MondayMorning

Last Thursday, Illana and I took an overnight trip to a spa in Connecticut. It was my first real "outing" since my transplant and since having the catheter removed. It was a wonderfully relaxing time! We wanted Mom to come with us but Mom had cataract surgery on Wednesday morning and really didn't feel up to it. Thank God, she's doing real well!

I had a swedish massage, a hair/scalp treatment, and a facial (non-invasive, of course). I stayed out of the hot tub, swimming pool, steam room, etc. But I did duck into the sauna for about 5 minutes. It was the first time in such a long time that I really relaxed. Now, all I want to do is go away again. I've just spent the last hour researching other places to go. I'm learning what I need to do for myself and I notice that I've had a lot more energy since returning home. Before going away, I'd usually spend my day either in bed watching TV or in my big easy chair watching TV. I wouldn't move around too much. Since coming home on Friday, the only time I've gone into bed is to go to sleep at night and I haven't spent any time at all in my big chair. AND, I rode my bike again! So, maybe I'm really on my way.

I've been noticing increasing purple splotches on my chest and abdomen. I'll show them to the doc tomorrow when I go for my bone marrow biopsy (yikes!). David has arranged to take the day off and go with me. As of now, I don't know what time it's scheduled for. I'm waiting to hear from Dr. Schuster's office.

So overall, Thank God I'm feeling pretty good. My eyes are still a mess but I seem to be getting stronger and more energetic. My blood counts seem to be holding. I pray for the improvements to continue. Thank you all for your prayers and good wishes. Thanks to my Angels who continue to work behind the scenes. Believe in miracles!

Tuesday Morning

I had an appointment yesterday that, thank God went very well. Dr. Schuster said that I've "turned a corner." My numbers are doing well -- WBC 5.5, HGB 10.2, PLT 110 -- so no transfusions necessary. I had a pulmonary function test yesterday as well as the Benadryl/Pentamidine. Needless to say, I spent the rest of the day sleeping. I think I was supposed to go for a chest x-ray too, but I forgot about it! I need to go back sometime this week for an echo cardiogram anyway, so I guess I can get the chest x-ray then.

I'm scheduled for a bone marrow biopsy on June 9. This will be the first time I'm having it done under anesthesia so, even though I'm still dreading it, I'm dreading it less than usual.

My eyes are still bothering me. The doctor said that he sees some improvement but I don't really think so. I've already tried two different strengths of eyedrops to no avail. I'm hoping that they'll improve with time.

Other than that, I rode my bicycle for the first time of Sunday -- just around the neighborhood, but it was great! It felt really, really good. I'm might try to do it again today if I can get myself together.

I'm so grateful to all of you who keep on checking in to catch up. I am blessed with the greatest family, the best friends and the most loyal "lurkers". And I can't, for one minute, forget my Dad and Grammy who are always, ALWAYS looking out for me. Thank you all. Believe in Miracles!!

Thursday Morning

It's been a bit of a tired week for me. I had a house full of guests (which I LOVE) last Friday night and all day Saturday. It was really, really nice, but still tiring. Then we had a houseful for a BBQ on Sunday night -- again really, really nice, but exhausting. THEN on Memorial Day, we went out to the Tanger Outlets in Riverhead. Now that's incredibly exhausting. So the next few days I just stayed local and did whatever I could.

Tonight starts the holiday of Shavuot. Jacob is going to be in Connecticut with Yasmin. Rachel will be here with one or two friends. Mom will be here and of course, David and I. Hopefully, Rami and Lior, friends from Israel who have been staying with Illana will join us. Illana, Keith and the girls left yesterday for Boca Raton to spend the holiday with Keith's sister's family. (I miss them already).

I will be seeing the doctor on Monday. I'm scheduled for Pentamidine, a pulmonary function test and an echo cardiogram. It'll be a long day for me. I'm not sure yet who's going to be taking me, I guess that's one topic for discussion this weekend.

I've been feeling a little more "with it" since having the chest catheter removed, thank God. Whether or not it's psychological doesn't make a difference to me, I'll take it however I can get it. It's just that everything is easier without it -- showering, dressing, moving around...etc. and it's one less thing to worry about. I'm so grateful for whatever improvements I can report.

I'm grateful to you, too for checking up on me and for your continued support, good wishes and prayers for my recovery. Thank you. Thank you. Thank you. Have a beautiful Shavuos and Shabbos and a terrific weekend.

Friday Afternoon

I had a pretty good week, Thank God. I was out and about, shopping with Illana on Tuesday and Wednesday. But yesterday I was feeling pretty washed out and today, too. Also, my eyes are really bothering me a lot. They felt better last week than they do this week. I have no idea what it is that affects them...for better or worse. The site from the catheter is healing nicely.

I've been cooking all morning but I'm going to try to rest up this weekend. Maybe I just overdid it with Illana earlier in the week. Gonna take care of me, now.

Have a beautiful weekend and a good shabbos.

Monday's Appointment

WOW! I am pleased to report that I had a very good visit today. My counts were the best EVER, Thank God. Last week my hemaglobin was 9.6. I didn't expect to need a transfusion today but I did expect it to be somewhat lower. Instead, for the first time, it went up on its own...without getting blood. My platelets were 133! That's just a notch away from normal -- again without getting platelets! I am so very grateful.

Another exciting news item, this morning was my last dose of the Prednisone. For the last few days, I noticed a reduction in the puffiness in my face and neck and an improvement in my eyes. Whether these improvements are from the removal of the catheter or from the reduction in Prednisone and the introduction of stronger eye drops is anyone's guess. It doesn't matter to me, as long as it continues in that direction. I am truly blessed.

I called the doctor on Friday because I was nervous about going into the weekend with such a bad cold. Joanne prescribed Levaquin and after 4 days, my cold is much improved. I still have a little bit of a cough left and a tiny bit of nasal congestion but I'm feeling so much better.

I know that my Dad and my Grandma are working overtime for me and I think, for the first time since my transplant, I'm starting to see the light at the end of the tunnel. Thank you so much for your continued love, support and prayers. Keep on believing in those miracles!

Friday

I'm really suffering through this miserable cold. I should be cooking right now but I just haven't got what it takes. I just want to laze around and drink tea with honey. I'm taking Mucinex DM but I don't notice much of a difference. I still have this unproductive cough. Hopefully this won't last too much longer.

Mom is out West in Utah, vacationing with friends. She really needed this and I'm so excited for her. It's got to be difficult for her emotionally. For years, she and Dad vacationed with this couple and this will be the first time she's going it without him. She's a trooper, though and I'm sure she'll have a great time.

I wish you all a beautiful weekend and a Good Shabbos. Thank you for checking on me. Believe in Miracles!

Wednesday Afternoon

Well, it's out! Thank God, yesterday's catheter removal went very well. In fact, it went better than very well. David and I got there at 9 for the blood test and possible platelet transfusion. But my platelets were over 90!! I didn't need any transfusion at all. I had a lot of extra time and amazingly, the Department of Interventional Radiology took me right in. It seems that they had no other patients scheduled because they were in the process of interviewing new doctors. So they took me in, numbed the site with local anesthesia, took out the line and sent me on my way. The whole thing took about 15-20 minutes. I was finished before 11. I should mention that I did pass out during the procedure, but that's pretty typical of me. I got dizzy and my ears started ringing and the room started spinning but I never lost consciousness and they just laid me back a bit and I was ok.

When I got home, the little coughing that I had been doing for a day or so intensified and I was coughing my head off. Also, because we stopped at the supermarket on the way home and I probably did more moving/bending/lifting than I was supposed to, the wound started to bleed again. And by the time the anesthesia wore off, I was feeling pretty sore. Overall, once I got home I really wasn't feeling too well. I called the doctor to make sure I could take cough medicine and got the ok. I also took something for the pain. I was pretty drowsy last nite.

I called the doctor's office again this morning to ask a question about pain relievers and was told that the doctor wanted me to come in because I really didn't sound so good. I got Rachel to drive me in this morning. I had blood work again and then saw the doctor. I'm still coughing alot and I have a sore throat but Thank God my lungs sounded ok. He said it's a upper respiratory virus and I should continue treating it symptomatically. So I have a cold but thankfully no more catheter!

It's a real milestone for me. It's a big step toward getting back to normal and I'm very happy about it. Thanks for thinking of me and for your prayers and good wishes. Can't doubt those miracles for a second! They're all around us. I hope you're all well. Enjoy the beautiful weather!

Monday Morning

I'm scheduled to have the Broviac/Hickman Catheter removed tomorrow at noon. I've very excited and a little anxious. It's done by the Department of Interventional Radiology. I'm supposed to arrive at the hospital no later than 9AM for blood work. At last count, my platelet count was borderline for having the procedure. They like it to be above 70 and last Monday mine was 60. So, if it's still below 70, they'll probably want to give me a bag of platelets before removing the line.

