12 Days and counting

Dad is out of the ICU now and in a regular room. He is able to walk a small distance as long as he's supported and he seems to be recovering as fast as we could hope. He still has a long way to go, hopefully he'll be out of the hospital sometimes next week. The wound vac is still on and will be for a while. His neck IV will be removed before he leaves the hospital, since he already has the port in his chest. He's onto fentanyl patches instead of IV drip, off all morphine now. The incision is over 12 inches long down his abdomen. I see him losing weight daily. I can see his skin hang slack where there used to be muscle. The TPN needs to get him more iron or else he'll need to be getting transfusions. He had a transfusion two days ago for low hemoglobin. Hmm, anyone think the thalassemia could be adding to his issues?
The meds are giving him some confusion, I hope that eases as they are weaned down. He keeps asking if he has to have another surgery.

Childhood History

I was diagnosed with a "hole in my heart" at age 3.  My parents were very young and didn't keep good records about what this meant.  I don't know whether it was an ASD, VSD or some other defect.  I was also told I had mild pulmonic stenosis, a narrowing of the pulmonary artery.  I was diagnosed with anemia at Kindergarten entry and prescribed iron pills, although it wasn't shown to be beta thalassemia till I was much older.

As a child I would much rather read than do anything else.  I started reading at 3 and have never stopped, although I don't spend nearly as much time reading now as I did as a child/teen.  Exercise and Physical Education classes were torture.  I would get out of breath and have weak feelings in my legs after minimal exertion.  My heart would pound and pound for a long time after class, especially the dreaded running the track.  

When I went to the doctor my pulse was always high, between 90 and 110 sometimes higher.  My blood pressure always ranged from 120/80 to 130/85.   My weight fluctuated from mildly overweight to mildly obese to teenaged eating disorder.

I started having headaches in my junior year of High School.  Then joint pains and swelling joints.  I was checked for Valley Fever, Epstein Barre, Rheumatoid Arthritis.  Nothing was helping.  I was taking medication for the headache pain, but I still didn't feel well.  I would vomit from the headaches, I couldn't hold a pencil because of the joint pains, I was tired all the time and felt like my head was going to explode.  

After about 12 months of feeling this way and seeing every doctor we could afford, having my parents almost lose their sanity because their normal daughter was in such pain, I got a new primary care doctor.  Dr. Toussaint Streat worked at Kaiser Fresno.  He said, hmm, let's check you for another virus that I know can cause some of these symptoms.  He ran a blood test and had a CT scan done of my head.  He guessed correctly, I had active cytomegalovirus and the meninga of my brain was swollen from it, causing the headaches and nausea and general feeling of crappitude.  Now that we knew what was causing me to feel awful, we were able to relax, focus on healing and the future.  

I started college at a local community college instead of one of the bigger schools that I had been accepted to, but I had recovered completely by the end of my first year of college.