Wednesday, January 15, 2014

Catching Up

The past month has been a struggle. 

My post-transplant immune system has led me to the ER three times, gotten me admitted twice and pushed me to spend a total of 13 days in the hospital.


It all started with fever, chills and migraines that wouldn't quit. First trip to the ER determined a surprise UTI as the cause. Then followed antibiotics and brief improvement.


Fast forward two weeks and exact same symptoms returned, only worse. I was admitted and treated for the now stronger UTI, sepsis(which had come from UTI) and the flu. Five days in the hospital and a week of IV delivered antibiotics at home brought relief.


Round 3 came a week after antibiotic treatment ended, and it was the worst yet. All the same symptoms, except even worse and additional complication of intense pain in my transplanted kidney and severe dehydration. My blood pressure was dropping to dangerous levels because of the sepsis and dehydration. 


I realized I was too sick to drive. 

My head was killing me.
I was dizzy and off balance. 

I got a ride to my doctor's appointment. When I arrived, I was worsening. According to the lab tech, when I tried to stand up, I was doing "the dance." I heard her yell for help and felt her supporting all my weight. I couldn't keep myself up anymore.


They took my blood pressure: 59/43. My nurse told me I was going to be admitted. I responded with something I've never said before: ”I want to be admitted." I knew I was sick.


The next few days were whirlwind-y. I felt badly, but no one knew what was wrong exactly. i was quarantined for the first 6 days and only saw 3 people each day: 2 nurses and the doctor, all masked and gowned for everyone's safety.


Tests revealed I had the flu and a UTI and sepsis and a kidney infection and pneumonia. My transplant team concluded that the original UTI I got a month ago was never fully eradicated, got stronger and had brought on the kidney infection and sepsis. The kidney infection had spread past my transplanted kidney and into my native kidney. They were running cultures and trying to treat all this, but my headaches weren't improving and my fevers didn't stop. I was receiving a wide array of narcotics, antibiotics and rest-inducing medicine...my head was muddled.

The transplant team acknowledged they were concerned and didn't have the answers or a treatment plan. Hearing this while at such a low point physically was the most disturbing message I've received from a doctor yet. 


Infectious Disease was called in to help. Their team tried multiple different antibiotics to see which one my body responded to positively. After some painstaking trials, they found one that was effective at fighting the unique type of pneumonia I had. A CT scan revealed that the previously unknown cause of my headaches was a very aggressive sinus infection. No one ever determined the cause of the fevers that remained long after they should have disappeared, but ultimately they also stopped. My body, after having been through so much physical trauma and medication, was so eager to simply rest.


Eight days in the hospital and I was cleared. Pneumonia was the toughest and scariest one. It took a while for them to find the right weapon(antibiotic) to use in battle. On the morning of my release, Dr Piper pointed at the monitor and told me how beautiful my lungs were. I laughed, grateful to be able to after the preceding week.


I am home now, and again on home-based IV antibiotics. I don't mind as much this time around; I really just want to be sure every possible bug/bacteria/threat is gone. I have been cleared of pneumonia and sepsis. The antibiotics are still chipping away at the kidney infection and sinus infection. I am still recovering from the illnesses and the treatment.


My head spins thinking about it all. I'm trying to be safe and rest, take care of myself. The hectic and stressful past and the unpredictable future haunts me when I lay down to rest, trying to take care of myself, trying to recover physically and mentally.


I'm tired and scared and alive and grateful.




And envious.

Envious of my body, my flawed and burdened body, 
resilient in the face of every challenge.

My exhausted and tattered body, 
with its telltale scars, battle wounds, wrinkles and stretch marks. 

My perfectly imperfect body, 
and its miraculous, against-all-odds, what-doesn't-kill-me-makes-me-stronger, never-say-die indomitable spirit. 



I can't wait for my mind to catch up.





12 comments:

  1. Hello Melissa
    I just came across your blog today and read through a few posts. My boyfriend had a kidney pancreatic transplant Dec 2008 on Christmas Day and so far so good! Yes, every day is a gift. Do you live in Ontario?
    Cindy

    ReplyDelete
  2. Hi Michelle!

    Thank you for giving me your blog address today. I've read your posts, what a roller coaster! I think if I had read all this before my transplant in October (2013!) I would have been more nervous.

    I have to say, my experience has been almost too good. I've had no rejection episodes, no complications, no secondary opportunistic infections (I had a cold around Christmas, now gone). During the biopsy today Dr. Wali said I was the easiest patient they had. It helps a lot that I had a live donor (thanks Mike!) who was a good match.

    I hope your biopsy went smoothly today, please keep posting updates.

    - Corwin

    ReplyDelete
  3. I just found your blog and I have to say your story is inspiring. I am 26 and need a heart/liver transplant. It is comforting to hear how other people cope and show such courage. Thanks for sharing your story
    Mallory
    http://transplantlifeasweknowit.blogspot.com/

    ReplyDelete
  4. Hi Cindy, Corwin and Mallory! Thanks for finding my blog and reading and commenting!
    Cindy-congrats to boyfriend and well wishes for everything in future. I live near Washington DC, but I'd love to see Ontario if you're up for a visitor :)

    ReplyDelete
  5. Corwin- that's great to hear that everything's going smoothly or you. Maybe we'll meet again at the Transplant Olympics! Continued success your way!

    ReplyDelete
  6. Mallory-I'm taking a break from reading your blog straight, entry by entry. I find myself understanding your emotions on just about everything. Bravery is relative. Bravery is facing YOUR OWN challenges & fears and saying "Just keep swimming" a la Dory. You and I have plenty of physical challenges, but our biggest challenge(and what I'll be proudest of) is having the emotional perseverance, strength and positivity to get through it all. Can't wait to catch up on your posts. :)

    ReplyDelete
  7. Hi Michelle

    Just starting to think about my kidney pancreas transplant, I have been on the waiting list for 3 months and starting to do a bit of research.You sound like you have had a rough time of it!My hopes and dreams for the future are to have children and live a reasonably normal life.Do you feel like your life is better post transplant and do you feel like a healthy person?

    Thanks for your blog
    Melissa

    ReplyDelete
    Replies
    1. Hi Melissa! Thanks for reading and I'm excited for you opportunity. Yes, I believe KPTX is a huge opportunity for improving. My history is pretty atypical. If you'd like, look me up on Facebook, I'll share some groups where you can gain info from other transplantees and women who've gone on to start families.

      Delete
  8. Michelle,

    It has been a long time since we spoke but as my Mom is a transplant candidate. She currently is on dialysis but that is not working out and her other kidney has long since stopped working. I am interested in your blog.

    I wish you continued recovery. Bless you and your kids. I can't even begin to imagine all you have been through.

    Lynnette

    ReplyDelete
  9. Lynette! I'm sorry to hear this news. Sending out warm, healing thoughts for your mom and your family, wishing you all strength and peace in this rocky time

    ReplyDelete
  10. We're looking for kidney donors for the sum of $450,000,00,CONTACT US NOW ON VIA EMAIL FOR MORE DETAILS. +91 8050781454
    Email : donyahocket45@gmail.com

    ReplyDelete