I've been coughing a lot lately -- like everybody else. I'm pretty sure it's allergy. I have no fever. I hope and pray that it doesn'y delay the procedure. Having the catheter removed is a huge milestone for me. It was inserted a week before my transplant -- on November 17, 2008. It's been in for almost 6 months. Flushing the lines, changing the dressing, taping it up to shower...these are all constant psychological reminders of what I went through/am going through. I think that once the line is out, I'll begin to feel more normal, just not having this "three-headed monster" hanging out of a hole in my chest. I'll be able to dress more normally and showering wont be such a production. Also, I suspect it's a factor in my eye issue and I hope that there will be some improvement in the chemosis once it's out.

We had a BBQ here yesterday for Mothers Day. Honestly, I didn't want to do it and I wasn't really feeling up to it...I was kinda shamed into it. My brother wasn't going to and my sister said that she didn't feel up to it so it became mine by default. I mean, after all Mom's done for me... how could I not?? She's leaving on Tuesday morning for a trip out West - to Nevada, Arizona and Utah. I'm sure she'll have a great time but she will be missed.

I want to wish all of the Mothers a Happy Mothers Day, especially the New Mothers!! Mazal Tov to all of you. Thank you all for your continued caring and your prayers and good wishes. This recovery is seemingly longer than I expected it to be, but I'm not complaining. I've had a couple of bumps in the road, but so far, nothing that couldn't be managed. Thanks to all of you and to my Angels who are constantly listening and supporting and working overtime. Believe in Miracles!

Wednesday Night

I had an appointment on Monday and got my Benadryl/Pentamidine. This time, I saw the doctor before I got the Benadryl so that I was sufficiently coherent to have a conversation.

I had done some research last week and also spoke to two friends who happen to be oncologists. I learned that the chemosis (inflamed conjunctiva), coupled with my facial edema could be caused by an obstruction of the superior vena cava. My catheter is inserted between the superior vena cava and the arch of the aorta and so this seemed like a definite possibility to me. I called my doc to discuss this but he said that I don't have that. When I was there Monday, we discussed it further because I wanted to have whatever diagnostic test would either confirm it or rule it out. He sent me for a sonogram. Unfortunately, they were unable to see where my catheter is inserted because it's under my clavicle.

Either way, he & Joanne (Nurse Practitioner) feel that it's time for the catheter to come out. It's been in for almost 6 months. I really, really want it out. I needed some blood tests run before they'll take it out. This morning they faxed me the prescription for the tests and I had them done today. Hopefully my doctor will receive the results tomorrow morning and then we can schedule a day to remove the catheter -- ASAP.

They reduced my Prednisone further, too. I'm now taking 2.5mg once a week. I'm pretty happy about that. At my next appointment, two weeks from now, I hope we'll discontinue it altogether.

I was supposed to have a bone marrow biopsy at the end of May -- the 6 month mark. For some people, having a bone marrow biopsy is no big deal. I've spoken to people who said it was no problem, slightly uncomfortable, but ok. For me, it's absolute torture. I've had so many over the years and each time, it's the most horrible thing. So this time, I asked if I could get some kind of anesthesia so that I can sleep through it. YAY! I'm scheduled to have it done on June 9 in the OR with anesthesia.

I think we're up to date now. I've been feeling pretty well, moving in the right direction -- slowly. Thanks for checking in and for keeping me in your thoughts and prayers. Believe in Miracles!!

Friday Afternoon

I went back to the hospital on Tuesday and got 2 units of blood. It was a real hassle because Rachel had to drive me there and the timing wasn't ideal for her school schedule and then Jacob picked me us up (me & Mom) and he was busy working on a paper for school. And neither of them had working AC in their cars in 95-degree heat. Well, whatever, it's done.

I always expect to feel stronger right after a transfusion, but it usually takes a couple of days for me to feel a real difference. Yesterday was the first day I was able to get myself together and run some errands. Today I did some cooking. But both days, I'm pretty wiped out by the early afternoon. I think that I expected to be feeling stronger by now but I'm trying to be patient and rest when I need it. It's been just over 5 months since the transplant. At around 6 months, they're going to start weaning me off some of the meds.

I'm due for another bone marrow biopsy toward the end of May. I dread these. Some people have no problem with them but I find them to be EXTREMELY painful. I don't understand why they can't use some kind of sedation, like they use for a colonoscopy. I have to remember to ask about that.

My eyes are really bothering me alot. The puffiness and constant running makes it difficult to focus without repeatedly blinking to clear them. They eye doctor called it Chemosis -- inflammation of the conjunctiva. He gave me drops which I used for a week. When I went back to see him, we agreed that the drops didn't do anything at all (except cost me $50 copay). Dr. Schuster said that it's GVHD and that he sees it all the time. (Although I could swear that he told me that there was nothing wrong with my eyes). I hope that there's something that can be done for it.

Besides these few little things, I'm moving in the right direction and looking forward to feeling better and stronger. I have a lot of love and support from my family and friends. I thank you all for all the good wishes and prayers. Have a good Shabbat and a wonderful weekend. Believe in Miracles!

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!

Monday Morning T+126

Good Morning,

Thanks to Ambien-CR, I've been sleeping better. I've been getting about 5-6 hours of sleep for the last few nights. I just don't want to rely on it too much and I'm looking forward to being able to sleep without it.

I drank a bunch of Emergen-C's (which I've been using for years and I swear by!) and my sore throat has cleared up, Thank God. As per my bestest friend Marsha, maybe the headaches are from coming off the Prednisone, or maybe it was from the weather because I DO sometimes get headaches before it rains and it did rain (and thunder and hail). Whatever the cause, I feel better now B"H.

Rachel went with me to the supermarket yesterday to shop for Passover. It was a ZOO! And poor Rachel didn't feel well, either. In fact, she took a nap when we got home and woke up with a fever and sore throat. Yes, I know to not get too close, but hey! This is my Baby!! Anyway, she was supposed to go out with a friend last night to celebrate his birthday but we kept her home, gave her Advil, Emergen-C and sent her to bed. Hopefully, with God's help, she'll be better today. If not, I'm going to have her see the doctor. For some reason, when she doesn't get enough sleep, she is susceptible to tonsillitis. I'm praying that's it's just exhaustion and that she'll be OK when she wakes up.

I'm scheduled to work with the Physical Therapist today for the last time. Then, depending on how tired I am, I'm going to continue working in the house to prepare for Passover and then maybe go out to buy a few more things. I'm going to have to play it by ear since I've been so tired lately. It's all wait and see.

I hope those of you preparing for the holiday aren't working TOO hard. We all know how crazy it can get. But maybe it really doesn't have to be. Try to enjoy every day, appreciating all the amazing wonders around us. Thanks for being there. Believe in miracles!

Saturday Night

Hi,

Thank you so much for writing such encouraging words. I haven't been sleeping very well and I've had a sore throat and a headache for the last couple of days. I can't take Tylenol or Advil because they could mask a fever and I have to check for fevers often. Thank God I haven't run a fever. I have something stronger for pain but it seems like overkill to me, to take such a strong painkiller for a sore throat or headache.

On the plus side, my puffiness is definitely reduced and so is my shakiness and much of my moodiness (or shall I say "craziness") with the further reduction in Prednisone. But I am feeling a lot of fatigue and am having trouble doing everyday things around the house. I think (hope) that it's probably a combination of the reduction of Prednisone, anemia, lack of sleep, and normal healing time. I am trying to be patient with myself and not push too much.

David's going to change my catheter dressing now and I'm going to flush the lines. Hopefully, tomorrow will be a stronger day.

Thanks again for all of your prayers and good wishes. I hope you're all well. Believe in miracles!

Wednesday Night

I had an appointment at the hospital today. Everything went well, thank God. I got 1 unit of blood transfused. Dr. Schuster further reduced my Prednisone to 2.5mg daily but added a third medication for HBP. I'm already taking Norvasc and Hydralazine and he added Vasotec. Hopefully that will control my pressure.

B"H I've been feeling better emotionally -- nothing like Friday's meltdown. I still have my moments and I get very frustrated and impatient with my progress or lack thereof. But it IS just 4 months and I'm going to try to be more patient with myself. I think that the pressure of the upcoming holiday is getting to me. I also think that I'm expecting myself to do more that I can do and I have to learn how to say "that's it". Whatever gets done will be done.

Mom will be returning from Florida next Wednesday night and I'm looking forward to that. I have my next appointment on Thursday afternoon. For now, thank you all again for your words of encouragement and for your thoughts and prayers and good wishes.

Monday

Hi. Sorry I haven't updated in a while. I've been feeling down in the dumps -- spending a little time wallowing in self-pity. It seems that although I've been eager to wean off of the Prednisone, it's the Prednisone that was giving me energy and, it would seem, a false sense of well-being. I'm down to 5mg. daily and I've been feeling pretty miserable. Tomorrow will be 4 months since my transplant and I'm frustrated with how limited I am.

