Back in N.Y.C.

On Sept 6th I had my primary appt for my PPD and chicken pox vaccine.  The PPD was just a small injection put under the skin.  It creates a bubble and then the doctor draws a circle around it.  In two days the doctor has to read it.  If it is gone you are tuberculosis free, if it is pink in color then you are positive.  Mine was negative.  The pink bubble was gone in a few hours for me.  I had the echocardiogram done on Sept 9th.  This was a simple test where I just laid back while they took images and reading from my heart.  It was a lot like an ultrasound.  Shortly after that I got a call from Roswell Cancer Institute. I had applied there to do some volunteering.  He called to set up a date for Orientation so I could start.  I really want to be a research coordinator someday, but all the job offers require one year of experience.  Right now I only have six months so I figured this was a good way to start with the experience and maybe get my foot in the door.

On September 19th and 20th we went back to Presbyterian hospital for some more appointments.  We had to meet with more of the team.  This time Jay and I stayed at an Econo Lodge in Fort Lee, NJ.  It was much cheaper than staying in the city and it was really close to the hospital.  The hotel is right next to the George Washington Bridge and the hospital is a few blocks from the bridge on the other side.  It took us about eight minutes to get to the hospital from the hotel so it was very easy.  It would be perfect however; the section of Fort Lee that is convenient is not the nicest area.  To be completely honest, this is most of the city and surrounding area, but we are still learning haha.  As for this place, we will not be staying here again. It is worth some extra money to feel safe and clean.

The first day we met with my social worker.  She went over things with me to see if I had a support group to help me with things before, during and after my transplant.  Also went over how well I am taking care of myself now to get an idea of how well I will be taking care of myself after I get my new lungs.  She also filled me in on a few more things to expect after the transplant.  When I am listed I will have to get into contact with an organization called Angel flight.  This organization will fly me to NYC when I get the call that new lungs are in.  Once I am there they will prep me for surgery while they are prepping the lungs.  She said that for the most part expect the call to be a false alarm.  They call these dry runs.  They have no idea what the condition of the lungs is until they are in the room.  There is a chance the lungs will come and they will be no good and in that case they won't do the surgery.  She said sometimes people get lungs on the first call, but then there are people who have been called five times and still haven't had the actual surgery.  So when I am called expect the worse, but hope for the best.  Once that hurtle is over and the lungs are deemed liable, the double lung transplant itself will take six to eight hours on average.  After that I will be placed in ICU for about three to five days.  Then I will be moved to the transplant floor for about nine days.  Then I will go home.  This is the normal, but of course things can go wrong and they said I could be there for upwards of eight months.  Hopefully things will go smoothly and I will stick to the standard.  After I go home, I have to then go back to the hospital once a week for twelve weeks to keep getting my medications regulated.  They are going to be putting me on a lot of drugs right after the surgery so I don't reject the lungs and slowly I get weaned off of them, though not completely.  So these appointments are very important.

Next was the financial coordinator.  She just went over insurance information with me and turned me right over to the nutritionist.  She wanted to go over what I eat now.  I gained two pounds since the last visit so she was happy to see that. My BMI is at good level right now for the surgery, but they said gaining more definitely will help.  She also gave me more information on what to expect after the transplant.  Right after I get the lungs my immune system will be severely compromised so I will not be able to eat any fresh fruits, vegetables or raw meats.  Everything has to be cooked to kill the bacteria.   After about six months I will slowly be able to incorporate fresh fruits and vegetables again, but I should never eat raw meat (sushi) again.  I will also have to be more careful with sugar.  The new meds I will be on will increase my blood sugar.  She also told me to stop drinking alcohol.  These medications are going to be putting a lot of strain on my liver so the added alcohol is not a good idea.  She said there is more that I will learn, but right now she is just filling me in on the basics.

After that I had to have a stress test done.  This was done to see how my heart reacts when I put it under stress.  I was put on an exercise bike with electrodes attached to my chest to measure my heart rate and a tube in my mouth to measure my breathing.  I had to pedal until I got my heart rate up and then I had to sit and rest at the end.  It was a hard test for me to do.  I have a hard time getting my left leg to stay on the pedal when bicycling to begin with, but on top of that the bike was too big for my short legs.  Thankfully they were still able to get what they needed so it worked.

The next day we went back to meet more people.  First I had a neurology consultation.  This is just to make sure that there is nothing wrong with me neurologically that would get worse due to a lung transplant.  We went there and they took forever! I was the second patient in the waiting room but for some reason we weren't seen for over two hours.  Thankfully my other appointments were flexible with us because this made us late for every single one after that.  Anyway this one was simple.  I went in and he just checked my eyes, reflexes, made sure I had sensation in my arms, hands, legs and feet.  Things like that. They are curious as to the cause of my gait and want me to get an MRI so they can see my spine.  It has nothing to do with the lung transplant, like I said it is more curiosity, so I am not sure if I am going to go through with it or not.  Waiting in that office was ridiculous and I don't know if I want to go through that wait again.

We then met with my main pulmonologist.  She was happy with how quickly I got all the tests done so she gave me two more to get done.  She wants me to do the right heart catherization now, (before she told me I could hold off on it) and I also need an arterial blood gas (ABG).  This is a blood draw from the artery in the wrist.  It gives the amount of oxygen in the blood.  I also have to do my psych evaluation, because it was canceled that day due to the doctor having an emergency. She went over all the tests I had done with me.  She explained to me what the quantitative scan was.  They were looking at the blood flow of the two lungs to see which lung would be removed first during the transplant.  After she went over all the tests with me she then explained how they choose people for the list.  Every Friday the whole team gets together and goes over all the people that are being evaluated for transplant.  They go over all the tests and evaluations that were done to see if there were any red flags.  This could be something where getting a transplant would hurt the patient more than it would help.  If there are no red flags they take all the tests that were done and put them into a computer to see how sick that person is and the computer spits out a number between 0 and 100.   The closer to 100… the sicker the person.  If the person is not quite sick enough then they are put in the pile for consideration later.  She said as of now I have no red flags, so I just have to get the last three things done to see if I am sick enough to make the list or if that will be done later on.

Then I had to go and do a six minute walk.  I had to walk back and forth between two cones for six minutes.  They took my blood pressure, pulse and oxygen saturation before the walk and then after.  They also measured how far I was able to walk in that time period.  I was allowed to walk as fast or as slow as I wanted and could stop for as many breaks as I needed, I just had to remain standing.  If I couldn't walk for six minutes that was ok too and I could stop whenever I wanted.  I had to stop twice and catch my breath, but I was able to do the whole six minutes. For this walk I did 467 feet and they will use this as a base line for future walks.  I then had to get my blood drawn (something that is done each time I go to see them) and had to get another hepatitis vaccination because there were no antibodies in my blood.

I have to go back in about three months for my regular three month appointment and for the psychology evaluation.  By then I will have the other tests done and I will know more about being listed or not when I go back.