Wednesday, December 28, 2011

What's ahead

.....probably not more blogging.

Sorry lord I suck at this. The only time I think of something wonderful to say is at 2am, and by 8am it's poof and blah blah blah...

I won't do a year in review post because this year was pretty much... WING ZING.. POOF Transplant/SPLAT!

Seriously, it's like nothing else happened. I swear today #1 and I had to ask a FRIEND who the heck one of our goat babies was out of. Thankfully he could remember where she went... which lead us the the name. (all stuff stored in the computer, but used to be *right there* in the brain) I had to ask #1 what the heck the cows names were. Really? I named them... *eye roll*

And yet, today while #1 and other son #2 were giving shots to said babies, I whipped out each and every name... Except "horse face", man has she changed!

So for next year...

Some weight loss I hope. Eating healthy, yeah probably not going to happen more than it is. Some drugs getting cut back will help some, and getting my lazy butt into shape will help ALOT. Getting back to work full time will go a long way towards that. Had #1 pull out the Wii and put it in the living room and spent 10 min on it, then went and walked on his treadmill for a VERY short time.

Continuing the use of the 8 weeks of meals planner I found online. Yeah!, for someone else figuring it out. It's great because even DH can do it. We started these before my surgery because, god help him, my husband had no sense of how to flavor food, and you can only fry a chicken breast so many ways. He's good at following a recipe, and again... someone else can figure it out.

Trying to send out thank you cards. Wow we have slacked on this the last few years, I just haven't had the energy to fight to get it done, or to pick out the cards either.

Adding on to my business, adding clients, some new equipment....

Making more than 2 goat shows a year. Hoping that the new laws won't effect this too much. I don't read it to have any effect except on "street sales". (sb-917 animal abuse laws for CA) Haven't heard anything in the goat world about it, but it is all over the rabbit lists. Some people who claim to know it all (on the internet... hahahah) say no shows will be "legal" and animal control can come... blah blah. I will believe it when I see it, but until then, we won't be hauling as many.

Oh, and to make all those pesky DRs appointments. Happy Healthy and all that.

What will your next year bring?

Wednesday, December 21, 2011

Freedom, Sweet Freedom

Yesterday was another clinic appointment, but by far the best one yet. I saw my regular Pulunalogist, Dr. Blue Eyes, and it was extremely informative.

#1 He explained the antibody numbers they are watching and said that they really don't know how those number relate in relation to longevity of transplant. They are collecting data, a study really, but they do look for rises in those numbers as a sign of infection. The numbers will wane and ebb all the time.

#2 My medications will rise and fall all the time and it is not necessarily and indication of rejection. It's a numbers game keeping all the levels working together correctly.

#3 After a quick spiro, which checks lung volume, my results came back at 91% of normal for age/sex/weight. It was 80% 2 weeks ago. This is a number higher than he said they ever hoped to see from me. And not to expect too much more, since the lungs aren't mine they do not ever expect 100%. HA! He obviously forgot who's he's talking too.

Oh and the important one....

#4 I CAN GO HOME!!!!! They canceled all of next weeks "stuff" and I don't have to come back until the 3rd (actually the 2nd since those are AM appointments)of Jan.

So I am down to once weekly blood draws and once a month clinic appointments until May. In May it goes to bi-monthly appointments until my one year anniversary. After that, every 3 months.

I *could* have gone right home after my appointment, but since I had plans for the week here, trying to kill the boredom until I went AWOL again, I offered to stay until my draw on Thursday. They upped my prograf on Monday night and I'd like to know where it's sitting. (Still low, btw)

Speaking of Prograf.... this shit sucks. First off I have to take it sublingually, under the tongue, since they can't get my numbers up to an acceptable level to change me to oral, which means I have to not only wait for this powder to melt, but then wait 30 min to eat or drink. HUGE time sucker and I hate time suckers. (Says the girl who plays Bejeweled...SHUT UP) The second sucky part is the shakes. Tremors the drs call them. Every time they up the dose it takes several days to adjust, if at all. Add to that the prednisone, which just makes you race, some days it's all I can do to sign my name. I have cards to fill out for Christmas and am debating just printing out what I have to say, because waiting for my hands to mellow out may be a moot point. But other than the puffy face, thanks prednisone, and the shaky hands, I have been blessed with minimal side effects. Too bad I didn't get the weight loss side effect... I never get the "good" ones.

Wednesday, November 30, 2011

Nothing much to report down here. Made it through a WHOLE appointment at the hospital without someone deciding I should hang out and stay for a while.

It looks like the sun is going to come out today...finally. I could use a dose of sun in my life. I'm bored stiff. You can only walk around this park so many times. I'm going to put around in my car a little this weekend and see how that goes. I'm not worried that I forgot to drive or anything...mostly that I am comfortable enough behind the wheel. If I was home I would be more likely to be out and about already, but traffic here is a whole new ball of wax.

So alls going well, just trying to pass the time between appointments and the time I can come home and be bored there instead.

