Hi. I got home from the hospital by 3:30 today. At least it wasn't another marathon day. Due to the fact that I was typed and cross-matched for blood on Tuesday, there's no need to redo it as long as it's within 72 hours. So, as soon as I had my blood tests, they were able to start the transfusions. Again, I received a pack of platelets and 2 units of blood. My HGB was 8.3 and my platelets were 15. A definite improvement over Tuesday but still too low.
The doctor came and spoke to me and told me that I have CMV (Cytomegalovirus). He said that the test for CMV is very sensitive and that it shows up very early ... which, as I understand it, is good. Because it can be life threatening in immuno-compromised patients (Like Me). So, I've been taken off Valtrex (anti-viral med) and put on Valcyte. Doing internet research on drugs can be a very scary thing. The adverse reactions and side effects from this Valcyte is really freaking me out. PLUS the doc said that this drug messes around with the blood counts. I don't know. I guess I'm a little anxious about it. But he said that they're going to monitor me very closely now. I go back on Monday.
Also, I noticed my skin seems a little flushed. I don't have a fever, but my entire body looks a little sunburned. I mentioned it to him and he said that he did notice it last time and is aware of it and is watching it. In addition, my ankles are still swollen which he attributed to the water-retention from the Prednisone. AND Illana told me that the whites of my eyes looked very yellow to her. Doc said that it's from the anemia and will clear up. Liver is fine...no jaundice.
So, I know I'm rambling a bit but I have all this on my mind and that's kinda what this blog is for. Thanks for listening, caring, sending those good wishes, and praying. I love you guys.
Leah - it is all so normal. Please - don't worry yourself. The sunburn look can be GVHD, but if they are already treating you for GVHD anyway, then nothing would change. I too looked very sunburned when I had it. It turned itchy, and oatmeal baths helped a lot. As far as the Valcyte goes, no worries there either. I have also had CMV and was treated successfully with Valcyte. I am now on Acyclovir to prevent such things, but please don't worry. They still test me frequently for CMV, but I had it about the same time out from my transplant that you do, and I never had any symptoms. They treated it with Valcyte and before I knew it, it was clear in a couple of weeks. It will be temporary, I promise. Please let me know if you wanna chat. Sounds like you are going through EXACTLY what I did, and everything they told me something new like that, I would panic. Try not to relive my panic, because it works out in the end. This is just a bump in the road. No worries - and like my mom said - "stay away from the internet." Love ya lots, and glad you at least feel a little better. Put your mind at ease now and enjoy the energy.
ReplyDeleteHugs,
Marsha
Leah I know it's so hard not to worry. As new problems arise so does your anxiety. Keep in touch with your doctor if you have any strange symptoms. All the drugs your taking help one thing and interfere with another. I guess that is par for the course. On the other hand looking a little sunburn is better than looking pastey. Keep smiling and I'll keep praying. Love Always xxxoooxxx Beth
ReplyDeleteHiya- we have been getting constant updates on you and we are wishing this ordeal will soon end and your healing will really begin.. Stay off the internet with the medicine and illness...too scary, not all factual and no need to panic.. You have been so incredibly strong and optimistic- keep it coming cuz we ar all prayin for you to recover and regain your strength.. pretty soon spring will come and you will get out there on the Laloosh boat and see some blue ocean..Feel good.. Limor
ReplyDeleteShabbat Shalom from Yerushalayim,
ReplyDeleteLets hope its a quiet calm shabbos all over the world for all of us!
Hope you will relax and have a good shabbos!
always davening and thinking about you!
Love,
Zeldie
WOW
ReplyDeleteLove
Gary/Randie
As I'm reading your blog today I'm getting more and more concerned about you and how you are. Then when I start to read over the comments I say " Thank G-d for Marsha". I don't know who she is but she instantly made me feel better. Everything, you're going through is within the normal realm and you will be fine. We will all continue our tefillos, and you will do all that you are supposed to do, and all will be good.
ReplyDeleteI will call on Sunday and see if you're up to a visit. My mom really wants to come with me to see you.
Have a restful and healthy Shabbos.
Love ya,
Shelly