New Years Eve

Well, Mom saw the doctor on Monday. Thank God she got a good report and the go-ahead for travel. Her car was picked up and Monday afternoon and she flew down to Ft. Lauderdale on Wednesday afternoon to spend her first night in her new apartment in Century Village in Deerfield Beach. I suspect it will take a few nights to get used to her new surroundings in order to get a good nights sleep. But she is surrounded by friends who really care about her and I know she'll be ok.

Other than that, everything is status quo. Tonight is New Years Eve and David and I are going to a party. Thank you Shana & David for inviting us. We're really looking forward to it.

I'm feeling well, thank God. Small rash on my hand, still. I'm going to see Dr. Schuster on Tuesday. I don't know whether or not he'll want to reduce my Prednisone yet. Maybe he'll want to wait for this rash to clear up. Either way, I just hope I don't have to INCREASE the dose. I'd really love to be finished with it. I know...Patience.

I want to wish you all a happy & healthy new year. Personally, this past one was kinda rough for me so I'm looking forward to good times, good health. Thank you all for keeping up with me on this sometimes bumpy ride and for your continued prayers and good wishes. Let's hope that this new year brings us and those we love all good things. Believe in Miracles!

Finally Florida Bound!

Well, Mom got the go-ahead from her doctor this morning at her post-op follow-up visit. Her car will be shipped this afternoon and she is going to be flying down on Wednesday. I'm disappointed that our road trip has been cancelled but I understand how anxious she is to get down there. Hopefully, I'll go down and visit in a few weeks.

I've been doing pretty good. I still have a rash on my hands but other than that, it's ok. I've got another appointment to see Dr. Schuster on 1/5.

Thank God Mom had a good report and I'm feeling better and thank you all for your good wishes & prayers. Believe in Miracles!

Signs of Improvement

The last couple of days have brought some signs of improvement. I am less tired, fewer aches, the rash on my hand seems to be letting up and my eyes aren't bothering me as much. Thank God, maybe the worst is over?

I've been getting these little clear fluid-filled blisters in my mouth after I eat. They usually last for about 1/2 hour to an hour and then they disappear. I went to show them to an oral surgeon yesterday and he thinks that they're just from clogged salivary ducts, maybe from trauma, and that they'll probably just go away. The only thing I don't understand is why I'm getting them all of the sudden and why they are appearing on both sides of my mouth -- sometimes the right, sometimes the left, sometimes both simulatneously and sometimes not at all. I'll keep an eye on it an if it doesn't go away, I'll let Dr. Schuster know about it.

Mom has been feeling better and stronger. She's got a follow-up with the surgeon on 12/4, but she's trying to get in to see him sooner. I've got my next appointment on 12/5. If all goes well, we're hoping to go to Florida on 12/10.

Illana is still having trouble with her shoulder but she's been seeing a new doctor and has had some relief. She'd been going for physical therapy but saw no improvement. Tomorrow, she starts seeing an occupational theraist who specialiizes in the upper extremeties. We're optimistic & praying for her.

Thank God David and the kids are doing alright. Rachel's "friend" is here from L.A. Jacob will be going up to Connecticut to visit his "friend" this weekend. I've got relatives from Israel staying here for a couple of weeks. It's all good.

Thanks for checking in and for all of your thoughts, prayers and good wishes. Believe in Miracles!

Trying to De-Prednisone

Hi. I'm frustrated. I've been on Prednisone for months and months and we've been trying to wean me off. My first attempt was met with headaches, nausea and aches & pains. So we went back up on the dose and decided to try again in a little while.

The second attempt was met with really bad muscle and joint pain and fatigue and so we upped the dose and decided to try again in a little while.

Now we're trying again. I've got muscle and joint pain, though not as bad as last time, fatigue and I think I've got a rash on my hands and chest and neck. Also, my eyes, which have been so much better lately, have started bothering me again. I'm very eager to get off of the Prednisone but I just don't know how!

