Thankful

Being at home as much as I am, and alone, I have a lot of time to think. This can be a good thing and a bad thing. When I have time to be in my 'studio' I keep the music playing just to drown out my thoughts.

Last week Wednesday afternoon I was sitting with a new doctor, a hypertension and nephrology doctor. My blood pressure has been high and my kidneys are working at about 50% of what they were before my transplant. So my current standing is this, diabetic, hypertensive, high cholesterol, kidney issues, and bone density which has decreased instead of increased as hoped. So never having met this doctor and he not having read my chart AT ALL, before coming in he was surprised to hear my whole story in about three minutes. What I walked away with other than three new prescriptions is that my life before the ventilator has become a blur. I am not sure if that is because that life no longer effects this one because I don't have those lungs or what. Every time he asked a question it was, 'I think before the vent' or 'maybe it was on the vent', I just don't know. Call it PTSD or just plain forgetfulness but how does one whose life consisted of such turmoil day in and day out forget so much?

I spend many days going between two thoughts, time on the vent and my new daily life.

Having been on the vent is such a long time ago it has been over a year since my transplant. I however can put myself back in that room in a heart beat if I let my mind. I have moments in time that I remember. I have memories of my aunt being outside my window across the street waving, that was priceless and also one of my best memories. I remember my grandma's last visit, and sadly her funeral via internet from my room as my brother set up so I could watch it as it happened. I remember when the panic would set in every afternoon toward, the end, as my mom would wash my hair, suddenly I felt like I couldn't breathe. The fear of having a machine breathing and being in control is scary. I remember the night RT Ashley sat at my bed side while I fought with the vent, feeling it wasn't in sync with me.

I remember the night before my transplant when the article came out in the paper, for the first time in months I felt calm and didn't go to sleep wondering when it would come. Chris and I had finished Seven Brides for Seven Brothers, Mark was my RT, and Nicole was my nurse. Thanks to my pastors for bringing me to a point of contentment too, I was ready to leave this earth if that was the plan, I was tired of struggling, tired of waking up at six every morning to the same routine, and hating every suction and every beating and every vest time. The best part about RT was the therapists, not all mind you but the good ones know who they are. The lack of control in everything was the worst, when you are always in control it is a nightmare to let go.

Skip forward 12 months. This past week being Thanksgiving and all about being thankful, I was blessed to spend the time with all my family this year. First meal back at my mother-in-laws house since Spring of 2011. This Thanksgiving my siblings and their children all came for Thanksgiving and I got to spend every day with them. I even had my brother, sis-in-law and the two nieces over for lunch and we got to do some artwork together. As I was moving about that day and up and down stairs I couldn't help but think how great this was and how lucky I was to have these days with all of them. I sometimes stop and wonder what would be going on if I hadn't made it. It doesn't plague me, but I do wonder. I also know that someday that will be the case, but I will cherish these moments. I will cherish the things like Kai saying the word 'her' instead of 'she', or the way he crinkles his face. I will cherish the way Josie always finds a way to be close, even as she gets older she isn't afraid of laps or hugs, or any form of affection. How Grae sits and reads a book so big I would have cried at her age if someone gave me it, but she loves it. The girls laughing together is like music. And Cooper the one who didn't get to stay, that boy has so much love in him and he is so sweet.

Each moment is priceless, and my family means the absolute world to me. I would be nothing without them, they have been through hell and back with me.

So maybe there I days I think too much, but I maybe that is a good thing. I get to chance to relive the worst part of my life but followed by the best part of my life. It may not be perfect but being able to have one more day is better than anything.

Defining Myself

I think I said at one point I was going to try and get better at posting. I think I will try that again, maybe I need a more specific plan. Such as plan a post every Tuesday or Wednesday. I can collect ideas through out the week. Goodness knows I think about ALOT of things, especially when I am alone, at home, cooking and or doing other things around the house.

At this particular moment I am realizing my laziness has caused me some discomfort. What discomfort you ask? I choose to cut up my Serrano chili without wearing gloves - oops. Today I have two doctor appointments so I am trying to get dinner in the crock pot, tonight's menu, Chicken Tortilla soup. I have combine two recipes, one from Pinterest and one from Ree Drummond. We shall see how this tastes.

Yesterday, as is every Monday, was transplant support group. I don't go every week, other things going on, like my MCAD class that was every Monday for two months. Sometimes I am just tired by 4 pm, so I don't go. But when I do go I feel good when I leave. I realize that support groups aren't for everyone. I started going, very infrequently, when I was on the vent. I was invited by my transplant buddy, George, so I went. The longer I was on the vent, and then when I had to leave my room only on the portable vent I went a whole lot less often. One gentlemen that I have gotten to know over the last year plus, told me the other day I had a very emotionless face when I was on the vent, or rather the same expression, possibly fear. He also told me he really thought I wasn't going to make it, and he is happy he was proven wrong! Each meeting has many similar people but then others who are past transplant recipients who come back for their check ups and others who are on the waiting list. I can't tell you how many people I have meet over these many months, but a lot.

