job until having to leave.    However,the last six months of being so sick, I haven’t felt like I’ve really done anything. Nor have I wanted to do anything. Now it’s time for me to learn all the things I’ve wanted to but never had “time”?  Am I an artist?  Maybe there is a Frida Kahlo hidden somewhere deep inside of me dying to get out?  I am going to continue to learn and get my paints out again!PicCollage

The iron infusions I have definitely helped me have more energy!  I am less tired than before and no longer feel like need to nap every day.  I do wear out easily still, so I need to remember pace myself.  I have been very busy the past few weeks.  I spent some time in Seattle for my son’s spring break.  We had so much fun together!  We hung out with family and went to the zoo.  I was able to have some quality time with him just mom and son!  We went to the aquarium, explored Pikes Place Market, and he ate all the sushi he could find.  He is the kindest, smartest 13 y.o. I know!  He takes such great care of me too.  He didn’t complain once that I walk too slow or need to stop to rest.  He reminds me to take my medications, offers to carry everything we have and will take my arm to help pull me up a hill.  I am a very lucky mom to have a son like him!  The best part of all of this is being able to spend this time with him!

When we returned, I FINALLY had my sleep study!  I slept better than I thought I would with all the wires/electrodes attached to me!  I won’t have the results for a bit but the sleep tech did tell me that I didn’t have any major “breathing events” and she did not think they would need to put me on a CPAP or BiPAP which would be amazing! Keeping my fingers crossed because I really do not want more machines in our room! I have an appo at UW again in May and hopefully, will have an idea where to go from here.  Until then, I will just keep truckin’ along.  Thanks for reading and for all the comments and support!  They really help me get through!IMG_1523.JPG

Miraculous in question…(see what I did there)? 

  
I’ve been a childhood cancer “survivor” for 32 yrs. but did I survive it? I’m still dealing with the effects of the treatment, and it gave me PH and now heart failure. So what exactly did I survive? My illness just morphed into something else…a chronic illness. I’m not complaining even though it does sound like it. If I didn’t make it, I would have died at a very young age. I actually did die once. It was during a surgery, I became very hypokalemic and the surgeons told the staff to inform my family to call the priest to give me my last rights. I am not sure how old I was but I think I was four. I can remember “dying”. I was in the operating table. My eyes opened and I could see the surgeons, nurses, etc all looking at me. They were all gowned and gloved. I can still picture the room with all the sterilized shiny equipment. I began floating above my body but didn’t look at myself in the bed. I didn’t see any light but I just felt a signal that it wasn’t my time. I have no other memories of that day.   

My grandma always talked to me about that day though. She said they called the priest to come. But she also called a Native American medicine man that she had been having me see as well. She wanted him there but he was out of town that day. She said that during the call he reassured her that I was going to be ok, that it wasn’t time. She was very upset but believed him. Next thing she knew, someone came out of the operating/recovery room and said I was doing well and asking for my grandpa (I was quite the grandpa’s girl)! Whenever my Grandma told me this story she would say how much of a miracle I am. A miracle…hmm I’m not sure about that. But I’m not sure I’m a “survivor” either. I’m just simply someone who has no other choice but to keep going. Putting one foot in front of the other, with a slower gait now, but I just keep going. I refuse to give up or give in to my struggles. I am not a quitter.  
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O2 4 Life!

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I’m getting so used to the oxygen cannula on my face, I barely notice it anymore. It’s part of me now. Still annoying most times but it helps. I had a friend who hasn’t seen me in a while ask if now I look like one of those “little old people carrying their oxygen around”? I can honestly say, no! I don’t look old, little, well that’s another issue! But I definitely don’t think I look old with my O’s. Guess that’s why it’s so shocking for people to see me. Strangers stare cause you don’t expect it. When I have it off I don’t look sick at all. Makes ya wonder how many others suffer some kind of chronic invisible illness they just don’t tell anyone about.

Up and up…down and out but coming back up swinging! 


The past week is been rough, I just haven’t felt good since Sunday. I’ve had more shortness of breath, I haven’t been sleeping well and even though it sounds weird, I just feel like my heart is too big for my body. It’s hard to explain but it just beats too hard. Guess it’s disappointing that I’ve been feeling better the past month and now feel like shit again.  I went to see my pulmonary htn doc. He sent me for an echo. Just heard that the echo was fine but there may be some fluid in my lungs. So had to go get a chest X-ray today. I tell ya, it’s a good thing I am not working cause having a chronic illness is a full time job in its self! Well, the X-ray checked out fine too. Which is all good, don’t get me wrong! I’m happy I just wish I knew what is causing the changes.  Maybe it’s just the disease. It’s a tease when I feel good. Like I think that maybe I’ll feel good always. Kinda like you don’t really notice your teeth until you have a toothache.

In other news, I’ve decided this is the year of the concerts for me!  So I’m looking for some shows for April to fill up that month hopefully in Portland! Let me know if you hear of anything!

Oh one last thing to throw a wrench in my emotions.  When I saw my pulmonary doc he said he wanted to send my records to one more place regarding transplant. Remember my last post talked about getting turned down by three places and I made peace with it? Well, Dr. J went to a conference in San Diego recently and wants some of the cardiothoracic surgeons he met to take a look.  It can’t hurt right? I honestly do not think the answer will be different but whatever. I also admire and love that he doesn’t want to give up. So yeah, of coarse I gave him the go ahead.  Who knows, even if they say no about transplant, maybe they will have other options on treatment for me.

With all that I’ve been through in my life I’ve learned that no matter what, life is too short. So I’m doing my best to live in the moment. I try not to think ahead too much. I try not to look back, but put my attention on the here and now. So eat your dessert first, drink all the wine and go to every concert you desire!