Ashley

Following is a note from my friend, Ashley. She is who was referencing on this post. She has some more symptoms, etc. and I was wondering if anyone can relate...

Hi Everyone I am Ashley the person Cindy spoke about in her blog. First of all, thank you all so much for your input thus far!! I am 24 years old. I originally got sick after a serious lung infection back in 08. I had always has Asthma, but My symptoms have continued to get worse through out this time in addition to gaining non-asthma related symptoms. I see doctors here in my home town, Duke and John Hopkins. Sad to say all three of my pulmonologists are stumped. I gave Cindy a short list of my symptoms in addition to the ones listed above I get mouth ulcers, blurry vision, easy bruising, sinus issues and the list continues to grow. I have had 3 bronchs and cleanings of my lungs. It makes me feel so much better when they clean out my lungs. My last Bronch was performed at Duke, they found white mass like things deep down my trachea, they didn't take a sample because they were too far down and too hard to get. the Doctor at Duke said he had never seen anything like them before, and thought maybe the masses were from the chronic cough. We were very hopeful that going to JH would give us answers, but I think this Doctor is stumped too. The Doctor from JH is going to try to get me a Vest. We think that will help the mucus. My husband percusses my back, but he just can't do it like we think the Vest could 15 mins is a long time for someone to try to beat at a time, JH wants it done every two hours. Please share any thoughts or suggestions.

Ashley does not have a blog, so leave your comments here. She is reading my blog now. :o)

Help needed, please

I have recently met a young woman, who has been seeking answers from doctors regarding her health. As she told me of her symptoms, I had a strange sense of Déjà vu. Her symptoms sound very similar to Reilly's. Of course, CF is always forefront in my mind, so I asked her if she had ever been tested for CF. She said that she has taken the sweat test, but her results were negative. She was unsure what the actual result numbers were, just that they were negative. After telling her about Reilly, she was kind enough to offer Reilly one of the nebulizers she has received, that was extra. We have really used it, and it has been such a blessing. But, her symptoms kept popping up in my mind. I wondered if she has true negative results, or if they were borderline, or if the test was even done correctly. Through this week, we have been corresponding by email, as she was asking about Reilly's vest and treatments. After receiving an email that laid out all of her symptoms, I decided to bring it to you...those who know CF personally, as well as many other types of diseases. It seems that a medical degree should come with a diagnosis like CF, and I thought that it would be beneficial to her to have your input. I asked if she minded if I asked my friends in the CF community these questions, and she responded that she would love to have your input. So, her are excerpts from two of her emails to me this afternoon. Help me, help her. She has been struggling for years, and it sounds like she is not getting any answers. She has gone to great hospitals (Duke for the sweat test, Johns Hopkins for other care), but she still has not been diagnosed with anything. Here goes:

Symptoms in her own words:

Chronic Cough, Major Shortness of Breath, daily fevers, exhaustion (I get really worn out easy and have to stop several times when walking long distances), joint pain (very painful joints, it feels like it is in the bone) and my left lung area is painful, extreme mucus (it is very sticky and thick, sometime yellow and bloody), stomach issues and reflux issues (either upset stomach or constipation it goes back and forth), and my bowels have mucus and sometimes blood. Constant respiratory infections, diabetes (which we just found out when I got sick two years ago) night sweats (when I take naps or sleep I will wake up wet, and sweaty), rashes on my face and chest, appetite goes up and down, headaches, the list goes on. I was always way under weight until the last year being on so much prednisone. I would get two meals and two desserts from colonial all at one meal time and loose weight instead of gaining. The prednisone has made me gain over 20 pounds in one year. When I was younger I wasn’t a healthy child. I remember having stomach issues, but the only thing they diagnosed me was asthma as a child.

Current treatment plan:
I take Alvesco which is a new drug on the market from Europe, an inhaled steroid. I believe thus far I am the only patient in EC who is using this drug. My Doc from Duke started me on it; I was on the Pulmicort (nebulizer form) however the Alvesco works much better. In the nebulizer I take Xopenex 1.25 every 4 hours, Acetylcysteine (mucomist) it is used with some CF patients, it thins the mucus, but smells and taste like rotten eggs. The drug does liquefy the mucus and helps. They have mentioned the Pulmozyme but said it could make my cough worse as the medication can irritate the airway. So we are going to use that as a last resort for now. I use regular saline in the nebulizer as well and that helps moisten the airways. At times depending, on my cough I use saline mixed with lidocane to numb my airways and help stop my cough so I can rest. Once I start coughing I can’t stop with out help from Tussinex or Tessalon pearls, but sometimes they don’t work, just depends on the day. I also get Xolair injections and Allergy injections to possibly help my breathing (or that’s what they hope). The Doctors did say these injections both Xolair and Allergy shots will take a while maybe years to see a difference. Please share my story with others, maybe it might strike an idea to someone, you never know.

