Update

Hello!

I wanted to write an update on things.  Thank you to so many people who have been asking and care so much.

I have had tons of testing done in the past 2 months.   My LAM doctor from years ago in Cincinnati Ohio (an incredible LAM scientist) is now working with and collaborating with my Iowa City doctors.  This happened perfectly in God’s timing, which I am so thankful for.  In my last blog, I told you that I would be having a biopsy done on the growth to diagnose it as LAM or cancer the Monday coming up.  That weekend, I received several text messages from women that read my blog about what I was going through who told me under absolutely no circumstances to do that biopsy because of the fact that the growths (if it was LAM) would be filled with ascites and would spill a poisonous substance in my body that would be very detrimental to me.  I emailed the doctor in Cincinnati that I used to work with, even though I have not spoken to him in over 7 years, and he wrote me back immediately and told me to absolutely not do the biopsy and that he would contact my lung team and begin to discuss and work with them on my case.  So, they canceled my biopsy preventing any further problems for me.  Thanking God for that timing and that I wrote my post when I did.

I met with the lung transplant team that week instead.  We did some additional testing, and the LAM doctor was strongly thinking that it was LAM that had developed in my abdomen.  I am not exhibiting common physical symptoms of cancer, so although we cannot positively rule out cancer, I am pretty sold on it being LAM.  My transplant doctor (whom I ADORE) told me that the main growth in my pelvis is the size of a baby.  She referred to it as my LAM Baby.  (They do say laughter is the best medicine, don’t they?)  The main growth is massive, but there are also lots of smaller ones…they have taken over most of the abdomen area, specifically pushing my bladder all the way over to the right.  They started me on a treatment called Sirolimus.  This is the medication I took years ago when I was in the clinical trial in Ohio.   The goal of the Sirolimus is to shrink the growths.  It worked somewhat on the LAM in my lungs years ago, but only for a short period of time. I am hoping that it works better in the abdomen.

The immediate concern with the abdominal LAM is the effect on my bladder.  I saw a urologist last month.  He said that it was “quite impressive.”  Again.  Laughter is the best medicine, right?  I had another UTI when I visited him, only my 2nd UTI in my  life, both in less than 2 months.  These growths have displaced the bladder and are pushing the ureters and smashing them.  The ureters are there to transfer urine between the bladder and kidneys, keeping us healthy.  My kidneys are already poor due to all of the medications and immunosuppressants I take.  This extra stress on these organs is not good.  So, it is imperative to get these growths to shrink because removing them is not an option.  Next month I will have an MRI to see if it is working or not.  This is such a rare disease, not a ton of research or cases to really know if things will work, but I am praying with my whole heart that it does.

I know I am in good hands, great doctors and a great God.  Some days I feel better than others.  I feel a dull ache in my belly a lot of the time.  I have so much pressure on the bladder, so I am in the bathroom a lot.  I am nervous that the LAM will develop in my lungs or other areas or that the Sirolimus will affect the great way in which my medications have been keeping me and my lungs going 8 years later.  But I have to just trust that God has a plan here.  In other news, my autoimmune disease has been kicking my butt in the past month.  Lots of pain in my body which isn’t helping.  But I am doing my best.  Regardless, I am living life like normal and doing all that I can do each day!  Hoping I kick this Lam Baby’s butt!!

Thank you for all of the love and prayers.  What would I do without you guys?