Wednesday, September 29, 2010

Sternum, Sternum, Why You So Pokey

My sternum wire is driving me crazy and I swear that either I’m turning into a rhinocceros, or something is up with my sternum wires. My weight is going up and YET, YET, my sternum wires seem to be popping out of my chest MORE and ladies, I could add some details about this but I won’t but I am NOT PLEASED.

So I go a-googliin’ and what do I find out? All these homies with their open heart surgeries get their sternum wires REMOVED! Removed I tell you!!

I have never heard of a LUNG tx patient getting their sternum wires removed. Have you? Do tell!!! cysticgal@gmail.com

Between my wires and my stretch marks from the 40lbs of water I gained and lost in three weeks, and the scars on my tummy, chest, and arms including two weird bumps from the anti-coag that I’m allergic to, that they forced me to take before I remembered how to put my foot down with the R word (refuse)---- I’m a friggin mess and good thing this isn’t the year for Project Cruise Hotness, as I would be a sore disappointment.

And yet, I leave you this:

Me lookin sillyAren’t I cute?

gooodnight, cg

Monday, September 27, 2010

Give Shrimp a Chance

Short post as I’m still working off the Versed. Bronch went very well. Minor anxiety that passed. Dr. G-tinymighty is awesome and I hope she does all my bronchs. I did not behave inappropriately during sedation. They didn’t find anything concerning to talk about, initially, other than inflammation- which I knew from the weekend. And I have had no pain afterward. Just sleep. And I love my Mommy for, as always, taking the good care of me.

Also, this whole low fat diet started with my desire to eat shrimp, which frankly, I came out of the womb with. Every Christmas Eve, my dad makes a big bowl of shrimp and I eat half o them while the rest of my fam eats a respectively 3-5 shrimpies. Somehow, my doc, my family, and I all assumed that shrimp were high in fat- WRONG. They are high in calories, cholesterol and sodium. I need two of those three! They are NOT high in fat unless cooked in a fatty way. WTF society?

LET ME EAT SHRIMP!

Tomorrow I get to meet Jessica Newport!!! I am so excited for this mask up to meet up!! Pics will be taken.

I took two videos today but did not upload them yet. Soon!

Here is an old picture of me from approximately 1997: Shout out to KiMindy.

Me Kim 1997

Sunday, September 26, 2010

First Outpatient Bronchoscopy Tomorrow

Ugho. Knowing me as you do, blog family, you know I had to spend today worrying about this.

FYI: What is a bronchoscopy? A bronchosopy or “bronch” is when they use conscious sedation (you are awake but all high, but still requires to participate in the procedure actively), they numb your mouth and throat really well (hopefully), and they use a flexible scope and camera to look all around the inside of your lungs, and sometimes they take samples, which they can test for early signs of infection or rejection before they present themselves as illness (when they’re just a’brewin’).

How Often Do Tx Patients Get a Bronch? At my center, at few days after surgery, at 2 weeks, at a month, three months, 6 months, and a year or whenever your surgeon wants. For me, the schedule is messed up because they bronched me during 2 of my 3 thoracotomies, while I was “under.” So, my last bronch was on my 30th birthday, Aug. 11th.  YAY! jk. So, I got to skip my 1 month bronch which would have been Aug. 27th because by then the med team had finally figured out that I needed a long “healing” time after my FIVE FRIGGIN SURGERIES (even though they call 2 of them procedures). 

Tonight, I have to go to bed early because . . .  I’m sleepy. I leave you with this.

Who says cats don’t like to go for walks?Becky Leashed

Friday, September 24, 2010

Too cute and cartoonie not to post. Only a tid-bit of actual info.

and holy s, i must get better at crafting or choosing or whatever, opening images. i always, ALWAYS look like a psychopath in the opening image (and, closing….wait….do I look like a psychopath the whole time?

Wednesday, September 22, 2010

Letsdothis: escape

This year something weird happened for a childhood friend of mine, and me. We both had these horrible health crises - mine, unepextedly preparing for transplant at least a year earlier than I thought and at a much more dire state, and her - cancer. This friend and I were close in ... wait for it... .4th and 5th grade. But the strange thing is that we went through an amazing amoung of shit together in those two grades. Then the blogs begin and we discover each other experiencing these two things, and have been able to be there for each other in an odd, outside, honest way. I am very grateful. Here is her post today, which is much how I feel or have felt this year:


Letsdothis: escape: "wish i could skip ahead in time to a different time.. as if my life were made of film but instead i find myself at the root of my life my ..."

Monday, September 20, 2010

So tired and drug interactions and Q/A

100920-235107

So yesterday’s post starring B-Kitty posed a few questions to your friend CG.

1) What is my center’s guidelines for pets? No birds. No new pets until a year post-tx (which was very sad for me, as I hoped to get another cat for B-Kitty after poor S-Purry passed away), wash hands after petting, stay updated on vaccinations, and that’s about it.  For cats- Tx patients CANNOT do cat litter because of toxoplasmosis and also cat-scratch fever (a real disease).  Luckily, I have the automatic litter box and my Mom changes it every couple of weeks. HOWEVER, other centers are dead-set against pets in the bed, and its probably not THAT great of an idea.

