tag:blogger.com,1999:blog-81860350203644067932024-02-19T01:50:05.336-05:00CF StephThis blog discusses cystic fibrosis, organ donation and life as I know it. My name is Stephanie. I have cystic fibrosis and received a double lung transplant on March 17, 2010. I would not be where I am today without the support of my husband, my family, my friends and last but not least my donor and his/her family.Cfstephhttp://www.blogger.com/profile/04593251793618584561noreply@blogger.comBlogger139125tag:blogger.com,1999:blog-8186035020364406793.post-4506384969679949442015-03-16T11:40:00.000-04:002015-03-16T11:40:14.859-04:00Where has time gone?I cannot believe it has been over 4 years since I have created a new post on my blog. My plan was to keep the blog going after my double lung transplant but I do not have nearly the amount of down time I had before my transplant. Before March 17th 2010, I spent many hours doing nebulizer treatments, IV antibiotics and chest PT via my vest. This gave me plenty of time to sit in front of a computer and blog away. I even had some time to blog for the first year after my transplant plus I had plenty to talk about. Now it is just about 5 years since my transplant and life has kept me busy. As I approach my 5 year anniversary, I have been spending time reflecting on all that I have been through. I decided it is time to start blogging again.<br />
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My blog posts have always been about my cystic fibrosis and my double lung transplant. I will still post about those things but life is about so much more now. I guess it has always been but from 2006 to 2011 those two things became my life but they are not me. One of my next post will be an introduction to me as an individual and not as someone who has cystic fibrosis or a double lung transplant. Before my introduction post, I plan to reflect on my life 5 years post bilateral lung transplant.<br />
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After these few posts, I am not sure where my blog will take me but I look forward to the journey.Cfstephhttp://www.blogger.com/profile/04593251793618584561noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-55319966901895474132011-03-01T21:01:00.002-05:002011-03-01T21:21:07.662-05:00March alreadyYes, I am a very bad blogger. It is not that I don't want to but finding the time is difficult.<br /><br />I have been trying to make the most of every moment I have with these lungs. I have been going in to work everyday. I have been working out 7 days a week. I am having fun trying new things. The College I work at have put a great wellness program together. Two days a week, get beat up in boot camp. I love it because you can push yourself as much or as little as you want. One day a week, I enjoy hula hooping class and the other two days I take aqua fitness. Three to four times a week, I have been joining my husband at the gym and lifting weights. I want to be buff by bikini season. Ha Ha Ha.<br /><br />I have been able to spend more time with my friend, Andrea and her children. Andrea has been a great friend to me for over 30 years and I am so glad we have been able to enjoy each other's company more often.<br /><br />I am starting to do more travel for work. I haven't flown yet but plan to in the next six months. I also am becoming more active with the Alumni Association at Saint Joseph's College of Maine where I work and graduated from in 1998.<br /><br />In two weeks, I am starting my MBA in leadership degree. My plan is to be done by December 2013.<br /><br />Next weekend, I will be spending time with two of my favorite girls. We are going to Boston for two night and then Cape Cod for two nights. I can't wait. We always have a blast together.<br /><br />I have been enjoying time with my family and my husband. I have been able to spend time with my sisters and their children. <br /><br />Tomorrow, I go to Brigham and Woman's for my almost one year anniversary appointment. I can't believe how far the time has flown. With all the ups and downs I would not change the past year for anything.<br /><br />Life has been good to me and I feel blessed to have been able to wake up and breathe with ease over the past year. As aways this blog is dedicated to my donor and his/her family.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-56745178048246798332011-01-21T13:54:00.004-05:002011-01-21T14:06:12.472-05:00Transplant AnniversaryI would like all my transplant readers to comment on this blog with the type of transplant they had , the date. a little about your surgery and where you had it. I want to show everyone how many people are helped by the generosity of organ donation.<br /><br />My information: Double Lung Transplant started on 3/17/10 end on 3/18/10. Came of the vent 3/20/10 after needed to go back in to surgery on 3/19/10. I had my transplant at Brigham and Women's Hospital in Boston, MA. I was released on 3/31/10. I spent a total of 13 nights in the hospital after my transplant.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com11tag:blogger.com,1999:blog-8186035020364406793.post-25330526860180583492010-12-29T07:43:00.006-05:002010-12-29T08:13:51.508-05:00December<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOamF7zjPpcBV-X97ohYTEeTJ9Yol0Zibc1cNPsyCyRTVezJOdJACHgomch45NFqRhyphenhyphenmSScVkgCWfazRCaq7omDMEjvqnUW6jGFB_UnRcqhsv32V8zrwZAybzuRpUBhdfJUVZPD0LRvkY/s1600/S1030972.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5556090865450172370" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOamF7zjPpcBV-X97ohYTEeTJ9Yol0Zibc1cNPsyCyRTVezJOdJACHgomch45NFqRhyphenhyphenmSScVkgCWfazRCaq7omDMEjvqnUW6jGFB_UnRcqhsv32V8zrwZAybzuRpUBhdfJUVZPD0LRvkY/s320/S1030972.JPG" /></a> My Nana and I </div><div align="center"><br /></div><span style="font-family:georgia;color:#330000;">I cannot believe it is already December 29th. Two more days and 2010 will be over. What a year it was! I want to take this post to reflect on the month of December. My next post will be a reflection of 2010.<br /><br />Lots have or will happen this month:<br /><br />What has happened:<br /><br />I made it through Thanksgiving and Christmas festivities without being hospitalized or needing IV antibiotics.<br /><br />I attended 5 Christmas gatherings in 5 consecutive days without becoming extremely sick or exhausted.<br /><br />I went to stores to do my shopping instead of doing it 100% online like past years.<br /><br />I had my nine month anniversary of my new lungs.<br /><br />Went to transplant clinic and don't need to go back for 3 months.<br /><br />I ran/jogged my first mile post transplant. Then did it 2 other times.<br /><br />Made Christmas dinner for my husband.<br /><br />Put up my Christmas tree all by myself.<br /><br />First Snowfall.<br /><br />First time shoveling the deck and stairs with new lungs. No cough or shortness of breath.<br /><br />First time snow shoeing.<br /><br />Took the step to never have my own children. Yes, my surgery I had was a tubal ligation.<br /><br />First sinus infection with new lungs. Only needed a z-pack (5-days of Azithromycin) to feel better.<br /><br />What will happen:<br /><br />I am having my port removed on 12/30/10.<br /><br />I will celebrate my 35th birthdayon 12/31/10!<br /><br />I will see in 2011 breathing easy on 12/31/10!</span><br /><br /><div align="center"><span style="font-family:georgia;font-size:180%;color:#330000;"><strong><span style="font-size:130%;">I hope you have a safe New Years Eve!</span> </strong></span></div>CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-15032570607351261632010-11-27T20:03:00.002-05:002010-11-27T20:41:48.335-05:00ThanksgivingI have so many things to be thankful for this year and not a minute went by on Thanksgiving that I did not think of my number one thing: my donor.