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Only one s, only one s.....
Whilst Jini still recuperates, she has given me permission to post for her! She still has some palsy from her medications and has trouble typing...only one s...

Duane and I went to see her yesterday afternoon. After a drive viewing wildflowers, a wonderful time of year in Bakersfield, we dropped in to see the folks and Jini. I had not seen her since a week after her surgery when she was still on the touch and go list, so it was refreshing to see 'ole Jini' sitting in THEE Rocking chair, chatting with us. She looks great!! And sharp and witty as ever! With good DR reports and progress she continues to get stronger and I'm sure, soon will be running the New York Marathon! Well, maybe walk through Target without needing to sleep for a few hours to recoup!! Thank you all for your many prayers for her and Mom and Mac! Please continue to pray, she still has a long way to go to be back to her obnoxious self, though she's close now!

UCLA Journal 15

Good morning, one and all. I'm writing this at 7:30 am. YES, I slept through last night!!!! Sorry to all of you who were waiting with baited breath for the next "Mac and Jini" installment. But sleeping through all nite.....

We have GREAT news to report on the Mac saga. He's HOME. I got a phone call from Mom last night about 5:30 last night and answered with how early she was calling from home for a change and Mac's voice said it was nice to call from home. I can't believe they sent him home so soon!!! As far as I know, he hadn't even walked before they sent him home but Mom says other than having a little trouble getting up and down (well, duh...) he's doing great. He never even asked for a pain pill yesterday. Wish I could say the same.

Now me. I'm doing lots better. I even walked FOUR times yesterday and the last one was half again as far as I normally go. I got ANOTHER doggie visit yesterday - Sydney, the blue aussie. And yesterday afternoon, one of the nurses came up to me and said she was sorry about my heart. I got a puzzled look on my face and she said they'd had an O negitive heart become available but it was too small for me. It shows they're looking. Thank you Lord. That's all the news and my breakfast is here. So, 'til next time....

Jini

UCLA Journal 14

Good morning to all of you out there. I don't know why, but it seems the only time I feel like writing this is the middle of the night. It's now 2 am. Why am I awake at this time you may ask. The answer, other than using the facilities, is, "beats me....."

OK. Let's start at the top and work down. Mac. Mom didn't have too much info yesterday. When she came home, the surgeon still hadn't been by. Janet was staying to see him when he got there and would call Mom with what he had to say. As of 10 pm. last night, Janet still hadn't called. Doctor probably didn't get there 'til late and she didn't want to wake Mom up. So we're going by what info Mom did have.

Mac was up again sitting in a chair. (My nurses say "Yeah for our side" about that) He still hasn't walked. The house doctor was in yesterday morning and said he was doing so well, they might send him home today. Without walking, I don't think so. Mac said he thinks thursday but I don't think it'll happen 'til friday. OK ladies and gentlemen, let's lay our bets....


Mac had lots of visitors. Lori and Scott were by as was Jennifer and the girls. Mac's old golf buddies have gotten the news, so they've been on the phone to him too.

Now, ME. I've had lots of good news. Venting to your nurse who has you vent to the assistant gal in charge of the program really works. The doctors all STAYED more than 30 seconds and LISTENED to what I had to say. Also got a visit from Dr. Morigouchi (the infamous) who, when I stood up for myself and told him he had really upset me, gave me a profound apology. The biggest "reward" I got was they've RE-LISTED me. That's right. I'm now on the list as a 1A. That's the highest you can get on the transplant list. And not only that, I'm the ONLY 1A on the floor. That means that the next O negative heart of the right size to come in is MINE.

Thank you, Lord. I know He works in his own way and time. I just get frustrated when his time and my time don't alway "march in step". But he's never let me down. I just have to remember that. "Our only hope here below is help from God above."

Mac and I both thank you for all your thoughts and prayers. They are doing so much good in our lives right now. May He do as good for you.....

Jini

P.S. I got my first and second doggie visits since I've been out of ICU today. Zeke, the 13 year old mixed breed who I seen a couple times before, and Abby, the golden who was a first for me. I just LOVE doggie visits.