Ideas? I recommended to her that she have the blood CF test, and have it sent to Quest labs. It sounds a lot like CF to me, but I know there are many, many other things it could be.

Wordy Wednesday

Well, I got behind again. Sorry about that, but as always, life is busy! My mother reminded me last night that I need to get on the ball and blog more often, so we shall see how I do.

Reilly is doing much, much better. I am afraid to say it out loud, so maybe if I type it, I won’t jinx her. :o) After many tears and cries to "leave it alone," she had her PICC line removed on Friday. The worst part, was getting all of the bandages and tape off, but I don’t think it hurt her otherwise. It was amazing to me to see all of that line come out of her tiny arm. It is a relief not to have to do the IV’s anymore, and even better that she can take a normal bath, without worrying about getting her arm wet!

She returned to school on Monday, which is good and bad. It is good, because she needs it! She needs to be back in the swing of things, learning, and playing with her friends. It is bad, because I want to keep her in a bubble! I worry so much about germs, the flu, and H1N1. At home, I know I can keep her healthy, but it just is not fair to her to keep her locked away. And, I know that the minor germs she is exposed to helps build her immune system, so, I guess we are back to it being a good thing. I just say a lot of prayers!

I have had a fantastic month with my Thirty-One sales. October was the best month I have had, bringing in over $10,000 in sales! I was just notified that I am top in sales for our downline, which consists of over 6,900 consultants. WooHoo! In addition to that, I won a Kodak Pocket Video camera, a portable DVD player, and the best prize of all...a 42" plasma screen TV!!! I truly love, love, love Thirty-One. They are all about celebrating, encouraging, and rewarding women. We also have some super-cute products for the upcoming Holiday’s, so be sure to check it out... www.mythirtyone.com/cindywinslow. The Holiday Gift Guide is at www.mythirtyone.com/holidayguide.htm. Be sure to check them out now!

I have to edit all of my Halloween pictures, so as soon as that is done, I will post Reilly’s pictures. She made a gorgeous Snow White! I hope everyone is well. I just heard about Lauren’s passing, so my prayers are going out to Brad and family. It never seems fair to lose someone so young. Breathe easy, Lauren.

At home...finally!

Reilly was finally released from the hospital last night. Can I get a Woo Hoo?!? Reilly & I have really enjoyed being at home last night and today, and she has decided that she doesn't want to go back to the hospital for a long, long time. I tend to agree!

She did come home on IV antibiotics, and well as one more by mouth. She is on Zyvox by mouth, Timetin and Tobramycin by IV. This, of course, is in addition to the rest of her typical meds. The IV meds have been pretty simple to administer, even though I was really nervous about it. I think the worst thing I have a hard time remembering is to open the clamp once I get her hooked up! She doesn't have the typical IV pole, but has the eclipse balls, which are the best thing ever invented! It makes this whole process easy and stress free, so that makes me one happy Mama! Timetin is given every 8 hours, and I am in the process of adjusting it to fit our schedules, and the Tobramycin is every 24 hours, and I am giving it at night before I go to bed.

There were several things I learned in the hospital, which kind-of surprised me. First, is that the nurses each want to do her meds differently. I don't know how many times I had to tell them the order of how we do them, and that she doesn't get her Zyrtec and Singulair in the morning, because they will make her sleep all day! Thankfully I know what she does, when it should be done, and was smart enough to tell the nurses that! The other thing that really surprised me the most, is in regards to the respiratory techs. Almost all of them wore perfume. And not just a little, but pretty strong perfume. I would have thought that as a respiratory tech, you understand that you come in contact with individuals who may be affected by the strong scent of perfume and have respiratory issues. Reilly didn't, but I just thought it was odd. They, too all tried to do her meds in a different order, or wanted to combine the meds in into one neb, at the same time, or something crazy like that. It sure is nice to be able to do her treatments on my own, without feeling like her meds are being held hostage!

We are certainly happy to be home. Reilly slept great last night, and slept right through her meds at 4:30 this morning. She slept in until after 9:15 this morning! We are working on getting back into our routine, which may take a little while, but it is great to sleep in my own bed! Thanks for everyone's thoughts and prayers, they mean so much to me and Reilly!

There's no place like home, there's no place like home

Seriously. After spending 4 nights in the hospital, and working on my 5th night in, I am ready.to.go.home! I know, I know, I have been a bad blogger again, and haven't updated in a month. So, I will back up and fill you in on the details.

Reilly came home Sunday before last from her Dad's house with a really stuffy nose, and slight cough. As the days progressed, she got worse and her cough increased substantially. I took her in to see her CF doc, and they decided to put her on a 14 day course of Bactrim, because it sounded as if her lungs were clear and it was sinus related. She had the highest FEV1 ever - 112, but typically her baseline is about 102. This was on Thursday, the 8th of October. We went home, increased treatments to every 4 hours and lengthened the vest treatment to 30 minutes, vs the regular 20 minutes per session.