Sunday, November 27, 2011


Saturday night I finally was home and not having yet some other procedure done so I made it past that 48 hour mark where I could finally have a damn shower. Ok, before you think EWWWWW.... sink baths have their usefulness, and a lovely NA at the hospital rigged a chair and I leaned into a shower and she washed my hair, so it isn't as bad as it sounds.

Anyway, shower. I was FREEZING! There wasn't enough hot water in that bathroom. Our trailer has a shower, if you don't want to raise your arms, or turn around, so I'm opting for the park restrooms/showers. The incision under my right breast, which I've been having people look at for weeks, opened up in a spot and drained a bunch of nasty goop. Yellow/brown but not smelly or chunky. I cleaned some out there and when I came back to the house...and stopped shaking like a leaf...I was able to clear a little more. I opted not to call home health then knowing they were coming in the morning anyway, and I had no fever.

When HH got here on Sunday she flipped through the roof. My thermometer is a little temperamental and she took it's first reading, 99.1, (stupid thing read 99.1 the next three times I tried to use it too....seems better now) plus the weeping and sent me to the ER at about 4:30pm last night. Upon check-in at the fever. Never had a fever.... blood work was normal, white blood cells normal. All checked out. The surgery team came and took a look, they don't want it messed with, no dressing. I'll see them on Tuesday at my clinic appointment. There was actually some talk of reopening that area of the incision and cleaning and re-closing. This was not my favorite option obviously. I really just want to be sure this is dressed correctly so it will heal. They are going to order some different shots during my CT scan next week to make sure there is nothing pulled loose inside that will need to be fixed. We rolled out for home at about 9. Uncle stopped at McD's for us so we could snag some dinner, I was famished. I was beyond hungry, I had actually banned the talk of food. You know you are starved when your 16 year old son tells you to slow down.

I'm still shooting for coming home the second week of Dec. I don't know with all this "other" stuff going on if my schedule will stay like it is, or if they will tack on some extra tests and things at the end. Once I get to a once a week clinic only, I'm coming home. I will just have to drive down once a week for clinic. Labs I can have at home.

Friday, November 25, 2011

Black Friday

What is this, day 22 since I came down here for my transplant. It is starting to seem like an eternity. Boredom has beyond set it, but I am not really "up" to much.
First thing this AM I had to be at the hospital for a blood draw. The lab is supposed to open at 7, we planned to be there at 8, since my test has to be done between 7-9. We were there shortly before 8 to find they didn't open until 8, day after the holiday and all. So at about 8:15 we find out, no, the HUGE sign at the front door was incorrect, they were actually opening at 8:30. Damn was I glad we hadn't gotten there at 7, I would have been slightly hot. At 8:40 I was back in the truck and headed for home.
Bill, Greg, and I went after noon today and checked out the huge mall/plaza over in Daly City, which is only about 2 miles from camp. I needed to get a few things if the girls were going to stay and Greg needed socks. I can't for the life of me understand why he thought 2 pairs of socks would be enough.
We settled for a Target since it seems the only wallyworld is in Brisbane and though it's probably close, it seemed too far to bounce around in the car. It still is hard to get jumbled and bumped around. Think separated sternum (though mine wasn't) and 5 perforations between different ribs. The numbness in my chest is finally subsiding, though when I get shook around it comes back. I will be glad when those nerves get themselves realigned and regrown. I had an itch on my right breast, but felt it on my left.... there is just nothing right about that.
We spent about an hour cruizing a super huge target with a full grocery store in it. The place was still packed so I wore my mask. I only wear it when in the hospital, the one place they say I don't need to, um no, sick people are at hospitals. Of all the places I may or may not wear it, the hospital is for SURE one that I will. I also wear it if the stores are packed. It's funny how many more people I notice sneezing and wiping their noses now.
When we got back I took Yo-yo's new leash and took her for a walk down the dog area and to the bluff and then back to the trailer. By the time I was on my way back my legs were getting tired and I wasn't sure I could get back up the steps. I have found when I am really tired I don't lift my right leg as well and it gets caught on the top step. I usually have spotters at the top and bottom of the steps because I can't lift or push more than 10lbs with my arms. I feel every pound across my chest when I do. I did make it pretty much unassisted to my aunts and uncles yesterday for dinner. I don't carry anything extra though, not even my wallet.
Bill left for home about an hour ago. I don't know that he'll be back down until it's time to go home. He's doing my work and his job both. Disability hasn't set in for him yet so money is really tight this payday. Uber important to keep my jobs going as they will pay the bills right now. It will all catch up eventually. Just have to hang on til then.
I'm going to attempt to wander over and take a shower tonight. I think all my wounds can get wet now. Last time it was shower day.... they re-admitted me. MUST WASH HAIR.
All is well for the time being, and while I thought I would have a whole weekend of peace and quiet, home health will be here tomorrow since they are worried about this ugly wound that isn't healing on my left side.
So much for my weekend. As if I have anything else to do right?

Thursday, November 24, 2011


In our little home away from home our little family had a fabulous dinner. Bill drove down this morning and brought me my babies and I've sure missed them. They were happy enough to see me, my little yo-yo was super happy to have her mommy, Bridgette was just happy to see someone with a blanket.

