Tuesday Morning

I had an appointment yesterday at the hospital. They really screwed up, though. Initially, I had my appointment scheduled for NEXT Monday. My last HGB was 9.1 so I called the doctor's office, told them that waiting 2 weeks would be too long because I'm pretty sure I'm going to need blood sooner. So she gave me an appointment for yesterday morning. When I got to the blood/treatment center, they didn't have me on their schedule. Apparently, she gave me an appointment to see the doctor only and not the have blood work, CBC, transfusions, anything...even though that was the sole reason I made an earlier appointment. They were able to arrange for me to have a CBC. And then even though my HGB is 8.0 and I need blood, they weren't able to get it for me yesterday. So I have to go back today, which is a huge hassle! They're getting me in at 4PM. I think I'm going to have to drive by myself because I'm not going to have my mom and sister take me AGAIN. I'm angry, annoyed and frustrated and it's very difficult dealing with incompetence when you're not feeling well.

So, I'll be off this afternoon for blood and will update again soon. Thanks again for keeping up with me and for letting me vent. And thanks for your continued good wishes and prayers and for keeping me in your thoughts. Believe in miracles.

HAPPY 5 MONTHS!!!

Wow. I didn't realize that so much time had passed since I last posted. Sorry.

Today is 5 months since I received my brother's stem cells. Happy 5 month birthday to me!

Monday's appointment went well, thank God. My WBC and PLT counts were terrific, but my HGB was only 9.1. I have an appointment scheduled for this Monday and they're assuming I'll need blood again. I'm a little confused/concerned about this. I was under the impression that I'd be finished with blood transfusions by now -- that the platelets are the last to come up. I had intended to discuss it with the doc at my last appointment but they had given me 50mg. of Benadryl and Pentamidine and I was really out of it. I don't even remember speaking to him and I slept in the car all the way home, where I fell right into bed and kept on sleepin'.

Since my transplant, I've been having trouble with my eyes constantly running, occasionally blurry, gloppy, etc. I went to the eye doctor on Tuesday. He said that my conjunctiva and my lids are swollen and gave me drops and wants to see me again next week. I've been using the drops for 3 days - 4x/day and I don't see any difference yet. I think it's from the meds. He said he didn't know. I'll give it a week, I guess.

On Wednesday, Mom, Illana and I went to the cemetery to visit my Dad and Grandma and the rest of the family there. Afterward, we went to a couple of outlet stores nearby. I think that it may have been too much for me because yesterday and today I'm really fatigued. Of course, it may just be that I need blood, too. Who knows?

Anyway, I did a little bit of cooking this morning. We're going to Illana and Keith for the Sabbat meals and I just made a couple of side dishes. I'm going to rest now.

Thanks for checking in and for all of your good wishes and prayers. Please forgive me for letting so much time pass. I wish you all a Good Shabbat, a wonderful weekend and only good things. Believe in Miracles!

Sunday Morning

Hi. Thank God everything has been moving along smoothly. The holiday was beautiful and seemed to fly by so quickly. We were all here at my house for the weekend and it was really nice. We sat outside in the backyard yesterday -- the weather was perfect!

My left foot, the one with the cellulitis, is feeling much better. It's still not 100% and I'm still taking Zyvox for it, but it's much better. Frustratingly, I still have pain on the upper right side of my abdomen when I take a deep breath or yawn or sneeze. I think it's because my liver is still enlarged. I wonder how long it's going to take to get better.

I've got an appointment with the doctor tomorrow. I'm scheduled to get Pentamidine again so I expect to be knocked out all day from the 50mg. of Benadryl.

I'm still overwhelmed and amazed that I was able to be home for Passover. It really makes you appreciate every little thing. Thank you so much for your continued prayers. Believe in Miracles!!

Tuesday afternoon

I'm sorry I haven't updated in a while. It's been a little hectic. I was discharged from the hospital last Wednesday afternoon at around 3:30 pm. Overnight, my foot improved dramatically (miraculously). I had been elevating it all night and when I woke up, the new nurse came in, looked at my feet, and asked me "which one is it?" Then Dr. Schuster came in with a group of students. He said that my foot looked much better. I jokingly asked him "OK, so I can go home?" to which he replied, "Yes, I'm going to send you home." I swear, I couln't believe my ears! I figured that he'd send me home IV antibiotics that the visiting nurse or I would have to administer. But NO. He said that they'd figured out which oral antibiotics they'd perscribe and that he would like to see me on Monday.

