HLH Check-up/Thanksgiving

So far my labs look pretty good. My white and red blood cells have normalized into healthy range. I guess good labs make for a boring update. But it is nice not going nuts trying to figure out why they're not normal. I have a follow up with rheumatology in a few weeks. We'll probably be lowering the prednisone again. I can't wait to be off it.

Hope everyone had a nice Thanksgiving. Ours was good. We visited my family and Amanda's. Christmas is at our house this year so were going to the tree farm this weekend. Amanda already has the lights up.

Just wanted to say thanks to everyone for helping share our fellow HLH family members stories. It means a lot to us an them. Keep an eye out for more ways you can help. Amanda will be posting info on volunteering on the website soon.

-Eric

Lung check-up

Today was really long and i'm pretty tired. First I had a CT scan on my chest and abdomen to check my lungs, liver and spleen. Then I had to do a test to see if I breathe ok during and after exercising. 4 hours later I finally had my actual check-up with results.

Overall my lungs are where the doctors expect them to be. The medicines i'm on are limiting the amount of 'good inflammation' that increase healing, so everything will take much longer than it would if i wasn't on them.

The CT scan showed scarring from the spots that started to harden when i was on the ventilator and ECMO. Hopefully they'll continue to heal and soften. It's still hard to breathe big deep breaths sometimes and i get sharp pains too. They were still a little fuzzy in some spots. For those of you just following this is an improvement because i was told when i was on ECMO my lung xray was completely white and its supposed to be black to show air in them not fluid. My breathing test was good. They took my blood and measured the oxygen and co2 and then i exercised and they measured my breathing and heart rate continuously and then they took my blood again. I never needed oxygen help once-so that's good. My spleen is getting smaller, but is still enlarged and my liver is still enlarged. last time labs showed my liver function was okay though so we'll see next week after my labs come back.

The doctor said as long as I continue to do healthy things and don't get sick I shouldn't have to come back for a few months. So I wont have a lung doctor appointment until March of next year.

I also saw some familiar faces and met a new one. Maureen, who's having a baby next month, was one of my ICU nurses that took care of me when I was sleeping (medically sedated). She even donated blood directly to me with the program Amanda set up with the Red Cross when I needed several transfusions a day.It's pretty cool knowing these people worked so hard just to save me.

I'll have some bloodwork done Thursday to test my cell counts and see where I stand with the HLH. I won't have those results until next week. The Humira is helping my arthritis and I feel much less pain and almost normal, but weaker and slower.

New HLH Support Website

We are pleased to annouce the newly published HLH Support website --created by Kelly Marsh, mom of HLH and Bone Marrow Transplant Survivor Hannah Marsh. Kelly started a support group on Facebook a few years ago so families could unite, share their stories and support one another through this trecherous journey. With limited resources available for histio diseases, this website is a one-stop-shop for those privy to the HLH world who are looking to recieve a more intimate inside to what they are about to endure. Where there is Hope and Love - there is strength. --And there is plenty of that to around in this group from stories of loss that still empower others to continue to fight and stories of success, like Hanna's, that give us all the will to continue on this journey. This website will connect you to resources such as the Histiocytosis Association and other non-profits with specific goals in funding a cure to HLH.  It will guide you through the bone marrow transplant process for HLH patients. There you will find a link to the private Facebook group page. We hope you will find comfort in this site. Without Kelly's efforts to organize the support group the world would be a much colder place for HLH patients and their families. I think we can speak for the group when we say her mother's touch has touched us all.

Thank you Kelly! Congratulations!

-Amanda & Eric Majusiak

www.HLHSupport.org