Saturday Night

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

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

Pray for us all.

Thursday Afternoon

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

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

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

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

Wednesday

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

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

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

Greetings from home :)

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

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

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

GOING HOME!

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

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

Sunday Evening

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

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

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

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

Saturday Night

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

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

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

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

Friday Afternoon

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

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

T+87

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

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

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

Update

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

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

More updates as I get 'em.

The "H" Word

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

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

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

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

Tuesday Afternoon

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

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

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

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

*Illana

Presidents Day

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

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

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

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

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

Sunday Evening -- Stay the course

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

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

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

Saturday Night

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

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

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

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

Friday Afternoon

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

Wishing you all a wonderful Shabbos.

Thursday Evening

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

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

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

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

Wednesday Afternoon

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

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

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

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

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

Finally some answers

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

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

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

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

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

Monday evening

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

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

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

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

Sunday's Update from the Hospital

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

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

Love to all!

This was a REAL TOUGH ONE

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

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

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

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

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

Back in the Hospital

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

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

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

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

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

A most productive day!

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

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

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

Thanks again for all of your prayers and good wishes.

T+70 (according to my count)

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

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

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

Sunday Morning

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