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

I am so bad

My 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.

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%.

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.

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.

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.

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.

I have been busy enjoying life while all of this is going on.

Yucky 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.

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.

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!

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.

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.

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.

Friday update

Well, 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 CMV, 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.

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.

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.