Thursday, June 23, 2011

20cm is HUGE!

When you hear centimeters you don't think of something being large. At least I don't. So when I heard that the polyp removed from my colon was 20cm I just said oh ok. She said it was big but I never thought it was THAT big!

20cm = 7.87inches!!!!!!!

Yeah something THAT large was sitting in my colon! Luckily it was benign.....

Wednesday, June 22, 2011

2 doc appointments rolled into 1 post

Clinic went really well for me! I lost a few points on the FEV1 scale but that is to be expected. Nothing significant though. I was 1.28L last visit and 1.22L this visit. Perfectly OK. Which means I am signed off and ready for surgery on the 6th! Pre-op is tomorrow morning where they are just doing some blood work. Then we leave for vacation on Sunday, get home Thursday night, Celebrate the 4th of July that weekend then Tuesday is prep and Wednesday I say bye bye to my lady parts.

She talked to one of the transplant doctors for me to find out about the Lynch Syndrome and being transplanted. They told her that it won't automatically disqualify me from being listed as long as I am diligent about screenings, which of course I have been. I have enough on my plate without developing cancer. I was glad she asked that since it was one of my questions for them on August 3rd. I will still be asking them questions about it but at least now I know going into it they aren't going to tell me to go home.

Last week I had an ultrasound done on my thyroid to check the nodules that were found on the CT scan. There is one on the left side of my thyroid which is super small and of no significance so that one they left alone. However, the one on the right side was larger than they like (anything above 1.5cm they biopsy and mine was 1.9cm) so they did a biopsy. Very strange procedure. First they numb the spot with lido-cane so you can't feel the needles being plunged into your throat. Then they take 3 samples with needles. Doesn't hurt at all but it feels so weird having someone deliberately pushing on your throat. Afterwards you have a small pinprick on your neck which I dubbed my one toothed vampire bite.

I knew something wasn't right with the nodules when the tech came back in to re-measure the nodule after showing the results to the radiologist (which is normal to do). Then my new thyroid doctor came in to explain everything to me. She also showed me the lump. It feels like a raisin in my throat haha! You can only feel it when I am swallowing thankfully. She said 90% of these come back as nothing and they just monitor the nodule to make sure it doesn't grow. But if it does come back cancer it is very easy to cure. No chemo, no radiation, just remove the thyroid and you are good to go. I am supposed to hear the results today so fingers crossed it is just a weird growth like all the rest of my body likes to do. I swear I am a growing field for nodules and polyps!

I also added 2 more doctor appointments to my already swamped summer. I need another CT scan done in August and I have my next clinic appointment on August 10th, the week after the transplant clinic. She was very excited about my stability this past month and said she feels, as do I, that I will be good through the summer. We both knocked on wood! One of my main focuses for the next month is to make sure to stick with my airway clearance and moving around. Especially post surgery. Coughing is going to be painful for a bit afterwards, but I can't let my lungs fill up with goo. If I start to feel crappy before my appointment I am to call right away. She trusts the doctor doing my hysterectomy though, since she did another of her patients last year. So that made me feel better as well. I was already trusting of her since she had mentioned the previous CF hysterectomy to me on my initial appointment, so I am glad it turned out to be my CF doctor's patient.

All in all I am stable and looking forward to a VERY busy summer with doctor appointments and vacations!

EDIT: Biopsy results are in and they were normal! I am not a cancer mine ;)

Thursday, June 16, 2011

In need of a Kidney Transplant - For a Friend

A friend in the CF world needs a new Kidney. At first they thought her sister was a perfect match but turns out she might not be able to help after all. They are in the NYC area. If you would be at all interested in donating please contact me via facebook and I will pass your message on to her.

Read more about the process here.

I hope each of you considers what an amazing gift life is! Think about it please.

Monday, June 13, 2011

A New Puppy

We have been talking about getting a puppy for a long time. Now it looks like it will be this summer for sure. I am really excited to have a puppy to play with and force me to get out and walk.


I am scared to love another puppy and go through what I went through with Maggie. Maybe I am overly emotional about it but I still well up with tears just thinking about her. She was my whole life. I feel like I lost a part of me when I had to put her down. And now I am opening myself up to pain like that again.

I know it will not be the same. She (P wants a female) will be the family dog and not just my sole companion. But I will be with her the most. I am home all day. I will be the one walking her, picking up her pooh, and taking her for her shots etc.

I am excited for the chance to love a pet again like her, but I am scared shitless. That was the WORST pain I have ever felt and I have lost friends, grandparents and a step mom.

I will be sure to post pictures when we do adopt her. I have my eye on a cutie as we speak...

