Live Life then Give Life, Please be an Organ Donor.

Monday, April 10, 2017

I May Whine About It

Hello World!

As I dive into my newly hatched work out plan I immediately hit a giant wall. Oh yeah, That's right - my lungs suck - breathing while exerting myself is really really really hard. Dang. So the smooth plan I came up with has been quite bumpy already. The elliptical is kicking my butt... Hard. Even while I give myself that extra oxygen flow with my home concentrator pumping an extra up to 5 liters of O2 in me, my O2 levels are still way down to 82/83 percent. Now the normal is 99/100. So big difference. One of the best ways I can describe it to you is next time you work out or exert yourself - put a clothes pin on your nose and then only breath through a straw. That will give you an idea of how my lungs work. I would love to quit! But, how am I going to reach my goal with an attitude like that. So I drudge on.

I'm glad I workout alone in the mornings so I can yell in frustration, swear I'm never doing this again, sometimes shed a few years of anger, yell about how unfair things are and what did I do to deserve this, whine like a toddler that everything sucks. All these things I'm feeling are totally normal. And this is a great outlet to get out all that frustration. It's not easy. But the next day, I stair at my enemy (the elliptical) and say "let's get this over with." It's like a weird torcherous game  I just keep putting myself through. 🤔. So if you have any advice that helps you get through those days you are ready to throw in the towel, leave them in the comments. I'll take all the tips and tricks I can.

This week I finally get to implement my afternoon walks as the weather is finally sunny and out! Last week I didn't get one walk in because it literally rained everyday and was still in the 30s. Here's hoping the walk later today goes smoother than that dang elliptical!

In other health news, I just completed my 2nd to last IVIG infusion. While I don't really feel like they are doing a whole lot, the Cleveland team and I decided that since I only had 2 left to just go ahead and do them - can't hurt. So I only have 1 left in May then we wait to see what my lung function does without it. I think it will either get better or stay the same. It better not go back down! In 1 month I go back for a CF clinic visit. We will do PFTs (lung function test) then and I will get an idea of how I'm doing since my April 1st check up in Cleveland.

Outside of the health world, I've started taking online classes for Medical Coding and Billing. Once I complete this course I will be able to find myself a new job. The idea behind taking these online classes is so I can work from home. A job from home will give that flexibility I need  with frequent doctor visits and such while still being able to earn money and feel valuable. It's an exciting new chapter. Good things come to those who work hard and not give up.

I may whine about- but not give up.

Breathe Easy

Tuesday, April 4, 2017

Celebrate the Small Victories

Hello World!

So I haven't said much - health wise - lately because I didn't want to jinx myself. But since about mid February I have been feeling really well. It was super weird, I just woke up one morning and I just felt Good. And feeling Good isn't something I've felt in months!! So I've been patiently waiting for something else to go wrong. And here I am, almost 2 months later and my latest lung function test shows a 3% improvement! How about that - 3%! Hard work pays off.

Now 3% isn't a lot but we have to celebrate the small victories. My tests are FINALLY moving in the right direction. I really wasn't sure what I was going to do if the results were worse. With that being said, it's time to institute a strict routine. Over the last couple months I've been better about exercise but with the winter weather it's really hard to stay on track. 1 cold, crummy day can throw you off for days. As we move towards spring and nicer weather, it's time to kick it up a notch. I'm going to go from exercising once a day to twice. I have my elliptical that I will use in the mornings and in the afternoons, Brian and I are going to start going on daily walks. These daily walks will be good for everyone in the family, me, Bri and the dogs. We've all been cooped up inside all winter. Time to get out there and enjoy the season!

I plan on using this trip to Cleveland as my starting bench mark. I have to go back in 3 months. So in 3 months my goal is 5-10% lung function improvement. I really hate being put in a box and told how things are - so if I can prove Doctors wrong and raise that function I'll be on cloud 9! It wouldn't be the first time that doctors tried to tell me how things are and that they won't change and I did it anyway - I wasn't suppose to survive the coma I was in for 45 days, not only did I come out of that I was out of the hospital 11 days later. Don't live life with limits. You can ALWAYS do more.

In the other parts of my life as we move towards spring Brian and I are getting ready to build our very first goat pen! We are also looking into getting some chickens and ducks. I'm also going to try my hand at gardening. We are thinking about planting some apple trees. We already have kiwi vines and blueberry bushes on our property. We are trying to move towards a more sustainable way of life. We are by no means going "off the grid." I might die without my junk reality TV. But we are working towards raising our own meat and crops - homesteading - and eventually have solar power. Be more independent. Next year we are going to make our own maple syrup! Which for me will be a first, I can't believe I've lived in New Hampshire my whole life and I've never tried making my own syrup! Both of us like the idea of farm life and we plan on turning our little piece of earth into our safe haven for of us to grow old together on.