I'm not scheduled to see Dr. Schuster again for another three weeks. I guess I'm going to have to call him though to see if I should just "tough it out" or not. I'm leaning toward "toughing it out" as long as it doesn't pose any real danger.

I'm trying to be there for Mom but really all I want to do is stay in bed and watch old movies.

OK, so now I've vented a bit and you know what's going on. Will update again when there's news.

Thanks for being there. Believe in Miracles!

Mom's surgery update

Mom underwent laproscopic surgery yesterday at Lenox Hill Hospital. She had her ovaries and fallopian tubes removed and a D&C. Thank God the pathology was benign. She was in and out on the same day and is recuperating at my house.

David's working too hard and is exhausted. I guess we've got to plan a trip away, somewhere warm and relaxing.

My nephew Justin in Florida and his wife Noke were blessed with a new baby boy last week. He was over 10 lbs and his name is Julian. Welcome, Julian!

The kids are finishing up their semesters at Queens College and are now doing their papers and studying for finals.

Illana has been suffering terribly. She had shoulder surgery over a month ago but is not only still in pain, but is in more pain than ever. She's been going to physical therapy which doesn't seem to be working and just started acupuncture. Hopefully, she'll get some relief. We'll be praying for her.

Happy Chanukah to my Jewish friends, Merry & meaningful Christmas to my Christian friends and all the best of the season to those who fall into other categories. Thank you so much for your prayers and good wishes. Believe in miracles!

Sunday Update

As long as I'm in bed with a nasty cold, I'll update you on the situation with Mom.

She went for the sonogram and histogram. The sonogram went fine but the histogram turned out to be quite a fiasco. They tried to do it and she was in excruciating pain and they weren't successful. They told her that they'd try again, and she just said "no way" and got up and left.

The gynecologist oncologist had gotten in touch with her and said that he'd like to do a D&C and he scheduled it for December 7. After seeing the films of the sonogram, he said that he'd like to remove her ovary and fallopian tubes. Now, this is where it gets a little confusing. He scheduled her for laproscopic surgery to remove the ovaries and fallopian tubes on the 17th of December. They will check the pathology in the OR and if needed, they'll also remove her uterus. For some reason, however they can't do that laproscopically and it might require abdominal surgery.

I'd like to get more infomration. First of all, why did he initially want to do a D&C? Also, if needed, why can't he do a hyterectomy laproscopically? I'd like her to get a second opinion.

I got the name of a gynecologist oncologist from Dr. Schuster at NY Hospital. Mom got all of her films and reports and brought them to his office. His secretary then presented her case to him and then called and said they'd see her but not until the 28th. OK, now what?? Does she have the surgery on the 17th or wait and see this other guy on the 28th? Also, she's really, really anxious to get down to Florida. Her health, of course, has to come first, but I'm afraid that in her eagerness to travel south, she's going to do the fastest thing and not necessarily the best thing.

OK, so that's where we are. Obviiously a sticky predicament. I'm going to try to get more information from the docs and from various friends and I welcome those of you to please chime in if you've something that might help.

Thank you again for you checking in on us. I appreciate all of you good wishes and prayers. Believe in Miracles!

Speechless, for once

WOW! I'm on such a high. Last night, after watching the New York Jets lose yet again, I got dressed to meet some friends of ours for dinner. I haven't seen this couple in a while and I was looking forward to it. We were supposed to meet at the restaurant at 6:30. David and I walked in and the restaurant was very crowded. I was worried because I know that WE didn't make a reservation and I didn't know whether or not our friends did, either.

After fumbling for a few seconds at the door, I glanced around and saw my mother and my sister at a long table. OMG!! My brother, my daughter, my friends, my aunt & uncle (my son and gf Yasmine arrived a little later)! It was a surprise party for me to celebrate my one year New Birthday. Was I surprised? That's an understatement. But wait...it gets even better.