Bill brought down a ham with him, Auntie made salad and rolls, Granny made sweet potatoes and turkey stuffing (greg's request), Uncle was sure we had pie and ice cream, and I picked up a veggie tray while on my walk at Safeway today. It's been rainy and wet so I haven't been outside walking much. I try to get to some store, or to the hospital every day to do walking. I didn't walk much during stay #2 because of the uber painful drain line.

The home health lady was by today to check on the new site and to do a new update since I was just released. The new drain looks awesome they said, nothing more than a needle mark. One of the old drain sites is giving them all fits. It's not sealing up, has quite a bit of dead tissue, and isn't changing for the better in it's prognosis. They are trying a new type of dressing on it to try to lift out that dead tissue and open it up to something more pink. They will now be coming out every other day to be sure it's making progress. I can't see the darn thing to tell them one way or the other. Everything else looks spiffy. The incision looks awesome, healing nicely with some Vit E slapped on it daily.

Take blood sugar, blood pressure, temp, weight, pills, mark, check, and chart.... wash rinse repeat.

Wednesday, November 23, 2011

Stay #2

On Friday, the day after my release date from stay #1, I had a few tests to have done. While I was waiting for test #1 I ran into my reg pulmologist Dr. Blue Eyes. He was sad to hear I felt like crap. He could also visiably see my whole body shaking and guessed my Prograf was too high, would look into my numbers, would order something other than glorified Tylenol for my pain, and told me I was doing SO SO SO good for being less than a month out! Chin up, it would get better.
Test #1 was a nice simple "spyro" which just measures my current lung capacity. While I didn't feel like I was moving more air, it turns out these lungs are working at least 4 times better than the old ones. It was good to see that, because really, I couldn't feel it in here.

Test #2 was a high resolution CT scan of my lungs. Ct lady said my right lung had fluid around it. No one called me all weekend, Bill was here to visit, and on sunday I called the home health nurse to come and see if she could pack the old drain tube hole that won't seem to stop draining.

Monday morning was a morning of tests again. Starting the morning off with a 7am bronchoscopy with biopsy. That's pretty much where it all went down hill from. They got in for the bronchoscopy and found my lungs look GREAT, but the right one was smooshed. They called in radiology to do an ultrasound to look for pockets of fluid. They found a "medium" sized one that they decided to put a chest drain in for, though the radiologist thought he'd gotten it all with the 500cc of fluid he pulled out at placement. Dr Golden (fabulous pulmonologist) said they would be doing NOTHING else to me while I was there, I'd stay over night but as soon as it quit draining I could go home. This was one of those little drains, about the size of a straw, but they placed it in my back. You can't lay on it. Mine you couldn't even TOUCH without me going through the roof it hurt so badly. Once they finally found me a bed, 12 hours in the radiology dept on a gurney, the nurse I had was instrumental in getting me some pain meds. The doctors couldn't agree and in the mean time where just letting me lie there in agony. She was one of my nurses during stay #1 so she knew what I HAD been on and what HAD been working so she just kept on them all night until she finally got me something. She also had to track down my medications since there were no orders for those either. She must have came into my room hourly with another something for me to take as the orders trickled in. While she was there she would help me shift my weight around and make it so I could lay as close to on my back as possible. This let my mom rest as she was up with me all the rest of the time.
I drained jut shy of 1000cc that night alone. We had thought that I would be home from there yesterday afternoon because at 1:30 it seemed things had slowed way down. However as the afternoon rolled into night I drained another 250cc. One more night and today they let me go, again. All in all, with the initial drainage at placement, this "medium" fluid buildup drained close to 1800cc. My heart rate has dropped considerably, which we really expected with the new lung placement but was hard to call with the pain I was in. When the poor girl came into remove the drain today I warned her it hurt like heck. She said #1, this is in a horrible place. And #2, it's laying against your diaphragm. Every wiggle, sneeze, burp, bump, cough moved it either into my ribs (where they push the tube through for placement) or into my diaphragm. When she pulled it, it was pure fire from my shoulder to my belly button. Then my right leg went all pins and needles. Once the burning stopped, about 3 min after she was done, it really did feel better.

Mostly I can notice the reduction in fluid only in that it is slightly easier to draw a breath. You'd think it would be a HUGE change. I'm sure it is! Only my chest is still on and off numb. This could take months to go away. When I get jiggled or bumped around, say in a car, my chest goes numb, and while I know I am breathing, and can sort of feel that, it feels mostly like a great weight is on my chest.

I have a free pass tomorrow and am hoping to get back to my walking, which has been far less than I was hoping to achieve. My babies will get here tomorrow, and while I'm not sure I'm having Bill leave them altogether, I am looking forward to a visit.

I'm getting rather shaky now, so I'll go for now. I hope you all have a Happy Thanksgiving. Thank you all for your thoughts and prayer. As always, one step at a time. At least now there is a light at the end of the tunnel and it isn't just a freight train headed my way.