First blog entry

Thanks for taking the time to visit my blog.  I am 26 years old, and was diagnosed with this disease last March at the age of 25.  At that time I was 20 weeks pregnant with my second child.  Because of the disease, I was forced to deliver Josiah at 29 weeks gestation.  Josiah spent the first 3 months in the Neo-Intensive Care Unit in Iowa City.  He was on oxygen 24-7 until he was 6 months old, and now he is healthy and doing well.

I absolutely LIVE for my children and my husband.  I stay home with the boys now because my health is too poor to work.  This disease causes me such shortness of breath that even the little things in life are so frustrating and difficult.  Just a shower in the morning takes me 6 times as long as a normal person.  I can handle about one small cleaning project a day, and that is about it.  I am not able to carry my children around or run after them.  I am not able to carry groceries or do anything that requires any level of exertion or else I am so out of breath that I take 20 minutes to recover.  LAM has absolutely and dramatically changed my life.

Everyone always thinks that you are exempt from all of the bad things that you hear on TV and read about on the internet and the newspapers.  I thought that I was invincible.  And then one day to be told that I have an UNTREATABLE and TERMINAL form of lung disease…that was the worse day of my life.  And then, I tried to look it up online, and found only 2 websites that had even heard of the disease.

So, in this time, I look at my life and see my beautiful children.  They bring me such joy and happiness every day.  And my husband, Jay…he is amazing.  He has stepped up and been an incredible support for me.  EVERY DAY.  He has to assume 90% of the house cleaning work, and handle most of the work with the kids…and he does it all without complaining an ounce.  I could not have married a more caring and loving husband.  The “through sickness and health” part sure rings true in this marriage.  And Jay truly exemplifies what a husband is supposed to do.

I feel so helpless most days.  Knowing that without a miracle, I will not see my little ones grow up.   Without a miracle, I will be facing some really difficult times.  I am looking at being put on oxygen soon to help me be able to function a little bit better.  If I keep progressing as rapidly as I have been, my doctor says that I will need to be looking at lung transplant within 5 years.  Some women with the disease progress slowly.  And some progress very quickly.  I am just one of the ones that is progressing on turbo speed.   I just cannot wrap my brain around how all of this has been coming at me so quickly!!

I wanted to talk briefly about lung transplantion.  A lung transplant is a last resort option for me, or any LAM patient.  Taking our lungs out and putting new ones in does not cure the disease.  The LAM cells are still able to attack the new lungs.  That is such a scary thought.  And then, to add on top of that, about 1 in 3 patients needing a lung transplant actually get them on time.  Very scary.  And then to top that off, if you are one of the lucky ones to get the transplant, about 1 in 10 people die on the operating table.  Then, after 5 years, 5 out of 10 people do not make it because their bodies have rejected the lungs.  And the stats continue to go down.  After the transplant, the patient has to take about 20 anti-rejectory drugs daily to help their body accept the foreign organ.  But, it definitely does not work for everyone as you can see from the statistics.

July of 09, I will be going to Cincinatti to the National Institute of Health.  At that hospital, there is a doctor who specializes in LAM studies.  He is doing a clinical trial on a drug that is not FDA approved, but is being tried out to see if it will help stop further growth of the disease.  It is certainly not a cure, but may help keep patients in the place that they already are.  It is a very toxic drug, and so I will have 3 days of testing to see if I am able to be a part of the trial.  Hoping that I get accepted, there is a 50% chance that I will be put on the drug and a 50% chance that I will be put on a placebo.  Either way, I am anxious to be able to feel like I am doing something to help find a cure for myself and for other women in the world who have this disease.   Maybe not in my lifetime, but the next.

There is a Listserv of women with this disease that I have contact with online, and I see how they all live as positively as they can.  They live for the day.  That is how I am starting to live.  They have taught me a lot just by listening to them and reading their emails.  They have gotten me through a lot of hard times.

I have chosen to LIVE my life.  I am not going to dwell in the thoughts of dying.  I want my children to remember me as the positive, outgoing mother that I have always been.  I want my husband and family to remember me that way also.

A special thanks goes out to all of my amazing friends.  An entire team of people that love me are putting on a huge fundraiser for me and my family in August of this year.  And more than likely, there will be more fundraisers to come.   These fundraisers mean the world to me.  The funds will be used for several reasons.  I want to donate to continued LAM research as much as I can so that a cure can be found.  In addition, they will help in costs associated with my Cincinatti trips, the overload of medical costs that are associated with all of my hospital visits, and costs of the oxygen/oxygen therapy and lung transplant.  These costs are such a burden to my family, and I am blessed to have such a great group of friends and family that love us enough to help us in this way.

In closing, THANK YOU TO EVERYONE WHO CARES ABOUT AND LOVES MY FAMILY.  They are my world, and I want to know that they will be taken care of always.   This is a journey that I will continue to take.  And I am so thankful to God that I have been given such a great support system to help me along the way.