2) Did I wear a mask to go to the mall? I was all prepared to, but when T-Money and I arrived at the mall it was like a ghost town, so it seemed funny to and pointless to wear the mask. On the other hand,  (and a true sign of the economy), the next day my Mother and I went to Moody Street for ice cream and stopped in both the thrift store and the dollar store (we love a bargain)-and both were PACKED, so I did wear my mask.

In other news, I was exhausted today and am not sure exactly what was wrong. The day started with me eating breakfast and stupidly taking my morning pills with a coca-cola. WTF was I thinking? I got immediate awful heartburn, so I did what I love to do most, popped a tums. PROBLEM! I had just taken my CellCept, so my heartburn turned into nauseousness and general OH LORD WHAT HAVE I DONE? There was a moment that came when I could have puked, and I should have, because the next hour was a hell of stomach cramps and general OH MY.

Then I did my exercise, but the rest of the day I was exhausted and I had the sweats and the cold/hot/cold/hot during my nap and all day. Theories:

Still tired from Saturday

Long lingered drug interaction

Fighting off a bug

Adjusting to new Prednisone dose

The DTs from not taking any oxycodone today (and I did feel better after I took some….)

All of the above and maybe just a bad day.

Okay, this post has gotten long enough! Goodnight, cg

Cat says Mommy

This is tonight’s news, since you are all enjoying video-CG so much ! This is also an open inquiry for tips on post-transplant muscle fatigue/atrophy and soreness as you re-build. I lost a lot of muscles in my legs and butt and today, horrifyingly, I remembered that when I was in the ICU in the fall of 2009, they told me that for every DAY of bed-rest, one needs a WEEK of rehab. By that standard, I might be singing RUDOLPH THE RED-NOSED REINDEER by the time my ass is back in shape. ughie!

 

Thursday, September 16, 2010

Video Updates are Easier!

So sorry that I haven’t been writing more. I hope to get back on the horse, soon. Here is an informative video about my first post-tx trip to clinic, which was today!

Sunday, September 12, 2010

Home Again, Home Again, Jiggetty Jig

This'll be yet another quick post to hopefully launch me into posting more often. I finally arrived home on Thursday late afternoon, and I have been enjoying the joys, rest and calm of home along with the very busy busy busy ness of taking my meds and exercising and resting. Like a lot of other post-transplanters, I actually am finding the pills easy to manage compared to home IVs or nebulizers or the bipap nap - but the meds themselves (and still some pain meds) make me tired in the head, and the exercise and general rebuild-CG-plan (uh... plus the 5 surgeries) make me pretty sore in the morning.... til like noon. Then I feel pretty good the rest of the day.

My mom and I are having a pretty good time learning how to cook with less fat, and after so many weeks of barely eating at all, I'm finding that low fat or no-fat foods taste yummy enough to me. Weird.

I've started scar lotions for ALL of my scars from the IV lines, drains, and surgeries. Aye Aye Aye. I swear it looks like a baby bird made footprints across from stomach from the drain scars and their stitches' scars. But they are going away.... they will go away!! My BIG scar still has some of the staples in it, so it has not yet begun to be potioned or lotioned, but I think it's going to heal very very well.

So that's my story for today. Goodnight!!

Tuesday, September 7, 2010

Early thoughts on infection and rejection

. . . and my new less-crazy lifestyle for awhile.

Well, my lifestyle has been pretty non-crazy for a year, but ... whatever. This post is part PSA, part blather blather blather. I am preparing to leave the hospital (!!) and realize that I have never taken the time on the site to write about the two big words in transplant medicine:

infection and rejection.

After one gets a new set of airbags, they have to suppress their immune system severely to encourage their own body to accept an organ from another body, regardless of he matches in blood, tissue, and immunology. So, right now, I am the MOST immuno-suppresssed as I will likely ever be (other than, say, the first week after the surgery).

At the same time, the body is vulnerable to all sorts of infections from the outside world due to the surgery, from the donor and her/his immunology (disease) history, and the stressors of recovering, in my case, from a 30 year pnuemonia. In fact, my body harbors all the infections that used to live in my old lungs, so we have to make sure my new lungs do not get any sort of infection.

The result is that I take a carefully calculated chemistry of immuno-suppresant drugs, while taking anti-infective drugs like antibiotics, anti-virals, anti-fungals. There is even a mouthwash!

That is the medication side of the infection/rejection balance. The practical side of it is to limit other ways that the body can develop rejection or infection. The first topic is easy to understand once you start to think on a germy level. Avoiding infection: avoiding germs from infected people, food, surfaces and, well, air! Of course, all people avoid germs. But, post-tx, if you are immuno-suppressed you are more likely to get severely ill from the smallest cold bug or skin rash, and your body is like a sponge waiting for these germs.

Here are some practical things that I will be doing to avoid infections-

From People:
I can't go in crowds at all, and a crowd is defined as a place where you can't control how close people are to you. Standing in a line, shopping at a busy mall, going to a restaurant at peak hours- these are to be avoided.

