Monday, March 30, 2009

8 weeks

Emily made her first trip back to school to go to lunch and Chemistry on Thursday, just short of 8 weeks post-transplant. She really enjoyed seeing everyone and being a celebrity for a few minutes. She will be going to school most days for one class (80 minutes) for now. We have to work that around her tutoring at home and cardiac rehab at the hospital. The transplant team said she needs to be careful of exposure at school and elsewhere, but she does not need to wear a mask to school. She is trying not to walk through the halls when all the kids are passing classes, and she is very careful about what she touches. From being completely isolated, it is a little unnerving to have all this exposure to people, but we can't keep her in a bubble.

We don't have to go to Boston this week at all. Yipee. But next week the school/tutoring will have to work around a trip back to the hospital on Tuesday.

She is very happy to get some of her normal life back. She has been feeling pretty well most days, with some bouts of nausea.

Wednesday, March 25, 2009

Back to School

After a good check up on Tuesday, Emily was given the green light to start going back to school part time. She will begin next week going to Chemistry class. She has started with her home tutors this week for all her courses. She will continue with them and try to catch up while getting to go back to school a little as well on a limited basis.

Emily also started at Cardiac Rehab today. The program is directed at mainly adults who are recovering from heart attack or coronary artery disease. She is quite an anomaly with her young transplanted heart. She works out on the machines while her heart rate and blood pressure are monitored. The goal is to learn how her new heart and her body responds to exercise, and try to start work on some conditioning and strength.

She does not feel well every day, and has pretty low energy. The doctors are still trying meds to make her feel better, reduce the nausea and start gaining some weight.

It is a little scary to go out into the germy world, but Em is really looking forward to getting back to school and seeing her friends. The transplant team feels her immune system is strong enough to risk some routine exposures.

Saturday, March 21, 2009

The Cranes Fly

Emily (with help from Miranda) strung up all of the paper cranes in her room. They look fantastic.

Thanks again Gators, and good luck at States!

Tuesday, March 17, 2009

Back and forth

We returned to Webster Monday night. Jeff drove out with us and he drove up to pick up Kendra at Holy Cross. She came down and had a very fun dinner with us. The take-out food we ended up with (our first few choices were closed) was pretty horrible, but it was great to see Kendra. Sorry about the food Kendra. We will do better next time.

Clinic was ok today. The transplant team is still working with Emily to try to sort out the meds and get her feeling better more consistently. We are hoping to stay home all week in Queensbury and return to clinic in a week.

Here at home Emily has started to string all the 1,000 paper cranes made by the Gators to hang in her room. We will post a photo when she gets the whole thing done. It is gong to be quite something...

Saturday, March 14, 2009

Still here, not feeling too well

Emily didn't seem to react too well to the IVIG treatment. She was sick during the night. We called the cardiologist on call at 4:30 am. We got some tylenol in her, and later she was able to take her morning meds. She has a terrible headache and feels sick. She has slept most of the day. As long as she doesn't continue to run a fever and can keep fluids and meds down, we probably can stay the course here. It is hard to see her feeling so bad. Since all of the tests this week showed good heart function there is not concern this is due to graft rejection. It is most likely just a reaction to the IVIG, but it is still pretty crummy.

Friday, March 13, 2009

Home again

We went back and stayed in Webster last night and went in this morning to the hospital. The IV Immune Globulin treatment went fine. The worst part was the prophylactic treatment with benedryl which made Emily really sleepy. Well, that and getting stuck for another IV.

We were able to meet with the transplant team and ask some questions. We won't know for a while whether this treatment will need to be repeated or not. The rest of her evaluation including the echocardiogram today still looked good.

Jeff is on spring break and caught up with us in Webster last night, and came in with us for the treatment today. It was nice to have him around. Jeff went to meet up with friends and bring Chris home.

It is great to be back home again, but we are really tired. And, of course, it will be brief, as we need to be back in clinic on Tuesday. I think we should look into a frequent flyer pass for the Mass Pike.

Thursday, March 12, 2009

A Setback

We were way too happy yesterday when we thought we'd be home for four days. Dr. Singh, one of the transplant doctors, called to explain that they got test results back today with some unexpected bad news. Her blood is positive for a donor specific antibody. This was not expected because prior to transplant the screening indicated that she was negative for any Human Lymphocyte Antibody (HLA), which means that she should not have reacted to the donor's tissue. However, this does happen sometime and if untreated it may lead to "humoral rejection," a blood mediated rejection. This is a different rejection mechanism than tissue rejection, but the outcome can be as serious. They have told us to go back to the hospital for an out-patient treatment of IV Immune Globulin (IG). This may be a one-time treatment or it could be a recurring treatment, depending on whether or not the antibody continues to show up in her blood.

We are leaving this afternoon for an overnight in Webster, and then back to the hospital for the day tomorrow. We expect to get back tomorrow night, but obviously we have not control over schedule.

Wednesday, March 11, 2009


Fedex came through with a few weeks of CellCept and we jammed the Prius full of stuff and got on the turnpike westbound about 1:30. When we got home she just wandered around and said, "I'm home, in my own house. I know where everything is." She's sitting in her bean bag chair stringing up the cranes. Even though we have to go back Monday a few days here seems luscious! It seems like it has dawned us anew--Emily had a heart transplant a few weeks ago, and we're home from it.