My sister tells me that she has Marsha on the phone from Florida. Anyone reading this is undoubtedly familiar with Marsha. Anyway, Illana tells me that Marsha's on the phone and is so sorry she wasn't able to be with us. She doesn't fly and she feels so bad that she's missing this celebration. I start to weep -- well, honestly -- I was kinda crying all along. So, I say that I love her and that, as per her suggestion, we're going to all go on a cruise together. So a second later...Marsha and her husband come out from behind the corner. OMG!!! I thought I would die of happiness! We just wrapped our arms around one another and cried and cried and cried, well, you get the idea.


Needless to say, it was the most fabulous evening. Once again, I want to thank those of you who have been praying for me and keeping me in their thoughts for the past year. To those of you who have commented on this blog and those of you who read the blog but chose not to comment or have written to me privately, you have helped me more than you can imagine. The tons of love and support that I got from you gave me the strength to keep on keepin' on.

Thank you! Thank you! Thank you!
Believe in Miracles!

More info on Mom

Mom saw the Gynecologic Oncologist on Monday. Thank God the sample he took came back negative. There's still a question on whether or not she needs a D&C and they want to get a closer look at one of her ovaries so she's scheduled for a histogram and a sonogram later this month. Hopefully, then we can put this all to rest.

Thankfully, she's feeling well and looking forward to getting down to Florida as soon as possible. In fact, she and my sister flew down yesterday evening to take a look at a couple of apartments. She's been thinking of moving to a different community. They'll be coming back this afternoon.

Besides that, I'm celebrating my new birthday. Last November 17th, I went into the hospital and after a week of chemo, had my tranplant on the 24th. Thanksgiving is REALLY a time for Thanks Giving. It's truly amazing and miraculous! I can't believe how far I've come and how lucky I am to have the brother/hero that I have and to be surrounded by such supportive family and friends.

Thank God I've been feeling pretty good. Although I'm still achey and fatigued from the Prednisone reduction. I'm down to 2.5mg twice a week. Hopefully, I'll be off it soon and able to get some of my energy back.

Thank you for checking in and for sticking by me and for all of your good thoughts and prayers. Believe in Miracles!

Update on Mom (without much info)

Mom went to see the Gynecologic Oncologist today. His name is Dr. Thomas Lallas and he's at Lenox Hill. He did an exam and tried to get a sample of endometrial tissue. He's not sure if he was 100% successful and won't know for about a week. At that time, IF he was able to obtain endometrial tissue, he'll be able to tell us whether or not it's benign. If it turns out that the tissue sample was NOT endometrial, he'll have to do a saline hysteroscopy. He thinks that it's unlikely that it's malignant but needs to rule it out. For now, we just wait. I think that Mom is less anxious about the situation since speaking to him. He seemed to reassure her.

We're very grateful that is appears to be pretty innocuous and are looking forward to getting a clean bill of health and taking to the road.

I will update as I get information.

Thanks for checking in and for your thoughts and prayers.
Mom's Hebrew name is Yehudis Chana bat Sara Rivka.

November 2

It's been a while since I've posted. Thank God I've been doing well for the most part. I'm still feeling tired but I think that that's a normal part of this process.

Mom has had some issues that need to be taken care of. She and I were planning on driving down to Florida in her car and then I was supposed to fly back home alone. She wanted to get all of her "doctoring" out of the way before heading down south. Unfortunately, something showed up on one of her sonograms and needed further investigating. After a CT and an MRI, she now has to see a gyn/onc. Obviously, we're praying that it's nothing bad, but we're checking it out. We had planned on leaving yesterday so we're just in a holding pattern right now.

Mom's making an appointment to see the doc asap. I'll keep you updated with any information.

Thanks for checking in and for your continued thoughts and prayers. Believe in Miracles!

Update

I saw the doctor on Monday. Thank God my numbers are ok. My blood pressure was too high and so he increased my Vasotec from 5mg to 10mg daily. I'm no longer taking Norvasc nor hydralazine. He reduced my Prednisone from 5mg to 2.5mg daily. He gave me the go-ahead to fly (wearing a mask) and said it's ok to go to theatres, shows, concerts, etc. I've been feeling pretty good and have started walking on the boardwalk -- not too far, but I'm enjoying it.