On Tuesday, the 13th, she had a follow up appointment for the Tiger II study she is participating in (which is going great, by the way). Her cough has reduced in frequency, but the sound of her cough had changed. If you are a CF'er or parent of a Cf'er, you know what I am talking about.; that deep, cruddy sounding cough. Dr. E took a little longer listening to Reilly's chest, but decided that she was ok, but wanted to wait on PFT's.

Reilly's PFT's were in the 60's to high 70's. That was a substantial drop, and when the Respiratory Tech & I looked at each other, you knew the same thing was running through our minds. Dr. E was paged, and she ordered a breathing treatment immediately, as well as a chest x-ray. After that, we repeated PFT's, and got a slightly better number of 92. Since this was still such a huge drop in PFT's over a small number of days, we were given the option of hospitalization or strong home meds.

I took the route of being more precautious (is that a word?), over the wait-and-see type attitude. I was not willing to take the chance of causing damage to Reilly's lungs, since she has done so well to date. This is Reilly's first hospital admission, and after getting her in, I am glad that I made this choice. Her chest x-ray did not see any pockets of infection to be concerned over, but due to the sound of her cough and drop in PFT's, we felt this was the best route.

Reilly was admitted Weds. night, and has been given IV antibiotics through her entire stay. She had a PICC line placed (again - her first one) Thursday morning, and was told she will probably stay for 5 days. Tomorrow (Monday) she gets to do PFT's again, and if her numbers are higher, she gets to go home.

She will be going home on IV antibiotics, which will be a first for both of us, so I have lots of questions about those. Can she/should she go to school as usual? H1N1 is rampant among our area right now, so of course, I worry about that. Anyone have any tips and pointers?

Ahhhhh

That is the sound of me finally relaxing after a long, tiring day. Reilly started her appointments this morning at 9:30 am, and finished at 5:03 pm, with a little break in between. Let's start with the first one; clinic. Reilly impressed me right off the bat. She gained almost 1 1/2 pounds in 3 (yes, 3!!!!) months. Hooray!!! Her BMI went up to the 59th percentile from 54% in early June. Yippee! Way to go Reilly! I honestly believe that she has improved so much because her tonsils/adenoids were removed. She can breathe, swallow, and get a decent night's sleep because they are gone.

Then, I was able to answer all of the "has she had any..." questions with NO! No, SOB, no wheezing, no sinus problems, no colds, no fevers, no rectal prolapse, and on and on. Yay! Now, keep in mind that I am knockin on some serious wood here, because my confidence has a tendency to turn around and bite me in the butt when I make comments like that. But, I am happy that we had a great visit. In between waiting for nurses, doctors and the nutritionist, we met with the person in charge of the clinical trial. I think we will do just fine on the clinical trial, got the bloodwork done (with a lot of blood, sweat & tears), as well as the “squeeze.” We are starting the daily journal today, and will continue it until our next trial visit on the 15th. They adjusted her enzymes a little, since they thought she could use a little more per meal. Her PFT’s were great. She blew a 103! Woo-hoo! She loves to look at the visuals they have on the computer, which today were blowing the piggy’s houses down, blowing the kite up in the sky, and since her birthday is Weds., they made her blow out her birthday candles. I have been so pleased with the staff at CHKD, I cannot complain.

At 1:05, we were finally able to leave and get some lunch and do a few errands before her 4:00 ENT appointment. We got her ballet shoes, tap shoes, and dance attire so that she can begin dance lessons on the 9th, so she is tickled with that. We spent a liiitle too much time in Barnes & Noble, and were almost late for her ENT appointment, but we made it right on the dot. Everything checked out just fine at the ENT, and she does not need to be seen for a whole year.< src="http://farm4.static.flickr.com/3041/3107953727_4825cedfd0_o.png">

Anxious & nervous

Tomorrow will be a very long, draining day. Reilly has a regular clinic visit, followed by the first visit for the Tiger 2 clinical trial, and at the very end of the day, an ENT checkup. I'm not worried about the regular clinic visit or the ENT, but jut a little nervous about the trial visit. I don't really know what to expect, she will have to have labwork, which she hates, and she will have to do the dreaded "squeeze" (blood pressure). She can handle the throat swab, listening to her lungs, weight & height, but when it comes to the squeeze, she looses it.

Please keep her in your thoughts tomorrow around 9:30, when her visits begin. She is going to need all the support & encouragement she can get! Hopefully the trial visit will go well. I am anxious to get started on it, with hopes that she will get the real drug, and that it will help her out.

