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.