We aren't stopping or slowing down at all. Having these big plans for our future helps me keep my feet on the ground and pushing forward. I'm not going to let my medical circumstance dictate how I live my life. I Can't wait! Bring on change!!

Breathe Easy

Thursday, February 23, 2017

Got to Start Somewhere

Hello World!

So about a week ago I celebrated my 31st birthday and Brian celebrated his 35th! It was wonderful! Since Brian and I's birthdays are only 10 days apart we basically celebrate in little bits for 10 days. We had a nice family dinner one night with people from both sides of the family, we went to see The Blue Man group in Boston, had a lunch out with some friends, and splurged for a new PlayStation 4. All in all we both had great birthdays!

As for my health, about a week ago I woke up feeling great. Like better than I have in a long time. I'm not exactly sure why. I'm only on 1 new medication, symbacort - which I really don't think would cause this big change. I'm on schedule to see my CF team for a clinic on March 13th. I'm hoping when I do my lung function test that day it reflects how I feel. I would LOVE to see an increase in my numbers. Or if nothing else it stays the same, I don't know what I'll do if I see it drop again. That being said, my CF team has always told me - as well as my transplant team - it's not always about the numbers. How I FEEL means more than anything else. So I'll take this great feeling and run with it. The best thing I can do is while my lungs feel good - work my muscles! That means back on the elliptical. I'm nervous but ready. Got to start somewhere right?

No other news really. Just going day to day at the moment. With the weather this week being in the low 60s I'm so ready for spring and summer. Longer days with bright warm sunshine is what I crave. Working on our future goat pen is a project I'm excited to get into this spring. Along with planning a party for my 5th year anniversary for my lung transplant. Looking forward for the coming events.

Breathe Easy

Saturday, February 4, 2017

It's Official

Hello World!

Well it's official I am in Chronic Rejection.

So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.

I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.

There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.

I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.

That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help.  I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.

And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.

-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.

- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.

I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.

Breathe Easy

Tuesday, January 17, 2017

Ready to Catch that Break

Hello World!

Well 2017 is not going the way it should. My health is SOOOOO not cooperating. My infusions of IVIG are going just fine. Not fun, but fine. However I don't think they are working. I had CF Clinic yesterday and my lung function is down another 12%. FANTASTIC! That puts my wonderful lungs working at a total of 28% of normal.... 28%!!!!

This sucks! I thought for sure it was going to show I improved or at least was staying the same. I feel better, not great, but better still.  So I'm beyond frustrated with nothing working. My lungs were 76% in June... now 28. WHY?!? That is not ok. I just want some answers. I know the world of transplant and CF a lot of the time is trial and error to figure out what works best. But its so frustrating - the unknown.

I'm trying to stay positive and see the silver lining but I'm in too much of a fog right now. With talks of needing supplemental oxygen again - looks like the next step - to possibly needing a 2nd lung transplant - which I'm told is rare to even be able to qualify for 1, let alone get 1. I can feel the depression and anxiety setting in every time I visit the doctors.

This year was suppose to be the year Brian and I look into starting a family - my health puts all that on the back burner. I'm suppose to celebrate 5 years of my transplant... which I do plan to do, but now all I can think is "will I even be healthy enough to enjoy it."

Life is hard. I'm exhausted most of the time. Doing ANYTHING - shower, laundry, the stairs, walking long distances - it makes my Oxygen level drop to 90-92. Normal is 99-100. If it starts to drop below 90... which it has a couple of times,.. I'm going to have to go back on supplemental oxygen. An old friend I don't wish to see again.

Every transplant patient knows rejection will eventually catch up to them. How long that takes is different for every person. There are a lot of factors that goes into rejection from how well the organ matched the patient, to the compliance of the patient, to the organ that was transplanted, to what bugs you catch and fight off - a number of things. So in the back of my mind I knew this would happen one day. I just wasn't ready for it to happen now. And to happen so fast.

I go back to Cleveland February 2nd. Not sure how that appointment will go. Answers would be nice but I'm not holding my breath. There are talks of possibly more Rotuxin (chemo), or more Aparesis (not sure if that's spelt right, but the blood filtering thing). But I'm ready to try something new. I know there are a few more options we can try. I'm not giving up yet. I'm frustrated and angry about the situation but not giving up.

So my glove is wide open, Life I'm ready to catch that break!

Breathe Easy