At my last hospital visit last Thursday, I didn't need any blood products but I did get my Pentamidine and Benadryl and spent the entire day sleeping. Friday I woke up feeling miserable and sorry for myself and spent the day weeping. I haven't even been doing my PT.
But today the therapist came and so it was unavoidable. I'm glad I did it, though. It forced me to do something.

Meanwhile, I'm going to try to snap outta this funk I'm in, try to find the positive attitude that I seem to have misplaced. Thanks for hanging in with me.

Monday Morning

Hi. B"H I'm doing ok. I'm always expecting to feel a marked jump in my energy level after receiving a blood transfusion. But it always takes a few days until I feel it and then it's a gradual improvement. Still, as long as it gets there. I think that I'm feeling the reduction in the Prednisone, as well. My face is less puffy and I'm definitely less moody. (Actually, maybe I should ask David about the moodiness).

I just started cleaning upstairs for Passover -- in Mom's room. The UPSTAIRS part of that sentence is a really good thing. I'm finding walking the stairs to be easier and easier. I no longer have to lift myself up each step using the hand rail. At least my legs are getting stronger. Now, the cleaning part...that's a different story. As I said before, I'll do what I can and no more.

I've been knitting again. I just finished a scarf/shawl that I had begun while in the hospital this last time. It came out very nice. I'll take a picture and post it (since I'm definitely not posting any pix of me!).

My next appointment with the doctor is on Thursday afternoon. I'll call later today to find out if I'm scheduled for the pulmonary function test and/or Pentamidine. If I'm scheduled for the Pentamidine, I've got to be prepared to sleep for the rest of the day.

I hope you're all doing well. Enjoying the milder weather (locally) and in good health. Thanks for keeping up with me. It really helps.

T+110 Saturday Night

OK OK OK! Too many people are not happy with me for not updating my blog more often. I asked the question "Should I update even when I've got nothing to say?" to which the answer was a resounding "YES!". So, please forgive me for not posting since Tuesday. I was actually planning on updating yesterday after my appointment at the hospital, but I came home and slept.

Yesterday's appointment went well, Thank God. I was scheduled to have a pulmonary function test (PFT) but when I got there I told them that I wasn't really feeling up to it. Since Wednesday, I'd been very fatigued. My hemoglobin was 8.0 which explained the way I was feeling. So, they've rescheduled my PFT and gave me two units of blood which always starts with a couple of Tylenol and Benadryl. The Benadryl really knocks me out and so, when I got home I just kinda passed out for a couple of hours.

I'm feeling better now, a lot less fatigued. They further reduced the Prednisone to 10mg. daily. I've finished my course of Levaquin -- which was the oral antibiotic I was taking. But they increased my Hydralazine which I'm taking for hypertension (a side effect of the Prograf -- the immuno-suppresant). I'm still checking my glucose regularly and injecting myself with insulin 3x daily.

I'm still doing my physical therapy whenever possible. (I skipped a day or two because of soreness or fatigue). But there's definitely marked improvement! It's much easier for me to get in and out of a chair and up and down stairs, although my left leg still needs more strengthening than my right. It's definitely coming along and I'm pleased with the results.

I'm starting the think about preparing for Passover -- part of me is looking forward to it and the part of me is dreading it. It's going to be a lot of work and I don't know how much I'll be able to do. I'm just going to do as much as I can do.

Again, I want to thank God and I want to thank you all for following along with me. I know I'm one of the luckiest people in the world! Between my brother -- my "perfect match", my sister -- my other "perfect match" - my mom and the rest of my family and all of you who are praying for me and the best Doctors and my Dad and Grandma who are watching over me and keeping me safe, I am truly Blessed. How can you NOT believe in miracles???

Tuesday PURIM!!!

Happy Purim to all!! I haven't blogged since Friday because thank God I don't have any news. Everything is moving along. I've been doing alot of physical therapy to get stronger and resting when I need to. I finally finished my oral antibiotics. The abscesses are smaller and almost painless. I still get pain on my right side when I inhale, sneeze, cough. I think that I'm less "puffy" with the reduced Prednisone. I'm still shaky and my vision is occassionaly blurry but that's from the other stuff.

Other than that, I went to Temple last night and made my "debut". I haven't seen any of those people since before my transplant. And, since it IS Purim, and costumes are in order, I dressed as a surgeon. That way I was able to wear a mask and gloves and it didn't look TOO crazy. It worked out well. I'm still nervous about germs when I'm around alot of people, though. I can't wait to get back home.

I think we're going to Illana and Keith's to celebrate later. I'm looking forward to that. I like to get out a bit, as long as it's not in a crowd.

That's it for now. Keep believing in miracles! They're EVERYWHERE!!!

Friday Afternoon

Sorry I didn't update yesterday. They gave me another dose of Pentamidine yesterday at the hospital, preceeded by 50mg. of Benadryl so I was really out of it all day. The visit went very well, thank God. I didn't need any blood products. In fact, he's cutting me back to once weekly visits instead of twice weekly. My bood counts are holding nicely. We also cut back a bit more on the Prednisone, down to 15mg. daily. They're still watching the CMV level closely.

The physical therapist was here today and it's going really well. He noticed my progress and I HAVE been working very hard at it, except for yesterday when I was too drugged up to do my exercises.

I did a bit of cooking this morning and I only have a couple of other things to do in the kitchen. But right now I'm taking a break. I want to wish everyone a wonderful, peaceful and healthy weekend. Thank you for your thoughts and prayers and good wishes.

T+100

So this is what 100 days post-transplant feels like. Not too different from 98 or 99, actually. Just kidding around. I didn't expect a magical 100 to start feeling differently. I did, however go to Costco today. As you may or may not recall, the last time I went to Costco (also a Wednesday, I might add) I ended up going back into the hospital that very night. This morning, I asked Illana to take me to Costco and she didn't want me to go. She thought it would be bad luck or something like that. But I really did need to go and get some things and today it was not as frigid out as it has been for the last few days, so it seemed like a good idea to me. I did wear latex gloves the entire time so that I never actually touched the handle on the cart. And I did wash thoroughly as soon as I got home. And we really didn't spend too much time there, it was a pretty quick shopping. I only had a couple of things that needed to be brought into the house right away and everything else is still in the car awaiting arrival of other family members.

As expected, I was pretty exhausted when I got home (still not sleeping well). So I took a nap for about 45 minutes (gotta remember to shut off the phone ringer next time). When I got up I flushed my central line and did my exercises and rode the stationary bike. David will change my dressing when he gets home later tonight.

I have an appointment at the hospital at 9AM tomorrow. They've ordered 2 units of blood and 2 packs of platelets but I'm hoping I don't need them. I won't know until we get the CBC results.

Another thing...I've been injecting myself with insulin since my hospital discharge. I'm not diabetic but diabetes is a side effect of the Prograf I'm taking. So I check my glucose level before each meal and at bedtime and almost always needs insulin before each meal. Side effects stink. At my last visit, Dr. Schuster added another HBP med, Vasotec, because my pressure is still high. I'm now taking Norvasc, Hydralazine, and Vasotec for HBP. Do I normally have High Blood Pressure?? No! It's also a side effect of Prograf. My blurred vision (can't drive yet) is from yet another medication and so is my big round moon face and numerous chins. Yeah, that's my new thing...side effects stink!!!

OK, sorry for the little rant. Thank God, I'm feeling well enough to rant and shop at Costco and exercise, etc. I'm grateful for every little step I take. Hopefully I'll get a good report tomorrow and I'll update when I get home. Thanks for being there for me.

T+99

I was so tired yesterday that I forgot to mention a couple of things. First, they lowered my dose of Prednisone down to 20 mg. daily. So, that's good news. The not-as-good-news is that there is evidence of CMV (cytomegalovirus) again. So far, it's low enough that I don't have to restart the Valcyte but if it goes up, I guess I'm going to have to take it again. I really don't want to because of the way the Valcyte suppresses my blood counts. They're just starting to come up.

I'm still not sleeping well. I fall asleep as soon as my head hits the pillow but I can only sleep for about 3-4 hours and then that's it. I haven't been taking any sleep aids but I just might start.

Mom left today (again) for Florida. She's planning on staying there for about a month and coming back up north before Passover. This will be our first Passover home in...years....I don't even know how long. But I can't go down to Florida this year. So the whole family has to suffer right along with me. Honestly, I'm kinda looking forward to spending it at home - like the good ole days.

I'm still having trouble walking up stairs, bending, etc. I had an evaluation from a visiting physical therapist yesterday. It went very well. He'll be coming a couple of time a week for a couple of weeks and then I'm on my own. He gave me some exercises to do every day. I think that that is all I really need as far as getting my leg strength back is concerned.