Mom is still staying with me and will probably be going back to her apartment on Sunday night or Monday morning, after the holidays. Right now she's with Illana and Nava in Lancaster, PA visiting the chocolate factory at Hershey, the Crayola factory and the Amish Country. They went yesterday and are expected back some time today.

We've been having some beautiful autumn weather. It's much more comfortable for me than the summer was. Since my transplant, I really haven't been able to tolerate the sun or the heat. Dr. Schuster said that it's normal and will take time. Walking on the boardwalk now is really a pleasure.

David will be going down to Florida on Monday to see the Jets play the Dolphins on Monday Night Football. I gotta admit that I'm a little jealous, especially now that I can fly. But he's going with his Dad and going to be spending time with his brother and the plans have already been made. I'm hoping to go down to Tampa when the Bucs play the Jets in December.

Everthing else is ok and I can't believe that it's been almost a year. I've come so far! I'm still somewhat immuno-compromised and I don't eat raw fruits or veggies (except at home after I scrub them), stay away from construction, soil, plants, etc. I still have some way to go. I'm so grateful to my friends and family and those who have been with me, praying for my recovery and sending good thoughts and wishes. Thank you so much. Believe in Miracles!!

HAPPY BIRTHDAY RACHEL!!!

Today is Rachel's 21st Birthday. My baby girl is 21. Unbelievable. I am so grateful and I thank God every day for her. She is truly such a blessing.

This morning, Illana called and said that I should tell Rachel not to leave to school yet because Illana wants to stop by and give her a birthday kiss. So Illana walks in, gives Rachel a kiss and then tells me that she has a surprise for me. In walks Mom!!! I couldn't believe it. She wasn't scheduled to return from Israel until the 5th of October. I was so happy. It's Rachel's birthday but, for sure, I got the best present. Mom's going to be staying here with us at our house because her apartment's being painted.

We went to Illana and Keith's for the first day of Rosh Hashanah and then we had 21 people here for the second day. I did a lot of cooking and was pretty tired but I was able to relax and enjoy. The weather was perfect and it was an amazingly pleasant day. I think everyone had a really nice time.

I had a pretty bad cold for a couple of days, but I'm much better now. Thank God I'm feeling well and so is Mom -- except for her knee. It's been hurting her and we're going to check it out. I'll keep you posted on that.

My next appointment at the hospital isn't until 10/5. We're getting close to my ONE YEAR ANNIVERSARY!! Unfortunately, that means lots of tests, including another Bone Marrow Biopsy (I think). They told me there'd by lots of tests, I'm just assuming that a BMB is one of them. Once again, I'm not looking forward to that and I'm going to insist on being "put out" for it. I'm not going to worry about it, either way.

Thank you again for following along. Thanks for all of your prayers and good wishes. Wishing all of my Jewish friends a happy, healthy & wondrous new year. Believe in Miracles!

Before Rosh Hashanah

Well, Mom is in Israel. She left last Monday. My cousin is getting married there next Monday. This is the first time I'm going to be missing one of my cousins weddings but I'm not allowed to fly yet. So, I'm sad because I really, REALLY miss my mother and because I'm missing my cousin Ayala's wedding. I'm grateful, though, that she was feeling well enough to go and that the doctor gave her the "green light."

I saw Dr. Schuster yesterday. Thank God my counts were good. He reduced my Prednisone to 5 mg./day and discontinued the Hydralazine. I had been taking the Hydralazine 4x a day, so it really makes a difference in my life. Now I'm only taking pills at breakfast and dinner (and bedtime if I need something to sleep). I'm still taking the Vasotec for my BP. I had called his office last week because my chest felt somewhat congested and I was starting to cough stuff up. To be on the safe side, they put me on antibiotics for 5 days. I finished the course on Monday and I've been feeling better, Thank God.

