Where 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.

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.

After these few posts, I am not sure where my blog will take me but I look forward to the journey.

March already

Yes, I am a very bad blogger. It is not that I don't want to but finding the time is difficult.

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.

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.

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.

In two weeks, I am starting my MBA in leadership degree. My plan is to be done by December 2013.

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.

I have been enjoying time with my family and my husband. I have been able to spend time with my sisters and their children.

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.

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.

Transplant Anniversary

I 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.

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.

December

My Nana and I

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.

Lots have or will happen this month:

What has happened:

I made it through Thanksgiving and Christmas festivities without being hospitalized or needing IV antibiotics.

I attended 5 Christmas gatherings in 5 consecutive days without becoming extremely sick or exhausted.

I went to stores to do my shopping instead of doing it 100% online like past years.

I had my nine month anniversary of my new lungs.

Went to transplant clinic and don't need to go back for 3 months.

I ran/jogged my first mile post transplant. Then did it 2 other times.

Made Christmas dinner for my husband.

Put up my Christmas tree all by myself.

First Snowfall.

First time shoveling the deck and stairs with new lungs. No cough or shortness of breath.

First time snow shoeing.

Took the step to never have my own children. Yes, my surgery I had was a tubal ligation.

First sinus infection with new lungs. Only needed a z-pack (5-days of Azithromycin) to feel better.

What will happen:

I am having my port removed on 12/30/10.

I will celebrate my 35th birthdayon 12/31/10!

I will see in 2011 breathing easy on 12/31/10!

I hope you have a safe New Years Eve!

Thanksgiving

I 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.

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 hometown, 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 meds 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 icy but that didn't stop me from shopping from 6am until 3pm. I got 99% of my Christmas shopping done and my groceries. By 7pm, I was asleep 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 neb treatment or vest treatment because I was too tired or even staying up for a hour longer than I felt like.

Today, I got to watch lifetime movies all day. I started a walk around noon but I got about a 1/2 mile down the road and I started getting all sweaty and shaky. Not because it was warm out either it was only about 35 degrees. My blood sugar dropped so I headed back home. I checked 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 tougher 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.

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 organs.

I also am thankful for all the people that loved and supported me over the past few years. There were so many people in my communities that cheered me one and still do. It means so much to me.

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 whether that was in Boston, Portland, Buxton 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.

I hope everyone took some time to be thankful to those that have made a difference in their lives this Thanksgiving.

Almost 8 months post transplant

It 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 bronch next week to see what is going on in these precious lungs.

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.

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.

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 cardio. 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.

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.

So a break down of what I have been up to:

• Returned to the office 2-3 days a week
• Concentrated on getting in shape while gaining weight
• Slowly decreasing the number of doctor appointments I have
• Visited my hometown twice in the past 2 weeks
• Went up to camp a few times this fall (very cold)
• Attended a funeral (cried a lot)
• Have been spending a lot of time out side with my 3 dogs
• Attended a retirement party
• Helped out for a fundraiser for the American cancer society
• Painted my first piece of pottery
• Spent my anniversary weekend in Burlington, VT
• Took a cruise on Lake Champlain
• Spent the weekend with Brittany who is currently going to UVM
• Done a lot of shopping
• Bought a lot of new shoes and clothing
• Purchased a really expensive air purifier/vacuum cleaner
• Ate at some really good restaurants and had some fantastic meals
• Tried bake escargot...not a fan
• Got to spend some time with my hometown friends Tracy, Andrea and Ryan
• Spent some quality time with my mom and dad

Things I need to do:

• Visit both my grandmothers
• Visit my extended family more
• Take time to enjoy the holidays
• Get my lung functions back to my baseline
• Go back to work in the office 3-4 days a week
• Spend more alone time with my husband
• Keep up the exercise once boot camp ends in December
• Stop spending so much money
• Get my business plan written up for my non-profit over the winter month so I can start fundraising this spring
• Start on my Master's degree in the Spring
• Start eating healthier
• Spend more time with my 2 sisters
• Go to a Celtics game
• Get to a concert

Things that have changed after 6 months

In April, I wrote this blog http://cfsteph.blogspot.com/2010/04/post-transplant-thoughts.html.


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.


The hunger should be coming soon since my mouth sores are almost gone and I am not having pain when I swallow.


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.


The number of medical appointments are a lot less.


I am back to work and I even go in to the office a few days a week.


I am on less medications.

Less side effects from medications.

I am able to swim.

My finger nails are the longest they have ever been in my life.

My bald spot on my head is almost filled in. That was from the fluid they pumped me with during my transplant.

I have gone to camp about 9 or 10 times this summer. I still plan on going up this fall and even this winter.

I had no issues breathing in the humid weather.

I don't cough going from hot to cold.

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.

I did a 3.5 mile walk for ALS 2 weekends ago and never once needed to stop to catch my breath.

I don't need home health any more though I miss my VNA nurses.

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.

I went to my niece's 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.

I am sure there is so much more but this is a good list to begin with. I will update this every several months.

These thing were all made possible by my wonderful donor.