That's it for now. I'm hanging in there and I appreciate your hanging in there with me and for keeping me in your thoughts and especially your prayers.

Monday Afternoon

I just came back from the hospital. Thank God everything is going smoothly. I didn't need blood or platelets. Wednesday will be T+100 and so they did a few extra tests today...I had a chest xray, EKG, urinalysis, extra blood tests (14 tubes!).

The doctor removed the remaining stitches from the skin biopsies I had before I was discharged from the hospital. The biopsies revealed nothing new.

I haven't been sleeping well and so I'm exhausted right now. Rachel and I are going to watch a movie and hopefully I'll take a little nap.

So far, So Good. Thank God. I'm taking one day at a time and hoping for the best. Thank you all for the prayers and good wishes.

Saturday Night

I haven't updated since Thursday night. Thank God I'm feeling ok, tired, but ok.

Our community suffered a catastrophic loss today and it's affecting me deeply. The next few days will certainly be difficult as a young child has been taken from us. I'm at a loss to make any sense of it and am having trouble finding any of the positive outlook I've been trying so hard to hang on to. I pray for strength and guidance. I pray for peace and comfort for an amazing family who have comforted me through my "tough times". I pray to understand and accept that over which we have no control.

Pray for us all.

Thursday Afternoon

Mom, Illana and I went to the doctor this morning and then we had planned on going to the cemetery in New Jersey, today being the one year anniversary of my father's passing away. Unfortunately, on the way in we learned that Illana's youngest, Nava has strep throat and so we scrapped the drive to NJ. Perhaps we will go on Sunday.

The visit at the hospital went well, Thank God. My counts were good and I didn't require any transfusions. My spleen is much smaller and Dr. Schuster believes my liver is smaller, too. It's still tender at times, especially when I inhale deeply, but definitely improved. Also, the abscesses are smaller and less tender. There are still a couple of stiches from the skin biopsies (which have revealed nothing) that will be removed next week.

Next Wednesday marks Day 100 Post-Transplant. I can't believe how far I've come. Looking back, I can't believe how much I've gone through. I'm grateful that there are many days I can't remember. Mom just said that it's unfortunate that she remembers them all. I can understand that. While I'm "out of it" she's agonizing...can't be easy. She's the strongest person I've ever known...I pray that God should give her strength to continue.

I know that my Dad and my Grandma, my Angels, are in a beautiful place and that they've been with me every single step of the way. I thank God, I thank them and I thank you all for letting me lean on you. Believe in miracles!

Wednesday

Tonight is the first anniversary of my father's passing away. We're having a small gathering here to celebrate his life with some people who knew and loved him.

There's really not much more I want to say right now. Thank God I'm feeling ok and am able to participate.

I'll post tomorrow after my appointment at the hospital.

Greetings from home :)

Hi from the comfort of my own bedroom! Nothing feels better than coming home. I feel truly blessed to be here and feeling well. They gave me 2 units of blood before I left yesterday and I have an appointment at the hospital on Thursday morning. The visiting nurse was just here to evaluate me for PT and other services.

I pray for uneventful days and increased strength as time goes on. I'm definitely stronger than I was the first time I came home. Mom's here with me but is scheduled to return to Florida on Tuesday.

Thank you for all of your prayers and positive thoughts, they help more than you can imagine!

GOING HOME!

HOORAY!! I've been sprung! I'm going home today. First, I need 2 units of blood and maybe platelets. Hopefully, my next post will be from the comfort of my very own bedroom.

Until then, thanks again for supporting me on this journey.

Sunday Evening

Weekends are holding patterns around here. Not much happens. My night alone went very smoothly. I actually got some sleep. Thank God I'm feeling well and looking forward to going home. I'm hoping that I'm able to tomorrow.

Mom's at my house and feeling much, much better. Nothing a good night's sleep (10 hours) wouldn't cure. Thank God. She's cooking me up a bit pot of chicken soup!

David's here now. It's a very grey, dreary day and it's very quiet around here. I've done a lot of walking around the halls. And I got a bag of platelets today. I'm sure I'm going to need blood tomorrow and that takes a few hours. I hope they can get it all done by a reasonable time.

Thank you for hangin' in there with me. You give me strength and encouragement and make it so much easier to stay positive. Believe in miracles!

Saturday Night

Today was a very quiet day. Not much is happening. There are no answers, no new results. The doctors are still quite baffled but, from what I hear, we're aiming to get me out of here on Monday.

Mom is not feeling well again, stomach virus. I'm sending her home with David and Illana. This will be the first time I'm here alone. Thank God I'm feeling well enough and I'm pretty sure I'll be fine.

If it weren't for all of the arrangements for home care that need to be made vis a vis visiting nurses, home PT, etc. I could probably get out of here tomorrow. Unfortunately, the social worker who makes these arrangements will not be in until Monday. So for now, we just hang out and wait.

Thank you all for all of your support, love, good wishes and prayers. Ya just gotta believe!!

Friday Afternoon

Everything is moving along. I've been trained to test my glucose and administer insulin. I had PT again and practiced on the stairs and rode the stationary bike. We haven't received any results yet from the biopsy they took yesterday.

Thank God I'm feeling well and looking forward to getting out of here. I want to wish everyone a beautiful, healthy & peaceful weekend and a Good Shabbos. Thanks for all of your prayers and good wishes. There are miracles happening all around us, all the time!

T+87

Dr. Gurgis was in earlier and told me that I'd probably be going home on Monday, God willing. After seeing me yesterday, he had a meeting with the Infectious Disease Specialist and I think that, between the two of them, they are not happy leaving unanswered questions. He's ordered another skin biopsy. Hopefully they'll do it today.

This morning, after giving me 50mg Benadryl IV, they gave me the Pentamadine. It went off without a hitch -- mostly because I slept through it. I also received a unit of blood. They started to show me how to test my sugar and administer the insulin. It's good to see that the wheels are in motion.

I'm still feeling pretty dopey from the Benadryl so I'm going to cut this short. Thanks for being there for me and for your thoughts and prayers.

Update

I think my elation may have been premature. They seem to be backpedaling a bit, not exactly sure when I'll go home.

As far as Bactrim is concerned, I have a Sulfa allergy so that's not an option for me.

More updates as I get 'em.

The "H" Word

The doctor just left and told me that they're in the process of making all of the necessary arrangements to send me HOME. Thank God!

They just removed the stitches from the skin biopsies. They've reduced my Prednisone dose by another 5mg. Since the meds make my glucose high, they're sending someone in to train me to check my glucose and give myself insulin -- something I don't know why they didn't do the first time they sent me home, but at least it'll be done now. They're trying to arrange for the IV antibiotics to be administered at home. They're also going to give me Pentamadine, which is a prophylaxis anti-pneumonia medication. They tried to give it to me once before but I had an allergic reaction to it. They're going to try it again but they're going to give me Benadryl first. I'll be sure to get a prescription for PT.

I still have pain in my abdomen when I take a deep breath and I still have the skin abcesses but Thank God they're both tolerable.

I feel so blessed -- I didn't even consider that I might be home before the weekend. I'm so grateful to all of you for your never ending support and prayers and good wishes, for seeing me through this bump in my road to recovery. You just GOTTA believe in miracles!

Tuesday Afternoon

I'm feeling pretty well, Thank God which is surpising since I didn't sleep very well last night and I woke up with a headache. I had physical therapy and it went very well. We even started on the stairs.

The doctors have actually said the "H" word..."HOME". The abcesses are improving and the abdominal pain is improved B"H. That's going to take some time to go away. I'll need to be here on the anti's at least until the end of the week. We'll see from there.

Illana just told me that she "hates this blog" and wants me to stop doing it. I don't know if I can. So for now, I'm still here because I'm addicted and I need you!

Thank you for all of your prayers and good wishes and positive energy. I believe in miracles even if "you know who*" doesn't.

*Illana

Presidents Day

Well, I'm definitely starting to feel more like myself, Thank God. I've been doing a lot more walking and knitting and and starting to think about going home. There's no projected date yet, but at least I'm thinking about it. Some of the marks on my leg are starting to peel a bit and the doctor said that that means that they're starting to heal. So, it seems that we really are on the right road.

Also, Thank God Mom's cold is practically gone. She's been taking Nyquil and Dayquil and she sounds much better today. I was real nervous about having her here while she was sick, but the doctors said that we should just make sure we wash our hands often and I'm already on all the anti's anyway.

Walking in the hall today was like walking in the park on a sunny day, there were so many people walking. I met a few other patients from this unit. They all were very friendly.

My nurses and nurses assistants have been above and beyond. They are truly the creme de la creme. The hospital has these forms to fill out if you want to let them know about exceptional employees. Fortunately, I've needed to fill out quite a few lately. I'm very grateful and am blessed to be cared for by these very special people.