I also learned something about myself. As I struggle with the realization that the Graphic Designer I once was no longer exists. Not that I don't do it, in fact I do, but I also have stretched my artistic talents further than just digital art and frankly I love getting dirty creating with paint, pencils, and inks. There is nothing like it. But being the CE graphic designer, in some way defined me, it was something I put my stamp on and it felt good, even though stressful at times.

I have had, since transplant, a hard time defining myself, when I was on the vent I had many conversations with my brother about this life I was living at the time, patient, CFer, unknown future. Since my transplant I have had a hard time defining what this new life means, and often times wondering why I received this gift, why I was given this chance when so many others will not be so lucky. And if I am not the graphic designer for CE, who am I, what am I?

What I am is a survivor, I have been given a chance to redefine, or rather finally define who I am and why I am here. The one thing I get great satisfaction out of is meeting other lung transplant recipients or those waiting. I realize that each one of us has a different situation, from the underlying health condition to the place we live in this country. But the one things that is the same is that it is a struggle to understand that someone will die to save our lives, and what will life be like with new organs. Will the pains, and difficulties with transplant ever subside. Those are the things that bring us all to the same point.

I have meet another CFer, who is walking the same path I did a year and a half ago. I can't do much for her physically but I can give her the encouragement she needs to make it through this. I think support is the greatest thing anyone needs when dealing with this kind of situation. She is in great hands medically. CFer's are already resilient people, they know how to fight with all they have. But that positivity is imperative.

So, back to what I realized. There is nothing I know more about then what I have gone through these last many months and my knowledge, however difficult some of my memories are can help me help others. When it comes to life I think that is what it is about, our relationships with other people. It is our responsibility to help others when we have the knowledge to share. I love being able to share, and in some cases ease people's hearts. I spend 45 minutes talking to a woman I had never met about her husband 5 day old double lung transplant, by the time we were done she visibly was more comfortable. I didn't tell her things would be perfect but did say, bumps were normal and time would improve things. I remember having more questions than answer after transplant, and I know what these people are wondering.

What I realized is that I am an expert, of sorts, in something I never looked to be an expert in. Sometimes we look so hard we don't see what's right in front of us. I am still not exactly sure how to define this, but I will figure out how to fully share this knowledge I have. It makes all I have gone through worth something, suffering is difficult when going through it but if there is something to come of that suffering for someone else, it is worth every difficult moment.

One Year Ago Today

One year ago today, October 23, I received the best gift of my life. A gift that one can never thank the giver for. Today I celebrate the one year anniversary of my new lungs in this old body. Okay old is relative but my new life with these lungs is beautiful.

Amazing!

Abundance

Today was one of those fall days you dream about where it's a little chilly, rainy, and it's the weekend so sitting on the couch watching old movies is all but okay. I however did not do that. Apparently it is also the day to bake, and bake things with apples. My sister sent me a photo of her apple crisp, just as I put mine in the oven. She invited me over to have some, I would love to if only she didn't live 1.5 hours away. I had a good laugh about that.

I also baked up my squash and froze that today. I had purchased four squash at the Farmer's Market last weekend and today finally felt alive enough to take care of them. I love squash and now I will get to enjoy it during the winter months. This week seemed to be my week to freeze things. I cleaned and chopped onion and green pepper for the freezer also. Guess I am hunkering down for winter, kinda like the Ingall's family but nothing in my freezer came from my hard, sweat over gardens. Nope mine came from someone else's. Next I figure I will buy a side or quarter of beef for my freezer, then I will truly be set.

Of course all this will come crashing down on me tomorrow when I have to actually function for the day and my body will then want to sit on the couch. Likely it will be a gorgeous day!

I am watching the calendar closer these days. You know when your a kid and your birthday is just weeks away and it is so exciting? Well my first, 'second chance at life' birthday is just ten days away and I still can't believe it. I can't believe that we have made it back around to another October, let alone soon to be 23rd. I recall there being some weird things around that day and I am trying to remember all that happened the day before. I don't remember anything past 7 a.m. on Oct. 23 until I ate the best popsicle of my life after surgery. The awful pictures tell that story. I will see what I can recount from those days over the next few. I sometimes wish there was a video of my surgery (which there probably is). I would like to see it. Gross as it may seem, it is also quite the miracle and how often in life do we get to experience that.

I see the doc on Monday. Results and further bronch discussions I am sure. As I was all prepared for a stent and didn't get one, probably a good thing but so curious when and if I will ever know life again without a PICC line.

Time to go put my feet up for the night, it's been a busy day.

Happy harvest everyone. 

Autumn Winds

Fall has arrived! The air is crisp, the leaves swiftly blowing across the lawn down the street and into someone else's yard. Though the colors are quickly receding it has been enjoyable to watch summer leave and fall come.