I am finally getting going on my Great Strides fundraising. I have a Thirty-One Gifts fundraising event Tuesday night, in which I will be donating the majority of my commissions to Reilly's Rebels, our team in the Great Strides walk. It is hard to believe that it is only 3 weeks away.

Reilly's birthday is Wednesday. She will be 6. 6!!! How did that happen? It seems like she was such a tiny baby. I am really struggling with what to get her this year. I planned on getting her a playhouse, but that idea has gone down the drain. Does anyone have any ideas? I am going to get off of work at 1:00 on Wednesday, so that I can go to her school & have a little party there, and then she starts dance!

She will begin tap and ballet classes, which we are both very excited about. I took dance for 5 years, and if I could have taken just Pointe, I would have continued. I loved it. She is soooo excited, she can hardly wait. Tomorrow between her appointments, we are going to get her dance outfit and shoes. Yay!

Well, I need to get some things here around the house done. I hope everyone is doing well!

Success!

Our cornhole tournament for our Great Strides event was a success today! Phew, man am I relieved! Several girls from Team HREM (the girls from my work) worked long and hard to make this event successful, and I am so grateful. We had a total of 18 teams enter the tournament, sold raffle tickets for 5 baskets of goodies, and a 50/50 raffle.

Although it was hot as blue blazes, it turned out perfectly! We were so worried that TS Danny would dump buckets of rain, but God blessed us with a beautiful day. Sunny, with a little breeze, but HOT. The final profit??? Just a little more than $1,000. WOW! So thank you HREM, as well as everyone who attended.

I also got the opportunity today at the tournament to meet Cara and P! We have chatted on each other's blogs, as well as Facebook, so it was great to put a face to the name and stories. She and P are super sweet, and I am so happy I was able to meet them! I have a feeling Cara & I will be getting together for a girls nite really soon. :)

I spoke to the Tiger 2 organizer yesterday. They will be evaluating Reilly at her clinic visit on September 4, so wish us well. Reilly will have to have bloodwork done, as well as the normal clinic stuff. She is not going to happy with me when I tell her that she has to have the "squeeze" done. (AKA blood pressure) I need to start practicing on her now. After the initial visit, she will be seen again the following week to get the results of the labs and get started on the meds. I spoke with Cara about it for a while today, since she will be finishing it up on September 9 (Reilly's 6th birthday). I'm excited, but just a little scared, too. I just hope that she gets the real med, and not the placebo.

This is my 3rd post this week, so I'm pretty darned proud of myself. Now, just to keep up with that! Hope everyone has a great weekend!! Please do continue to keep Kori & the boys in your prayers. Today was Richard's service, so I am certain it has been very difficult for them.

Breathe Easy, Richard

Richard has gone home to is Heavenly Father. Please say some prayers and send comforting thoughts to Kori and the boys.

It has been HOW long???

Holy cow. It has been OVER one month since I have blogged. How did that happen, you ask? Summer. Work. New side job. Reilly. Life. I hope to be better now that we are back to our normal routine. Here is a breakdown of what our summer consisted of:

Reilly spent every other week with her Dad.

I attended my first Thirty-One Gifts in-home party. Yay! Purses!

I become a consultant a week later. Yay! Additional income! Visit my website & learn more about Thirty-One hereReilly was accidentally hit in the face by 3 girls swinging on a porch swing at the babysitters house. This broke her glasses. The first time for the summer.Reilly lost her first tooth. At her Dad’s. (sniff, sniff)

Reilly decided that she would show off at said babysitter’s house, and took off her glasses, threw them on the floor, and stomped on them. Which turned into the second (and hopefully last) time she broke her glasses.

We spent a week at the beach (OBX), and loved every minute of it.

Reilly went bowling for the first time!

Reilly went on the pier and fishing for the first time and caught her first fish!Reilly spent her last full week with her Dad, making it 6 weeks of being away from me.

Reilly started Kindergarten. (boo-hoo!)

She cried when I picked her up from school on the first day. And the second day. And the third. We will see what this week entails.

I purchased a new car (Ford Flex), and saved $12,000 (!!!) off the sticker price. Thank you cash for clunkers, Ford rebates, and Ford “A” plan (Hubby’s brother worked at the Ford plant, and immediate family members get their Ford vehicles at a very, very discounted rate.)

Here we are!

Reilly has been very healthy through the summer, and I can only pray that it continues that way. I am gearing up on our Great Strides walk, since it is only one month away. Anyone want to throw some donations my way? I know some of you folks from around my area read my blog, so come off with it! Lol

I hope to get better at blogging. I really do. I enjoy it, but getting going on my Thirty-One business took a lot, and now that I have it up and running, I hope to have more time.

I will be hosting a fundraising open house to benefit our Great Strides walk, so if you would like to attend, please come, and bring some friends! It will be held at the Elizabeth City Bed & Breakfast on September 8 from 5-7. Come enjoy some guilt-free shopping for a great cause!