Sunday, 12 January 2014

The ups and downs of Transplantland

The last while I've had reminders of my old health. I've fought hard for energy and have been disgusted when it goes missing. 

I hadn't been able to rid the fevers or sore throat since Christmas. And did I mention the cankersores????? Omg. I don't think I've had the pleasure of these horribly sensitive and painful monsters in all of my life....until recently. 

Cankersores are not your friend. They will not bring joy to your life, nor good memories. They prevent the consumption of many delicious things and worst of all - get in the way of hot coffee. It's just not right. 

Last weekend, I was prescribed antibiotics. The fevers were just too concerning. Fevers can signify many things, including that dreaded, tearfest-inducing, bring-you-to-your-knees word: rejection. 

I started the antibiotics Saturday, Jan 4th.  By Wednesday I was an absolute mess. I had CF clinic at 8:15. Blood work before that. I threw my wary and uncooperative body into the shower and pretended I had the energy to care about what I looked like when I exited the house. 

At clinic, I hauled myself onto the scale and discovered a 5 lb weight loss. Did lung function and well, discovered a substantial loss there too. Doc was concerned about my throat as I had swollen lymph nodes. Combine that with my other symptoms and you get the concern of post transplant lymphoma. 

The C word is freaking scary. CF is pretty scary, but I always felt that I would win that battle - and on December 13, 2012 I pretty much showed that monster who was boss (some would say the surgeons did it, but we all know who wrote the manual). 

The C word kinda throws you off. Makes your head spin and your eyeballs hurt. Then, I tried to stuff that word deep down inside so I wouldn't be that ugly public crier. 

Side note: I hate beautiful criers. It doesn't make sense and it's not fair. 

Doc got me an urgent appointment with an ENT specialist. I left CF clinic and went to the ENT clinic. 

Docs there were pretty sure it's not lymphoma. They believe it's likely tonsillitis. They prescribed me penicillin and decided that if I wasn't better in a week, they'll rip a piece of my throat out and discect it - otherwise known as a biopsy. 

I did attempt to go to work after all that. I have no idea why; especially since I practically fell asleep in both clinics and wanted to spend the rest of the day crying because it was so hard putting one foot in front of the other. I guess I just hate feeling useless and felt propelled to go to work. 

I was in the office for about 2 minutes before my coworkers biffed me out (2 things: 1. I looked like death and 2. If it is tonsillitis - it could be contagious). 

Don't get me wrong, I was grateful, but I couldn't fathom how I would find the energy to walk all the way back to my car. 

Luckily, it happened and I made it home without injuring anyone or anything (by falling asleep). I dragged my lifeless body (so what I'm dramatic) into the house, let my killer dogs out for a minute, and fell into bed. 

I repeated this for the next two days. A bit differently though, as I didn't have clinic, didn't go into the office and spent more time on the couch then in bed. I tried desperately to work from home, which worked for part of the days. Friday was a complete write off. 

Brad's parents came Friday, and all I could do is lay on the couch with the crazy mess of the house around me. I would have loved to clean, but I could barely raise the Lukewarm coffee to my face. Trying to read myself to sleep was also impossible, as my arms didn't have the strength to hold a book and my eyeballs couldn't convince my eyelids that there was a party worth staying up for. 

Today is a new day however, and I feel better. My energy is still not the best it's ever been, but I feel the improvement. 

Likely the best news from all of this is the doubled prednisone I'm now on. 

I'm sure you all remember the moon face. Yes, it's incredibly hawt. The appetite that comes with it is divine; Brad will soon find me shoving truck loads of food down my gullet. 

I will soon gain that 5 lbs back. THEN you'll see me shaking it on the dance floor. 

**Serious Alert**

I've learned of the death of another transplant friend. It both took my breath away and made me gasp out loud. Transplantland is a miraculous place. It offers life-saving events and life-time friends and memories. There is no place like it in the world and you will leave a different person than you came. Forever you will be changed, forever you will think differently. 

Transplantland undeniably saved my life. I would not have returned from Toronto without my miracle. Friends of mine the same. 

I have many friends from Transplantland and they are all equally amazing and strong. They've provided me with gifts alongside my new chunkers. Friendship unlike anything I've ever experienced. 

I've lost friends along the way and have heard of other Transplantland people dying. It never gets easier and is never expected. It is always a shock, always hurts, and is incredibly sad and scary. 

RIP Melissa. I'm glad you got your miracle. I'm glad you had three years of breathing easy. I'm glad you were given the chance for a second miracle. 

Sadly, you didn't get your third set of chunkers. Most sadly of all, is the son who will continue in life without his beautiful mom. 

Please, please, please, I beg you...please consider organ donation. If we had more organ donors, Melissa might have been given another miracle. If we had more organ donors, Melissa's son may have been given the miracle of growing up with his mother. 

1 comment:

  1. ask your dentist for a rinse for the canker sores. it works great and gets rid of them in a few days instead of the normal two weeks