<br /><br />What a wonderful feeling it was to be able to enjoy the day without coughing or using oxygen. I can't tell you the last time I was able to spend a Thanksgiving without having a home health nurse come visit me or that I was had the energy to drive 2 hours to my <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">hometown</span>, visit my in-laws, my dearest friend and her family, go to my parents house, eat, watch football and then drive 2 hours home. I have never been able to just get up and decide to go black Friday shopping. It was always plan to go, wake up to do my <span id="SPELLING_ERROR_1" class="blsp-spelling-error">meds</span> and then go when I had someone else to go with me. This year I got up at 3am and looked online for deals. Then I figured I was awake so why not venture out. The roads were <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">icy</span> but that didn't stop me from shopping from 6am until 3pm. I got 99% of my Christmas <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">shopping</span> done and my groceries. By 7pm, I was <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">asleep</span> on the couch. My husband woke me up and sent me to bed. Then at 9pm, he woke me up to take 2 pills and then I was fast asleep again. No skipping a <span id="SPELLING_ERROR_5" class="blsp-spelling-error">neb</span> <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">treatment</span> or vest treatment because I was too tired or even staying up for a hour longer than I felt like.<br /><br />Today, I got to watch lifetime movies all day. I started a walk <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">around</span> noon but I got about a 1/2 mile down the road and I started getting all sweaty and <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">shaky</span>. Not because it was warm out either it was only about 35 degrees. My blood sugar dropped so I headed back home. I <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">checked</span> my blood sugars and it was 66. I ate a Turkey and stuffing sandwich with some milk. Once my belly was full, I turned on Lifetime and feel asleep. At 3:30pm, I looked outside and it was snowing. I bundled up and brought the dogs for about a 2 mile walk. It was <span id="SPELLING_ERROR_10" class="blsp-spelling-error">tougher</span> than I thought because the roads were covered with snow and ice. It was a workout staying on my feet. It is so wonderful going for a walk in the cold without the cold air taking my breath away or making me cough so hard and so much that I wish I would had worn a depends. HA HA HA.<br /><br />These are just a few of the things that reminded me to be thankful for my donor and his/her family. I know it was probably a tough Thanksgiving for them because the recently lost their loved one. I hope that someday I can share the memories with them that were made possible by their decision to donate their loved one's <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">organs</span>.<br /><br />I also am thankful for all the people that loved and supported me over the past few years. There were so many <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">people</span> in my communities that cheered me one and still do. It means so much to me.<br /><br />All last week, I thought about the people that went above and beyond for me in the past few years. There were those that took me shopping because I couldn't carry my own bags. The people that called and talked with me to help me pass time while I was in the hospital or at home because I was to ill to have a social life. The many people that sent me cards or thoughtful gifts while I was recovering from my surgery. The people that took the time out of their busy life to bring me to my appointments <span id="SPELLING_ERROR_13" class="blsp-spelling-corrected">whether</span> that was in Boston, Portland, <span id="SPELLING_ERROR_14" class="blsp-spelling-error">Buxton</span> or Windham. Of course, I thought about the Doctors and Nurses that took care of me in the past and that still continue to do so. There were two people that I thought about most, the two that finally convinced me it was time to go active on the transplant list. I didn't name names because those that did these things know who they are. I know if I named everyone that I am thankful for, I would leave someone important out.<br /><br />I hope everyone took some time to be thankful to those that have made a difference in their lives this Thanksgiving.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-91736162930249877172010-11-10T12:00:00.004-05:002010-11-10T13:37:46.077-05:00Almost 8 months post transplantIt has been a while since I have posted. I have been pretty busy enjoying these lungs. I might have over done it because my lung functions have dipped over the past week. I am going for a <span id="SPELLING_ERROR_0" class="blsp-spelling-error">bronch</span> next week to see what is going on in these precious lungs.<br /><br />I have been doing great with the blood sugars. My A1C ( 3 month sugar average) was 5.8. The American Diabetes Association recommends an A1C of less than 7.<br /><br />The sores in my mouth are gone and have been since the end of September. I have gained weight. I currently weigh the most I ever have.<br /><br />My work is holding a physical training session called boot camp. We do all kinds of neat things. Everything from salsa dancing to kick boxing to weight training and <span id="SPELLING_ERROR_1" class="blsp-spelling-error">cardio</span>. I do it 2 days a week for an hour. The other days I have been taking my dog for walks in the morning and evening...weather permitting. I would attend boot camp more but right now I only go to the office 2 days a week. The other 3 days, I work from home.<br /><br />I can't believe how quickly the holiday season is approaching. I have never been a big fan of this time of year so let's hope these new lungs give me a different out look at this time of year.<br /><br />So a break down of what I have been up to:<br /><ul><li>Returned to the office 2-3 days a week</li><li>Concentrated on getting in shape while gaining weight</li><li>Slowly decreasing the number of doctor appointments I have</li><li>Visited my hometown twice in the past 2 weeks</li><li>Went up to camp a few times this fall (very cold)</li><li>Attended a funeral (cried a lot)</li><li>Have been spending a lot of time out side with my 3 dogs</li><li>Attended a retirement party</li><li>Helped out for a fundraiser for the American cancer society</li><li>Painted my first piece of pottery</li><li>Spent my anniversary weekend in Burlington, VT</li><li>Took a cruise on Lake Champlain</li><li>Spent the weekend with Brittany who is currently going to <span id="SPELLING_ERROR_2" class="blsp-spelling-error">UVM</span></li><li>Done a lot of shopping</li><li>Bought a lot of new shoes and clothing</li><li>Purchased a really expensive air purifier/vacuum cleaner</li><li>Ate at some really good restaurants and had some fantastic meals</li><li>Tried bake escargot...not a fan</li><li>Got to spend some time with my hometown friends Tracy, Andrea and Ryan</li><li>Spent some quality time with my mom and dad</li></ul><p>Things I need to do:</p><ul><li>Visit both my grandmothers</li><li>Visit my extended family more</li><li>Take time to enjoy the holidays</li><li>Get my lung functions back to my baseline</li><li>Go back to work in the office 3-4 days a week</li><li>Spend more alone time with my husband</li><li>Keep up the exercise once boot camp ends in December</li><li>Stop spending so much money</li><li>Get my business plan written up for my non-profit over the winter month so I can start fundraising this spring</li><li>Start on my Master's degree in the Spring</li><li>Start eating healthier</li><li>Spend more time with my 2 sisters</li><li>Go to a Celtics game</li><li>Get to a concert</li></ul>CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-38000391004959820442010-09-21T11:33:00.003-04:002010-09-21T12:51:19.853-04:00Things that have changed after 6 monthsIn April, I wrote this blog <a href="http://cfsteph.blogspot.com/2010/04/post-transplant-thoughts.html">http://cfsteph.blogspot.com/2010/04/post-transplant-thoughts.html</a>.