Tuesday, March 10, 2009

Going HOME!!

Well, we are going home to at least visit for a few days and sleep in our own beds!

Emily had a biopsy today. Those results and the rest of her other tests were good. So we were released to go out of the area and go home to Queensbury.

We need to wait for a FedEx delivery of meds, which should be some time tomorrow, and after that we will travel home. We can spend 4 or 5 days there before we have to be back for clinic on Tuesday.

Jeff is on spring break starting Friday, so we will catch up with him, too.

The biopsy went much better today with no versed, and a new cocktail of meds. Emily recovered fairly quickly and was even able to pull it together to go to a tutoring session for two hours this afternoon after a morning biopsy.

We will now transfer the tutoring back to Queensbury next week (Queensbury teachers beware!).

We are looking forward to seeing everyone at home, but Emily is still restricted about exposure to a lot of people. She can not go to any public places yet (school, restaurants, etc). We have to be careful not to expose her to anyone who has a cold or has been exposed to a lot of people. So be patient with us while we are being fussy about who we see, and when we make you wash your hands when you come in, and won't let you touch Emily!

Yipee. We are looking forward to getting home!!

Saturday, March 7, 2009


We were hoping to go to once a week in the hospital, but we ended up going Tuesday, Wednesday and Thursday. Emily was suffering from nausea all weekend and her heartbeat was elevated to about 120. When we went in on Tuesday her echocardiogram and EKG were both good, so they weren't too worried about the heart, but they gave her a Holter monitor to try to record any episodes of fast heartbeat (tachycardia). The Holter is a beltpack recorder that is hooked up to electrodes that continuously records an EKG. Naturally with the Holter she had no episodes of racing heart when they took it off on Wednesday. On Thursday we had the results. Her sleeping heartbeat went back to 90, wich is her heart's intrinsic beat, so everything seems ok with the heart.

Even with a good heart, feeling sick to your stomach can ruin the day. They gave us Zofran to control the nausea, and it works great, but it is highly restricted, very expensive, and suitable only for short terms. We are hoping the nausea comes from the Bactrim, an antibiotic that may be wiping her gut flora. We switched the Bactrim from daily to every other day in double doses. Hopefully that will let us figure out which drug is making her so uncomfortable. She is eating live culture yogurt with added culture (Culturelle).

We have clearly transitioned from the post-operative phase to the "living with the meds" phase. It's not nearly as exciting, probably not as interesting, but ultimately will determine the quality of life.

I had a big adventure this morning. I flew home to run some errands. It was a nice day and I wanted to fly mostly to charge the battery in the plane and keep my own currency up to date. I spent about half an hour in the house and 45 minutes in the accountant's office (filed a later return form). After next week, if Tuesday's biopsy is ok, we might start to transition home, spending up to five nights a week there and only two here in Webster. Besides, the ice derby fishing contest was today so there may not be as much excitement to watch if the ice fishermen pack it in and go back to drinking in their homes and bars instead of out on the lake.

Sunday, March 1, 2009

Four-week anniversary

We have made it through four weeks post-surgery. We've been at Webster, MA, entertained by the ice fishermen, movies, books, and the treadmill. We made trips to the hospital on Tuesday and Thursday. Tuesday was a heart biopsy. The procedure went ok but evidently while in the surgical suite and medicated on morphine and versed, Emily got a little weepy. No big deal, versed dis-inhibits emotions, but the anesthesiologist, who prefers unconscious patients, added more versed. When Emily came back to us she was very dopey and said that she remembered the whole procedure and it went well. Fifteen minutes later she couldn't remember the procedure. Dr. Blume came in and talked to her and said that she wouldn't remember any of this and she'd come back later. Emily gave Dr. Blume some presents she'd been saving, but fifteen minutes later she couldn't remember giving her the presents and was very mad that she was so dopey she kept forgetting stuff. That's the way most of the day went. Dr. Blume came back and told us the results of the catherization (normal, but slightly increased pressures) and what to expect over the next few months. Emily conversed with her, but later in the day forgot the conversation. When we got back to Webster Emily was very angry about losing the whole day to the drugs. The doctors and nurses all agreed to back off the versed in the future.

Thursday was a clinic day. We got there after 7 AM, went to Phlebotomy for a blood draw, took the morning meds, got an echocardiogram (good heart function), and met with Dr. Blume. She quickly realized that Emily had no recollection of the discussion on Tuesday so she went over the same information. Dr. Blume would say, "even though you will start to feel good you have to restrict your behavior..." Emily would start to reply and Dr. Blume would say, "Now you are going to say_____ because that's what you said on Tuesday and we've already had this discussion." Emily laughed and said, "you're right!" Emily met with another specialist and Deb and I took a walk, only to be called back because Emily had thrown up. She felt lousy from the meds. Her tutor showed up and somehow Emily had the strength to have almost two hours of school. Then we went back to Webster.

This weekend has been fun. Deb's sister Susan and Emily's cousin Samantha are visiting. Sammy and Emily are very close. The picture shows them enjoying Uncle Tom and Aunt Nancy's "edible arrangements" fruit cluster. The bare sticks all contained chocolate covered strawberries, which were the preferred fruit.

The coming week includes two more trips to the hospital, which also include two more long sessions with the tutor. Thanks again everybody for your support, generosity, and concern.