Oh, AND I fainted again when they drew my blood. I can't believe it. After all I've been through, blood tests make me faint?? It's a little embarassing, but there's nothing I can do about it, however hard I try to stop it from happening. It's very frustrating.

My next appointment is not until October 5 -- almost 3 weeks.

I've started doing yarnwork again. I finished a few projects that were already in progress. I finished a knitted baby blanket, a crocheted afghan and I'm almost done with a knitted sweater. I'd like to get these done before I start something new -- I know, out of character for me. I can only work for a short while before my eyes start to bother me, but I put drops in and then I can work for another short while.

Tomorrow I will start preparing for the holiday. I think that David and I and the kids will be having dinner here alone on Friday night. We'll probably all be at Illana and Keith's on Saturday and then everyone will come here on Sunday. I'm not looking forward to celebrating Rosh Hashanah without my Mom here. It's going to be difficult. She's not planning on coming home until after Yom Kippur but I don't think that I'm going to let her stay away that long. I just miss her so much! I'm going to call her tomorrow and ask her if she'd cut her trip a bit short. I mean, really!!

I think that you're pretty much up to day now. I want to wish you all a very happy and very healthy new year. Take notice of and appreciate the wonder all around you. Believe in Miracles!!

Labor Day Update

Mom saw Dr. Levine on Wednesday. The newer, better MRI didn't really show anything new but confirmed what he already suspected. He believes she had TRANSIENT GLOBAL AMNESIA. They don't really know what causes it but if you Google it, as I did, it does sound like she had a textbook case of it. We pray it was a one-time event and that it won't recur.

She has a CAVERNOUS ANGIOMA which may have been there her entire life...or not. Once again, nobody knows. He thinks that she should have another MRI in a year to see if there are any changes to it, but otherwise to leave it alone.

She also has a benign tumor on the 8th cranial nerve (Acoustic) also known as a VESTIBULAR SCHWANNOMA. Mom has been wearing hearing aids for a couple of years now, but the doctor said that her hearing loss is probably caused by this tumor and is not age-related. He wants her to see an Acoutical Tumor Specialist. Removing it might improve her hearing significantly. But it may be one of those brain surgeries in which they have to "crack your coconut", as he said. So, unless the tumor grows and she, God forbid starts having other symptoms, we're probably going to wait and see. We WILL make an appointment with the specialist, though.

Thank God, I've been feeling pretty well. I have been having headaches for the last week of so but I'm hoping that they're from the weather or the meds or whatever... I dunno. I'm still on 15mg. prednisone daily. I have an appointment at the hospital on Tuesday (tomorrow). I have a real fear of the Swine Flu now that it's getting cooler and the kids are back in school. I feel like I want to lock myself in my house until the spring. There's a bottle of hand sanitizer near the front door and we're all using it as soon as we enter the house. I'm also washing my hands A LOT. What's meant to be will be.

Thanks for thinking of me and for your prayers and good wishes. Believe in Miracles!!

Friday Afternoon

Mom ended up not seeing the neurologist on Tuesday. I saw Dr. Schuster at 9:00AM and was finished before 10. Mom's appointment was scheduled for 2:45. Instead of trying to "kill 4 hours," she decided that she'd rather see a neurologist at Mt. Sinai that she'd already met with my sister and with whom she's already discussed her case. He's also already seen her films of the CT and the MRI that were done at South Nassau. After seeing the tests, he said that he'd like her to have another MRI because the quality of the first one was very poor. Also, he'd like to compare the two. She called him and got a prescription for the new MRI and she went with Illana yesterday morning and had it done. She has an appointment scheduled with him on Wednesday.

As far as we know, it appears that what she had was Transient Global Amnesia, a form of TIA (Transient Ischemic Accident). If that is indeed the case -- if, in fact there was NO BLEED, as they initially thought -- then she can go back to her usual aspirin/day and drive again and get back to her usual routine. As of now, she's still staying here at my house and really hasn't been driving (I think she did once).
Hopefully, whatever it was is over and gone and will never recur. Thank God she's been feeling well and looks as beautiful as ever.

