yessheissalty

[yessheissalty]

Why did no one tell me this?

I am going to start this by saying, it is highly possible that someone mentioned these things to me, but as I was in a state of high anxiety and overwhelming stress during a terrifying time in my life - I did not hear or compute it at all even if someone told me these things. 

I had decided to have a double lung transplant - after a long, chaotic, stressful, overwhelming, seeing doctors and psychologists, swearing at said doctors (sorry!) due to my extreme ‘overwhelmedness time’. Here is a list of some of the things that happened to me that I did not expect at all.

1 - When I had my CF lungs, I had been lactating for some unknown reason. Only in 2020 after having my transplant in 2012 did I learn from a new friend who has CF that it was because I was on a medication called domperidone prior to my transplant. You would think that when I asked my doctors about why I, an 18 year old who had never been pregnant, was lactating, they would have mentioned this to me... but no! It was just an extra unknown mystery that was going on with my body. Fun!

2 - After your epidural is removed, you still can’t feel a huge chunk of your body. Now it seems obvious to me that if you have a surgeon cut your damn body in half, you’ll probably have some nerve damage, but I didn’t know that at the time. I was dealing with a lot and didn’t even stop to think about this. I had no idea that I would lose feeling in my chest and back - basically my whole torso above my belly button. This was really upsetting and scary to say the least. 8 years later, I have some feeling back in my breasts (finally) but it took this long to get some feeling back - and it still is far from normal. 

3 - Nerve damage doesn’t necessarily mean no feeling - it can mean that any slight touch can HURT. So, that was really fun for a few years.

4 -  You may get weird scar tissue/growths where your scars are. These were scary because I had lumps in my breasts and I went through many mammograms, ultrasounds, x-rays, etc to try to determine what these were - only to be told by my surgeon (after years of trying to figure this out) that they were normal for people who don’t scar particularly well and that if he were to try to remove them, I would likely just grow more. Wouldn’t it be cool if the doctors talked to each other and I could be told this right away? Fun times.

5 - You will have crazy amounts of back pain - again, if you think of someone splitting you in half, swapping your lungs out, breaking your sternum and 4 ribs, you would expect some lasting back pain. However, as a 19 year old who is dealing with way too much shit - this would have been nice to give me a heads up!

6 - Tacrolimus, one of the main immunosuppressants you go on after a transplant, can cause you to lose your hair. This is a nothing problem if you think of either living with no hair, or dying with hair - absolutely, however, it would have been another nice heads up! I was lucky and my hair thinned, but never totally left (I have a LOT of curly hair) then grew back in full.

7 - You will have to ‘re-learn’ how to breathe. I never thought that I would have to be taught how to breathe, but there I was, post transplant, in a hospital bed, having a woman teach me how to do something I had been doing my whole life. As a CFer, you learn to breathe with just the top bit of your lungs, because the bottom is so clogged with mucus that it isn’t possible for you to use that part of your lungs. With my new lungs, I had to learn how to use my entire lungs to breathe. I would catch myself shallowly panting all of the time, and it took a long time to learn to use my lungs properly. I occasionally still slip into my old pattern of breathing and only notice when I start to get a little lightheaded and out of breath.

8 - You have to learn to eat food again. This isn’t to due with having new lungs, but is because you have had a tube down your throat for the last week to keep you alive and your throat is no longer working. I remember the first day I swallowed a food and was so excited!

9 - You will sound different for a while. Having a ventilator for so long wrecks your vocal chords and leaves them out of use for a while. It was a few months before my voice went back to normal. This was really scary for me because I didn’t know that this would happen so didn’t know if my voice would ever come back to normal. I asked nurses and doctors, but, of course, as each individual is different, and they don’t want to get in legal trouble, they would give me vague answers about if my voice would come back or not, which was really scary. My vocal chords did heal and I sounded like myself again after a while. 

10 - You will have immense trouble standing up. I was only in the hospital for around 2-3 weeks post transplant, but having been heavily sedated then 100% on bed rest, my first time standing felt like I had been lying in bed for years. I could barely hold my own weight. This plus the pain from my transplant made me shuffle around like Yoda for a while before getting literally into my stride. 

