General update 5 weeks post-op

I had an appointment with my local pulmonologist today; overall it was a good visit. I have been running a low grade fever for the past few days and developed a dry cough and I have not been sleeping well. I had a chest x-ray today that showed an infarction in the upper lobe of my right lung; all of that added up points to a low-grade bacterial infection. I will start with a weeks worth of an oral antibiotic and then recheck with the doc next week. The good news is that my lungs sound really clear! No crackles, wheezing, or constrictions; and overall the chest x-ray looks good except for that one spot. It sucks to have one more thing to deal with, but honestly I am surprised I haven’t picked up a bug yet through all of this.

Even with this new infection I am actually feeling a bit better overall. I am recovered from both surgeries; everything has healed up nicely. I’ve got some nice new scars; five to be exact, all a half inch or less scattered around my abdomen. I still have the random giant bloody booger make it’s way out of my nose from the sinus surgery, but after the initial hell my sinuses have recovered and that operation has been very helpful in regards to breathing and sinus headaches/migraines. We are still trying to sort out the violent dry-heaving. Knock on wood, the heaving episodes have lessened, I have even had a few days without any heaving.

Today we also got the most definitive diagnosis anyone has been able to give us: Viral Induced Rejection; meaning I had some sort of low grade long term viral infection that triggered my immune system into overdrive causing a sort of attack on my transplanted lungs resulting in the reduced lung function. This fits with the overall trajectory of my health the past year; I had a lot of idiopathic symptoms that never fully presented themselves or lead to a real illness or problem. Sinusitis, allergies, stress…many things were tossed around but that is the trouble with rejection; it is very sneaky.

The official term for what is happening in my lungs right now is bronchiolitis, which is a fancy way of saying inflammation in the small airways. “Rejection” is used lightly here; there are multiple types of rejection and the positive side to this scenario is that recovery and regained lung function are very possible. There are no guarantees, but all the pulmonologists we have spoken with are optimistic that we can hope for recovery. That is a very long road; I don’t know how long I will have to be on oxygen or when I will be strong enough to begin pulmonary rehab. My personal goal is to be off oxygen by spring; I don’t know yet if that is realistic or not.

Right now it’s just rest, rest, rest, and eat. I have lost about 20lbs and all my strength; picking up a full pint glass of water is taxing. Walking down stairs makes my quads shake because they are so weak. All the medications have made my hair really weak and brittle and I have a weird rash on my chin. It is difficult to shower or get dressed by myself, and I am heavily dependent on my wheel chair because I fatigue so quickly trying to walk around. Having your physical independence taken away so drastically is incredibly frustrating. Thankfully I have awesome parents who have fully devoted all their time and energy to caring for me. My mom has taken Family Leave from work for three months and I will be reapplying for Disability so that I can hopefully have a little bit of financial independence while I am unable to work.

This past year a new legislation was passed that changed the rules (in a good way) for folks with respiratory illnesses to qualify for disability. Post-Transplant it is even more difficult to qualify because the laws are archaic and they view you as being “cured” since you got a new organ; but organ transplant is not that cut and dry and life as a Tx patient is very expensive. I would like to be able to work, but I just don’t know right now if that will possible. Even if I recover well from this set back working full time with all of my health issues has never been a realistic thing; I am just too damn tired all of the time even when I am “healthy” and stable.