<br /><br /><br />Some of the things that have changed is I can drive and run. I will admit I don't run like I thought I would post transplant. Though I am much more active than I was.<br /><br /><br />The hunger should be coming soon since my mouth sores are almost gone and I am not having pain when I swallow.<br /><br /><br />My pain is slowly going away. It is nothing like it has been in the past but my body has been through a lot of ups and downs in the past 6 months so a little pain is okay to me.<br /><br /><br />The number of medical appointments are a lot less.<br /><br /><br />I am back to work and I even go in to the office a few days a week.<br /><br /><br />I am on less medications.<br /><p>Less side effects from medications.</p><br /><p>I am able to swim.</p><p>My finger nails are the longest they have ever been in my life.</p><p>My <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">bald spot</span> on my head is almost filled in. That was from the fluid they pumped me with during my transplant.</p><p>I have gone to camp about 9 or 10 times this summer. I still plan on going up this fall and even this winter. </p><p>I had no issues breathing in the humid weather.</p><p>I don't cough going from hot to cold.</p><p>I can do laundry, sweep and mop the floors without getting out of breath. Not that I like doing those things but Brian likes that I can help out.</p><p>I did a 3.5 mile walk for <span id="SPELLING_ERROR_1" class="blsp-spelling-error">ALS</span> 2 weekends ago and never once needed to stop to catch my breath.</p><p>I don't need home health any more though I miss my <span id="SPELLING_ERROR_2" class="blsp-spelling-error">VNA</span> nurses.</p><p>My medicines have caused me to need to treat my blood sugars. I have been on insulin for 4 months. It is just a new way of life but I can breathe so I will deal with it.</p><p>I went to my <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">niece's</span> soccer game and didn't need to wear oxygen to walk to the field from my car. I loved that some of her teammates came up to me and notice I wasn't wearing it.</p><p>I am sure there is so much more but this is a good list to begin with. I will update this every several months.</p><p>These thing were all made possible by my wonderful donor.<br /></p>CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com2tag:blogger.com,1999:blog-8186035020364406793.post-70972916355142585122010-09-10T10:54:00.002-04:002010-09-10T11:22:41.380-04:00Hello Blog worldI feel like I have been out straight. I have absolutely no news about the rattle in my throat or the sores in my mouth other than they are both still there.<br /><br />I have gone in to my actual work office at the college four times in the last week. I needed a change from everything pre-transplant. My goal is 2 times a week.<br /><br />I have spent most weekends up to our camp. We have the addition almost done. We are putting the roof on now. I will probably make it up there for or five more times before snow flies.<br /><br />This weekend, I am doing an ALS walk with my husband and then going to my nephews birthday party. Sunday will be a day for me. I love those days.<br /><br />It is weird not going to Boston every week. I don't go back until October. I have a CF appointment in a few weeks. Plus I need to schedule an upper endoscopy because of some pain that I have when I eat and we have already ruled out acid reflux. I am going to my first dental cleaning since my transplant on Monday and getting my first IV of reclast for my bones. So even though I am not in Boston, I am still pretty busy with appointments.<br /><br />I think I am going to take the next two Fridays off. Maybe next week, I'll use my gift certificate for a manicure or pedicure. Time to pamper me a little.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-7777434311514375612010-08-19T10:23:00.002-04:002010-08-19T10:44:04.185-04:00Home and IV freeI guess the title says it all. I came home last Tuesday from the hospital. Went to my appointment in Boston on Wednesday. Finished my IVs on Sunday. The sores are almost gone. I have one sensitive area on my gums but all the white spots are gone. I guess the conclusion was they were caused by one of my anti-rejection <span class="blsp-spelling-error" id="SPELLING_ERROR_0">meds</span>. So They took me off it and will replace it with another drug when my mouth is 100% healed.<br /><br />I still have the rattle/congestion in my throat. No one seems to have any idea why. It is really bugging me. I am going to have a <span class="blsp-spelling-error" id="SPELLING_ERROR_1">bronch</span> next week and they will check out my vocal cords to see if anything is wrong with them. I am still a little tired but not as bad. I feel like I need a nap around 2:30pm and I have a hard time getting out of bed. Maybe I am just bored.<br /><br />Yesterday, I went in for a bone <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">density</span> test. I don't have any results yet. Then I went to my office. I really needed some social interaction. I don't think being home all day alone is healthy for my mental status. I guess it makes me feel like nothing has changed since the transplant. I am going to start going in to the office 1-2 days a week. Yesterday was good for me because it made me feel normal again. <br /><br />I need a real vacation. Yes, I go up to our camp a lot but I did that <span class="blsp-spelling-error" id="SPELLING_ERROR_3">pre</span>-transplant. I need a real get away. An actual vacation. I need to find out when I will be able to travel because I need to get out of New England. The <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">furthest</span> away I have been in 2 years is Pennsylvania. Brian and I both deserve some time away to just relax and breathe! It has been a crazy couple of years.<br /><br />This weekend I am going to The New England Country Fest with Andrea, her mom and her aunts. Brad Paisley is the headliner. I am so excited. I will be nice to just be and have fun without worrying about everything else.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com2tag:blogger.com,1999:blog-8186035020364406793.post-19916010429921555282010-08-09T17:47:00.002-04:002010-08-09T18:19:22.141-04:00This is crazyWell I came in to Maine Medical center on Monday August 2<span class="blsp-spelling-error" id="SPELLING_ERROR_0">nd</span>. I came in because I was extremely tired, my lung lung functions were down, the sores in my mouth were getting really bad and I just didn't feel good. Fast forward a week later, the sores are starting to go away, my lung functions are up 8%, I am not as tired and I am starting to feel a little better. Now that I am eating solid foods I am noticing that food <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">feels</span> like it is getting stuck in my throat. So they want me to do a barium swallow test. Maybe that is one of the reason my lung function is down. Who knows.