My visit with the Dr. went well, too. My numbers were good, Thank God.

Thank you for following and for caring and for your prayers and good thoughts. Have a wonderful weekend. Keep believing in miracles!!

Thursday Update

B"H Mom came home from the hospital on Tuesday afternoon and is staying here with me. She's feeling well and looking well, Thank God. Her EEG was unremarkable and we will be taking all of the test results with us when we see the neurologist at New York Hospital on Tuesday. She played Mah Jong yesterday and is having her hair done, "as we speak." Please keep her in your prayers -- Yehudis Chana bas Sara Rivka.

Thanks for checking in. Believe in Miracles!

Monday News

Ok,there are actually things to report. First and foremost, Mom is in the hospital. Saturday morning she had an "episode" which we and the doctors thought was a mild stroke. Normally, on Saturday mornings, she would be waking up in either my or Illana & Keith's house. This past weekend, however we all had dinner at Illana's and because Illana's air conditioning wasn't working, she walked home after dinner and was planning on coming back to Illana's for lunch on Saturday.

Saturday morning my telephone rang and it was Mom's Caller ID. David answered the phone and it was Mom and she was very, very confused. She didn't realize it was Saturday and she didn't remember eating at Illana's and didn't remember going home. It was very frightening. David and I rushed over there and called the ambulance. She was walking and talking normally and had no outward appearance of any problem whatsoever. She just kept asking the same questions over and over and didn't know the year or who the president was.

They took her by ambulance to the ER where she had a CT scan. They said that she had a very small bleed and by Saturday night she had her memory back. The only thing she didn't (and still doesn't) remember was the actual episode on Saturday morning.

Since then, she has had another CT scan, and MRI and an MRA. Today, the doctor said that it appears that there was no bleed at all. What they saw on the CT and initially thought was a bleed is actually a CAVERNOUS ANGIOMA. They said it's something she may have had her whole life and that it was not responsible for her symptoms. Now they're saying that she may have had a seizure. They've ordered an EEG and we're waiting for that now.

Thank God she's feeling well. She looks great. She's out of bed. She said that she feels fine. Still, there's no explanation for what happened and we hope that we'll be able to get some answers soon.

I have an appointment at NY Hospital tomorrow morning and I'm going to ask Dr. Schuster to recommend a Neurologist.

I saw Dr. Schuster last week and thank God my numbers were really good -- WBC 6.8, HGB 11.2, PLT 135. They gave me my Benadryl but about halfway through the Pentamidine I fainted again. Dr. Schuster said "No more Pentamidine." I'm sure we'll discuss it further tomorrow.

I'm still taking the Prednisone. In fact, he increased my dose back up to 20mg/day on Friday because I was feeling nauseous and headachy again. Actually, I'm still feeling a little nauseous and headachy, but it's on and off...just not constant. My eyes are pretty much the same as they've been.

I think that's it for now (it's enough!). Thanks for checking in. We all appreciate your thoughts and prayers. Mom's name is Yehudis Chana bas Sara Rivka. Believe in Miracles!

Thursday

I went back to the hospital on Tuesday for a visit with Dr. Schuster. Because of the previous week's "fiasco" he wanted to see me in one week, instead of the usual two. Thank God, all went well. My counts were better -- WBC 3.6, HGB 10.4, PLT 129. There was none of that silly fainting nonsense.

I have my regular appointment scheduled for next Tuesday when I will get my Benadryl/Pentamidine. Dr. Schuster reduced the dosage on the Prednisone from 20mg. to 15mg. daily. I'm still feeling tired, even though my HGB is in double digits. He said it's from the GvH.

My eyes are still driving me a little crazy and I have an appointment with the eye doctor this afternoon.

Thankfully, there's not much more to report. I can't believe I've passed the 8-month mark! I feel truly blessed and I know that I'm well on my way to a full recovery and to feeling well again. Thank you for sticking with me through it all and for your good wishes, thoughts and prayers. Believe in Miracles!!