UCLA Journal 13

First, Thank You Sis. I love the pics you sent me. Just how big is that truck, anyway?


OK. Mac first. The news I got from Mom last night was all good. Mac had a very good day, sitting up in a chair for several hours and a visit from Bill and Audrey. Mom said after they left, he watched TV - with his eyes closed. The news from the surgeon was that his gall bladder was severly infected but they're giving him massive doses of antibiotics and say he's doing well. I talked with my "sources" here (meaning my nurses) and they said that the fact he could get out of bed for a few hours and have some company were all GREAT signs. (They ought to know!!!) It's real nice to have my own crew to bounce things off of.

Now Me. I had a bad day yesterday. First, Dr. Morigouchi (sp?) was not at all helpful when he came for his brief (30 second) visit. He basically told me that if I want to get any better/stronger, I need to walk and that walking will make my breathing easier. He's obviously's NOT looked at the x ray/ct scans. His attitude was I'm just laying around doing nothing, expecting to get better and that if I didn't get up and get busy, they would end my stay here and I would have to pay for any additional time I stayed out of my own pocket at about $2000.00 a day.

I was so mad/upset/discouraged that if any of the nurses had given me two cents, I would have packed my stuff up and called one of you to come take me home. However, cooler minds prevailed. Ra-door-a (the phonetic spelling of her name) was supposed to come walk with me later and Aubree, my nurse, suggested I talk with her.

When she came, I explained I was doing my walking like I was supposed to but physical strength wasn't the problelm I was having. It's the blasted pump. She went and looked at the x rays/ct scan and came back and said yes, the pump IS sitting just below the diaphram and she can see why I'm having trouble with breathing and shortness of breath.

She also told me some other things about the transplant procedure that were different from what I'd been told. I believe what she said because she is the one doing it. First, it's not two weeks after the surgery that you get re-listed for transplant, it SIX. They wait that long because there is less bleeding and complications. They'll do it sooner but only in emergencies. Second, you have to be able to walk 500 feet. We measured the distance I can walk and it's only 120 but, after walking with me, she understands that it's not the lack of strength but the lack of oxygen that's keeping me from doing the 500. She said the transplant meetings are on fridays (not mondays, like I was told) and she would bring all of this up at the meeting.

The other thing that was a positive was I FINALLY got a nurse to believe I was filling up with fluid. They stopped my lasics (water pills). I'd been telling them for a couple days that I felt bloated and my right foot was swollen (couldn't find my ankle). I was feeling like I was a size 12 stuffed into a size 8. Last night my nurse, Aubree, got hold of the Nurse Practioner on duty and explained the problem to her. They gave me a small dose (20 ml) of lasics in my IV and I've been going like a band o'fire. This morning I feel more myself; my foot is almost back to normal and I feel like the day is going to be OK.

Now, I've caught you all up on my own odessey. I just want to tell you that, because there are so many of you out there that want to know what's going on with Mac, Mom's going to call me in the evenings when she gets home from the hospital and I will post what she tells me on my blog so she doesn't have to spend an hour or two repeating everything over and over. So, in the future you can get all the latest news about BOTH Mac and myself right here. Hope that's OK with all of you. I'm trying to make it a bit easier for Mom.

Thank you, one and all, for your prayers for the both of us. We appreciate all we can get. Take care.


Jini

Addendum to Journal

This is a short note to give a brief up date on Mac. This way, Mom doesn't have to spend quite as much time on the phone.

His surgery was supposed to be at 10:00 am today. They came and got him at 3:15 this afternoon. Suprise, suprise, suprise. (This from someone who's been there, done that!) The surgery was supposed to be laprascoptic (sp?) but his gall bladder was too inflamed for that. They had to do a full surgery. When Mom called me at 6:30 from home, they still hadn't brought him back to his room. She was too tired to stay any longer and had come home but Janet stayed on and got to see the doctor.

He explained about the surgery. Doing the full surgery has a better chance of infection and they're worried about his health...i.e. his diabetes, heart condition, etc. So he'll be in the hospital for at least a week or so.

