A new post has been long overdue but the end of 2014 was rough.
I received my double lung transplant 10-10-14, was in the hospital roughly 2 wks and discharged home with 2 chest tubes on each side. We stayed in Madison as they didn't want me too far away so they could keep a close eye on me.
The right lower lung was always imperfect and it continued to worsen. Just when we thought we were going to be able to go home, I had to get a chest CT which showed a bad infection and dying tissue in the right lower lobe and I had to be scheduled to have it removed. Thus I was readmitted to the hospital November 11, received a PICC line for IV antibiotics and had to have my chest reopened on 11-17--they also took muscle from right upper chest to place where the lung use to be so there wasn't empty space for bacteria to breed. To do this muscle flap procedure they also removed part of my upper ribs so I have an indentation there. They kept me on the ventilator overnight and being aware of intubation is extremely difficult. They couldn't sedate me as much as my blood pressure was already on the low side.
Man -this was a big bummer and I was feeling a bit defeated. I wanted to go home, I needed to go home--I hadn't seen my son in wks and facetime just isn't the same. I was determined to get better.
I was able to go home on 11-25, right before Thanksgiving and that was so awesome. It was so good to be home and be in my own bed even if I still had chest tubes.
I was cooking some dinner on 12-1 and one of my chest tubes fell out!!!! Yes -it fell out! How does this happen?!!?!? I ended up in Butterworth ER and was admitted there to have chest tube replaced. I was discharged on 12-3.
I had follow up in Wisconsin on 12-10 and they found my white blood cells to be elevated and needed to admit for work up as elevated WBC can be a sign of infection. I had another chest CT which showed 2 small pockets of fluid/infection in that right lower lung area. They decided to put 2 chest tubes in those areas to drain the fluid and the IV antibiotics continue. I was able to leave 12-15 and continue with IV antibiotics at home which I'm still doing.
I went to Wisc 12-28 and the CT was improved and I was able to have one of the chest tubes removed!!! Yeah!!! I go back to Wisc on 1-7 and hope to have the last tube pulled. I've had tubes somewhere in my chest since October!!!!!
My labs from today are all normal--yea!!!!!!!!!
So Oct-Dec were very rough, and I pray 2015 is much smoother. I take a lot of meds which have all kinds of side effects---hot flashes, tingling/numbness in fingers and toes, headaches, memory issues, tremors, etc. But I have new lungs and its starting to feel good to take a breath! My chest has many scars and am starting to get some feeling back where the incisions are (nerves damaged when cuts are made). The initial incision that was made for transplant goes from armpit to armpit and I was told it is the worse incision to have (as it is so long and they cut through sternum).
I so appreciate the support, you do find out who your true friends are when you are traveling through the valley. Be kind and please take care of yourself and those you love around you. We are not guaranteed another day.
Breathe and be thankful for that breath.