Thank you all again for all you do to bolster my spirits. I know that God and my angels are looking out for me and helping me get stronger every day. I believe in miracles and so should you (schvest!).

Sunday Evening -- Stay the course

I'm still here, still on the anti's. Not much has changed, which is good. There are no new abscesses and the existing ones have not gotten any larger or worsened in any way so that is considered an improvement. We're just going to stay the course and hope and pray that it'll clear up. Still no explanation for the liver pain. I don't know if there will be one.

I've been sleeping well (drug assisted) and walking and doing my exercises and I am feeling stronger. I asked David to bring my knitting bag today, so I really must be feeling better.

I'm feeling a little tired now. So I'm going to keep this short. The love, good wishes and prayers are overwhelming. Thank you for helping me stay strong & positive.

Saturday Night

I think every doctor in this institution has been in and out of my room within the last few days. There are no conclusive results and/or answers to explain everything. The indium scan showed the skin infections. It didn't show anything in my liver. If the abdominal pain is being caused by the size of my liver, it still doesn't explain why my liver got so large. That's still a mystery. They've mentioned doing a liver biopsy, but they don't really want to do anything invasive and my liver enzymes are all normal.

We were told that they consulted at least four different radiologists to try to make some sense of the MRI, to no avail. I don't really get it.

Meanwhile, I'm on IV antibiotics and antifungals. I'm getting stronger and have been walking the halls and doing my exercises.

Thank you so much to those of you who baked challah for my recovery and for your prayers and good wishes. I still believe in miracles!

Friday Afternoon

I had the indium scan today but I haven't heard any results yet. I'm feeling better than yesterday, Thank God. I don't have much to post now. I'll post again tomorrow night.

Wishing you all a wonderful Shabbos.

Thursday Evening

More information has begun to trickle in. The skin histology has been identified as panniculitis -- which is essentially inflammation of the deep fatty layer of skin (adipose tissue). It identifies the location of the inflammation but not the cause. We're still waiting for the cultures. It does seem consistent with the pseudomonas and we're hoping that it will be identified as such.

I'm also going for an Indium Scan. What they did today was take out about 50cc of blood. They separated the white cells, treated them with radioactive indium, and then re-injected them into me. Tomorrow, I go for a scan which tracks the white cells which will, hopefully, go to the infection site or sites. They have still not been able to locate exactly where it is and I still have the pain in my upper right abdomen. The pain may or may not be infection related and could be just from the sheer size of my liver which has been described as "massive". Also, because I have already been on antibiotics for a few days, it may or may not work.

I didn't feel as well today as I had for the past few days. Just really tired. I did a couple of laps in the hall because I really don't want to lose whatever momentum I have with the PT. My feet, ankles and legs are still very swollen and they've been giving me diuretics for it.

I'm trying to stay positive and I thank you all for your help with that. I believe it's just a matter of time before I begin to feel more like myself and I'm trying to be patient.

Wednesday Afternoon

The good deeds and acts of kindness being done in my merit leave me so very, very moved and uncharacteristically speechless. There are no words. I pray that I am worthy and look forward to being able to "pay it forward" with acts of goodness, kindness and charity.

For now, there is no more "news". I started physical therapy today, which went very well. I wanted to be able to do some walking in the halls but I needed something to steady myself. The therapist gave me a walker and we did one lap. She also gave me a bunch of exercises to do in my room and I'm looking forward to doing them. The eye doctor came and examined my eyes yesterday, and Thank God they're okay.

I was told that I'd be here for at least 2 weeks on IV antibiotics. We're still waiting on the skin biopsies.

Also, I heard that there are a bunch of you out there who donated blood and/or blood products. That's an amazing gift to so many of us who need transfusions and I thank you. I know I've gone through quite a few pints, myself. So, please, if you can, give blood.

For those who wanted to reach me by email:
LeahRSolomon@Gmail.com or
LeahSol613@Yahoo.com
I'll try to respond asap.

Finally some answers

Some of the test results have started to provide us with some answers. They have identified the bacteria in my blood as pseudomonas. We're hoping that the skin cultures come back with the same bacteria. The doctor believes that it will as it is consistent with pseudomonas.

I have already spent a few days on the "right" antibiotics and so, with God's help we'll be seeing improvement soon. I know that the pain is not as bad and I don't think that any new skin "lesions" have appeared. The echo cardiogram showed no heart valve damage, which can also be caused by pseudomonas.

I was able to take a shower today, which shows my strength is improving. It also makes me feel much better. They are sending in an ophthalmologist to check my eyes for fungus because they're looking a little weird. And I'm waiting for the physical therapist to start me with some light PT for the muscle weakness in my legs.

I didn't know whether or not to mention this, but...may as well. The doctor, very bluntly, said to me "you're a very lucky girl. If you hadn't been in the hospital already on Saturday morning, you'd be dead." It was very shocking to hear, but made me think about how truly blessed I am. That I was sent to the hospital on Wednesday night with abdominal pain and it saved my life. Also, the fact that Mom was here, at my bedside when the event occurred, even though I told her NOT to come. Illana, of course, told her to come.

I am so grateful for all of the positive thoughts and comments. I know that your prayers are being heard and there will never be a way for me to show my gratitude to all of you. Please keep me in your prayers. I know that God and my angels are looking out for me.

Monday evening

Hi. It's me. Illana's not here right now (for a change) so I guess I'm updating on my own. Today was a better day. I still have no answers but the pain is less intense and I'm feeling a little stronger. I've been bolstered by so many of your comments and good wishes. I'm hoping that tomorrow brings more answers and more strength.

There are a number of things they discuss but nothing conclusive. They may have to remove my central line as they found bacteria in it. They may have to do a liver biopsy. I had a ECHO CARDIOGRAM this afternoon. We're waiting for the skin biopsies.

There's not much more to report. Thank God the pain is not so severe and that I'm able to get up out of the bed and that I haven't had any fever again. Walking is very difficult now. The pre-existing muscle weakness, 4 days in bed and painful sores all contribute to that.

But I believe that tomorrow will be a better day and I thank you so much for your prayers. I believe in miracles.

Sunday's Update from the Hospital

Illana again here. Just wanted to give you a quick update though there's not much new to share as the doctors themselves seem a bit baffled. I'm here with Leah, Mom and David at the hospital. We are waiting for the results of many tests, cultures and biopsies. We may not have some of them until Tuesday or Wednesday. In the meantime, Leah still has the painful welts, as well as, the original abdominal pain that brought her here in the first place. But, thank G-d, she did manage to get out of bed today for the first time in four days and is now sitting semi-comfortably in a chair.

Please keep her in your thoughts and prayers and we'll do our best to keep you posted.

Love to all!

This was a REAL TOUGH ONE

This is being written by Illana. Unfortunately, Leah isn't well enough to write. It's Saturday night and I'm sitting next to Leah's bed in the hospital. On Friday afternoon, before I left the hospital and I wished Mom and Leah a Good Shabbos I told Mommy that if there were any changes she should please text me. I never thought in a million years that I would really be hearing from her on Shabbos, let alone via telephone. Anyone who knows me could imagine how I felt when my phone rang at 5:00 in the morning on Shabbos and I jumped up to hear Mommy crying saying "Come Quick, Something's wrong. They're working on her." I don't think I could ever describe how I felt at that moment. How could I get to the hospital in Manhattan on Shabbos in less than 5 minutes without getting myself killed and without being too mechalel Shabbos? Keith quickly called a taxi. No answer. Forget it. Just get into the car and drive as fast as I can. No stopping at red lights. In fact, don't bother looking at the road because can't see thru the tears and the next thought I won't even share because you'll all scream at me.

Enough about my insane 15 minute trip to Manhattan, here's the important update about Leah's health. At about 5am Leah said she had to use the bathroom. Mom and a nurse helped her because she was too weak to go by herself. On her way back to bed, she passed out and became completely unresponsive. Her blood pressure dropped to 40/20 and her oxygen level went below 50%. So, of course, the whole team came running to work on her and now you understand why Mommy called us.

Boruch Hashem, when I arrived at the hospital the situation had become more stable and David, Jacob, and Rachel were already there. Leah's blood pressure was still low, but improved as was her oxygen level. But she was still very out of it.

Here's what we're up to now. Leah has developed several lesions on her body over the last day and a half. They look somewhat like welts but they are very painful to the touch. To Leah, they feel like bad bruises, but the scans show no evidence of bleeding. Also, the MRI that they took last night showed lesions on her liver and spleen and let's not forget that the abdominal pain is what brought her in here to begin with. So, Leah's team of doctors are now thinking that these lesions, both internal and external may be a fungal infection and they are treating her as such. They also biopsied one of the lesions on her leg this evening but it will take some time to get the results. So she's now on lots of new very strong anti-fungal drugs as well as lots of new anti-biotics. She's also been receiving many units of blood and platelets on an almost constant basis as her hemoglobin level has also been very low.

