Tuesday, November 15, 2011

Time to celebrate!!!

Okay, this is one post that we have been waiting for.  Rachel nailed her swallow study yesterday and she has now been cleared to eat and drink anything she wants!  So, this means that she can finally have her sweet tea and drink until she "pukes."  (her words).  We are planning a sweet tea celebration for Thursday (11/17) at 6:30 and are asking that everyone have a glass of sweet tea in honor of Rachel at that time.  Please let us know that you did indeed have a glass of sweet tea for her; it would mean a lot.
We are hopeful that this is the last week of being at the apartment in Shands.  She is scheduled for another biopsy on Wednesday (11/16) to again check to make sure there is no rejection.  She will be admitted to the hospital after the biopsy in order for her to receive one of her meds that has to go through an IV drip over a 24-hour time period and where she has to be hospitalized.  Once the med has run through, and if there are no complications, we anticipate her being discharged on Thursday.  She has a test when she see the pulmonary doctor (lung) on Friday and we are hoping to gather-up all of our stuff and head back home on Saturday!!
Of course she will be making frequent visits to the cardiac-clinic for check-ups and there is a possibility that she may have to receive another med by IV (something other than the med tomorrow) and will have to be hospitalized for that too, but, would be able to return home afterwards.
It's hard to believe that this has been ongoing since late April and now here we are, about a week away from Thanksgiving.  Needless to say, we have a LOT to be thankful for.

Thursday, November 3, 2011

Finally.....an update!

Been a long while since our last update but here is the latest.  Rachel had another clinic visit today and heart-function-wise, Dr. Fricker was extremely happy with her progress.  She had had some fluid in her lungs as recently as her last visit, around October 24th, and she had been retaining some fluid within the past couple of days.  However, he said that her lungs sounded better than they did the last time he listened to her and they didn't sound as wet.  He had gone up on her diauretics a little over the last two days which had also helped.
He still wants her to see the pulmonary doctor for some additional tests on her lungs to make sure he isn't overlooking anything.  He did say that because she was on the ventilator for so long, it may take a lot longer for her lungs to heal up than it would for someone who was on the ventilator only a short time.  He also wants a follow-up visit with the ENT doctor so that they can re-do the bronchoscope to re-access her vocal cords.
He did say that she is scheduled for another biopsy on November 16th.  Also, depending on the "numbers" from her blood-work, she may have to be hospitalized overnight in order to receive one of her meds that has to be administered through an IV drip.  He did say that we should be able to leave Gainesville and come back home the next day.  Soooooooooo, looks like we might get to leave Gainesville and have everybody back home altogether again by Thanksgiving.

Monday, October 24, 2011

Monday - 10/24/11

Rachel had another clinic visit today.  Dr. Fricker said that the chest x-ray showed that some fluid is still prevelant in her lungs so he wants to schedule her to see a pulmonary doctot at Shands; he said that heart-function wise, she is doing great.  He did say that the issue with the lungs could be due to how long she had the breathing tube in and that it may just take a little more time for her lungs to fully recover.  He wants to be a little more cautious considering what all she has been through.  He also said that they may have to go up on her diauretics even more as she has shown signs of retaining some fluid.
He also wants a follow-up with the ENT doctor that performed the bronchoscope shortly after her heart transplant to see how her vocal-cords are doing.  He said the goal is to be able to get her to take her meds in pill form as opposed to liquid form currently going into her JG tube.  When the ENT doctor did the bronchoscope he did say that he wanted to follow up with her in about six weeks so it should be time for another evaluation.
He was pleased with the fact that she was eating although she needs to be able to eat more in order for the breathing tube to come out.  He said that the more she is able to eat by mouth, the better the Prograf (the one med for anti-rejection) works in her system.
We had thoughts about maybe seeing if we could bring her home after next Monday's clinic visit, however, he was not in agreement with that.  He wants to address the lung issue, get her to be able to take her meds in pill form, see what the ENT doctor has to say, plus, he stills wants to see her once a week and she still has another biopsy scheduled sometime around the middle of the month.  So, his advice was to hang around for another few weeks instead of going all the way home and have to travel back so much, which makes sense.

Wednesday, October 19, 2011


Hard to believe but yesterday was 8 weeks since Rachel got her new heart.  She had  clinic visit on Monday and her bloodwork looked good and the doctor was pleased that she was eating more.  Since she has scored all zeroes on her first three biopsies, they have decided to wait until the middle of November (tentatively scheduled for 11/16) to do her next biopsy.  She continues to improve with her physical therapy.  While at the gym, they have her walking two five minute intervals on the treadmill and a two-minute cool down walk. 
If everything goes well during her clinic visit on October 31st, and we don't have any setbacks, we may try and bring her back home either later that same day, the 31st, or the next day, November 1st.  It will be her and Tammy's first time home since May 10th.

Saturday, October 15, 2011


Camden is sick so we didn't get a chance to go to Gainesville to see Rachel.  We don't want to risk her catching whatever it is he has.
Tammy did say however that Rachel has been eating a little bit more yesterday and today and overall she seems like she feels really good.  She has been going back to the gym at Shands this past week for physical theray and has walked on the treadmill five minutes at a time, twice and she starts with a two minute warmup.  Tammy said that the gym usually wears her out so she has had no problem with coming back to the apartment and taking a nap. 
She will have another clinic visit on Monday and we are hoping for another great visit.  And, if we get a good report, maybe be able to come back home in about another week or two.

Tuesday, October 11, 2011


Rachel's clinic visit went well and this time around, they did not need to re-admit her to the hospital!  The preliminary blood work came back and this time around her Prograf level was dead on where it should be.  Prograf is one of the anti-rejection meds that she is on and the last time she went for her clinic visit it was too high and that, along with her being dehydrated, is what caused her to have to be re-admitted.  Also, her elecrtolytes, which were out of whack last time, looked good this time around.
When she was discharged from the hospital on Friday, she did have some fluid in her lungs.  However, the chest x-ray from yesterday morning looked better than it did on Friday and they told us to make sure that she continues to walk as much as possible as that will help move the fluid on out. 
We have been told that we can leave Gainesville and head back to home if we feel comfortable.  However, we will probably wait for about another two weeks or so before we feel comfortable enough to head back home.  She still has a clinic visit every Monday and will probably have another biopsy in another couple of weeks.  Probably after that time, if she continues to do well, we will head back home.

Friday, October 7, 2011

Friday (or Second discharge day)

Rachel is being discharged, for a second-time, today.  Her biopsy results came back this morning and she scored another big fat zero! 
She does have some fluid buid-up but with them giving her IV Lasix and with us getting her up to walk a lot, they believe that this should be enough to move the fluid on out. 
She continues to be able to eat (she had a whole baked-potato last evening along with pudding) and so far so good.  The loose stools issue is beginning to get better as well.
She has a clinic visit Monday morning and one of the things they will do is another chest x-ray to see whether the fluid issue is clearing up.