I'll know more when Mom finally gets to talk with the doctor (hopefully tomorrow) and will post what she learns then. For now, I'm doing well; walking my three walks a day, changing my own dressing, getting into my battery harness on my own and my numbers are good. They'll have a team meeting tomorrow and, hopefully, I'll get re-posted. Let you know when I know anything.


Jini

UCLA Journal 12

Good evening to all of you out there who are awake at this time...probably none. So you'll just have to read this later. Here's a pic of Mark and myself when he came down. It was wonderful to see him and he spent two days - just the two of us. Thank you, Mark.

I'm in better spirits tonight. I think it's because I got what MIGHT be some good news. I went out for my walk last evening and ran into my surgeon, Dr. Ardihali. We talked a bit and got around to the fact that I'm still having trouble with my shortness of breath. His comment was "But it's better than when you came in." I told him no, it wasn't. In fact, on a scale of 1 to 10 my old shortness was about a 2 compared to this which was more like a 25 and I didn't expect it to get much better until I could take decent breath. He thought a bit then said maybe they should just put me back on the transplant list and not send me home to wait. So. He's only one person on the transplant team but he's the first one to suggest my staying and getting a heart. THAT'S PROGRESS!!!

When Kelly and Tom came down last weekend, they brought some pictures of their trip to the coast the day after Christmas. It's become a bit of a tradition with them. While they were there, they took the boys bowling. I think Josh has a pretty good hang of it.....

Landon seems to be getting it, too...

And even Dylan seems to know what to do....

OK, Carol. I'm trying this the way you told me to. Cross your fingers and hope....

UCLA Journal 11

Yes,Virginia, there is a Santa Clause.....'cause I got one of his elves here to visit me on Christmas Day. Her name is Charlotta and she was my Care Person for the day. Everyone on the floor gets a nurse, a care person and a roving nurse on each shift. Now, how's that for service!!!!

I wish you all a Happy New Year and hope this New Year's Eve is great. I've seen the fireworks on TV from Sidney, Australia celebrating their new year. And from China and Taiwan. Come on New York. You'd better be busy.

I guess I complained enough to the right people because today I got a visit from Betty, the Nurse Practioner, from Dr Ardahali's office. He's my surgeon. I told her about the lump and she went down and found the x ray's and CT scan on the computer for me. It shows the lump is the pump. That's not where they implanted it but evidently, when I got so dehydrated, the tissues shrank and it moved some. Now that I'm not dried out, it's kind of lodged there and the only way to fix it is to open me up again. (NO THANKS!!!) She did say that as the swelling goes down, I should be able to breathe easier. So cross your fingers everyone.

Yesterday, I had a visit from Rhodora. She's Dr Moragucci's Nurse Practioner. She's the one that comes almost every day and checks on how I and the VAD are doing. They did an echo and upped my pump speed to 10,000 from 9800. She's always telling me to walk; "I'll get my strength and stamina up that way". (Like I didn't know that!) So I invited her to come walking with me that afternoon. When she came, she wanted me to stand up while she checked some numbers on the pump. After a minute or two, I had to sit down. That's when she realized what I was talking about when I claimed I was short of breath. She changed the pump speed back down to 9800 because I felt better when it was set there, decided to put me back on one of the medications they took me off of and told me to spend the rest of the day in bed, quiet.

Today I took a walk with my nurse of the day, Angela - AND the ever present commode - and found that the change in my pump speed yesterday coupled with the return of my med seems to have done some good. I didn't get any further than I did yesterday but I wasn't quite as tired at each sit. That's progress.

Kelly, Tom and "The Boys" were down on monday. They brought me pics of Christmas morning and their trip to the beach the next day, etc.:

This is Josh and Landon doing their Christmas program at the nursing home. See if you can find them.....

BEFORE......

AFTER....... (Can you find Dylan?)

Uncle Mark took my place on Christmas morning. He called it controlled chaos.... But the boys enjoyed having him there.

Well, Angela just brought me lunch from the Thai place down the street. It smells great and I'm dying (just joking) to eat it. Thank you all for your continued prayers and all the love I can feel from you. You have my love and prayers right back

Jini