So after all of this rambling, where do you, Leah's fans come in? She needs your prayers and support at this time so badly! She loves you all.

Back in the Hospital

On Wednesday afternoon, I started having some pain on my right side, right below my rib cage. It got progressively worse over the next few hours and by 10PM I was on my way to the Emergency Room at NYH.

At times, the pain was excruciating. They did CT scans, ultrasounds, xrays and there's absolutely no explanation for this pain. It's probably muscular. I did so much on Wednesday that maybe I just overdid it and pulled something.

I spent 25 hours in the ER and then got a bed last night around midnight. Dr. Schuster came in to see me this morning and, I thought he'd say "go home, there's nothing wrong" but he's keeping me because I can't take a deep breath and he said he can't send me home in this kind of pain. So, I really don't know what IS wrong. The pain is still there, although not as intense as it was at its worst. For hours yesterday I was given morphine every few hours and I spent the day in a daze. But I haven't taken any pain meds since then.

Because I was supposed to have an appointment with Dr. Schuster yesterday anyway, I got a unit of blood transfused in the ER and I got a pack of platelets here in the room overnight. I don't know how long I'll be here. I'll try to keep you posted. Thank you for all your prayers.

UPDATE: They just ordered an MRI because they think that I've got a tear in the capsule which encloses my liver. It's very painful when I move or inhale. They've got to observe me for a while to make sure I don't hemorrhage. I received a unit of blood yesterday and my hgb is just holding. I'm glad to have some kind of explanation and to know that it's not something I did wrong. For the meantime, I'm here for now.

A most productive day!

I really got a lot done today. First, I forced my sister to be my escort and dragged her around to all of the places I needed to go. I've been shopping for a Physical Therapist for my leg weakness, but until I find the right one, I decided that the best thing I can do for my legs is walk! I mean, in the house, how far can I go? I go from my bedroom to the kitchen to the living room or the bathroom and how many steps can I possibly be taking? So, I decided to do some walking and since the weather is not exactly conducive to outside walking, inside walking it is.

First stop, Costco. I got myself a wagon and walked and walked. As long as I'm holding on to the wagon it's ok and Illana and Rachel were there to help me. The more I walked the stronger my legs felt. Then we dropped Rachel off at home and went to Illana's nose doctor (she broke it a little skiing, remember? B"H she's ok). Then to CVS where I went up and down the aisles. Then Illana needed to make a return at Michael's, where I went up and down the aisles. Then on to the supermarket, where once again, I went up and down the aisles. OK, so yeah, now I'm exhausted, but I still feel better than I have. I feel like I got a lot done and that I got some much needed exercise.

I think the reduction in the evening Prednisone is letting me get a little more sleep, too. So, this is all pretty positive. I have an appointment at the hospital tomorrow at 11. My Sunshine is taking me! Hopefully I won't need any transfusions. I wonder how many non-transfusion visits will mean the removal of the catheter...or does it depend on the CBC? The nurse was just here and changed my dressing and flushed the lines. I think I'm ready for a little nap.

Thanks again for all of your prayers and good wishes.

T+70 (according to my count)

My appointment at the hospital went very well, Thank God. Since discontinuing the Valcyte, my CBC numbers have begun to rebound. (WBC=3.3 HGB=10.0 PLT=45). I didn't need any transfusions at all. I'm feeling pretty well and, except for the muscle weakness which makes it difficult for me to walk or to go from sitting to standing, can't complain. I got a prescription for physical therapy. I'll call and make an appointment later. They discontinued my evening dose of Prednisone (10mg). I'm hoping that this further reduction in the Prednisone will not only help with the muscle weakness, swollen ankles and moonface, but maybe it'll help me sleep and cut down on the appetite, too . . . still hungry all the time.

David drove me in and left at around 11 to get to work. Illana picked me up. My vision has been a little blurry so I'm not driving right now. Maybe that will clear up with the reduction of Prednisone, too. Hope so.

I didn't get much sleep last night and, anticipating that I'd need platelets, they gave me a Benadryl, so I'm kinda groggy right now. I think I'm going to take a little nap. Thank you all for your good wishes and prayers. They mean more than words can say. I hope you're all well and safe.

Sunday Morning

If you are unable to donate blood today at the Young Israel of Woodmere, there is a BLOOD DRIVE tomorrow in OCEANSIDE at the Knights of Columbus on Kenneth Place from 3:30PM - 9:00PM.

Saturday Night

Hi. I was just informed that there is an EMERGENCY BLOOD SHORTAGE and there is a BLOOD DRIVE tomorrow, that's Sunday February 1, 7:30AM-1:00PM at the YOUNG ISRAEL OF WOODMERE on Peninsula Boulevard in Woodmere. If you can give, please do. It is truly the gift of life. (And being transfusion dependent at this time, just hearing the words "blood shortage" makes me feel a little insecure). Thank you.

I am feeling a little better. I don't know if it's attributable to the reduction in Prednisone, the elimination of the Valcyte, the transfusion on Thursday, or a combination thereof ... I'd wager it's the combo. The weekend was very relaxing. David brought the stationary bike up from the basement and I've been pedaling little bits at a time and I think I feel my muscles strengthening a bit. We'll see how that goes.

Thank you for all your prayers and good wishes and for checking in on me. FYI to those who asked, my email address is:

LeahRSolomon@Gmail.com
or
LeahSol613@yahoo.com

Friday

I just had a bit of an incident. I went to CVS to pick up my prescriptions and as I was entering the store, my legs just gave out and I ended up on my knees, unable to stand up. Thankfully, two very nice (and strong) women picked me up. It was crazy and it really shook me up. I'm sure my knees will be bruised. This muscle weakness seems to be getting worse instead of better. I'm told it's the Prednisone, but if my legs are going to buckle, that's not a good thing.

Anyway, Mom is at Illana's for the weekend. Jacob's going to a friend, too. So, it's just David, Rachel and me. Sounds like a nice, quiet weekend.

Thanks for checking in and for the continued prayers and good wishes. I hope you all have a beautiful weekend and a good shabbos. Keep believing in miracles.

Thursday Afternoon

Hi. I just got back from the hospital with good news. My CMV level is low enough that I can discontinue the Valcyte for now. If you've been following along, you know that the CMV was really on my mind and I couldn't wait to stop taking the Valcyte because it was suppressing my blood counts. So, this is indeed good news!

They also got the results of the pathology reports from last week's colonoscopy. It showed no evidence of GvHD. Also good news! Which, in turn, leads to a small reduction in the amount of prednisone I'm taking. ALSO good news!

I got 1 bag of platelets and a unit of blood and I was home by 2PM. David took me today because I was nervous to drive because I'm still too shaky and my vision was a little blurry but hopefully, with the reduction in the prednisone, I'll begin to feel some improvements. (Hopefully)

I Thank God that I got such good reports today. I so appreciate those of you praying for me and sending me good thoughts and wishes. I know that my Father and my Grandmother are helping me from wherever it is they are. I hope all of you are healthy, warm and safe. Believe in Miracles.

Wednesday AM

Good Morning. Today's word for the day is P-A-T-I-E-N-C-E. I must learn what that means. I'm didn't get more than a few hours of sleep and I'm still feeling quite rundown and very shaky. I know that this is all part of the road to recovery but I have to learn to be patient and not get frustrated. It's not easy.

I'm sitting in my kitchen watching the snow come down. I was hoping to get out a little today, but I think I'll stay put. I have an appointment at the hospital tomorrow morning at 9:30. I'm not even going to try to predict what I'll need.

My catheter dressing needs to be changed today. It's supposed to be done 3x/wk. Unfortunately, my insurance company will only approve home visiting nurse once/wk. The hospital does it on a Mon/Wed/Fri schedule. So, they changed it for me Mon. I'm going to have to get Mom to come and do it today (she's done it once before). And, hopefully the visiting nurse will do it Friday, with David watching, because Mom is going back down to Florida for the winter next week. That means that David will be the only who can do it here. I can flush the lines myself, but not change the dressing. Just another thing on my mind.

I have a whole list of questions to ask to Doc tomorrow. Questions about CMV and Valcyte and GvHD. And I never got the pathology results from the colonoscopy last week. Hopefully, I'll have some more answers tomorrow.

Thanks for keeping and eye on me. I hope everyone is well and warm and safe.

Monday Evening

I'm not feeling too great today. I saw the doctor and my WBC is pretty low (2.3). My HGB is around 10 and I needed platelets. He said that the Valcyte, which I'm still taking for CMV, is suppressing my numbers but that I still need to be on it. I still have CMV, although at a very low level. If it stays where it is, we keep the Valcyte where it is. If the CMV level goes down, we can start reducing the Valcyte. But if it increases, then we have to change to a different meds. Either way, if it continues suppressing my WBC, that will have to be dealt with.

