Educational Seminars

Jay and I went to NYC this week for two educational seminars.  They require we attend twelve a year.  Before this we have not attended any due to the timing of these and my appointments not lining up.  It is not easy or cheap traveling to NYC so traveling just for a seminar is too much.  Especially with my health declining.  Jay had to be in NYC for work so I went with him this time in order to go to these seminars.  They do two back to back so two down.  I am happy we made these two because they were very informative.

The first one was on how lungs are chosen.  He started talking about how there is a shortage of lungs and why. There is a shortage of lung donors to begin with and then on top of that lungs are so fragile.  Lungs are easily damaged and a lot of the time they are not good enough to be donated.  They can't be used if there is a tear or puncture, if they are infected, they belong to someone who smoked and misc other factors.  In most cases lungs are taken from someone who is brain dead.  Tests are preformed in order to see how well the lungs work and then they are removed and transplanted into the patient.  Sometimes lungs are removed from a patient where the heart has already stopped.  This is not ideal because they are not able to do as many tests.  The whole process is not easy in either case.  Doctors have to make decisions fast and in some cases lungs are rejected that could have been used.  Right now they are looking into different ways to use more of the lungs that are originally thought to be bad.  There is a study being done using ex vivo lung perfusion.  They take the lungs and set them up in an incubator with air and pump it with a solution.  Here they are able to do more tests to see if the lungs are able to be used or not.  They do this test for 4 hours and continue to take readings to see if the lungs recover and can be used for transplantation.  There is a picture above and there is more information on this in my page Lung Transplantation Info.  This is something that is being done in Sweden and some other countries, but new in the U.S.  So far Columbia has done six of these ex vivo set ups and transplanted two of them.  Studies have shown that people that get these ex vivo lungs heal faster and do better.  This might be something they do with all lungs in the future if the studies continue to show this.  Right now you have to be part of the study in order to receive an ex vivo lung and I am thinking that I am going to join the study.

The second seminar was on acute and chronic rejection of lungs.  It went over what the two types are and how they go about treating it.  Acute rejection is seen during the first year of lung transplantation.  This is when the body's immune system is attacking the lungs because it sees it as an invader.  On average a transplanted person will go through acute rejection two times.  In order to stay on top of this a bronchoscopy is done five times throughout the first year.  More may be done if the patient does not feel well and are showing signs of rejection.  After the first year a bronchoscopy is only done if needed.  Most of the time acute rejection is only seen in the first year, but it can show up later on.  For the most part, after three years the chances of seeing acute rejection is small.  When the patient has acute rejection the normal treatment is either oral steroids or IV steroids, depending on how bad it is.

Chronic rejection is seen later on during the transplant . This is caused because of the body slowing attacking the lungs all along.  50% of patients have chronic rejection after five years.  The lungs start to become damaged again and can get as bad as the patient needing oxygen and maybe even be transplanted again.  For the most part though patients with chronic rejection don't even feel it and continue to live their lives normally.  There are a few different treatments to stop chronic rejection as well.  There are some medications and medical procedures that can be done.  She talked about some briefly, but not too much in detail.  She also mentioned a few things that increase the chances of chronic rejection such as the flu, not taking meds and heart burn.  So they were informative for sure.

Things with me are continuing to get worse.  Since the incident with passing out in the shower, I have been taking them only when Jason is around.  I haven't passed out again since the one time, but now when I go in there I just can't breathe. I had to start using oxygen while taking showers just to get through them.  I tried leaving the door open so the steam doesn't collect and I tried cooler water so it wasn't so warm.  Both of these things make me cough so I figured if I did that it would be enough.  Even with these things I still need the oxygen.  I start to have a hard time maybe five minutes after I get in.  I feel my chest tighten up and then I start coughing.  I like lying in the bathtub sometimes just to relax and it looks like I am not going to be able to do that anymore.  I have been calling into physical therapy and volunteering a lot more.  I hate doing it.  I enjoy going to both and getting out is good for me, but some days just moving makes me cough.  I have always hated that I can't really plan too far ahead because I am not sure if I am going to be getting sick yet or not... Now it seems like being unsure of my health a couple weeks in the future has turned into not knowing about tomorrow.  I have no idea how I am going to feel day to day. When getting close to a hospitalization day to day was unsure, but now I am not getting that month of feeling alright between hospitalizations.  One day I could feel alright and go somewhere with Jay and then the next day be on oxygen the whole time.  I have an appointment with my pulmonologist in NYC on April 17th.  Looking forward to it, because I want to update her on how much my health has declined and see if I can be put on the list.  I just want an idea of how much more I have to do this.  I know when I am listed I am not given a date.  I won’t know exactly when the transplant will happen, but just knowing that I am listed, moving on to that next step, will give me a sense of relief.  Right now I just feel like my life is in limbo.  So much I want to do, but I am stuck and not sure for how long.