So Rachel picked me up and I was home by 5:30ish Wednesday. I had time to do a few things around the kitchen before the holiday and then went Illana's house for Seder. I had a little trouble keeping the tears from flowing, I was feeling very emotional. I honestly couldn't believe that I was there with the family for Seder. I remember when I first went to the ER last Sunday, I really, really didn't want to go because I just knew that I'd be in the hospital for Passover. It was really beyond my dreams that I'd be home for Seder. I made it through the first half and that was pretty much it for me. I was too tired even to eat dinner.

Next night we went to the Levys, wonderful friends of ours and neighbors of Illana and Keith. It was one of the most beautiful Seders I've ever attended. I felt so welcomed and comfortable with them and their wonderful children. It was a truly beautiful experience. Of course, I was teary there, too. I made it through dinner that time, but not the entire Seder.

Friday night was back at Illana and Keith. Overall, Passover has turned out to be a truly amazing holiday for me this year. I was dreading it and I'm overwhelmingly, pleasantly surprised but how smoothly and beautifully it's going. I know, without a doubt, that this is truly the month for miracles.

Rachel went to Miami Beach on Sunday morning and will be coming home Friday morning. Jacob went to Six Flags for the day on Sunday and then to Connecticut Sunday night to visit a friend. I'm expecting him back this evening. I miss them both so much.

I went to the doctor on Monday, expecting to need blood. I had received 2 units in the hospital the previous Monday morning and then needed more on Wednesday before being discharged. I'd just assumed that I would need it again on Monday. But B"H my counts were good. I didn't need anything at all! I don't have my next visit scheduled yet. I'll be calling to do that shortly.

I've been sleeping well, with the help of Ambien-CR, getting 7-8 hours per night. I'm still on the antibiotics, at least for another few days. My foot, as long as I leave it elevated, is great. After being on it for a while, it swells a little and gets pink and itchy. So, it's not yet 100% but, after the initial pain I had, it's a vast improvement.

I hope you're all feeling well and enjoying the holidays. Thank you for keeping up with me and for your caring, thoughful prayers and wishes. I wish you all the same. Enjoy every day and believe in miracles -- they're all around us!

It's a Miracle!! I'm Going Home!!

I'm going home! I can't believe it. I prayed for it but I still can't believe it.

Wishing you all a wonderful, kosher pesach.

BELIEVE IN MIRACLES!!!

Tuesday Morning

Good Morning. Well, I'm a little upset right now. Over the day yesterday, I felt that my foot was looking worse that it had been. Although it was less painful, it seemed to be getting redder and more swollen. When Dr. Schuster came in this morning, he agreed. So they're going to have to play around with the antibiotics, that the vancomycin and zosin are not doing the trick. Also, it appears that I will NOT be able to go home before Pesach. I don't even know what to say.

Back in the hospital

Hi,

Guess who's back in the hospital? Yesterday afternoon I took a nap. When I went to get out of bed, I couldn't put any weight down on my left foot. It was extremely painful and over the next couple of hours, got progressively worse. It was slightly red, slightly swollen and very warm to the touch. First, my friend Caroline, a hematologist/oncologist said it sounded like maybe a blood clot or cellulitis. She said either way, I should get to the ER. I called my transplant team doctor on call and she agreed. David was going to drive me but when we went to get me into the car, I almost fainted from the pain. So we called an ambulance and they brought me to NYP.

We got to the ER at around 8:30. They did a doppler sonogram and ruled out a blood clot. They started me on vancomycin for cellulitis and within minutes it seems to have gotten smaller, thank God. They admitted me and I was in a room by 3am. I received 2 units of blood, since my hgb was only 7.0 and more vancomycin and zosin, too.

Dr. Schuster was in this morning an said they're going to keep an eye on me for a couple of days. They also gave me a halter moniter since I had some bad palpatations on Saturday. So they're on top of things.

I still can't put any weight on my foot so I'm confined to bed for now. Hopefully, I'll be out of here by Wednesday morning, in time for the Holiday! I'm obviously sad and upset to be back in the hospital, but I'm optimistic and confident that this time we know exactly what's going on and how to treat it.

Thank you for keeping up with me and for your prayers and good thoughts and wishes.

Friday Morning

Hi,

I had an appointment at the hospital yesterday. My platelet count was 40!! Up from last week's 28. This is a major jump. My WBC was 6.7 which is very good. My HGB is lagging a bit ... Just 9.0 after receiving a unit of blood last week. But still, Thank God the numbers are coming up and everything is moving in the right direction.

They gave me the 50 mg. of Benadryl and then the Pentamidine yesterday and so I spend the rest of the day sleeping. My next appointment is on Tuesday, a bit early because of the holidays. Rachel is having 2 girlfriends sleep over for Shabbat so that ought to be nice. She was away last week and I miss her when she's gone.

I want to wish you all a Good Shabbat, good health and all good stuff. Believe in miracles!