The Long Doctors' Appointment, It is an honor to meet me.

I had a long doctors' appointment today and it did not go well. All of my shit came back shitty. Except some of my blood work was good. So that's good. "I've got that going for me," as they say.

I don't want to get into the details of what went wrong at my appointment or what's going wrong with my health. Instead, let's focus on the toll these long demanding appointments take. I was trying to calculate in my head, how many of these high stakes, invasive appointments have a I endured over my lifetime? I am almost 40. So the minimum I would say is 80. In the time just before and after my transplant, most times I had to go to the doctor at least once a week. So, let's add another, say, 24 appointments there. Right now, I got about once a month, 12 more appointments. During my leave of absence this year, I had 17 appointments over 25 days off. The math goes on and on.

The math is just as exhausting as the appointments are so let's just say I have had hundreds of days like today. And yesterday. The day I prepare for the appointment by timing my meds with an actual buzzer so that the levels will be exactly right, the day when I don't drink alcohol but push a lot of water, and don't eat anything too fatty so my kidney and liver functions will be as normal as can be. The next day I wake up an hour earlier than I need to do a nebulizer treatment so my breathing tests will look as good as they can, I lidocaine up my arm with a patch so the blood work won't hurt too bad, I skip breakfast and morning meds til after they check my levels, and I leave for the hospital hungry, tired and already needing 1/2 an ativan to get out the door.

I have my blood work done and unless it's Lilly, the phlebotomist I like, I get a passive aggressive lecture about how I must have bad veins, transplant patients have had so much work done, cystic fibrosis patients are always dehydrated, they hope they can find a good one. They don't believe me when I tell them I have good veins in my right arm and bad ones in my left from bad phlebotomists like them that tore up my arm trying to get a PICC line in when I was 19 and too naive to kick them out of my hospital room. I haven't gotten a line in my left arm since 1999, but that doesn't stop them from trying. They get their 5-10 tubes of the good stuff from my right arm tap, and I move on to a chest xray.

My chest x-ray goes mostly like yours or anyone else's except there are old notes in my chart about all the superbugs my old lungs had, and all the times my chest has been opened, and the superglue they used to put my lymphatic system back together after they cut it and it gushed into my chest cavity- so I get ushered back quickly with a mask and a gown and the students gather around to look at my film and the radiologist says something like "It's an honor to meet you." Legit. She said that once. Like I am Michelle Obama or the Queen of England.

I am the Princess of Radiology, and it is an honor to meet me.

What You Doin'? Home IV Therapy Schedule.

Well, it's been about six weeks of home and hospital treatment, and yesterday I finally got my port de-accessed. I am on a leave from work until I can be sure that I am up to returning (more details to follow . . . ), and I have been meaning to write a post that answers the question,

What do you do all day during your home IVs?

Here is my schedule from last week, without the med names to keep it simple.

8AM:
Take IV number 1. (30 mins)
Take inhalors and nasal sprays.
Do nebulizer 1 (10 mins)
Do airway clearance and manual postural drainage/cpt (20-40 mins)
Do nebulizer 2 (20 mins)
Take oral antibiotic, steroid, stomach medicine, special cf vitamin, probiotics and other meds for tummy, blood pressure pills (2), antihistamine pill to counter drug interactions, take vitamin K to prevent bleeding.

9AM:
Personal Care Routine: Shower inc. more airway clearance, Hair, Dress, Become generally glamorous

10AM: EAT

12:
Cardio Exercise, then eat more.
Take more probiotic
Sometimes, I would take a nap following my exercise.

3PM: Go to CVS.

4:
Sometimes I would have a nursing visit at this time to change my port needle, and to draw blood work.
Take IV #1 (30 minutes)
Do nebulizer 1 (10 mins)
Do airway clearance and manual postural drainage/cpt (20-40 mins)
Do nebulizer 2 (20 mins)
Take more probiotic

5: Take IV #2 (60 mins)
Talk on the phone with CysticLady and CysticMommy

6: eat

7: yoga.

8: Take more probiotic, cf vitamin, tummy meds, inhalors (2).

11: write my blog :)

12/"nn":
Take IV 1, 30 mins.
Final airway clearance. (10 mins)
Take antihistamine.
Get ready for general nn including sinus rinse. ew.

Also: at waking, noon, four, eight, "nn" and after exercise, I would take my blood pressure, check my oxygen and pulse.

Other medical things that happen during the week:
One appointment at the CF clinic (or three:); calling the oxygen company to get needed supplies; calling the nursing coordinator to schedule all this sort of stuff.

It's a busy job, but I have to do it!

More tomorrow, loyal readers! Love, CG

My Birthday Totally Blows

It is my 29th birthday today.

Girgle Girgle.

Last night I had a fun dinner planned with an attractive male companion.