<br /><br />I am hoping to be released tomorrow so I can go to my clinic appointment on Wednesday. I have been on IV antibiotics. I think they helped a little. I am sure they will send me home on them for another week. I am hoping to get over all of this soon so I can get back to living life again.<br /><br />My <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">friend</span> Beth, is having a tough time. She got her transplant almost 2 weeks ago and she had to go back to ICU because of some <span class="blsp-spelling-error" id="SPELLING_ERROR_3">chyle</span> fluid around her lung. I guess it was from a tear in on of her lymph node that runs along her abdomen. They were suppose to do surgery on Sunday to fix everything. I hope it went well so she can start healing. Please send thought and prayers her way.<br /><br />"Mama always said life was like a box of chocolates. You never know what you're gonna get."- the movie Forrest <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Gump</span>CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-39304427736587432312010-07-29T11:24:00.003-04:002010-07-29T12:38:40.239-04:00A little good newsMy CF friend <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Cysticgal</span> or Beth got her lungs. I am so <span class="blsp-spelling-error" id="SPELLING_ERROR_1">happ</span>y for her. I am also happy that she got the call from the center close to her home. That will make life so much easier for her. I know she will get great care because I have. Last I have read, she is off the vent still in ICU. I hope she is getting the same exceptional care that I got for the ICU nurses. Maybe she will be blessed with Kathy.<br /><br />I need to go in for a CT scan of my lungs to see if either bug is effecting them. I grow out two different bugs in my last sputum culture: <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Pseudomonas</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Stenotrophomonas</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_4">maltophilia</span> (I think). These are two bugs that I have grown out with my old lungs so they are probably hanging out in my sinuses or throat. Once the CT scan is done then the Doctors will decided how to treat it.<br /><br />I don't know if I have blogged about the sores in my mouth or not but they have been there for over 4 weeks. I have seen a dentist, my CF doctor, the transplant clinic, my primary care <span class="blsp-spelling-error" id="SPELLING_ERROR_5">FNP</span>, my <span class="blsp-spelling-error" id="SPELLING_ERROR_6">ENT</span> and an oral surgeon. No one has any idea what they are or why I have them. The oral surgeon gave me penicillin for 7 days thinking that might help...nope. I go back to see them on Monday to see if they are getting better and if not come up with a new plan of action. One of the biggest issues is my white blood count is 3.5. Which is low. Normal is 4.5 to 10. So my body just doesn't have the extra to fight off these sores. Next week, I'll stop one of my anti-rejection drugs (<span class="blsp-spelling-error" id="SPELLING_ERROR_7">Cellcept</span>) to see if that helps the sores. My gums are super <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">sensitive</span> and the minute I touch them with anything like a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">toothbrush</span> or food they form sores. Trust me I have good dental <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">hygiene</span>. I brush 2-3 time a day and use mouth wash 2-3 times a day. I was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">flossing</span> 3-4 times a week until these sores <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">appeared</span>. Wow got to love being <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">immune</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">suppressed</span>.<br /><br />This blog is not meant to be all about medical issues but that is about all I have going on right now. The good thing is none of them seem life threatening.<br /><br />I have the weekend to myself. I am so happy about that. I don't think I have had a weekend like this since long before my transplant. Brian is going up to camp tonight until Sunday. My only <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">definite</span> plans is to go to my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">niece's</span> birthday party Saturday evening. I think my parents will spend the night on Saturday after <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Rheana's</span> party. I am hoping to meet an old friend for lunch tomorrow.<br /><br />I will leave you on this note:<br />"It's not the size of the dog in the fight; it's the size of the fight in the dog." - Mark TwainCFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-46287407771247290282010-07-22T17:47:00.002-04:002010-07-22T18:09:44.270-04:00I am so badMy life has been very hectic and frustrating. I guess I haven't been blogging because I don't want to sound like I am complaining. I never forget each day how blessed I am to have these beautiful lungs.<br /><br />The past 5 weeks we have been trying to figure out why my FEV1s and my small airways dropped. They finally hit bottom 2 weeks ago. Last week the were stable and this week my FEV1s increased 5 % and small airways went up 7%.<br /><br />I did 2 weeks of inhaled Tobi and 3 weeks of levaquin. I had a sinus CT scan. I am in the process of doing a PH probe test today. My chest x-rays still look good and my biopsy at the end of June showed no rejection. I am really frustrated and want an answer. My CT scan was fine. The ENT said I had the clearest sinuses he ever saw for a CFer. My sinuses are wide open.<br /><br />I am hoping that the sputum culture that I did on Tuesday will give some answers because I don't think I the pH probe will come up with any answers. If nothing shows up with all these tests, B&W Hospital will repeat the bronch and biopsy.<br /><br />I am down to 5 mg of prednisone. My blood sugars are pretty stable with the help of some long acting and short acting insulin. Not sure if this will be a new way of life or not. Only time will tell.<br /><br />The good news is I am not experiencing any shortness of breath. No fevers. 100% oxygen. So I sit here scratching my head. I have been spending a lot of time up to camp. Last weekend, I went to OOB and enjoyed the beautiful weather beach side. Sunday, I went to my first Redsox game post transplant. It was very hot but I loved every minute. Felt great to walk up the bleachers with no oxygen, no CF cough and no shortness of breath. I am loving every minute of this even the little bumps along the way.<br /><br />I have been busy enjoying life while all of this is going on.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com2tag:blogger.com,1999:blog-8186035020364406793.post-26242698643586059242010-06-28T14:57:00.002-04:002010-06-28T15:11:36.947-04:00Yucky Sinuses!I have been battling a sinus infection for a few weeks. I thought it allergies but it moved into my airways. Now I have broncial pnemonia. So I am on inhaled Tobi and levaquin for 2 weeks. I feel like I just can't catch a break.<br /><br />I am still waiting for results from my biopsy. Please pray for no rejection. My body needs a break. My lung functions are down quite a bit but the doctors think it is from the pnemonia. Let's hope these meds work and I bounce back quickly.<br /><br />I met with a diabetes doctor a few weeks ago. it seems like my blood sugars are under control. I am hoping that now my prednisone amount is down to 7.5mg, I will see a difference in my numbers. I didn't take my long acting insulin last night (I had a brain cramp) and I woke up to a blood sugar of 119. I was very happy with that!