Thursday, June 9, 2011

No one puts Baby in the corner!

Today I had my first ballroom dancing lesson. Can I just say I wish I had started years ago! It was a lot of fun. My biggest obstacle is not my lungs, but my control freak issues. I have to get used to a man leading me around the dance floor. We all know I am super independent so this will be the hardest part for me to master. But once I just relaxed, concentrated on the steps and the music I did really well. It helped my instructor was really good too.

I signed up for 5 more lessons which I can space out. That is nice since I have surgery July 6th and a bunch of vacations. I will get one more lesson in before we leave for vacation, and also before the deadline for the 101 things to do in 1001 days. Then the last 4 lessons I can space out at my convenience.

Lung wise I did better than I had expected. I didn't cough much, just a few "fake" coughs to get rid of the feeling. Once I was done and outside I let the hurricane of coughing start. It was a very good workout and I can tell my hips, lower back and arms will be hurting tomorrow!

One of my favorite movies is Dirty Dancing and I felt like Baby when she was learning to dance for the hotel performance. Even as I sit here and practice holding my arms correctly; shoulders down, head up, elbows up, arms stiff; I feel like her. And remember, NO ONE PUTS BABY IN THE CORNER!

Monday, June 6, 2011

Lack of O2 Makes Ya Think!

Today I exercised more than I have in a while. Real exercise, not the cleaning, laundry and food shopping that I tell myself is real (well the docs say it isn't but they should have 40% lung function then tell me that). Today I walked around the lake in my town. NOT the whole lake because that is like 2 miles or something like that, but about 1/4 of a mile I would say. Not too bad. I tried it at a brisk pace too. 5 songs on my iPod later and I was back at my car...huffing and puffing and hurting. My head was throbbing!!! On a good note I was able to cough up quite a lot of goo! Bree would have been proud.

The reason for the headache? 86% O2 stats the whole walk. I didn't use my O2 and I really should have. But I have yet to use it in real public yet. I've used it on the train when T and I were traveling to PA, so I could sleep. But nothing else. Now it seems I really MUST take it with me. But can I whine and say I don't wannaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!! Looks like a trip to REI or someplace like it is in order so I can get me a back pack to hold my portable concentrator. I don't think pulling the wheelie cart would work well and it's just too heavy to have on one shoulder for half an hour of exercise. I have Phillips EverGo if any of you have any ideas you want to share with me on back pack ideas!

So why did this all make me think you ask? Well as we all know it is very important to do your best thinking with less O2 in your blood than normal. Makes everything seems so much better right? Sensing the sarcasm yet? Well if not then look closer :)

After catching my breath and getting my O2 back to normal I sat in my Jeep. I sat there contemplating my upcoming transplant appointment. I found myself both excited and sad. Excited because I will be able to breathe for once, and sad because I need to get new lungs in order to breathe better. It truly is a bittersweet surgery.

Again you may be shaking your head and repeating that my FEV1 is decent. Most people I know waiting for lungs or doing the evaluation would kill for 40%. Me I don't feel like 40%. Most days I feel much lower. Inflammation and tightness are my issues, along with no inhaled or oral antibiotics to keep things at bay. Add into it my desatting with exertion and its a little clearer why I am going. 3 months ago when she first brought it up I thought for sure that I would not have to start the evaluation process yet. Now I wonder if it might be a good idea to do soon. Not so much because I NEED the lungs like yesterday, but because I can tell I will be a fast slider. Though I have been consistent and fairly slow since high school, the deterioration over the past 2-3 years has been much greater than the whole of the prior 10 years. I'm running out of coal for the fires...

My body is just tired.

Wednesday, June 1, 2011

Cystic Dreams Fund

Cystic Dreams

Everyone should check out this awesome site!

From one of the CDF supporters:

Many of you already know about the Cystic Dreams Fund, created in memory of Paul Mooney (aka "Q" or "Quoof" on here.) Because of this fund, part of Paul's legacy will be to financially help adults with CF. Eventually (soon, hopefully!) we be giving out grants to help adults with CF with their numerous expenses.

Those of us involved with the fund want adults with CF everywhere to know about this opportunity. So if you aren't already a fan, please visit our Facebook page and become one. My soap-making partner and I are giving 20% of our profits to the CDF this month. As part of our final push to gain more facebook fans and exposure for the CDF, we are having a raffle for a bar of soap. If you go to the CDF facebook page, become a fan, and then refer a friend or two, you are eligible to win. (Be sure to click "like" on the thread about this.)

Thank you for your support and for helping to spread the word to cystics in need!