Tuesday Morning Update

Yesterday's hospital visit was interesting. For about a week and a half, I haven't been feeling very well. I've been nauseaus, headachey and have had less energy than I had before. So on Friday I called the doc's office and moved my appointment up from Wednesday to Monday (yesterday). My first stop was the Treatment Center where they draw blood for the CBC. When the nurse put the needle in, I fainted. After all I've been through, after gazillions of needles...I don't understand it. When I came to, he took my blood and I went to see my doctor.

Dr. Schuster didn't seem overly concerned about my having passed out. And he said that the nausea and other symptoms are a "classic GVH flare-up." Since I discontinuted the Tacrolimus two weeks ago, this is not unexpected. Unfortunately, he put me back on 20mg/day of Prednisone. He believes that it should be short term. I took my first one this morning. He also told me to discontinue another of my meds, the Actigall. Slowly, slowly the list of my meds is getting shorter.

My CBC results were mixed -- WBC 3.2, HGB 8.3, PLT 120. Dr. Schuster said I should come in next week instead of the usual two weeks because I'd probably need blood. I haven't needed a transfusion since the day of my last hospital discharge in April so this has been quite a long stretch!

After seeing the doctor, back to the Treatment Center I go for my Benadryl/Pentamidine. They gave me the Benadryl IV and then, about 10 minutes into the Pentamidine I fainted again. My BP dropped to 90/50. They paged Dr. Schuster and he told them to give me fluids, finish the Pentamidine and then to give me a unit of blood. So it turned out to be a whole day affair. We (Mom & I) were there from 11 to 6.

So far, so good. It's Tuesday morning and I haven't fainted again so hopefully it was from the anemia. Dr. Schuster said I should keep my appointment for next Tuesday anyway. I'll update my blog after that visit.

Thank you for checking in and for all your thoughts and prayers. Believe in miracles!!

Tuesday's appointment

I had my appointment at the hospital today. Thank God (B"H) my counts were very good. WBC 4.5, HGB 10.0, PLT 118. These are very good numbers, especially my HGB which is finally going up on its own, without transfusions. I also had my 50 mg. of Benadryl and the Pentamidine and spent most of this day napping.

As of today, I am no longer taking Prograf (the immuno-suppresant) and we've also discontinued the Entocort (protects the lower GI tract). More major milestones.

My eyes are still bothering me but there may be some small improvement. I've decided to try the steroid eyedrops again and, although I don't really feel much of a difference, more than one person has mentioned that my eyes are looking better. So, I'm gong to continue using them for a while and see how it goes.

I've been feeling very well, thank God. I've been doing a lot of bicycle riding and walking and spending very little time sitting around, watching TV, napping, etc. (except for today).

Thank you for checking in and for your continued prayers and good wishes. Believe in Miracles!

Tuesday Afternoon Update

I know I haven't posted in a while. Thank God (B"H) I'm doing well and there's really not much to report. My eyes are still pretty bad but we're working on it. I saw Dr. Schuster yesterday. My HGB, which was 8.7 two weeks ago, is now 9.7 on it's own, going up without a transfusion. That's amazing! The eye doctor suggested trying new drops. I'm giving it a try but I'm not too hopeful. Dr. Schuster said that maybe photopheresis will help. I'd love to NOT have to resort to that but we'll just have to wait and see.

I'm down to 1/4 the amount of Prograf (Tacrolimus) that I had been on. He also reduced the amount of Norvasc by 1/2, so hopefully the swelling it causes will diminish.

Tomorrow is David and my 25th wedding anniversary. We're going to spend a few days away together. I don't expect to post again here for a couple of weeks, maybe ... after my next appointment. At least, I hope not. I'd love to continue uneventfully and boringly.

Thanks to those of you still checking in. And for your continued prayers and good wishes. Believe in Miracles! They're happening all around us all, every minute of every day!