<br /><br />Other than the continuous health issues life has been pretty uneventful. I have been going up to camp just about every weekend. A weeks ago I went to see Lifehouse and Daughtry in concert with my husband and my darling friend Andrea. The week before that Brian and I bought a 1999 Heritage Harley Davidson. It is so much nicer than our 1982 roadster. We have been on a couple of rides. We have been out on our boat once and took a boat ride on Brian's uncle's boat this weekend. It has been pretty nice weather here in Maine.<br /><br />I am excited I got tickets for Maine Day at the Redsox on July 18th. This will be the first game I have been able to go to in a few years. Last year, I just didn't feel healthy enough to go. It will be nice to walk from the parking garage to the park without needing oxygen.<br /><br />I am still going to Boston just about every week. I still can't drive so I am starting to feel like a burden on my friends and family. I hope they give me my driving privileges back soon.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-69427400446755563192010-06-11T12:35:00.002-04:002010-06-11T13:02:52.440-04:00Friday updateWell, this week was an interesting one. It started out with an itchy ear, a dry cough and GI issues. On Wednesday, I went to my transplant clinic. My lung functions were the highest yet and my x-ray looked good so they were not too concerned with the cough. What they were concerned with was my blood. My potassium levels were high, my white blood cells are very low and my blood sugars have been out of control. Plus they are concerned with the GI issues. So I had to go get an EKG to make sure the potassium was not harming my heart and then had to repeat the potassium blood test which came back in the normal range. Because it came back normal they did not make me take the treatment for it. For my blood sugars they added some long acting insulin twice a day. As for my GI issues, I got to do 3 lovely stool samples and a stomach x-ray. I don't know why I am not glowing from all the x-rays. Good news, no <span class="blsp-spelling-error" id="SPELLING_ERROR_0">CMV</span>, C. Diff. or bowel obstruction. Even better news my GI issues have seemed to gotten better. I am afraid to even to write that and jinx myself.<br /><br />After my long appointment in Boston, my sister, Tonya, her 2 boys, Martin and Chase and I all went on the duck tour of Boston. All the years that I have been going to Boston, I had never done a tour. So Tonya and I thought the boys would really like it. I think they did until both boys peed their pants. Note to self, don't take a 3 and 4 1/2 year old on a vehicle for 1 1/2 hours with no bathroom. The best part is Chase, the 3 year old was sleeping on Tonya when he peed so she got soaked with pee. Martin was about 1 minute from getting off the duck tour when her peed. I felt so bad for him because he had held it for like an hour of the tour. After the tour we had to walk through the Copley Mall to get to the car to get a change of clothes. Poor little Chase cried for his daddy the entire way through the mall and I was the one holding his hand. I felt like someone was going to stop me to see if he really belonged with me.<br /><br />So I still have the cough but now it is assisted with a sore throat. I just walked for 40 minutes and feel better. I have a high school graduation to attend tonight. Last year, when I went I had oxygen in tow. Wow, how things can change in a year.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-83261879722665237352010-05-28T19:49:00.002-04:002010-05-28T19:59:47.027-04:00Stomach BugWell, I got home on Sunday. The IV steroids were fine but something happened to my stomach while I was in the hospital. I threw up like 5 times in the hospital, 3 times on my way home and then a couple other times this week. I had horrible stomach pains and GI cramps. Last night, I was awake most of the night in pain plus had my first fever post transplant. I was a little scared and freaked out. I call B&W today and they want me to call and see them if the fever returns over 100.4. The nurse said that something is going around and I probably picked it up.<br /><br />My lungs feel great. I still have some sternum pain. I will be glad when that is gone. The pain is a different type of pain that I have felt before. It is like a burning feeling. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Tylenol</span> seems to get me <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">through</span> the day but by evening I have had enough and take 1/2 of a pain pill. It helps take the edge off.<br /><br />Brian and I are going to camp this weekend. We both took a few extra days off. The weather looks great. Most of my family will be up there too. This will be my first trip up to camp since September. I am excited to do the things I haven't been able to in years. I wish that my pain was 100% gone but I know it will come in time.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com4tag:blogger.com,1999:blog-8186035020364406793.post-49410874076821353512010-05-20T20:13:00.003-04:002010-05-20T20:29:51.744-04:00Little Bump in the roadAny one who has gone through a transplant knows the journey is full of ups and downs. I got a call from my nurse <span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">coordinator</span></span> at the transplant clinic today and I have mild A2 acute rejection found with my biopsy on Tuesday. I don't really feel much different other than a little tired, I breathe a little harder walking up hills and a little pain in my lower ribs/lungs (not really sure where the pain is coming from). So i will be going to Boston for 3 days for IV steroids. This is a little bump in the road and I have nothing but positive thoughts about this. I am so glad we bumped up my biopsy. Thank God for Dr. DD. <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">LOL</span></span>! She is the one that suggested it after a 5% drop in my lung functions.<br /><br />This will make the third trip to Boston this week. I should just change my residence. Luckily, I love my transplant clinic and Brigham and Women's Hospital.<br /><br />My scar is healing and fading nicely, I will post some pictures next week.<br /><br />I am so happy to say that James got his transplant at PENN yesterday and already has his vent out. I am so excited for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">him</span> a<span class="blsp-spelling-error" id="SPELLING_ERROR_3"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">nd</span></span> his family. Thank God for donors and their families.<br /><br />I got out and went for a nice head clearing walk. Along the way, I stopped at the lake and played with my dogs for about half hour. I really needed a little time to myself.<br /><br />i am hoping that these <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">steroids</span> make me feel better than I could imagine. I knew last week before I did my <span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">PFTs</span></span> that they would be down. That must have been a sign for me. I guess I need to learn to listen to my body and figure out what it is trying to tell me. This is so different that the past but so worth it. I still would not change anything! I was always told, what doesn't kill you will only make you stronger. I am a true believer in that!CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com3tag:blogger.com,1999:blog-8186035020364406793.post-70941100193176940962010-05-13T15:23:00.002-04:002010-05-13T15:34:07.733-04:00New BeginningsIt has been almost two months since my transplant. It is time to start over again. I will be returning back to work on May 17<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>. Even though I will be working from home, it is still a step in the right direction. I also have started the paperwork for my Non-profit. My deadline to get my business plan done is May 24<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span>. Let's see how I do.