Thursday afternoon

The Dr's. came in this afternoon and said they have re-scheduled the bronch for 10am tomorrow. They ran and ultrasound on her legs, but there are not clots there, so that is good. I also need to correct what I wrote last night. She doesn't have a clot in the coroided artery, but the jugular.
They won't get the results back from the clotting tests until probably sometime mid next week.
They will start her on cumaden for at least 3-6 months, unless it comes back that she needs it because of the clotting and then she will be on it for life.
They will check levels on the cumaden and then let her leave the hospital after a day or so.
We always have to have things exciting, don't we? lol
Love to all!
Becky

Thursday

They canceled the bronch because someone else needed an emergency bronch. I guess they will re-schedule for tomorrow, but the Dr's. haven't come in to tell us anything. They have sent her to vascular maybe for another ultrasound. She was able to eat, so I ran downstairs to get her food and when I came back, she was gone. Will let everyone know what the plan is when they come in to talk to us. Her left arm does look better though, the swelling is significantly less.
Becky

Wednesday Evening-A bump in the road

Well, we started out late this morning. We were supposed to have bloodwork done at 7:30 and didn't get there until 7:45. Then on to x-ray, pulmonary function tests and then Dr. Budev. We finally made the Dr. appt. an hour later, went through all her meds with the nurse coordinator, let them know her issues she wanted answers to and was getting ready for the Dr. to come in. She came in and said that her xray showed that she had fluid on both lungs, so they wanted an ultrasound of the lungs to show just how much fluid was there. Then also wanted another ultrasound on her right arm, because it was swelling again. She said go have those done and then come back and she would see Jennifer. So we did the ultrasound on her arms first. They wanted on both arms and found that there were new blood clots in both arms now along with the corroided artery, so they called Dr. Budev, who decided to go ahead with the ultrasound on the lungs but would have Jennifer admitted back into the hospital and treat everything. She is still scheduled for the bronchoscopy tomorrow, but it will be 2:00 (ish). They will decide if they need to tap into the lungs and drain the fluid off when they do the bronch. The blood clots, they are doing a heperin iv to make sure the clots don't get any larger and said that the body would absorb them eventually. I certainly hope so. Her magnesium is down, so they are doing a bag of that, iv, and changing the dosage of the anti-rejection drugs to stronger, since the level they watch for in the bloodwork is low. Lots of little tweaking going on.
I am personally very disappointed that we aren't coming home this weekend, but so glad that they caught it now and can take care of this while we're here. I trust Dr. Budev very much and so does Jennifer. She will be in the hospital for a couple days and then will let her come back to the hotel and not sure when we will be allowed to come home. Jennifer is ok with this and that's the important part. The Dr. said that the transplant process is going "excellent", so we'll take that. Hopefully, tomorrow will be wonderful with the bronch and see no other problems and can get the clots under control. They are also checking her clotting through bloodwork, so I feel they are doing everything great and on top of things. Keep her in your prayers!
Love to all!
Becky and Jennifer

Tuesday Afternoon

Hi everyone! We really are getting pretty boring here, so that's why there aren't any new posts. Jennifer's blood pressure is running high, so we have a call into the post transplant dept., they are checking with Dr Budev to see what they want to do. The high blood pressure is probably because of the drugs she is on, so assuming that they will put her on meds. They asked if we were monitoring her salt intake, but reminded them she was a cystic fibrosis patient and needed her salt and she agreed.
We go to see the Dr. and do xrays and bloodwork tomorrow at 7:30, but should be done by 10 or so. That will be our first venture out. Jennifer feels guilty because we haven't been out walking, but it's freezing here. She keeps sending me out for food and waits patiently.
She seems to not be feeling the prednisone as much either. I thought that would make her eat mucho food, but she hasn't too much. She did eat well on Sunday, but then her sugar ran high because she had a milkshake. We will find a happy medium soon, I hope. We will post more tomorrow after we talk with the Dr. She's always so upbeat, it will be good to get reassurance that we are doing what we should be and she is doing fine.
Love to all!
Becky and Jennifer

Sunday Evening

Well, Jennifer and I are sitting here alone. Very quiet, compared to the weekend we just had. Ray and Kelly left, then Cameron, then Adrianne and Sherri, then Michelle, girlfriends of Jennifer's. We have switched rooms also. The suite we were in was so cold near the door and kitchen and hotter than blazes in the upstairs, so we switched to a studio room. It felt much better when we came in, but as the day as turned into night, it's cold too. I think it's just Cleveland though. That's ok. Still one of my favorite towns now! hehehe
Jennifer and I have caught up on phone calls to people we have promised to call and I have played this game on her computer that I am completely addicted to.
Now Jennifer is sleeping, trying to catch up on some long needed rest. She is doing well, breathing better than I can't even remember when, and smiles every time someone talks to her about going through the transplant and how much color she has. She isn't hardly coughing and that is a brand new thing for us. I think I cough more than she ever did. lol
So tonight, just a quiet evening, resting,watching tv and trying to get the thermostat on a good temperature.
Love to all!
Becky and Jennifer