I had a great summer, minus the health issues. I got to enjoy so much time with my friend Karen at her pool. It was a great time, I usually included it as part of my exercise, meaning I would got for a walk and end up at her house. Due to my PICC line and transplant restrictions I had to keep my right arm out of the water and my face. Other than trying to fall into the deep end where the shallow goes into the deep there were no mishaps in the pool.

After that last visit in August, I believe I haven't had much walking outside which is sad. It has nothing to do with the pool but rather with how I felt and the weather. I am mostly tied to my treadmill these days, there were many days over the weeks when I didn't even get on the treadmill I felt so rotten. But today, knock on wood, as last time I boasted about feeling better I was slammed a week later with feeling like shit. So I say this lightly. My numbers have been increasing in the lab these days. Today I blew an FEV1 of 2.65, which translates into a 84.2% lung function. I think my highest blow in the lab is above 2.7+. This has been one wicked climb back up a hill.

The real issue still exists, and 'what is that?' you ask! That is where the scar tissue from the new lung meets the old airway likes to shrink. Part of the reason I have been on IVs every six hours for the last two+ months is because with that airway closing I can't cough out any junk in there, thus collecting and causing infection. I also now have fungus in there so I do five different rounds of inter venous medicines a day, the 4 am is the worst. It never fails the alarms goes off at 4 am and I can't decide in my sleepy confusion at first if I am hooking up or disconnecting. The med takes an hour to run in so I sleep for the hour it runs in.

I hadn't been in my studio in weeks, but late last week I got in there to finish my homework for my Children's Illustration class. Today I am about 90% done with another project I have been working on that makes me feel good.

Every day is still a guessing game. I usually have a couple good hours each day, and sometimes even a half a day. I have yet to have a whole day where I wake up feeling fantastic but that still may come - I can hope.

So the airway issue will be addressed once again this coming Tuesday, I have a bronch scheduled. Apparently they have decided a stint might be the way to go. The infection doesn't clear up and at this time appears to be our best option. So, here's hoping the right decisions are made and I can start feeling better and getting back to my 'normal' life. Only time will tell.

For now I am doing what I can each day. I give a lot of credit to my husband for helping while I was really down and out. I spent most of my time on the couch or at the clinic and he was a laundry and dishwashing machine. He proved his worth!

I will try to post some of my children's illustration projects soon. The final is doozy, but let's hope well worth the energy.

Back in the Slammer

It's kind of hard to wrap the head around being back in the hospital after being out nearly five months. I am a much better patient now then I was before my transplant and time on the vent. Much more relaxed, but I think that has to do with how I feel. Meaning, with my cf lungs I went in to the hospital not feeling well and never feeling better when I left, just more drugged. I also always worried my port would get neglected and clot off, that no longer exists. Now i try not to get bent out of shape when my meds aren't on time, I try to give more leeway. I draw the line at my transplant drugs, 45 minutes late I start getting a little edgy, for the most part they are on time. 

The frustrating part is I had felt so good until that first bronch just over two weeks ago and then it all went haywire. I am glad the bronch revealed the ugly fungus that is in there but not happy with how the bronch left me feeling short of breath. I am trying to keep my frustration contained and in perspective, this is the land of transplant. The ground at times is firm but sometimes shaky and you never know when you will return to the solid ground you were happy to be on. 

There is no one path that transplant takes, and you never ever forget you are living on borrowed time. You can go about your day, plan your life, dream those dreams of things to do but always in the back of your mind is the fear that it will all slip away. You try not to dwell on it but it's like getting a song in your head out of nowhere. You sing the song for awhile then get annoyed and it goes away for some hours or days then boom, it comes back. The mind is the worst trap and the one thing you can't run away from.

I am getting sprung from here today, feeling some better but not like a shiny new coin. I am however ready to go home to my own bed. I will miss the prepared meals, yes I do enjoy the hospital food, but I can eat on my own schedule at home. 

I don't think I will ever know a normal life, which is nothing new since it was far from normal before. I just have to figure out how to define my life. Right now I am so scheduled with meds my day is full and they make me feel sluggish also. I hope someday this pseudo and fungus will remove itself from my lungs. I won't hold my breath but I will hope.

I have had nearly eleven great months, grueling and hard at times but I wouldn't give them back for nothing. Life is not guaranteed perfect nor is it ever defined as smooth. Life is ever changing and undefined. If you are lucky enough to do something you love every so often then life is good. Eleven months ago I had no future plans because I wasn't sure I would survive another week or month, but here I am. The only plan I have now is the one to take this day and enjoy it. It is the only one any of us is guaranteed.

Watercolor

Here is the project I have been working on. I promised on FB to post it once I was finished. Here it is. And no I am not worried about my friends stealing this, I am more those who might come across it, thus the 'do not copy' watermark.