<br /><br />I have been pretty <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">committed</span> to walking everyday. The only days I don't are the days that I have out of town doctor's appointments or go shopping. I haven't been able to start jogging yet because of the sternum. My new goal to start a run/walk program is June 3rd. Hopefully, I will be healed enough to start then. Since I am currently walking every day I am hoping the transition to jogging will be smooth.<br /><br />Ten months ago, I never thought I would be walking 2-3 miles every day without getting out of breath. I feel so blessed and think of my donor every day as I do the things that I haven't done in years. God bless the donor family for following though with my donors wishes.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com4tag:blogger.com,1999:blog-8186035020364406793.post-27303379655780715662010-04-27T10:09:00.004-04:002010-04-27T10:49:21.712-04:00Post transplant thoughtsGreat things post transplant:<br /><ol><li>Breathing</li><li>Exercising with no oxygen</li><li>Traveling overnight without bringing vest or <span id="SPELLING_ERROR_0" class="blsp-spelling-error">nebulizer</span></li><li>Socializing</li><li>Gaining hours a day back because no need for vest or <span id="SPELLING_ERROR_1" class="blsp-spelling-error">nebulizer</span></li><li>Being able to load and unload dishwasher without getting short of breath</li><li>Holding my breath</li><li>Talking</li><li>Laughing</li><li>No coughing</li><li>No daily fevers</li><li>No monthly IV antibiotics</li></ol><p>Things I can't wait for:</p><ol><li>Driving</li><li>No pain</li><li>Flying</li><li>To be hungry</li><li>To run</li></ol>CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-70190398015639816062010-04-21T08:34:00.003-04:002010-04-21T08:45:12.400-04:00Scar with no staples!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYoF1VUyHYrMZlkBcm4RKzdCtZL2S964DeRFfcQQq7YkZKRGvMiJLKs47x8-x7dSe4dlAXpspteBG-TTxezfrDH5v1JLOx2BAItJ9ufNkoYzJILgojGsVswljrFD68icMBIRSBxRkjhOo/s1600/scar+april+20.jpg"><img id="BLOGGER_PHOTO_ID_5462568381863840514" style="WIDTH: 400px; CURSOR: hand; HEIGHT: 337px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYoF1VUyHYrMZlkBcm4RKzdCtZL2S964DeRFfcQQq7YkZKRGvMiJLKs47x8-x7dSe4dlAXpspteBG-TTxezfrDH5v1JLOx2BAItJ9ufNkoYzJILgojGsVswljrFD68icMBIRSBxRkjhOo/s400/scar+april+20.jpg" border="0" /></a><br /><br />As of April 20, 2010, I am tube and staple free. <br /><br />I went to Brigham and Women's yesterday to have my 1 month <span class="blsp-spelling-error" id="SPELLING_ERROR_0">bronch</span>. To read about my appointment please go to my caring bridge page at <a href="http://www.caringbridge.org/visit/stephaniebriggs">http://www.caringbridge.org/visit/stephaniebriggs</a>. I don't want to repeat everything on here that I write on there.<br /><br />I was suppose to leave with ever other staple still in but once the Surgeon pulled out every other one, he thought it was silly to keep the others in. I love that man. He was not the main surgeon during my transplant but he was an attending. I saw him a lot in during the 13 nights I was in the hospital. He would always come in and make everyone in the room laugh. I don't even know his entire last last because it is long and not a common name. I call him Dr. B. He was also the man that pulled my last drain tube. Yeah!<br /><br />I am in a lot less pain today. What a difference it makes with no drain tubes. I am going to try and only take 2 or 3 pain pills today. I don't want to just stop them and go in to withdrawal. I went 12 hours last night without any pain pills so I think getting off of them in the next week will be doable.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com2tag:blogger.com,1999:blog-8186035020364406793.post-14593979323135535082010-04-18T18:18:00.002-04:002010-04-18T18:29:34.671-04:00Pray for LungsI have a group of CF friends that are all waiting for the call for new lungs. One of them got a call this afternoon. She is at Duke and is in surgery as I type. I am so happy for her. She is about to receive an amazing gift exactly one month from me getting mine.<br /><br />My thoughts go out to Piper, Beth, James, Ashley and Justine. They are all struggling to breathe with their damaged CF lungs and are all active on the lung <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">transplant</span> list. I say a prayer every night that their call comes and they receive the wonderful gift of new lungs. I keep repeating that this is so much better than I ever could have imagined and I am still healing and I can't wait for them to experience this.<br /><br />I hope Jess is just the continuation of us getting our lungs. I can't wait until we are all chatting and blogging about what amazing things we are all doing with out fantastic new lungs! I am rooting for all of you!CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com0tag:blogger.com,1999:blog-8186035020364406793.post-34936159934753889782010-04-14T20:49:00.002-04:002010-04-14T21:25:38.156-04:00DR. DDLet me tell you about one of my doctor's at my transplant clinic. I will not use her name but her initials Dr. DD. She is one of those people that talks to you like she is better than you. Anyone <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">that</span> knows me understands that this is a major no no!<br /><br />My first <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">encounter</span> with her was <span class="blsp-spelling-error" id="SPELLING_ERROR_2">pre</span>-transplant. It was even before I got listed. She was trying to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">convince</span> me how important it was not to wait too long before going active on the transplant list. you would think this was a good thing but I was still in denial of needing a transplant. I still thought that I could get better. In not the exact words she said...If you don't get listed you will die. Then in the next breath she said but remember this is a serious decision because of 50% of people are alive 5 years after their transplant. Not did she say this one in the visit but 4 times until my husband spoke up and said "we understand the risk and the statistics but you don't need to keep repeating that and if you say it again we are leaving." Keep in mind Brian was trying to get me to go active on the list. The entire visit with her <span class="blsp-spelling-error" id="SPELLING_ERROR_4">pre</span>-transplant was very negative.<br /><br />Now fast forward to today. The nurse <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">coordinator</span>, Kathy came in and asked if I was ready to get my last drain tube out. I was happy and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">couldn't</span> wait. Kathy needed to have the okay from the doctor before we proceeded. So then the attending came in and did my check up. He saw no reason why the drain would not be pulled and would find out about the staples. He left and returned about 2 minutes later with Dr DD. I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">immediately</span> remembered her from my <span class="blsp-spelling-error" id="SPELLING_ERROR_8">pre</span>-transplant visit and knew we just did not mesh. She started off by going over my medicines. Saying something about <span class="blsp-spelling-error" id="SPELLING_ERROR_9">voriconazole</span> and I asked if she was taking about the medication that the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">pharmacist</span> and I was just talking about <span class="blsp-spelling-error" id="SPELLING_ERROR_11">valcyte</span>. She quickly let me know that I was confusing <span class="blsp-spelling-error" id="SPELLING_ERROR_12">voriconazole</span> or v-fend with <span class="blsp-spelling-error" id="SPELLING_ERROR_13">valganciclovir</span> or <span class="blsp-spelling-error" id="SPELLING_ERROR_14">valcyte</span>. while doing this she spoke to me in a very <span class="blsp-spelling-error" id="SPELLING_ERROR_15">condisending</span> tone of voice. I tried to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">just</span> shake it of. My dad also caught the tone she spoke to me. So I know it wasn't a <span class="blsp-spelling-error" id="SPELLING_ERROR_17">prednisone</span> overreaction moment.