Those are just a few of my ‘why didn’t someone mention this to me?!’ moments of life having a double lung transplant. Everyone’s will be different. Some people would have expected many of these, but I didn’t and it made my journey even more challenging than it needed to be. Yep. Still more than a little salty about these ones.

[yessheissalty]

Hey there,

Hi, my name is Ali. I was diagnosed at birth with Cystic Fibrosis, a genetic disease that affects the lungs, digestive system, reproductive system... basically your whole body. This disease causes your body to produce excessive amounts of mucous, leading to various parts of your body becoming damaged and eventually, non-functional. 

My sister, Joan, who is two years older than me, was diagnosed several months after her birth after my parents fought to keep her healthy as her tiny body tried to survive the disease inside her. It was because of Joanie’s diagnosis that I was tested at birth and was able to have a healthier start at life. 

Cystic Fibrosis is now one of the diseases that babies are tested for at their birth - giving more kids a stronger chance at survival.

Growing up, Joanie and I spent plenty of time with friends, our family, dogs, cats, horses, sports teams, and also far too much time in Children’s Hospital on IV. We knew all of the nurses names (and definitely had our favourites), we knew how to run our own IV medications, and we learned ways to keep ourselves entertained in a hospital for weeks on end. 

I know how it felt from my point of view, but I cannot imagine the pain and struggle my Mom and Dad went through seeing their baby girls hooked up to IVs, doing hours upon hours of lung physiotherapy every day, and taking around 50 oral medications each to keep as healthy as they could. 

In 2003, my family was torn apart by Cystic Fibrosis when it took my sister’s life. She was 12, and I was 10. No child should ever have their life taken from them. No child should ever have to experience their lungs deteriorating until they are unable to survive. No child should have to lose their best friend and sister. No parents should have to lose a child. I will never stop missing Joanie. I will never stop loving her. My heart will never stop hurting.

I continued to grow up fighting CF without my partner in crime. I struggled with anxiety, depression, OCD, and PTSD and I still do. Everyone in my family lost part of them that day in August in 2003. 

In my grade 12 year in High School, I had to basically drop out as my health was declining so rapidly. Myself, my family, and my then boyfriend (now husband) met with many doctors and I had to make the overwhelming and terrifying decision to go forward with a double lung transplant. After a year waiting on the transplant list, being on IV therapy more often than I was off it, doing around 5 hours of physiotherapy for my lungs daily, drinking around 5 Boost plus’ a day plus 3 meals and many snacks to attempt to keep any weight on my body, having my family push the wheelchair I now needed to sit in to move around, I received the pager notification saying I was going to get a double lung transplant. 

After an 8 hour long surgery where I had my sternum and 4 ribs broken to replace my deteriorated lungs with beautiful working ones, a stint in the ICU, and time recovering in hospital, I had become a transplant recipient at the age of  19.

I am now over 8 years post Lung Transplant and am living my life with my wonderful husband, and my squishy little rescue dog. I am so incredibly happy, but I am also continuing to face the struggles of having CF in the rest of my body, being a transplant recipient, feeling the loss and guilt for the family of the woman whose passing gave me another chance at life, being a high risk individual for the current pandemic, struggling with depression, anxiety, ptsd, a little bit of OCD, and the feelings of overwhelming loss that will never leave me. 

I have wanted to write about my experiences for some time now. I will keep many stories to myself as they are extremely personal, but others I would like to share, to get them off my chest while hopefully helping a few CFers on the way.

This is my life, my story.

I love to joke around, I have a bit of a dark sense of humour, and I am a very emotional individual. Some of my posts will be emotional, some will be joking around, some will be somewhere in between. I have a lot of experiences that make me happy and many others that make me angry. I may swear, I may say some rude things, I know that sometimes my experiences and feelings would be different for someone else in that situation or are different for individuals who lived those times with me. This is me and my story, this is my place to vent a bit. Take my saltiness with a grain of salt when you feel you need to. 

A joke amongst CFers is how ‘salty’ we are. Individuals with CF sweat so much salt that it comes out in crystals on our foreheads sometimes. Of course there is also the fact that almost all of us have gone through hell to be where we are... so yes, she is salty.