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.

Hello Blog world

I 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.

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.

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.

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.

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.

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.

Home and IV free

I 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 meds. So They took me off it and will replace it with another drug when my mouth is 100% healed.

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 bronch 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.

Yesterday, I went in for a bone density 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.

I need a real vacation. Yes, I go up to our camp a lot but I did that pre-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 furthest 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.

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.

This is crazy

Well I came in to Maine Medical center on Monday August 2nd. 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 feels 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.

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.

My friend 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 chyle 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.

"Mama always said life was like a box of chocolates. You never know what you're gonna get."- the movie Forrest Gump

A little good news

My CF friend Cysticgal or Beth got her lungs. I am so happy 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.

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: Pseudomonas and Stenotrophomonas maltophilia (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.

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 FNP, my ENT 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 (Cellcept) to see if that helps the sores. My gums are super sensitive and the minute I touch them with anything like a toothbrush or food they form sores. Trust me I have good dental hygiene. I brush 2-3 time a day and use mouth wash 2-3 times a day. I was flossing 3-4 times a week until these sores appeared. Wow got to love being immune suppressed.

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.

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 definite plans is to go to my niece's birthday party Saturday evening. I think my parents will spend the night on Saturday after Rheana's party. I am hoping to meet an old friend for lunch tomorrow.

I will leave you on this note:
"It's not the size of the dog in the fight; it's the size of the fight in the dog." - Mark Twain