<br /><br />Of course then I had a few questions. Brian wanted to know what date the limitations started from...my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">transplant</span> date, my last surgery or when I left the hospital. For example, I should be able to drive in 8 weeks as long as the doctors approve it and I am off all pain killers. We didn't know when that 8 weeks started from. Dr DD answer was "you can drive when we say so!" No kidding that wasn't my question. Then I wanted to know how long I had to sleep at a 30% angle. Her reply "when we tell you that you don't need to." Next question, should I go to my dentist appointment next week to get my temporary crown replaced with the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">permanent</span> one? Her reply, "Thank you for telling me about your temporary crown since I will be doing your <span class="blsp-spelling-error" id="SPELLING_ERROR_20">bronch</span> next week and no change your appointment because you are on a super high dose of <span class="blsp-spelling-error" id="SPELLING_ERROR_21">prednisione</span>." I asked when should I change it to? Her reply, "I don't know, until we tell you it is okay to have oral work done." Thanks for the help Dr DD. I ended up changing the appointment until June 8<span class="blsp-spelling-error" id="SPELLING_ERROR_22">th</span>. Let's hope my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_23">temporary</span> crown will last.<br /><br />Alright now to the piece that really bothers me. Last week, Dr. Camp the big wig and my surgeon told me my drain tube would becoming out this week along with the staples. Dr DD decided she did not want to do either without talking to Dr. camp tomorrow. He is on a much needed vacation but you would think that she would have brought up my case with him this morning when they did the phone conference with him. I let this pass and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_24">figured</span> I didn't want to rock the boat with her especially sine she is the one doing my <span class="blsp-spelling-error" id="SPELLING_ERROR_25">bronch</span> next week. So to really drive the nail in to the coffin Val, my NP at the clinic called to tell me that I need to increase my <span class="blsp-spelling-error" id="SPELLING_ERROR_26">prograf</span> again. During the phone conversation I brought up what happened at the clinic. She told me that clinic <span class="blsp-spelling-corrected" id="SPELLING_ERROR_27">protocol</span> was to remove any drain tubes that drained less than 30 cc a day for more than 3 days in a row and that herself or <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">Kathy</span> could pull the drain tubes. Then she said it is also <span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">protocol</span> to take out staples after 30 day. I have had mine for 28 and she said she would have removed them especially sine Dr. amp and i talked about it last week. So Val is going to make sure my drain tube gets pulled during my <span class="blsp-spelling-error" id="SPELLING_ERROR_30">bronch</span> appointment and also make sure the staples can be removed. <br /><br />I have decided I am going to ask for an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_31">advance</span> notice of when this Doctor is in the clinic so I can prepare myself from blowing up at her. I love most everyone else I have <span class="blsp-spelling-corrected" id="SPELLING_ERROR_32">encountered</span> at my transplant clinic but I could <span class="blsp-spelling-corrected" id="SPELLING_ERROR_33">definitely</span> live without her there. Well, I hope you enjoyed me blowing off some steam.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com6tag:blogger.com,1999:blog-8186035020364406793.post-34098454897105310112010-04-11T22:06:00.002-04:002010-04-11T22:14:43.644-04:00True love<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuWxhj0XyQhVD_3yBCd3B1ePishr_jvNGAGt3PZVryK8wLEaSNyBQcDkZWGuxb7gCWp8wYov1u9jGnEARRumi2fu-0w_UrP7G6lKVklZuMb8ht-caLQ1J51szm9bFU3AIaYYyfeQwsOv0/s1600/before+transplant.jpg"><img id="BLOGGER_PHOTO_ID_5459066811825707250" style="WIDTH: 400px; CURSOR: hand; HEIGHT: 300px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuWxhj0XyQhVD_3yBCd3B1ePishr_jvNGAGt3PZVryK8wLEaSNyBQcDkZWGuxb7gCWp8wYov1u9jGnEARRumi2fu-0w_UrP7G6lKVklZuMb8ht-caLQ1J51szm9bFU3AIaYYyfeQwsOv0/s400/before+transplant.jpg" border="0" /></a><br /><br />This picture was taken right before I was rolled away to get my new lungs. It was a very emotional moment for my husband and I. This picture really says it all. Thank you Andrea for taking the picture. In the 15 years of Brian and I being together, this is my favorite picture of the two of us. I love you Brian and thank God every day that I was blessed with you as my partner. Thank you for standing by me and cheering me on during the past few years. I really could not have made it through this all without you. You are my rock!CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-27709252297583526572010-04-10T21:57:00.002-04:002010-04-10T22:13:05.887-04:00Big Plans!First, I want to thank everyone for the kind words and reassurance. I never doubted my decision to get the transplant. I think some time we just was to measure everything with a number and you cannot do that with cystic fibrosis. It would be <span class="blsp-spelling-error" id="SPELLING_ERROR_0">great</span> if there was a magic number that told us how sick we were but that just is not the case.<br /><br />I have decided to put all of that behind be because the people that know me and have read my blog know that I was really sick and that my quality of life was in the toilet.<br /><br />Today was a beautiful day. Everyone keeps asking me how it went or how I feel. All I can say is better than I could have ever expected.