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

UCLA Journal 10

Well, I still don't have any knowledge on what the lump is or what they're going to do about it. I get a CT scan tomorrow morning but who knows when, if ever, I'll hear about it. It's a little less sore tonight and I think a little smaller but I still have trouble breathing. I did go for a walk last night that was fun even if it was done in short steps. Go so far then sit down. And it's lots of fun with the nurse or care partner to be following behind with the commode so I'd HAVE a place to sit down when I got tired/light headed/weak in the knees. Mark went with me.

Yes, Mark. He came down yesterday around noon and stayed until about 4:30 today. The sofa here is long enough for him but not very wide so it wasn't a very good nights sleep. But I sure enjoyed having him here. He spent a lot of time on my computer streamlining it. Deleting this adding that. I'll probably never find all of my stuff again but the computer is working a lot faster and smoother.

Here's a few pictures of what my room looks like. This is my bed - a typical hospital bed - but I brought my own blanket down. The little dog on the left was given to me by Christopher, a nurse in pre-op when I teased him that he gave the 11 year old girl in the next bed a monkey. He gave me a dog saying he was all out of monkeys. I named the dog Chris the Furred..... The teddy bear on the right is from...you guessed it. MAC. You know how he is when it comes to buying stuffed animals. He brings me a new heart all soft and warm and tied up in a bow. We named the bear Cardio.

Here's close ups of them. They help take the place of the doggie visits I'm no longer allowed. I think that's because of the cords maybe getting tangled up in paws.

This is a picture of the flowers Deby sent me. It's the only time in my life that someone has sent me flowers while I was in the hospital. Aren't they beautiful!!!! I love lilies....

Well, this just gives you a small view of where I am. I keep telling you what a beautiful hospital this is. It's only been open since June/July. Mark made the comment after he was here that the true picture didn't come anywhere near what really was. So I thought I'd give you a brief look so you'd have a better picture.

Well, when I get more news I'll let you know what's going on. Until then, all of you enjoy the holidays and drive carefully. I don't want my "new" heart to be your "old" one. Take care, all of you. You have all my love....

Jini

UCLA Journal 9

I started this entry a couple days ago but didn't finish it. When I tried to save it, it went to the big Internet in the sky. And, since I was having a few bad days, I didn't try again until now. It's 12:58 am Christmas morning so.... MERRY CHRISTMAS everyone.!!!!!

The last few days I feel I've lost ground. I've been having trouble breathing for over a week now. I'm taking treatments for it and it's gotten better. But I keep running out of breathe - even when I am just talk for awhile. If I'm laying down, it happens faster than if I'm sitting/standing up but it happens every time. And my ribs have been so sore it hurts to breathe. I haven't been able to do my walks to get stronger and better and, all in all, I'm feeling down and depressed a little because of it. Today, things did seem to get a little better.

My breathing, while still not normal, has gotten easier. I was taking treatments every four hours around the clock but I'm down to twice a day. And part of the pain in my ribs turns out to be the "corset" I wear to hook my controller to. You wear the thing 24/7. The controller probably weighs 1-2 pounds so the "corset" straps have to be tight around your middle. Now I know how Victorian women felt when they got laced up - but at least they took the things off at night! I've started taking the controller and corset off for a few hours a day. (I can't really take the controller off but do disconnect it from the corset and hold it in my lap.) It's made my ribs feel so much better.

Now the only discomfort I have is around my ribs is just below the sternum. There's a hard lump just below the skin there and it hurts to push on it. Heck, it just hurts period. I pointed it out to my nurse tonight while we were doing dressing change on my power cord and she had the nurse/practitioner come look at it. They went and looked at the x ray taken this morning and thinks it's my pump. I sure hope not because if it's part of what makes me short of breathe, I'll never get back on my feet the way I want/need to. I'll know more on this on Monday after I see my regular doctors.

They sent around flyer on my dinner tray tonight announcing that for lunch tomorrow we can order a prime rib dinner. It's not the ham I would like but, after 5 weeks here, the menu has gotten pretty dull and boring. They did the same thing at Thanksgiving but I didn't notice so had to do with broiled salmon. (I tell you, it's bad when your conversation turns to food on your blog.)

