I haven't done a medical update in quite a while, so it is past time. Currently I am in the hospital at Vanderbilt. It has been two years and two days since my bone marrow transplant and I was not really planning on being back in the hospital now.
A recap: The first year and a half after the transplant I did very well. Then, starting last fall, my platelet count began dropping. I had a bone marrow biopsy, we watched the counts for a bit, and after another bone marrow biopsy the decision was made to start treating me with Vidaza. Hopefully the drug would knock out the dysplasia that was trying to come back and let my new donor bone marrow take over.
I seemed to be maintaining, though not improving a lot with the Vidaza. My other blood counts began to drop (an expected side effect), so I have been getting transfusions of red cells and platelets once or twice a week, depending on how low the counts get. However, because of our trip to France in March, Tori's graduation in May and Abbey's wedding and reception in June, we decided to keep on the Vidaza path until after the EVENTS, then reassess. (I kept telling all the docs I didn't have time to be !)
So we got to the end of June and time for reassessment. And then something weird happened. A couple of days after the reception at the farm I started getting hoarse, having a hard time breathing and a hard time swallowing. This has gotten progressively worse for the last month. When I came for my monthly appointment at Vanderbilt week before last, they put me in the hospital here to run some tests.
They did a whole battery of things: brain MRI, chest and abdominal CT scans, spinal tap, a myriad of blood tests, etc. Only to not be able to find out anything. Best guesses are that it is (a) maybe related to the emergency root canal I had right before the wedding that affected some nerves either at that time or (maybe more likely) in the healing process that followed, (b) maybe a virus, or (c) "idiopathic causes," which means they really have no idea and may never figure it out. I seemed to be getting a little better so they sent me home.
Monday I went to my doc at home and he was very concerned with how I sounded, gasping for breath, etc. Obviously I had gotten worse again by then. He called my Vanderbilt doc and they immediately sent me to the ER at Vandy. ER is supposed to make admission easier. HA! Do not believe anyone that tells you that. It was 8 hours from checking into ER before they put me in a room on the transplant floor in the hospital.
However, I've been here another two days and had more tests. More are scheduled. As a matter of fact they are coming shortly to take me for some neurological test called EMG. Swallowing, talking and breathing are all difficult, though they have me on oxygen to help with the breathing. And I get quite weak and tired when I try walking more than a few steps. They've been wheeling me around in a wheelchair. My doc is hopeful they can figure something out by Friday. And until we get this under control we aren't really doing anything else about the MDS. So this is kind of an update without an end. Will post more as they figure it out.
Thanks so much for stopping by today!
namasté,
Prayers going out..
ReplyDeleteBecky, I am sorry your are going through this. Sending you healing thoughts, lots of prayers, and (((Hugs))) from New England.
ReplyDeleteBecky I am so sorry you are going through all that. How scary. I admire tour positive attitude. Prayers for you. Becs
ReplyDeleteKnow that you will continue to be in my prayers Becky.{{{BIG HUGS from N FL}}} I hope they find out something very soon.
ReplyDeleteCarolyn
Thank you Becky for keeping us posted...you have been on my mind. The doctors will figure this out! Saying my prayers for you and sending you hugs! Love you bunches, Joanie
ReplyDeleteOh Becky! How I wish you didn't have to go through this... :( I'm praying for you Mike and the girls.
ReplyDeleteI forgot. There is a new son in law to be added to the prayers also.
ReplyDeleteBecky ~ wishing you the best.
ReplyDeleteThinking of you Becky; wish you weren't going through this.
ReplyDeletePositive thoughts as the tests continue that they will determine the unknown and get you onto the pathway of healing! Take care, my friend!
ReplyDeleteBecky, I'm hoping that you're back home soon!
ReplyDeleteI am so sorry you continue to have these problems, Becky. Sending good thoughts and prayers.
ReplyDelete*HUGS*
ReplyDeleteAunt Becky, thanks for keeping us updated. We so admire your positive approach to all of this. I'm giving blood as often as they'll let me and I'm on the National Bone Marrow Donor Registry. Is there anything else I can do to feel like I'm helping? We'll continue our prayers and look forward to good news.
ReplyDeleteHoping you have some answers soon.
ReplyDeleteBecky, I am so very sorry!! We are praying for answers and healing!
ReplyDeleteThanks for the update doll. I sure will miss you thus weekend.
ReplyDeleteI too am sorry to hear of all the problems you are having. You know you are in our prayers and thoughts. We will sent positive vibs your way Becky! Love you!
ReplyDeleteThanks for the update, Becky...endure the tests, and we will all be praying for God to lend a guiding hand to the doctors. Extra prayers for you going out now...
ReplyDeleteI'm thinking of you, Becky. You will be missed this weekend!
ReplyDeletethanks for the update hugs and kisses from me to you oxoxox
ReplyDeleteBecky, I am holding you in my thoughts and prayers.
ReplyDeleteLove ya Becky!
ReplyDeleteThinking about, and praying for, you my friend! Maybe you're just going thru the Rachael Ray phase of life. She always sounds hoarse!
ReplyDeleteOh Becky sending healing thoughts to you....feel better soon
ReplyDeleteThinking of you always Becky!!
ReplyDeleteBecky - praying you are feeling well soon......sending powerful cyber thoughts and prayers for a complete recovery. (((hugs)))
ReplyDeleteBecky, keeping you in my thoughts.
