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
Thursday, July 29, 2010
Thursday, July 22, 2010
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.
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.
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