Weather permitting, Chris, the gal who cuts my hair, and her husband, Herman, are going to come visit me on Sunday. And she said she'll cut my hair while she's here. Now I want a BIG round of applause from all of you for Chris. 'Course those of you who know Chris know that's just the sort of thing she'd do. I can guantee it's going to lift MY spirits. I've stopped looking in the mirror and take everyones' "You're looking good" with a LARGE grain of salt. I do see myself whenever I wash my hands and "good" is just not the right word. I'm afraid if I were to go walking on the streets, little kids would hide from me. Oh well, maybe it's my INNER beauty they say is looking so good.

To all of you out there who have dropped a line/internet/phone call I just want to say "Thanks". It really perks up my day. I greatly appreciate your prayers too. I hope it won't be too long before I'm home - one way or the other. For the first two weeks following my surgery, I'm off the transplant list. I should go back on this friday if everything goes OK. I'll be at the "top" of the list for the first 30 days as a 1A then drop down to a 1B. I'll never go back to being a 2 again. I'll wear the pump until I get a new heart or pass on. So, all I want for Christmas is a new(er) heart. And I'd really like it if you'd all add that prayer to your list. I know God will provide the heart when it's the right time but I'm hoping a few more prayers might help make it "sooner".

It's almost 2 am. I guess I'd better get to sleep or Santa's not going to come see me this year. This is the latest I've stayed up in a week. Vicodin is a great sleep aid and it's making itself known. So I'll close this time with all my love to all of you. Have a WONDERFUL Christmas.

Jini

UCLA Journal 8

Before I say anything else, I want to apoligize to all of you for the "typing" in my last entry. I didn't realize until Iafter I saved it, that between trying to type with a blood gases clip on my index finger of my left hand and coping with two vicodan pain pills, my co ordination and mind had just gone to put. By then, it was too late to do anything about it. And frankly, I didn't care. So, to all of you that put up with that mess, my apoligizies. I'll do my best to not do it again.

As you can tell by the picture, most of my kids/grandkids came to see me today. They brought GIFTS!!!! Then we had to take pictures of the gifts. This was the nicer one. The other one like this had the christmas tree somewhere else. I'll leave that to your imagination. I got two new pair of socks - Christmas socks, one with balls on it (and I'll say no more about that). Deby brought me an 8 x10 picture of her and her family (I'd only been asking for one for a year or so). Kelly got me decals for the back of my van - "Grandma and her three Grandsons". Mom sent me a tree for my nightstand and I had her send me the guardian angel Karen crocheted for me last year. Deby also brought homemade fudge and cookies. I shared some of that with them (the boys whine so when you say no...) but the ones reading this.....NAH NAH NAH NAH NAH NAH!!!!

I was sent back to the main floor today - out of ICU. It's nice to be back. As they pushed me down the hall in my wheel chair, all the nurses came out of wherever they were and welcomed me "home". And home is what they've made of it for me.

I've been up walking for the last 3-4 days now. NONE would count as a real walk. I made it to the end of the hall each time but, on some, I had to sit and rest partway down, others I made it all the way down without stopping. On none of them did I make it all the way down and back without having to rest on part of it. Today, they finally figured out they'd taken too much water off me and that's why I was having trouble. With all kinds of things. I didn't want to eat -no saliva. The meds were overworking on me some because there wasn't enough liquid to dilute them like they should. Thank goodness they've changed that. I feel better than I have all week.

I don't know what else to tell you about. That's all the news. I'm in a wonderful facility with fantastic people who are good at their jobs and have a great deal of compassion to go with it. God has truely been taking care of me. So for all of your prayers, thanks. Take care. Call whenever you feel like it. Until next time.....

Jini

UCLA Journal 7

When your mother wants to hug you but got a runny nose at lunch, she'll do just about anything to accomplish it. That included wearing a bag over your head.


As you can see, Mom, Mac and Duane made it down to see me again. They tried to do it yesterday, but Mother Nature has more "force" and Mom had to bow out - somewhat gracefully.


As you can see, I came through surgery successfullyand continue to make improvements. The day of my surgery was real busy but I remember little of it. The surgery started about 7:30 and they got me to my room about 3:00. The day is just a series of moments of awareness with longer periods of blankness. They pulled by breathibg tube about 7/8 o'clock. Shortly after, Mom called thr hospital for newson my recovery andthey put her through to me so she could hear me. She cried.