ReplyDeleteAnn
Well, phooey! I dropped in for an updated peek at your cooking adventures and see you've gone off and gotten a room at Vandy. Sending you prayers and well wishes, Becky!
ReplyDeleteYou continue to be in my thoughts and prayers.
ReplyDeleteWhen your hand feels warm, Becky, it's because I'm holding it in both of mine, and giving you a part of me. Hearts up, Becky!
ReplyDeletexoxox Craig
Embracing you with powerful healing hugs Becky ... Your strong, joyful spirit will prevail and we're here to promote all that is good for you. Sending love and caring to the nth degree. xo from the west/left coast.
ReplyDeleteBecky...I'm so sorry for all this. You're in my thoughts and prayers.
ReplyDeleteHere's hoping and praying you will be on the road to recovery soon!
ReplyDeleteAll positive thoughts headed your way. Be well soon.
ReplyDeleteOh goodess Becky! Thinging of you and sending postive and healing thoughts your way.
ReplyDeleteThanks for the update on your blog, I have been wondering how things were going at Vandy. Sorry you had to wait so long to be admitted. Hope things will improve very soon. Love you lots.
ReplyDeleteThanks, Becky, for all the info. Keeping you in my thoughts.
ReplyDeleteBecky, I wish I could talk to you ASAP!!! ... Please find out what was used during your root canal... it may very well be what's causing all your problems, and why they can't find out what's wrong with all the tests. I went through the same thing, but knew it was the teeth because the symptoms started shortly after the procedures... I'll see if I can find the link to my dental fiasco. If so, I'll post it... Hang in there! I'll be thinking of you!
ReplyDeleteBecky, I am sorry to hear of these new challenges and please know I am thinking of you. It will be 2 years in October since the removal of my spleen which, thankfully, fixed my platelet count that has remained normal since. When you mention the shortness of breath, it reminded me of my post surgery days when I was full of blood clots. I assume they have checked you out for those. Hang in there. I know you have a strong will.
ReplyDeleteOh my goodness Becky, I am so sorry. I sure hope you get answers soon. Keep us posted.
ReplyDeleteSending positive, healing thoughts your way. Hope you're back home soon.
ReplyDeleteBecky.... (((HUGS))). Prayers are being sent.
ReplyDeleteHealing thoughts heading your way, Becky. Hang in there.
ReplyDeleteBless your heart Becky. I so admire how your strength as you continue your journey through this disease and treatment. I will continue to keep you in my prayers & thoughts! Hugs!
ReplyDeleteHope things are going better for you today and that the doctors will be able to give you some positive information.
ReplyDeleteThanks for the update Becky...I have been thinking about you.
ReplyDeleteSending you healing thoughts and prayers...and continued strength...
L~xo
Becky,
ReplyDeleteHealing thought, love and prayers are coming your way. You are such a special lady and i love your spirit.
Renee
Sending healing thoughts and prayers.
ReplyDeleteSo sorry to hear your news! Healing thoughts and prayers heading your way!
ReplyDeleteI really hope you feel better soon.... difficulty breathing is so overwhelmingly miserable. Prayers for you.
ReplyDeleteOh, Becky, I hope the docs can solve this medical mystery and get you home! You've been in my thoughts constantly...first, because of your hospitalization...and second, bc Nick and I just checked into the Vanderbilt Marriott! He has a campus tour tomorrow. I had a fleeting thought of trying to see you...but we left two febrile family members at home and the last thing you need is the gift of germs! So sending you healthy vibes from close by! xoxo
ReplyDeleteI've said it before, but a litter reassurance helps...you are in my prayers!
ReplyDeleteHugs from Texas bringing wishes for a quick solution and recovery, Becky!
ReplyDeleteLots of love,
Patricia
Becky, you are such an amazing strong person. I admire you so much. Sorry you are going through this. Sending you prayers and hugs. Please keep us posted of your condition.
ReplyDeleteAs someone who has worked her way from one end of the hospital to the other, all I can tell you is to hang in there and be on the attack. Never let your guard down, never think you're about to succumb. Tell yourself that you're strong, healthy and powerful, even when you have tubes and wires connected to your body. Prayers to you, girl. Hang in there! XOXO
ReplyDeleteI've been thinking about you non-stop today and praying like crazy! Biggest hugs from your diva in Seattle. xoxo
ReplyDeleteGodspeed, dear Becky~~~~~~~~~
ReplyDeleteMy deepest sympathies to those near and dear to Becky. She was a treasure to so many people - those she met and those she 'met' online. She will be missed.
ReplyDeleteYou will be missed my friend. You taught me so much. My heart goes out to your dear family.
ReplyDeleteCarolyn
Prayers going out to the family.
ReplyDeleteI am sorry to come back to the blog world and hear such sad news. Take wings Miss Becky and fly.
ReplyDeleteMy condolences to your family.
You are remembered and missed by many.
To Becky's family, Becky brought so many gifts to people's lives. Please accept my most heartfelt sympathies for your loss. My thoughts are with your family during this difficult time.
ReplyDeleteCarol
Anyone is welcome to join the on-line tribute to Becky on Facebook. We will all be sharing blog posts, memories, photos dedicated to her on August 29, her birthday.
ReplyDeletehttps://www.facebook.com/groups/104571859643835/
Awww, you poor gal! Keep happy thoughts. Just think of your sparkling jars of preserves.
ReplyDeleteI just heard the sad news - my deepest sympathies to those who loved this lovely lady.
ReplyDelete