Friday, June 14, 2013

One Month

One month out from transplant today.  Tricia continues to slowly improve.  We are finally beginning to tell that she is definitely getting a little stronger...she is walking with a little more pep in her step and a bit further every day at physical therapy.  Her doctors are satisfied with her progress, and her lungs continue to look good.  Her bronch last week showed no signs of rejection, and she is back for another bronch today.

Tricia has had a bit of bleeding from her lungs, and she continues to bring up thick mucus.  Her doctors tell us that because she was so weak, her lungs will improve more slowly than most.  Her transplant and chest tube incisions are healing well.  It will be another few weeks before they remove her staples and her trach.

Her appetite finally began returning a few days ago, and she is able to eat several very small meals a day.  She continues to be on tube feeds, but as we've discovered the past several months, she probably won't gain any weight until she really begins eating more.  Her body is still healing, using a lot of energy to do so, which means the weight will pick up once the healing process slows down as well.

Tricia will have the gastric emptying study on June 20.  This test will determine if she has acid reflux which will determine if she needs a Nissen Fundoplication (what people call a "stomach wrap").  Acid reflux, which can result in acid entering and damaging the lungs, can trigger rejection.  Tricia did not need this surgery after her first transplant, and it's possible her rejection was triggered by acid reflux. Most CF transplant patients at Duke need the stomach wrap.  If she does need this surgery, it could delay our return home by a few more weeks.

As always, thank you for your continued prayer.


Wednesday, June 5, 2013

First Clinic Day

Tricia had her first clinic day today post second transplant.  Clinic days typically take all day and consist of blood work, x-ray, breathing tests, blood gas, and a visit with a transplant pulmonologist.  Everything continues to look good.  The doctor took her off a few meds, which is always nice.  Tricia was excited because it's the first time she's been able to have a clini day without the help of a walker or wheelchair in about 8 months.

Of course, the bad part of clinic is that Tricia has to miss a day of physical therapy.  Monday and Tuesday were her first two days of PT.  She is doing well and working hard, but those first two days have shown just how much muscle and weight she has lost and how long it's going to take her to start feeling good again.  It was great to see the friends we've made at the Center For Living, and to see how many patients have been transplanted in the month Tricia was in the hospital.

Tricia continues to receive most of her nutrition through her feeding tube, and because she hasn't eaten well in about eight months and hasn't eaten at all for about a month, it will take a while for her appetite to come back and for her stomach to tolerate big meals.  She is sleeping well, and several of the minor issues she has been dealing with for months because of med side-effects and the severity of her declining health have begun to dissipate.

As always, thank you for the prayers, encouragement and positive comments.


Sunday, June 2, 2013

"Home" Again, "Home" Again, Jiggity Jig

Tricia was discharged around 3pm today.  No chest tubes and only one IV medication every eight hours give her a real sense of freedom.  She is still receiving humidified air via an oxygen concentrator when she's at rest, but only to keep her new lungs nice and wet.  Sometime in the next few weeks, her doctor will remove her trach and the more than 100 staples that helped close her chest incision.

Thus begins stage two of the transplant recovery.  She'll relax for the weekend at the hotel (four laps around the parking lot gets her mile walk in, we discovered tonight) and then back to the grind at Duke's Center For Living on Monday for about five weeks of rehab.  Her biggest goals right now are to strengthen her breathing and add some weight (and avoid infection and rejection).  Tricia has now lost well over 60 pounds in the past 18 months and is as thin as I've ever seen her, including during her first transplant.  She's got a long, hard road ahead of her to get back to where she is feeling healthy, but if anybody can do it, she can.