Sunday was a good day. They keep taking tubes out and with each one, I feel better and am able to do more. So far they've taken out 3 chest tubes, 2 out of my neck, 1 each out of the backs of each hand and one more I can't remember. Today they took out the cathitor and I'm now using the comode on my own. That doesn't sound like much - unless you've ever been confined to bed in a hospital. And anyone who has knows the sheer pleasure of being able to do so. Enough said.


I've had a little trouble with my breathing since they took out the last chest tube. It's like I'm having an asthma attack. The respitory therapist has been here twice sofar today and that's getting better.


I want to take time here to let all of you outthere know what a fantastic staff they have here at UCLA. They treat you like long lost and greatly missed family. My nurse last night volunteered to take the blanket the girls from my bible study class at the park and wash it. She brought it back this morning clean and ready to go. (She also brought me two egg mcmuffins after hearing me say yesterday that I'd do just about anything for one.) Now that's service abovr and beyond.


I was going to write more but I think I'll have to postpone it for anther day. My energy levels are dropping.

Goodnight for this tim e

Jini

UCLA Journal 6

Well, it's almost 1:00 am. My surgery is scheduled for 7:00. I've had my sterilizing shower, washed my hair (who knows when I'll get to THAT again). I've been told the surgery takes from 6 to 8 hours. After I'm in recovery and am stabilized (another 5 or 6 hours) they'll take the breathing tube out but keep me pretty much sedatied for the first couple days. So, unless a transplant comes in and bumps me again (like wednesday), I won't be "talking" to you for a few day, maybe a week. Thanks again for all you love and prayers and right back at you...

Jini

UCLA Journal 5

Well, I susre didn't expect to be on here tonight. Thought I'd be sleeping my way through the night in ICU. The best laid plans of mice and men.....

I got everything all packed up ready to be moved to my new room when I was through with surgery and then I waited. And waited. And waited. My surgery was scheduled for 2:30 but no one came for me. So I waited some more. Finally, at 3:15, my nurse came in and said she had good news and bad. I said, "Let me guess. The good news is I can get something to eat and drink. The bad news is my surgery has been postponed." She said, "You got it. Something came up in surgery and you're moved to friday." So, to all of you out there, stand down your guns and get ready for friday.....if something doesn't happen to "postpone" me again

Jini

UCLA Journal 4

Here's a pic of Mac, Mom and Duane the day they came to visit me and Carol "helped" set up my blog. Don't know what they were discussing but it was intense by the look of it.

It's 3:00 am - AGAIN. I just can't seem to sleep here no matter what. I had a sleeping pill at 11 and yet, here I am. I get about 45 minutes of sleep and then BINGO, I'm awake.

So far tonight I've had a shower with disinfecting soap, been give a clean, freshly made bed and clean jamies. THEN the nurse comes in and askes if I want a doggie visit. (Of course!) But now I'm all sterile and can't pet or cuddle him. It was my friend, Zeke, who was the second dog to visit me when I first got here. Oh....I didn't tell you about that, did I.....

UCLA has a pet visitation program. Here I am, sitting on the seventh floor of a hospital in downtown LA and I can STILL find a dog!!!!!! My first was a Great Pyreness named Dreamer. I've got pictures of her laying on my bed demanding I rub her belly. Needless to say, in the pics I'm the one sitting up in the far corner with one leg dangling over the side of the bed. That's all the room she left me. It was HEAVEN!!!

My next visitor was Zeke, an old mixed breed with a westie head on a unknown, but too large, body. He's 13 and still visiting but his thing is to lay on the bed with you and LICK. And after Zeke was a Maltese named Sasha and then a long haired standard doxie named Tovah. All of these happened while I was in the criticle care unit. I was there a week. I've been in regular care for 2 weeks and tonight was my first visit here - and then I couldn't be licked.....

UCLA Medical Center, officially called Ronald Regan Memorial Hospital, is brand new. It's been open less than a year and is very up to date. It's ranked 3rd in the world over all and first in heart transplants. I couldn't be in better hands. My doctor is Jon Kobashigawa, who heads the whole heart transplant team. Is the Lord looking out for me or what?

The surgery is scheduled for 2:30 tomorrow (today, really) afternoon. There is a chance that something might prevent the morning surgery - postponed - and I'll go early but I don't expect it. They'll take me to surgery and "paint" me from chin to knees in betadine, then put me out and when I wake up, I'm going to hurt like hell. The surgery is fairly straight forward. They open the chest from collar bone to sternum, stop the heart and "splice into" the pump. It sits below the heart with one end up into the ascending aorta as it comes out of the left ventricle and the other into the big aorta as it leaves the heart area and heads down into the body. Then they stitch my back up. Piece of cake.