Monday Morning Update

Sorry I haven't posted in a while. Everything's going well, thank God. I'm going for a CBC today locally to see how my hemoglobin is doing. . . to see whether I can hold out until my appointment next Monday or if I'll have to go in this week for a transfusion. This is the longest I've gone without one. I kinda thought that the whole tranfusion thing was over. Wishful thinking, I guess.

I haven't heard any bone marrow biopsy pathology results. Nor have I heard anything from the dermatologist about the skin biopsies. I'm scheduled to go back to the dermatologist tomorrow for the suture removal but I don't think I'm going to make a special trip just for that. If I have to go in for a transfusion, then obviously I'll do both. But if I don't need to go in for blood, I'm going to a) call the dermatologist and see if the suture removal can wait until next Monday or b) have a friend remove the sutures here at home. Either way's ok with me.

I don't have too much to report. Just wanted to leave a quick update so my bestest friends/fans don't get too angry with me! Thank you again for being there.

Tuesday Morning

I saw the doctor yesterday. My count were ok. My hemaglobin is a little low (8.7) and so he wants me to have a CBC locally next week to see if I may need some blood before my next regular appointment in 2 weeks. My platelet count is 99 and my WBCs are good. We don't have the bone marrow biopsy report yet, but what we do know is that my marrow is 100% Avram's!

I've had a purple splotchy rash on my chest and on one shoulder. I showed it to him two weeks ago and he didn't think much of it. I showed it to him again yesterday and I guess the fact that it's increasing made an impression. He sent me for a dermatologic consult. The dermatologist did a biopsy. Hopefully, it's nothing but I should have results by next week. I also have to go see the dermatologist again on Tuesday for suture removal. (Never a dull moment).

At my last visit two weeks ago, we reduced the evening dose of the Prograf (Tacrolimus) by half. As of today, I reduced the morning dose by half, as well. I'm a little worried about the possibility of GVHD flare-ups. I'll just continue to keep my eyes open for any changes.

Rachel and I had a really nice time last week. We each had a massage and a facial and then we watched the NBA Finals at Michael Jordan's 23 SportsCafe at Mohegan Sun. Rachel really enjoyed that. It was a good time.

Overall, I've been feeling well, thank God. I've been trying to stay active, trying to ride my bicycle daily. Yesterday didn't happen because I was in my Benadryl haze, having received Pentamidine again. As soon as I'm completely off the Prograf, we can start taking me off all the other stuff. I can't even imagine not taking a handful of pills numerous times a day. It seems like my way of life. I wouldn't mind getting used to a different way, though.

Thank you for checking in. I hope everything is going well in your world. Where would I be without your support? Thank you so much for your prayers. Believe in Miracles!

Wednesday

Yesterday's bone marrow biopsy went well, Thank God. I was sedated for the procedure so I didn't feel a thing. I was very sore yesterday afternoon and evening but I'm feeling much better today. I didn't get the results yet but I'm assuming (hoping) that they'll have them by Monday's appointment.

Rachel and I are going to go away this afternoon for two nights at a spa in Connecticut. I'm really looking forward to spending this time with her, not to mention the spa treatments! I cherish experiences like these. I'll have to find something special to do with Jacob next time. Any suggestions?

My eyes are still bothering me but Dr. Schuster seems pretty sure that they're improving. Also, my feet and ankles are swelling very easily these days. Bita (PA) told me that it's most likely a side effect from the Norvasc that I'm taking for hypertension. The hypertension is a side effect of the Tacrolimus (Prograf) which we just started reducing. Hopefully, the reduction of the Prograf will get rid of the hypertension, thereby eliminating the need for the Norvasc, thereby eliminating the foot/ankle swelling. You following??

Other than that, my hair is growing a little. I'm still kinda fuzzy on top but it's definitely coming in. I'm feeling stronger and stronger every day. I'm so lucky to be surrounded by such loving and caring friends and family. Thank you all for being there and for your continued prayers.

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.