Which is, you know, the perfect time for hemoptysis.

Girgle Girgle.

My night was ruined.

Later, getting ready for bed (alone, duh).

Girgle Girgle.

Sleep, ruined!

Today, on my way to rehearsal for a perfect

Oh wonderful play with a wonderful team of wonderfuls

Girgle Girgle Flood Spit Flood Spit Flood Flood Spiiiiit.

(Flashforward 12 hours)

To bed, in the ER, still waiting for a bed.

More tomorrow.

My Birthday Totally Blows.

(So just in case that wasn't clear, I had a lot of hemoptysis two times this morning, after 2 lesser times last night, and with my history decided to come on in. Now, waiting for a bed, started some IVs, tomorrow starting some hormones and getting my PORT put in. So keep those "your boobs'll be fine" comments coming. And I'll miss the rest of the play I'm directing with at least 2 new fabulous colleagues which was a wonderful opportunity to me that is now ruined, and and and I have to cancel a party on Saturday. And, it's my birthday. Have I said that already? So yes, I'm a brat right now. I'm going to bed now. So there.)

Love, CG

My CF Firsts

Another bloggy did this list, so I thought I'd take a crack at it. Shout out to Casey's blog. Check him out!

Since I first published this, other CFers have been posting their firsts. Here is one mom's account of her baby girl's CF firsts. It really shows how things have changed since Cystic Lady was born in 1976, and I in 1980: A Day In the Life of a CF Mom;

I have also updated my firsts to include their firsts to we can all compare :)

Here are some of my CF "firsts." I based my list on my own knowledge and memory, though Casey, I suspect, had to ask his parents for the info. (Uh...my parents still don't know about my blog). I will also share any memories I have.

My First . . .

Breath- 1980

Pancreatic Enzymes- As early as they could put 'em in my formula, I think.

Diagnosis- 6 months old. Earliest they could do it in 1980, I think.

Daily Vitamin- Age 3. Flintstones Complete.

Oral Antibiotic- Age 6 or younger.

First Asthma attack- 7 years old.

Halloween Costume in hospital - 8 Years Old. I was a red M&M. I remember the face of the nurse who helped me make it. It was a project for us.

CF Doctor and clinic- 6 mos. Dr. Gibson at Rush Presbyterian St. Luke's Medical Center, Chicago. He was the best doc I ever had.

Formal Exercise other than sports: Age 4. My mom made me and Cystic Lady (then more of a Cystic Kid) do this Mickey Mouse Club Exercise. It was lame. Following that (Age 8ish), she made us do this "Get In Shape, Girl" exercise for kids. It was similarly lame.

PFT- Not sure. I do know that Dr. Gibson said that according to my first try at a PFT, I was already dead. I have never been good at them.

Nebulizer treatment- Age 7 or 8?

Dose of Pulmozyme- About 13 years old.

CF Sibling: At birth, came to realize I have a 4 year old sister, Cystic Lady.

Non-CF Sibling: At birth, came to realize I have a 18 month old brother, Cystic Sibling.

Hospital Stay "Clean out": Age 8, where I really began to be afraid of hospitals.

Bad memories: being forced, screaming and in full tantrum (and I could create some doozies well into my pre-adolescence), into Chest PT with a machine. I had never seen a machine before. It was very loud. The PT woman was mean and hurt my wrist and I still sorta have a hatred for her; Remember being alone a lot and watching L.A. Law on tv; My sister having a separate room from me, as they just started to separate CF patients' rooms and/or they were afraid we would fight, me 8, she 12; my room was always dark; My IV came out in the middle of the night and soaked my bed with liquid. I had to get a new one in the middle of the night. Even then, I knew this was ridiculous; Nurse lady took me outside to a park and we played on a swing. Even then, I knew that this was supposed to be a kid-like experience for me in the middle of a bunch of adult-like experiences. I was not amused but put on a "wow, thanks," expression; Meeting two teenagers both w/ CF but I think they were unrelated. They had these horrible IVs in their arms that were some sort of long term IV that you could see run up the arm along with the vein and a sort of huge tagaderm over the whole thing. Their room looked like a dorm room and I thought, they must live here. They had posters on the wall and everything. I worried my sister would move in with these CF teenagers in their CF teen room; The word clean-out and me thinking it meant they were gonna go in me and get something out of me; Going back to third grade and doing show and tell with a stuffed animal mouse I got, and saying I got it in the hospital, then not wanting to answer when someone asked me why I was there, my third grade teacher, who I actually adore, then scolding me, "Why did you bring it up, then?"