Well, it's now 3:00 and I'm getting sleepy again so I'll close and try for a few ZZZZZ's again. I let all of you know what's what as soon as I can get back to my computer. 'Til then, good night.....

Jini

Journal 3

Well, I was going to play with this tonight and dazzle all of you with the new skills I've learned today thanks to Carol. However, this is going to be my last entry for a few days as the nurse just came in and told me my surgery has been moved up to tomorrow around 2:30. I'm perfectly OK with it; in fact, glad to get it over and done with so I can get on with the rest of my life. So now I've got to pack up all my stuff for the next little bit. Dosn't look like I'll have much access to my computer. So, OK to all of you. I'll "talk" to you again in a week or so

Love you all and thanks for all your prayers

Jini

UCLA Journal 2

Well, I've spent a frusting day trying to figute out how to make this blog work to no avail. I've emailed Carol for help and hope she'll be able to help me via internet and email.

Today was pretty much normal. I've finally gotten the nurses "trained" so they don't wake me up much before 10 am. I keep threatening to post a note on the door that says "I don't do mornings. Come back after 10:00." The only problem with that is doctors can't read!!!

Had a visit from two heart receipents today. They wanted to tell me all about what it was like having a transplalnt. I've heard most of it from my friend Gene who got his heart about 13 years ago. But it was nice of them to stop by.

The head nurse for the pump device I'm getting was in. She gave me some booklets to read and a couple of DVD's to watch. The first is just testamonials from people who have gotten the pump and how it's not as hard to live with as you feel when you first hear about it. The other was about HOW you live with it.

The surgery is tenatively scheduled for thursday - baring any emergencies (transplants) from showing up. After watching the videos, I find I'm not all that anxious about getting it. It looks pretty straight forward. The gentleman two doors down from me also helped any concerns I might have had by paying me a visit. He's three weeks since his inplant and is probably going home on wednesday. I got to see the device close up and ask questions. So, all in all, I'm quite comfortable with what's going to happen.

I want to thank all of you who have emailed me to tell me you've seen my blog (even though it's not working and you don't seem to be able to read my posts. Hopefully, with Carol's help, that will soon be corrected and you'll be able to read this.

It's almost 3:30 am and I think I'm finally sleepy enough to try sleeping again so I'll just close this with my thanks to all of you for your support. I'm keeping you all in my prayers and you have all my love

Jini

Journal 1 from UCLA

Well, Carol, Duane, Mac and Mom have just left. Carol has helped me set up this blog so I can keep everyone appraised of my goings on here. So....



I've been here about 2 and 1/2 weeks now. It's taken them a while to decide what to do with me. I'm not really that sick - especially compared to some of the people here - but I'm not really well enough to come home. They have me on a medicine (Dobutamine) that improves my heart function but it only comes in IV form; when they take me off, I start going back down hill again.



On friday, they informed me they're going to "give" me an LVAD (Left Ventricle Assist Devise). It's a small pump they implant below the heart that "assists" the left ventricle in pumping the blood throughout my body. When they first told me about it, it didn't sound like too much but now I've found out that I'll be having open heart surgery to have it. It's the same operation (so to speak) that I'll have when I get the transplant except they don't remove the heart; just "plug in" the pump.



I don't know how long I'll be in the hospital afterwards but it'll be a few weeks at least. The doctor told me I'll be feeling a lot better very soon after I get it and will be able to do just about anything I want afterwards. He said he's even had patients who took up hiking - just don't forget to take along extra batteries for the device!



That I DIDN'T tell you about. There will be a power cord from the devise, through the sking, to a battery pack I carry in a harness when I'm up moving around and into a stationary pack when I'm asleep or just laying around. The harness batteries are rechargeable and you have extra.



As this is a realitively new device, they have to send a team to Bakersfield to teach the hospitals, doctors, paramedics and fire department what to do should I have a problem I - or my caregivers - can't cope with. They'll teach me how to use and care for the devise before I go home but complications can always pop up. I have to have several back up caregivers; anyone interested



I'll close for this time as I'm tired now. All the excitment of having everyone here. I'll keep you posted as things happen. Love to all of you out there and thank you for your prayers