I wasn't able to sleep last night because both legs and both feet kept cramping up. I think Potassium should help and so might tonic water, so I'm drinking both.

The low WBC count explains why I don't have that energy I thought I'd have from the 2 units of blood on Thursday. Actually, I didn't really start feeling sluggish until yesterday. But today was kinda tough. I did drive to the hospital (with Mom) and Illana met us at the hospital because she had a doctor's appointment in the city as well. Keith drove her in, and I brought her home. I must not feel too bad, I guess. I did stop at the supermarket on the way home.

Hopefully, the CMV will clear up soon and I'll be able to move ahead with my recovery. I feel like I'm stalled. Also, I think I have a sore throat so I'm going to call the doctor.

I hope you're all well and safe and happy. Thank you for checking in on me. I appreciate it more than I can say.

Saturday Night/Midnight

We had a beautiful weekend, despite the fact that David is not here. (He took his dad on a quick vacation for his 80th birthday). But we were here with Illana and Keith and the girls and Mom. Rachel picked them up at the airport early Friday morning from their ski trip in Whistler. Illana had a ski accident up there and is currently in a neck brace. She's got to get some Ortho follow-up this week, but I think she'll be ok. Anyway, they came for dinner and overnight and went home this evening. Unfortunately, Keith seemed kinda sick and now I'm a little nervous about getting sick, myself. I'm so careful to avoid being in contact with anyone coughing, sneezing, etc. And he woke up this morning with a full blown sinus thing going on. I stayed away from him, but I'm still a little nervous.

The prednisone is still doing a job on me. Even though my evening dose has been lowered, it takes a while for the body to react. The shakiness is frustrating and the ankle/foot swelling is uncomfortable. I'm sleeping about 4 hours a night and trying not to nap during the day, although today I slept for a couple of hours. Also, I expected to have TONS of energy this weekend because of the blood I got on Thursday, but I'm not really feeling it. I did a lot of cooking on Friday and I felt fine. But I guess I was expecting more.

I'd due for another hospital appointment on Monday at 1. I doubt if I'll need blood, OR platelets for that matter. Hopefully, it'll be a quick visit.

Thank you so much for your continued support, prayers and good wishes.

Thursday Night

Yesterday's colonoscopy went well. The ulcer that was there from the chemo has healed and everything looks good. They don't have the biopsy results yet to confirm or rule out GVHD but Dr. Schuster thinks that it's not. I didn't need to get any additional platelets yesterday before the procedure because my count was 75. I was back today and got 2 units of blood so I'll have a full tank for the weekend. He reduced my evening dose of Prednisone a bit, too. I'm pretty tired right now. Just wanted to give a quick update. Thank God, it's good news.

Hope you're all well. Thanks for checking in.

Tuesday Afternoon

I drove to Manhattan today. Mom went with me but I had nobody to drive me so I just did it myself. It was no problem at all. In fact, it felt great -- despite the morning rush hour traffic and only 3 hours of sleep, or so. Coming home, I drove alone because Mom stayed in the City to have lunch with a friend. Again, no problem, albeit a bit drowsy from the Benadryl they gave me in the hospital. I got 2packs of platelets. All of my numbers were good, Thank God.

I'm scheduled for the colonoscopy tomorrow at 3PM (terrible time of day, I know). So today I'm on a clear liquid diet. They want my platelets to be above 50 before the procedure so I got 2 bags today. It was 27 before the transfusions and 62 afterward. They want me in at 12:30 tomorrow because platelets don't last that long (72 hrs) and they may want to give me more directly before the procedure.

I've been having real trouble with muscle weakness, especially in my thighs. Since my hospital discharge, I have great difficulty walking up or down stairs and standing from a seated position. I had assumed that it would improve with time, but it actually seems to be getting worse. I mentioned it to Joanne today, and she told me that it's normal and that it's from the Prednisone (isn't everything?). She said that I'm going to need physical therapy. First we deal with the colonoscopy, then the PT.

That's my story and I'm stickin' to it. I hope you're all well and safe and warm. Thanks for all the love & prayers.

T+56

Good morning,

I'm beginning to feel a bit sluggish today. I guess my hemoglobin is beginning to drop a bit. I will find out tomorrow. Unfortunately, a friend of mine passed away yesterday and I am going to a funeral this afternoon. I am still in shock. I don't have many details about what happened to her and I had no idea that she was so sick! (I had heard she had back problems). I'm very sad.

I'm taking a lot of different medications --- 25 pills a day. I'm not quite sure which ones have which side effects, but I'm inclined to blame everything on the Prograf and the Prednisone. Since they've increased the Prednisone for the intestinal issues, my hands tremble so much, my fingertips are cracking, I'm once again very moody, very, very puffy (think Michelin Man). Not a pretty picture.

On the bright side, my sleep is fairly good. I get a good solid 4-5 hours a night which somehow suits me fine. Funny, before the transplant, if I didn't sleep 7-8 hours, I could barely function.

I think today will be difficult because of the previously stated circumstances but Rachel and Jacob are both home and they're both so helpful and supportive. I'm a very lucky lady.

I hope you're all well and warm. Thank you so much to keeping an eye on me and for all of your prayers and good wishes for my recovery. It means more to me than I can say.

Saturday Night

I had a very nice, relaxing day at home with family today. Mom's here for the weekend. Yesterday's hospital visit went quickly and smoothly. I received one pack of platelets and was home by 12:30. Still had time to prepare for dinner. Avram and Mary Ellen came for dinner. It was very nice.

I'm feeling pretty good...Slept pretty well last night. Thank God that there's nothing sinister to report.

The visiting nurse should be here on Monday to change my dressing and flush the central line. Tuesday I have an appointment for platelet transfusion (maybe blood). Wednesday I'll probably have more platelets and then the colonoscopy. So far, that's the schedule.

I hope you're all warm, safe and healthy. Believe in miracles and pray for peace.

Thursday Night

I was feeling pretty energetic and ambitious today. I did a couple of things around the house that I've been wanting to get to. Then I cooked, and cooked some more, and cooked some more. Since I'm going to be at the hospital tomorrow for platelets again, I decided to cook for the weekend today. But, the funny thing is, I'm so totally enjoying cooking. I think it's because of my brother's stem cells. In case you don't know, my brother is a CHEF. Since I got his stem cells, I'm dying to cook. Interesting, right??

The downside to all of this productive work is that my ankles swell terribly when I'm on my feet too long. And I was definitely on my feet too long today. I know it's from the meds but it gets very uncomfortable and, although I still have some dishes to wash out, I'm laying down now with my feet up. I was also planning on showering this evening, but I'm kinda wiped out. Showering with the central line catheter is not easy. It's got to be all wrapped up and taped and completely waterproof. And the showering itself, even though I have a shower chair, is exhausting. OK. Enough complaining!

It was a pretty good day. Hospital tomorrow morning at 9. Don't know when I'll be home. I'll try to post something afterwards, but maybe not until Saturday Night.
Wishing you all good health and a beautiful weekend. Believe in miracles and pray for peace.

Wednesday Night

This has been a very full day. I was at the hospital from 9am until about 3:30pm. I got one unit of blood and platelets. Next Wednesday I'm scheduled for a colonoscopy and an endoscopy. But before they do that, they have to bring up my platelet count to reduce the chance of complication from bleeding. So, I'm going to get platelets again on Friday and then again on Tuesday.

After I got home from the hospital, Rachel and I went to the supermarket. Another milestone. It was great - A little more independence.

As I was sitting in a treatment room getting transfused, I was thinking about how lucky I was. I needed blood and there was blood to be had. It got me thinking about how amazing it is that there are people who donate blood or blood platelets or whatever. I mean, I was in one room with 8 chairs on a floor with many treatment rooms all full of chairs, full of people. And that's just one hospital in one city. So, I just want to thank all of you who DO donate blood. It's truly the gift of life!

Tuesday

Unfortunately, they can't ALL be good days, I guess. I'm not feeling so well today. My stomach has been really bothering me since last night (really since Saturday night) and so I didn't get much sleep at all. I just spoke to the doctor and I'm going tomorrow instead of Thursday. They also increased the Prednisone which is going to make me crazy.

I suppose this is just the way it's going to be for a while, good days and not as good days.

Monday Afternoon

Hi. I saw the doctor this morning. Thank God everything's good. I got platelets and I'm scheduled for more blood on Thursday. Also, he said that the CMV (virus) level has already been reduced to the point where we may be able to discontinue the Valcyte on Thursday.

I'm a bit tired because for some reason I woke up at 4:30am and that was it for the night. I may have to take a little nap today but I don't want to get into the habit of a daytime nap and then half a night's sleep. I guess I'll let my body make the decision for me. If I fall asleep, so be it.