Limit germs entering my home. My house is gong to be like a little CG Germ World, and I won't be having many people over to my house, because they bring all their germs into my air space, furniture and etc. So no big keggers for me anymore (?)

Limit contact with sick people, people who were just sick, people who are incubating a sickness, people who just got off a plane. This means that I DO NOT want to see anyone who has felt sick, had a sore throat, fever, cough or sniffles in 3 straight days. Similarly, if a household member has been sick- I don't want to see anyone from that household. You have to live in a well-house for 3 days before I want you breathing by me.

Mask! You've seen my sport the surgical mask before. I will wear it when situations arise that are germy. For example, if I have to go clothes shopping, I will mask-up. If I go the the grocery, mask-up (grocery stores are the Mecca of germs). If I end up in a crowd, have to take an elevator, or etc. - mask it up! This is most important in the first 6 mos- 1 year.

Hand washing and anti-bacterial - I already sport the anti-bac, as you know. You will see even more of it, and I will encourage you to use it to.

Closed air places- With other people in a car, I will want to crack the window, and I can't ride on a plane for a year.

Hugging and lovey-doveys: I am usually an affectionate person, but I am not going to be huggy or kissy or cuddly for at least a year. Don't take it personally, but I do not want to hug you or get any kind of kiss on the cheek or forehead from you.

Random making out with strangers- apparently this is a hobby I have to forego. just kidding

Ok, enough for tonight, more TOMORROW, TOMORROW, I LOVE YOU TOMORROW.!

Monday, September 6, 2010

good but tired

Hey y'all.

This post is a general apology for not posting more lately. I have videos and pics from the night of my tx, and tons tons tons to tell you about, but I am so focused right now on getting my physical self back together, my mental self is sorta tired. This whole 5-6 weeks in the hospital, I have not read a page of a book, for example. I prefer Law and Order RERUNS over new episodes. I am just mentally blank from all that has happened and so not much left for the typie types.

The physical update is that, I was right, I DID lose a ton of weight under the whole water-retention-trauma. So, officially I am a CFer on an extremely low fat diet who needs to eat a lot of calories. I am hoping this fat avoidance period can end soon. Today I had a chest CT and it showed decreases to the areas of edema (fluid) in my pleural (outside the lung, inside the chest) space, and a greater decrease to the water behind my heart. So that's good. I am exercising more and more, but I'm only at about .6miles per DAY. Of course, when I ask about it here, I get a lot of answers that they are happy with my progress, and I just need to improve every day, but I wonder, isn't that just a little bit of walking?  I hope to be walking 1 mi. a day by the end of the week, and then slowly work on merging my 3 walks into one big walk. The good news on the walking is that I am walking at a normal pace now, as opposed to last week, and I can talk and walk at the same time which is AMAZING, and makes me less stressed out about walking with people.

For years, I hated walking anywhere with anyone because it is awkward if you don't talk, but I was not physically capable of walking and talking. So, it was anxiety provoking. Also, I sorta feel like a zoo animal. But lately my parents and I have been walking and chatting and its been no big woop- and I haven't needed to stop either.

I miss my cat so much that I could cry. I hope to see her soon.

Love you,
cg

Saturday, September 4, 2010

team america/south park montage song

I feel like so much has gone on in the last 5 weeks that I don't know where to start. My brother recommended that I make a montage. Will start tomorrow.

Enjoy.

Friday, September 3, 2010

quickie

good day today. climbed flight of stairs, and i can touch my toes again! limber cg is not gone forever!

very sleepy at the end of days since i'm doing more workout. will try to post in day light tomorrow.

xxoo

----------
bp /cg

Thursday, September 2, 2010

sleepy

another good day. woke up with pain but it went away more quickly. increased the walking. ate some foods. don't have to wear heart monitor anymore.

but am sleepy.

so sleepy forget nouns.

nouns bad.

oh wait now that's verbs.

i better go to sleep before all the parts of speech have left me and you just get one big

. . .

xxoo, cg

Wednesday, September 1, 2010

Another Day and some thoughts on PRECAUTIONS

Today was a good day after, say, 11 when my Mom got here and gave me a magical butterscotch candy that made me feel better. No joke. That witch woman, gotta love her.

I woke up very very sore all over, which I blame on the final push to clear all these fluids and some mild dehydration while I rocked out the exercise yesterday.

Major accomplishments today: Got my neck IV pulled, so the first time since 7/27, I do NOT look like Frankenstein. I got another bulb pulled, so now I only have 2 chest tubes :) and sleeping on my right side may be possible tomorrow! AND they removed 1/2 of my staples from THE SCAR (every other stitch.) Also, my nutritionist now fully believes that under the water weight I was able to totally maintain my real weight- which is awesome! We all really worried that due to all the nutrition problems, I'd lose like 10 pounds under all that fluid!

Ok - the other thing I was gonna right about is precautions after tx for the first 6 months. Oddly, I cannot find a good list online that I can just cut and paste. Do any of you bloggies have a good post I can refer to or know a site that I can direct readers to about the changes made to avoid rejection/ infection in the first year?

Instead of brilliantly making my own list, I'magotobed.
cg