November 6, 2011

It is always so lovely to be home! Our trip to Cincinnati was quite short, which is the best kind of trip in my opinion! But even more importantly, it was very productive. On Tuesday I had a whole morning of “Alice time”, and then my parents and I drove to Cincinnati. It is just over a 5-hour car ride… Not right next door, but it wasn’t so bad!

My appointments on Wednesday did not begin until the afternoon, so it was nice to have a chance to get some rest. The first doctor I saw, Dr. Yazigi, is a GI doctor. I have seen such a lot of GI docs, and only a couple of them have been able to provide any understanding of my belly problems. So basically I don’t needlessly get my hopes up when I will be seeing a new GI doctor. But Dr. Yazigi was WONDERFUL! I absolutely loved her. She was so very kind, and incredibly knowledgeable. (And, as a side note, I am pretty sure she has the best last name I have ever heard! It reminds me of my all-time favorite scene from “Bewitched”! It involves Darrin, a cow bell, and a duck call. Need I say more? “Bewitched” fans, check out the link at the end of my post!) Anyway, I have two very good GI doctors, one in Florida and one here in St. Louis, and I am very thankful for them. But neither doctor knows much about how HLH and gastroparesis can coincide, which is perfectly understandable as HLH is so rare. But Dr. Yazigi seemed to think that all of the trouble that I have with my stomach could go along with my HLH. She has even seen patients whose gastroparesis improved greatly following proper HLH treatment! She said that there was another case that was remarkably similar to my own, and she thought that Dr. Filipovich, the director of the HLH program, would see the resemblance as well. I left my GI appointment feeling very pleased and optimistic. Every once in a while it is nice to see a doctor who seems to have some idea just what is wrong.

After a pitstop in the gift shop (Christmas ornaments galore!), we headed down to the bone marrow transplant clinic. I think I have found my calling in life: To transform the decor of adult hospitals to be as cheery as that of children’s hospitals! The waiting room walls in the clinic were covered in safari animals! It was quite beautiful. Anyway, in this clinic I saw a hematologist/oncologist and a rheumatologist, along with those other guys (fellows, residents, etc.) who always follow along in teaching hospitals. I had been hoping to see Dr. Filipovich, especially after Dr. Yazigi mentioned the patient they had treated whose case was similar to my own. Unfortunately I was unable to see her but I believe she will be consulted, and I will hopefully have an appointment with Dr. Filipovich in the future. The hem/onc doctor that I did see is an HLH expert as well, though, and was very good. And I loved the rheumatologist. He was very wise, but not the least bit condescending, which is a much too common trait in many doctors! So HLH is a complicated disease, but basically there are two forms, primary HLH and secondary HLH. Primary HLH is the genetic form of the disease, and secondary HLH is more of an acquired form that goes along with rheumatological illnesses. It was helpful to have my appointment with both the hem/onc doctor and the rheumatologist at the same time, as they could communicate with one another, and explain the difference between primary and secondary HLH to my parents and me. The doctors seem to think that it is more likely that I have primary HLH, based on the nature of my flares and the absence of rheumatological symptoms. Since I have had multiple flares, particularly in this past year, it appears to be a pattern embedded in my system, and I will continue to have these flares if I don’t receive proper treatment. It is particularly rare for someone my age to be diagnosed with primary HLH, as it is typically found in babies. But, let’s face it, we already know that I have a complex and unique medical history! What is really wonderful is that the doctors are running SO MANY TESTS! Hopefully once we have the results we will know for sure which form of HLH I have, and we will be able to move forward with treatment with more confidence. We will be having a phone conference with the doctors in a couple of weeks. The genetic test results will not be back yet, but the doctors will at least be able to give us an update as to whether or not any of the other tests have shown anything of significance.

So overall I am very happy with our first trip to Cincinnati Children’s Hospital! I thank everyone for your thoughts and prayers… I believe this team of doctors may be able to provide much-needed answers and help for me.

And happy birthday to my papa!

Daddy’s birthday was this past Saturday. We haven’t had an official birthday celebration for him yet, but I did make Dutch babies for his birthday breakfast! What a lucky girl I am to have such a great dad! I am still awfully exhausted and catching my breath from our trip. Luckily my sweet puppy Alice is perfect company for lounging around and watching goofy movies! “Pippi Longstocking,” anyone?