Oh! Also, yesterday was the first time I went anywhere other than to the doctor. I went over to Mom's to go through some of my Grandmother's things. Even though I didn't drive there (Illana did) it was really a milestone. And then today, I DROVE to Bed, Bath & Beyond -- which thankfully was empty -- and picked up a couple of things. It was only for about 10 minutes, but it felt good to be a little independent. (Might also explain why I'm so tired).

Hoping this finds you all healthy, happy & warm. Believe in miracles and pray for peace.

Saturday Night

Hi. It's Saturday night and I'm thrilled to report that I'm feeling pretty well, Thank God. Last night during dinner, I started feeling strange. My lips were tingling and I just didn't feel right. Then I realized that I had forgotten to take my afternoon dose of Hydralazine (Blood Pressure Med). Wow! I couldn't believe how it affected me. So I took it and within 30-45 minutes I was feeling much better. I think maybe I'll be more diligent in the future.

I'm also pleased to report that the CMV meds that scared me so, don't seem to have any noticeable side effects as of yet.

I do notice that my face is a little puffy from the Prednisone and my ankles still swell when I'm on my feet for any significant period of time. But if I elevate them for a little while they go back to normal.

All in all, a pretty good report!

I hope you're all safe, healthy & warm on this snowy NY evening. Believe in miracles and pray for peace.

T+46

Good morning. If you happened to read yesterday's blog post, you know that I was feeling really anxious about the CMV and the treatment for it. Thanks to my friend Marsha, by the time I went to sleep last night, I was much less anxious. She's been down this road and has helped me more than words can say. Also, David (hubby) spoke to a "doctor friend" who's familiar with the virus and the treatment and also set my mind at ease. I started the new meds this morning and I'm ok with it.

Your support via comments on my blog have been so inspirational and uplifting for me. I've been able to stay positive because of you. I know many of you have asked me questions, etc. I don't have email addresses for so many of you and so it's difficult to respond. I also know that many of you do not want to write to me in a "public forum". Please, feel free to email me at leahrsolomon@gmail.com.

I'm looking forward to a relaxing, quiet weekend at home...watching snowflakes (I hope). I wish you all a beautiful, healthy, peaceful weekend.

L

New developments

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.

A slight improvement

Good morning. Just reporting that I'm feeling a slight improvement today, Thank God. I slept pretty well -- about 7 hours. The visiting nurse is scheduled to come this afternoon to change my dressing. Other than that, I'm going to take it real easy. Tomorrow morning I'm scheduled for another transfusion. Hopefully, after that, I'll be able to be a bit more productive.

Until later,
L

Home from the Hospital

When I had my bloods tested this morning (9AM) it was no surprise to me that I was anemic. I was surprised however, by how low my HGB was. It was 5.7 -- an all time low for me. It took an entire day, but I received 1 pack of platelets and 2 units of blood. I'd say that my tank's about half full because I am scheduled to get more blood on Thursday. It was crazy to let me go so long without a CBC and the doctors agreed that I have to be on a twice weekly schedule. I'm still feeling very weak and fatigued but not as short of breath as I had been. This morning, even speaking was a real effort for me. The upside is that this is normal after a stem cell transplant and that there's nothing wrong.

In fact, quite the contrary! According to the doc, Thank God 99-100% of my cells ARE MY BROTHER'S!!! This is very, very good news. Is this a miracle, or what?!

I'm going to sign off for now. Thanks for all your good wishes.

Really draggin' today

Hi. I guess I understand how vampires feel when they're thirsty. I'm very much looking forward to tomorrow when I expect to be transfused. At least I'm sleeping better, so there's a silver lining here. I've put myself pretty much on bedrest since I get out of breath so easily.

Hopefully tomorrow's post (probably late afternoon) will have more energy.

Until then,
L

T+41

Good Morning. Sorry I didn't update yesterday. I wasn't feeling very well.

I did a bit of cooking on Friday and Mom and the Bodners took care of the rest. Avram, Mary Ellen and Elliot came for Dinner. Rachel's friend walked over after dinner and then on Saturday, Gitti stopped by, The Hefters stopped by, Avram's family came for lunch. Then Sheila, Rachel's friend, Illana, Keith and Nava came. Today my father-in-law is coming. It's wonderful to see everyone and spend some time but, to be honest I'm feeling a bit overwhelmed and exhausted. At least I was able to take a small nap on Saturday afternoon and I did get a few hours of sleep last night.

To my friends and family that have been calling and requesting visitation rights, please forgive me a little while longer.

Friday night, my ankles were double their normal size. Saturday night, they were swollen as well and I was extremely fatigued and short of breath. I called the doctor on Saturday night and he felt that, depending on how badly I was feeling, I had a couple of options. I could either go to the ER and get transfused, I could wait until Monday to go to the doctor (one day earlier than my scheduled appointment), or wait until my scheduled appointment on Tuesday. So far, I'm not going to the ER. I'm going to try to hold out but if I do begin to feel worse, I would consider it.

So, for now, I'm dealing with the symptoms of the anemia. It's not unexpected. It's par for the course. Hopefully, as per my friend Marsha who has been through this, after getting transfused, once my hemoglobin is back in double-digits, I should have some energy again. I'm looking forward to it.

Wishing you all good health and peace.
xoxo
L

T+39

Good morning. I can't believe I'm almost at the 40-day post-transplant mark! Nor can I believe how much stronger I'm feeling now than I had been for years before the transplant. It's such a miracle!

I've started doing more and more around the house. No "housework" yet, per se. But I've started cooking a bit, which I enjoy. So far, I've had a lot of help with the clean-up which I truly need because by the time I finish preparing, I'm pretty wiped out. Last night's dinner turned out to be really, really nice because Mom, Illana , Keith and Nava joined us. It felt normal and comfortable and I really enjoyed it.

The visiting nurse is supposed to be coming today. Actually, she said she would call sometime yesterday to tell me what time but....I never heard from her. But, then again, it WAS New Years Day so I'm going to cut her some slack. I guess if I don't hear from her, Mom, David and I can just figure it all out ourselves. We have been trained to do it, but haven't on our own yet. It's a little frustrating for me and I am a little nervous about it, but I think it'll be okay. Adding to my anxiety is the fact that I haven't seen the doctor since Monday and am not due to see him again until Tuesday. This is the longest stretch, so far.

Mom is coming for the weekend and Avram is coming for dinner tonight. I haven't seen him in a while but I speak to him practically every day. It'll be nice to see him.

Thank you so much for your prayers and good wishes. Wishing you all a beautiful weekend. Believe in miracles. Pray for peace.

Happy 2009

Good Morning. I'm sorry I didn't post yesterday. I didn't really have anything new or exciting to report and I'd hate to be a bore.

The most oustanding issue is that MOM WENT HOME. This is a mixed blessing, of course. It was a very difficult parting for both of us. As you know, Mom has been staying with me 24/7 since this entire ordeal began. Sleeping on a sleeper sofa in the hospital for almost 5 weeks and then staying here in the house. Taking care of me like the Mommy she is. Of course, I need to try to get stronger and do more and more for myself. This goes against her instincts. She really just wants to do everything for me. So, although it's probably better for me in regaining some independence, it hurts me that she may feel like she's no longer needed. OF COURSE she's needed...just on a different scale now. In addition, a few weeks before I went into the hospital, Mom had carpal tunnel release surgery. She was scheduled for a follow up appointment while I was in the hospital and so, obviously skipped her appointment to stay with me. Now, she's having trouble with the hand and needs extensive PT to get it back into fine working order. Her doc said, "Now it's time to take care of you". Gotta agree with that. Also, I know how difficult it is for her to be alone in her apartment. I hate to think of her there alone. I think I gotta get her to move in here permanently...All important things to consider.

My sleep schedule is still out of whack. Last night, I took Ambien-CR at 10PM, hoping to be asleep by 11. At a still awake 1AM, I took a Klonopin. I'm not sure how long that took to kick in, but it must've eventually. Of course, the kids were out celebrating with friends, which isn't exactly condusive to a good night's sleep. But I did sleep some and got out of bed around 8:30.

According to doctor's orders, I've restarted taking my Tacrolimus this morning at a slightly reduced dosage. Instead of 1.5mg twice daily, I'm now taking 1.0mg twice daily. I'm expecting (but hoping not to experience) the jitteriness again.

The visiting nurse was here yesterday and changed my chatheter dressing and flushed the lines. She'll be back again on Friday but I think I may have some trouble soon as my insurance doesn't really want to continue paying for home care. May have to start an appeal process. I think I have until 1/15 to deal with it.

My next appointment with the doc is on Tuesday at 9AM. He's scheduled me to get 2 units blood transfused and I think platelets too. So, I am prepared to spend a good part of the day there.

I'm hoping everyone enjoyed a safe New Years Eve celebration and and wishing you all a happy, healthy, and peaceful New Year.