<br /><br />I have so many things planned for the future. I can't wait until I am 100% healed so I can give living 110%. I am going to work with my transplant center to pull together an informational piece for <span class="blsp-spelling-error" id="SPELLING_ERROR_1">pre</span>-<span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">transplant</span> patients. This will cover what to accept before the transplant, when you get the call, what you need to bring with you to the hospital and how to survive in the hospital post-transplant. It is amazing how much I was unprepared for which I could had been informed of. This really need to be done in the perspective of the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">transplant</span> patient. Because only the patient knows what is happening. I am excited to take this task on. Plus I plan on working with the transplant center to make "the call" a smoother process. <br /><br />The next thing I plan on doing is starting a non-profit organization, Hope Heals. I have all the paperwork to fill out. I will be doing another entire blog about my foundation as soon as I have processed the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">proper</span> paperwork. I am so exited about my idea and I know there is a need for the foundation I am starting. I also know that I have the passion and drive to make Hope Heals a successful organization. I already have two fundraisers in the works. I can't wait to go 100% public with my foundation. I just want to have my idea protected before I share it with the world. So stay tuned!CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com1tag:blogger.com,1999:blog-8186035020364406793.post-2914024100626471552010-04-09T20:52:00.003-04:002010-04-09T21:48:24.359-04:00A little disheartened ******EditedAfter reading a few comments left on my <span class="blsp-spelling-error" id="SPELLING_ERROR_0">facebook</span>, I am starting to feel crucified because my <span class="blsp-spelling-error" id="SPELLING_ERROR_1">FEV</span>1s <span class="blsp-spelling-error" id="SPELLING_ERROR_2">pre</span>-transplant was 37%. I was very sick and my lung function numbers did not reflect that. The surgeon even said so after the surgery. He told me I had been living on borrowed time with the lungs I had. My left lung was so glued to my chest wall that they needed to go back in after the transplant to clean it up.<br /><br />My x-ray <span class="blsp-spelling-error" id="SPELLING_ERROR_3">pre</span>-transplant was so white and cloudy. I was on IV antibiotics 3 out of every 6 weeks. I lost a lot of weight. My oxygen dipped into the low 80s when I walk more than 50 feet. I feel that my <span class="blsp-spelling-error" id="SPELLING_ERROR_4">FEV</span>1s stayed so high because I did my vest 2 times daily for 30 minutes each, had an hour of manual chest PT and exercised for 20-30 minutes every day. I hope people realize I worked really hard to stay healthy before my transplant. I could of easily stopped doing all of that and let my numbers drop but I didn't want to risk getting really sick. I couldn't do any normal house hold chores. I was always out of breath. My lungs only worked if i was at rest. The rest of the time I struggled for every breath I took.<br /><br />My cf doctor has many patients that had lower lung functions than me that he is not considering for a transplant because they were not a s sick as me. It is hard to explain my situation because it was out of the ordinary. It took me a lot of convincing before I would even consider being evaluated. Once I was evaluated and had a <span class="blsp-spelling-error" id="SPELLING_ERROR_5">UNOS</span> score my transplant team and Cf doctor continually talked to me about becoming activated on the list. I hope no one feels that I was undeserving of my transplant because I could blow out 1.11 liters in a second.<br /><br />I know some of you <span class="blsp-spelling-error" id="SPELLING_ERROR_6">CFers</span> remember a few people that died last year while being evaluated for a transplant. Their lung functions were in the mid 30s. I know because I chatted with them often. CF is very unpredictable and when the lungs are done, they are done. The scarring on my left side actually spider webbed and trapped the mucus in my lung so it just stayed there infected while scarring the tissue even more. As I got closer to my actual transplant date, I felt worse and worse. I started running fevers almost every day whether I was on IV antibiotics or not. I have faith in God that these lungs came at just the right time. Most of my CF <span class="blsp-spelling-error" id="SPELLING_ERROR_7">facebook</span> friend have never met me or experienced my CF with me. My friends and family can all verify that I was sick and I needed this transplant.<br /><br />I often asked my transplant center why my numbers were so high but I needed a transplant. They never had a good explanation so I can't give you one. What they did say was they would not transplant a person that did not need one. They would not list me if I did need to be listed and that <span class="blsp-spelling-error" id="SPELLING_ERROR_8">UNOS</span> would not give me lungs if my score was not high enough. I had to trust that they knew what they were doing and what was best for me.<br /><br />****Maybe this is just me over reacting because of the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">prednisone</span> and anti-rejection medication that is pumping through my body. Or it is me feeling guilty because I got a great new pair of lungs while i know of several others that are still waiting for theirs. Or this is part of the emotions the doctors and nurses told me I would experience. No matter the reason, I felt I needed to keep this post because it is part of this journey.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com16tag:blogger.com,1999:blog-8186035020364406793.post-3362274548452435132010-04-08T21:32:00.003-04:002010-04-08T21:53:26.766-04:00It keeps getting betterIt has been three weeks since my transplant. Everyday I wake up and can't believe that I feel better than the day before. Yesterday, I had 2 more drain tubes pulled from my chest. Since then, I can't believe how much easier it is to cough. of course, my lungs are in the process of healing so I have old lung tissue and junk in my lungs from the surgery. It feels so great when I cough junk up.<br /><br />I have so many fun facts to share about all of this. Like, I no longer have nerves going from my lungs to my brain to tell me that I need to cough. I need to feel the junk in my lungs and tell myself to cough. If I don't force myself to cough, then I won't and the crap will just sit in my lungs. Luckily, the stuff in my lungs is not thick and glued on like before my transplant. So when I make myself cough the stuff moves unlike when I had CF lungs.<br /><br />My <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">transplant</span> center really stresses the importance of exercise post <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">transplant</span>. There are many reasons for this. One, exercise is great for the heart and lungs. I don't think that needs any more <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">explanation</span>. Two, exercise helps keeps the bones strong. With all the steroids and anti-rejection medication, your bones can suffer. In addition to the exercise, I am on <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Vitamin</span> D, Calcium and Magnesium to help with bone <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">strength</span>. Three, now that my body is not working so hard to breath, it won't burn through so many calories. Many transplant patients gain lots of weight post transplant because of the lower calories that are being used and the medications increase your <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">appetite</span>. So I have been very <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">committed</span> to my exercise routine. Today, I did 2 miles in 36 minutes on the treadmill. I use to dread getting on the treadmill because it was so much work. Now, my poor little legs can't keep up with my heart and lungs. I never thought I would ever say that.<br /><br />I promise you that I won't keep boring you all with just transplant related stuff but right now that is where I am in this journey. Once I am healed up and living my life to it's fullest, I will share all of that with you. I do not plan to close my blog. This blog and my readers have been a very important piece of my life in the past 3 years.CFstephhttp://www.blogger.com/profile/12808675789017622773noreply@blogger.com2