Health & Beauty, Home & Happiness

June 21, 2019

The T Word: Double Lung Transplant

Before my last hospital stay I could only walk about 10-20 feet without gasping for air or throwing up from coughing. I was vomiting from coughing up to 4 times a day, eventually unable to keep food or water down, having tachycardia, and battling constant fevers. I lost 10 pounds in two months, and lost about 10% lung function. I started having more severe chronic pain, and felt like it was extremely hard to stay awake mentally or physically through the day, sometimes spending nights waking up and coughing for two hours straight while throwing up.

I was really miserable physically and my body was falling apart but oddly enough my attitude shifted and I found little things to cling to and look forward to instead of waiting until I'm "better" to be happy or enjoy life. My body did adjust and I started handling fevers a lot better, but I had a lot more physical limitations than normal. I remember trying to climb a flight of stairs so I could take a bath and stopping three times to sit down and catch my breath. I was only a few stairs from the top and started crying because I had to ask for help since I didn't have the energy to make it. Once I was taking a bath I didn't have the energy to wash my hair and my body. For a long time I just sat there, because I didn't have the energy to get out, and I hadn't even picked out my own clothes.

Fast forward to my admission I felt like my medical team and I were not on the same page at all with communication and I found out I was theoretically failing a transplant test I didn't even know you could fail. We all had a meeting and they have decided to refer me to the transplant team. I also started Pulmonary Rehab, which I now do twice a week.

I did a month of ivs after my discharge and made the decision to discontinue the antibiotics like the doctors requested for fear of causing resistance. I felt sick off and on within a few days of discontinuing antibiotics, but it has been manageable. For once it feels like my body is actually trying to fight instead of just being beaten down. Pulmonary Rehab to my surprise has seemed to help a lot, as has going out of the house and asking for more help when I need it. I think before when I was exercising I was burning myself out and taking too long to recover, so it was never very beneficial. I have started back up on oral Minocycline, which has not made much of a difference and I am going back downhill. Despite the positive changes and a bit of stability, I am scheduled for transplant evaluation the week of July 22. Evaluation will determine whether I am eligible to be listed for transplant and it will tell them a lot more about how my entire body is doing in the grand scheme of things.


Fundraising is an essential part of  determining transplant eligibility, as it demonstrates that I will be able to afford to take care of my new lungs.

Help me get new lungs, by donating to The Children's Organ Transplant Association (COTA) in honor of me: DONATE
SHARE:

2 comments

  1. I ѕeriously love your site.. Grеat colors & theme.
    Did you create this websitе yourself? Please reply back as I'm planningg
    to create my very own blog and want too find out ѡhere
    youu got tһis from or just what the thеme is called.
    Appreciate it!

    ReplyDelete
    Replies
    1. I got the theme from pipdig. It is a paid theme. I use blogger from Google. I previously used Wix but did not like it. My other site "www.tinytoesproject.com" is in development and I used a free theme I found on Google for that. The logo is from Fiverr. I like using blogger since it's really simple and you don't have to pay extra for any upgrades. It gives the option for plain text or html, there can be some customization hiccups, but it's pretty straightforward most of the time. Got the design for this website after visiting Ana Free's website "thecasualfree.com" and loving her theme. Pipdig has good customer service if you experience any issues as well. Thank you for inquiring!

      Delete

Blogger Template Created by pipdig