Good memories: Making M&M halloween costume with a nurse. She brought the poster board and we made the straps out of ties from a hospital gown; Skating on my IV pole down the hallway; Learning to play pool in the "lounge;" Watching adult tv like L.A. Law and Thirtysomething all day and night; meeting my black roomate who had something really bad wrong with her, and no visitors. We got along great and my 8 year old brain thought she looked just like Tracy Chapman because they had the same hair; Someone gave me really adult nice-smelling shampoo to use; Visiting the nurses and eating candy from them; putting hospital-issue deoderant on the inside of my wrist to my elbow because that is where I thought my "underarm" was, then smelling powder fresh all day; Getting gifts like balloons and stuffed animals.

[...]

Dose of Tobi- I think, 12 years old. Prior to that, inhaled tobramycin mixed with saline and a needle, the old fashioned way.

Read "Alex: The Life of a Child:" Age 8.

Started thinking about mortality: Age 8.

Started realizing I'm gonna live through this chapter and then the next one too: Age 20

First loss to transplant: Age 13, my Godbrother. He was 19.

First time I really remember FEELING sick: Age 9 or 10 when my Gramma was visiting.

First hemoptysis: Age 22, at work filing papers: Gurgle Gurgle.

First major bleed (later diagnosed as Pulmonary Endometriosis): Age 24

First home IVs: Age 20

First home IVs with no hospital time: Age 29

First time I freaked out about my fertility: Age 24

First time as public advocate for CF Adult issues: Age 12. Ha! Youngest member of the Chicago "Chosen Few" group, who had to change their name after we realized, it wasn't "a few" people that were making it to adulthood with CF.

First time a relationship changed dramatically during/immediately following big changes in my health: Age 8.

First time without health coverage: Age 21, following graduation from college and without a job (Also, my last time.)

First PICC line: Age 20

I could go on!! Maybe I'll add more tomorrow.

What are your CF firsts?
CG

Boobs vs. Port: Smackdown. A Call for Info!

I need info from other Cystic gals! I am considering getting a port (or port-a-cath, which is an entry way for IV meds that stays in a person, long term), but love my chest the way it is. Meaning, I am a boob girl. I am fine to admit it, my chest is my best asset. I wear v-neck shirts and necklaces and love love love my body from waist to shoulders. I am not interested in fucking it up. I like it. Not because guys like it (I don't have big boobs even,), I just like it for me. Always have. It's a staple of my fashion sense and my sense of femininity.

Boobs and Port. Give me the info!

Does it feel weird if a man hugs you with a port? Can you feel it pressing? Does it hurt?

Can a man feel it with his hands? (When it's not being used for IV meds, I mean)

Does it heal closed between treatments? Like if you had 3 months with no IVs, would it heal up?

When you are doing IVs, how much "geography" of your chest does it take up? Is it like a PICC in your chest? Are you destined to sweatshirts and woolie sweaters while on IVs?

GIVE IT TO ME STRAIGHT, GALS!!

Love, CG

Sleep Debt: Forget Finances, Get Me A Pillow!

NEWSFLASH! "CYSTIC GAL" Exceeds 100 Unique Readers! Keep up the good work.
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This will be a short post, which is only appropriate because of its topic and timestamp. I recently finished a course of IV treatment with 0 days spent in the hospital thanks to Dr. U-Bird^ (see forthcoming entries for an explanation of this pseudonym-and if you're reading, Dr. U-Bird, rest assured this pseudonym is derived from only kind postings and ideas to follow). I think the course went well with this exception: I did not get enough sleep.

When I'm on home IVs, I usually have to take one of them every 8 hours. Sounds reasonable, right? So I take one at say, 11PM, and one at say, 7AM. Sounds good. But if I stay up til 11 to take the med, then it takes about 15 minutes to finish, THEN I put I head to pillow, THEN I fall asleep around midnight, the question is: WHEN DO I HAVE TO WAKE UP?

Despite what you may have assumed about my sunny funny CG attitude, I'm barely a human being in the morning. When I wake up, the order of events is as follows:

1) Have heart to heart with kitty
2) Take inhalers
3) Press "on" button on recently purchased cheap-ass coffeemaker lacking programmable timer
4) Feed kitties
5) Eat tasty morning treats trying not to fall asleep on couch
6) Watch humans talk on television, re-learn English language while drinking coffee
7) Take nebulizer(s)
8) Cough my f'in brains out (and sometimes the coffee too)

AND FINALLY

9) Accomplish anything more complex than the above such as
10) Do IV medication

I mean, it goes in my veins, people! I better be awake when I'm trying not to screw it up.

In order for this to happen around 7AM, I have to wake up around 6. That's only 6 hours of sleep, which was enough for my younger, more-robust self. But nowadays, I need like 8 or 9 hours to stay nice.

So now, two weeks later, I have a sleep debt to pay off and today I put in one long nap as a down payment. I feel the repo-woman coming . . . it's me!!

Goodnight,
CG