9 weeks post transplant - update

Well I wanted to update everyone on how things have been going for me since transplant. I know some time has passed without an update, so this may be lengthy.

Firstly all is well, though this past week has been a bit hectic. I have had few issues in regards to my new lungs - there have been no signs of rejection and all of my biopsies have come back perfectly normal. I had one episode where I felt "tight" and constricted when I was breathing. I mainly felt like I was having to work extra hard to get the same results that I had been getting for the first few weeks. That happened at about 5 weeks post transplant. I called the doctor and they ended up bringing me in early for a breathing test - which was stable. Then they decided to bring me in for a bronchoscopy and check things out. When they looked around they found some secretions - most likely from my sinuses - and also removed some scar tissue that was growing inside the bronchi (where the new lungs were attached to my bronchi and trachea) and somewhat constricting my airways. From that point I have seen improvement in my breathing and lung function and not had any other lung issues.

Most of my problems as of late seem to be related to my sinuses. I have had two CT Scans to look at my sinuses, both of which show them being fairly full. I was a bit disappointed in that because I just had sinus surgery in January and I thought that the surgery would give longer lasting results. I was having pretty severe headaches and that is what led to my first CT Scan and appointment with the ENT (Ear Nose and Throat doctor). He looked in my nose and cleaned out some stuff and took cultures. Being that the cultures came back growing the same bacteria that had been in my lungs before transplant (the bacteria is in my sinuses now NOT my lungs though thank goodness) the doctor started me on an antibiotic sinus rinse. I have to do a saline sinus rinse twice a day followed by the antibiotic sinus rinse also twice a day. I will do the antibiotic sinus rinse twice a day for 6 months, and then it will be cut back to once a day for 6 months. I was not able to get that prescription filled right away, so about a week passed from the time I got the script until I was able to take the medication.

In that time I started to run a fever. I talked to my Nurse Coordinator at the Transplant Center and they prescribed me Cipro - an oral antibiotic - to be taken twice a day for two weeks. They think that my fever was caused by my sinuses. My fever went away over the weekend and reappeared on Wednesday July 11th and stuck around until the 12th. I again called the doctors office because we are supposed to call the doctor if we ever have a temperature over 99.5. Running a temperature can be a sign of rejection OR infection, so that is why we have to call. When I talked to them the second time they again said that it was most likely my sinuses causing the problem. They then prescribed yet another medication. This one is Colistin - a nebulized medication. I am now using that once a day for the next 10 days, and I am nebbing it with a mask so I can breathe the medicine into my sinuses. The docs are hoping that between the Cipro, Colistin and Gentamicin (the antibiotic sinus rinse I am using) that the sinus infection will be effectively attacked. Though I was somewhat disappointed yesterday when I met with the ENT again because he told me that I will never have normal sinuses and they are probably about as good as they will get. I was just hoping to have more improvement I guess.

So yes my lungs have been doing wonderfully, but my sinuses have now decided to act up. My sinuses are still an issue because I still have the Cystic Fibrosis DNA in my sinuses - as well as the rest of my body (except for my lungs). I will have to deal with sinus rinses and probably periodic antibiotics for my sinuses for the rest of my life according to the ENT I talked to yesterday. It is alright though - it is a workable situation so long as I can breathe.

Also in GREAT news. I have been sleeping better. As the doctors at the Transplant Center started lowering my medication doses I began having trouble sleeping. Now that my medications have been stable for a few weeks I have been able to get better sleep. I am still doing my daily breathing tests, exercises and meds and such. I am finding that most of my issues with exercise now are related to my being so weak and having no muscle mass. I was unable to do much physical activity for so long that I have more difficulty with muscle cramping and tiredness than being short of breath now. I am able to walk upwards of 3 miles an hour now, whereas before transplant I was only walking 2 miles an hour (on a good day) and when I was pushing it. My normal "casual" pace was lower than that. I went for my first bike ride in about 3 years - on a NON stationary bike - Thursday July 12th. I rode for about 3 miles and it took me about 25 minutes. I went in the heat of the day on Thursday, so I was pleased with that. I decided to try again on Friday the 13th for another bike ride and went after eating dinner when it was cooler. I was able to ride 4.5 miles in roughly 30 minutes. I was so excited. Otherwise, I am slowly trying to get back into life "as usual." I am trying to get a schedule down or a daily routine. It just always seems like there is so much to do - days really should be something like 40 hours :). I get up and before I know it, after I do all my meds, testing and exercises that I have to do, it is time for lunch if not later.

I am going to end this for now as I am going to visit family. Also to let everyone know I am going to be celebrating my 25th birthday tomorrow. YAY! I will actually be able to blow out candles this year - so long as there isn't too much smoke :).