Medical Update 3/23

Hi Everyone,
Sorry to keep you hanging for a couple of days. Believe me, if  had huge good or terrible news you would know as soon as I could type. So the good news is that I'm cleared for hip replacement, which sounds like horrible news, but compared to the pain I'm having now, it has to get better. Little Evalyn will say, every time I come from the doctor, "are you better yet mommy, can you crawl in my puppy house or take a bike rid.?" Breaks my heart.                  [

The weird news is that I'm apparently the longest living person after a BMT, with my particular leukemia, that relapsed, with this much  GVHD, and all the surgeries etc, that Dr. Khoury has seen. I hope that makes me a light to others and leads research in the right direction.

The not so good news is that my CMV levels are high again and I don't know what that means for the short term or long term.The other issues is medical bills that are really piling up. As most of you know, I got all my teeth taken out due to all the treatment I've had.  We're hoping my medical insurance will help pay for some of the dental work.

I should be having my surgery the week of April 8th and will need so much more assistance than we've had.  We are thankful to have such a good support system of family and friends. Thank you for your prayers and generosity.  Please keep it up!

Thanks!

Love, Heather                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Medical update 3/5/13 ghost or oven mitt

I knew something was wrong last week. It seemed too good to be true that almost everyone I knew was sick in some kind of way and visiting new doctors offices away provides new germs. Add in my mystery low count, Dr. Khoury going out of town, and not being able to do anything that require moving and holding something. (Try making lunch and getting it safely to the table, thank you Evalyn for not dropping that plate that day) Then the fever, which I don't normally get very many because I run low, luckily we didn't have to go to Emory till Sat morning and Evalyn was already spending then night with Grandma and Poppa Frank. I got there and they decided to admit me and since it was Sat in the clinic I got a room pretty quick on 7E, not may favorite because home is 8E, but close enough. Last time I was here in I was on 5 where I playfully said the "crazy people are." It's just a normal hospital floor where people don't stay very long and there just happens to be a lot of crazy people there. There were people screaming in the hall and they had a lock on the fridge. I was wishing I had a lock on the door.

I used to have the best veins in the south, now sometimes they have to stick me over and over again. I don't get outside much so I play the cloud game with my bruises... what do you say a waving ghost or a oven mitt?

My lovely hip that has to be replaced. It can't hurt much worse than it does.

I thought I would spare you a pic of my toothless mouth right now.

So I've been getting pumped full of antibiotics because an infection could kill me and given tons of fluids, not good cause getting to the bathroom on time is very difficult. I've been in less pain of course because they have the good stuff here. Nah, it's really because there is noting to do so I'm not moving as much.My lung Xray was negative  labs are about the same. The oral surgeon same my gums are healing well and have no infection and..... that he feels I made the right decision to get them all out, my port wound is healing well and not infected. I still have this mystery bump on my left arm that looks very angry. Best thing, is I have not had a fever again and they must have a new chef because the food is a lot better. I was able to eat Meatloaf and Mac and cheese. The schedule had to be tweeked and Evalyn got a little sick but never had a fever. It goes to show that I really don't need to around anyone that is sick even though most people just say oh it's just allergies. Yes, I'm still planning on going on my 3 day vacation next week to the hostel in the forest. I haven't been in almost a year. Don't worry my brother is going to.He'll make sure I don't use my cane on  the pool table. Yes so what, I might die. Guess what, I might die, or your may die. No sense in the healthy having all the fun.

Going home tomorrow. I miss it so much. The infection... probably something spinning off the cold, yep tested positive for the rhinovirus.... the common cold. Which antibiotics don't do anything for, but for me it could have stopped a spring up cause of pneumonia.

Thanks for your prayers, pray as I go home and try to be patient, wife, and mom.

Love to you and my best friend Jim Banks, thats also in the hospital right now and my sister that is getting better!

Love, Heather