Mom went down to check on John early this morning hoping for good news on his test. And...NO MORE OBSTRUCTION! WOOHOO! Go John! This is such great news and we are all so happy for him as I'm sure he is excited, himself. I'm not quite sure if he got his cinnamon toast yet, but I know if he hasn't he will soon; he really deserves that with everything he has done for me and has been through. He is still one of the most amazing people I have ever met and am so thankful for him and his family.
Dr. Emre came in to see me this morning with his whole team and said that I am still going home today as planned. I am still having chest pain when I swallow so they will do a few tests before I go home, but we will just try to control the pain with medications for now. I have to go back to the clinic twice a week for a check up's for a while, so no REAL break from the doctors, but better safe than sorry. I will be having my first follow up appointment on Friday and another on Monday. Accompanied with Monday's appointment will probably be an endoscopy to make sure that there are no perforations or larger tears in my esophagus causing this chest pain. Dr. Emre doesn't think that there are, but he wants to just make sure. Because like always, when everyone else is a horse...I am the zebra. When things are extremely rare, they still seem to happen to me. But please continue to pray that only good news comes out for the next few months, John and I really don't need any MORE issues than what we've had. Dr. Emre also told me that he will be sending John home as well either today or tomorrow...which is music to MY ears. I am so happy for him and hearing this trumps any aggrivation I have with this feeding tube. Knowing my angel and life saver is healthy enough to go home, is the best news I could ever get.
I can't wait to get home and sleep in my own bed tonight, I'm sure John is thinking the same thing about his own bed. You never really realize the simple things you take for granted...
--Alison
Wednesday, November 4, 2009
The Other Side of the Mountain
7:30 a.m. Wednesday
The unexpected news that Alison would go home today was certainly "music" to our ears. To go home, however on a feeding tube, fluid leaking from the abdomen and daily injections is certainly overwhelming. Sometimes we are just not sure how much more Alison can handle. But it is important for her, for us to remember that she has reached "the other side of the mountain". We need to remember that prior to the transplant, all the pain and suffering were signs that Alison's liver was dying, she was dying. Although I have used that word before, the reality of what could have been, had we not been blessed with John............is just too much for words, for thought, for our hearts to bear. Now, each step of this journey, although still challenging, is leading Alison to recovery, to health. There will still be "peaks" to climb but Alison must not forget that she is a champion climber, one who has made it to the "other side of the mountain". Now, the "fog" just needs to clear a bit for her to begin to truly enjoy the view-we promise her that it will be spectacular.
Much love,
Joe and Karen
The unexpected news that Alison would go home today was certainly "music" to our ears. To go home, however on a feeding tube, fluid leaking from the abdomen and daily injections is certainly overwhelming. Sometimes we are just not sure how much more Alison can handle. But it is important for her, for us to remember that she has reached "the other side of the mountain". We need to remember that prior to the transplant, all the pain and suffering were signs that Alison's liver was dying, she was dying. Although I have used that word before, the reality of what could have been, had we not been blessed with John............is just too much for words, for thought, for our hearts to bear. Now, each step of this journey, although still challenging, is leading Alison to recovery, to health. There will still be "peaks" to climb but Alison must not forget that she is a champion climber, one who has made it to the "other side of the mountain". Now, the "fog" just needs to clear a bit for her to begin to truly enjoy the view-we promise her that it will be spectacular.
Much love,
Joe and Karen
Tuesday, November 3, 2009
GOING HOME!!!!!
GREAT NEWS!!!!! I AM GOING HOME TOMORROW!! It's amazing that I get to go home, but this is no easy feat. I am going home with an NG tube that goes up my nose and down my throat which is giving me all my nutrients for the next 2 weeks, at least. I also have to get albumin infusions weekly and blood thinner injections daily. So as awesome as it feels to go home, there is a lot that I'm going to have to deal with; which is going to stink. Please pray that this stupid tube can come out of my nose in fewer than two weeks as I am already hating it. It is extremely uncomfortable and somewhat painful. The doctors say I will get used to it; let's hope that happens like...tomorrow. The purpose of this tube and the specific stuff going through it is that it bypasses my lymph system. By doing this, my lymph system will close off like it should've done on it's own. If/when it does this, the fluid that is coming from my incision should turn clear and eventually slow and hopefully stop all together. I still may need to get a few stitches to close up the open part of the incision, but we will only know once this treatment starts to work. I really hope that the next 2 weeks goes by extremely fast, because this isn't going to be easy for me. No eating for 2 whole weeks is going to stink for this Italian girl. I LOVE my food and desperately want to eat. But, if doing this treatment is going to fix the problem, then I need to do it.
As much as these next 2 weeks will be hard, I have to try to remember how good I am feeling overall. I am no longer in constant pain, my joints don't hurt anymore, I am not nauseous all the time, I am regaining my energy-all a result of my new liver from one very special person-John.
Please keep John in your prayers as he is still in the hospital. It is so difficult for me to be so happy about going home, knowing he will still be here. I went to visit him tonight, and his spirits are great, as usual. He is currently drinking contrast and going for a test later on tonight to make sure that he is healing appropriately. I am eager to hear the news from his test; if they come out well, he can eat tomorrow!! This is something he is really looking forward to; he said he is craving cinnamon toast. Let's hope that John can have his toast; he really deserves it. I really hope that he gets to go home very, very soon and head back to school. He has been through sooooo much, it breaks my heart to think of all the pain and suffering he has been through for me-there are no words to tell him how I feel.
Thank you once again for keeping John and me and our families in your thoughts and prayers. We got through these past 2 1/2 weeks with the support from the ones we love.
That is all for now; good bye 7 west, room 722...I WON'T be missing you...
As much as these next 2 weeks will be hard, I have to try to remember how good I am feeling overall. I am no longer in constant pain, my joints don't hurt anymore, I am not nauseous all the time, I am regaining my energy-all a result of my new liver from one very special person-John.
Please keep John in your prayers as he is still in the hospital. It is so difficult for me to be so happy about going home, knowing he will still be here. I went to visit him tonight, and his spirits are great, as usual. He is currently drinking contrast and going for a test later on tonight to make sure that he is healing appropriately. I am eager to hear the news from his test; if they come out well, he can eat tomorrow!! This is something he is really looking forward to; he said he is craving cinnamon toast. Let's hope that John can have his toast; he really deserves it. I really hope that he gets to go home very, very soon and head back to school. He has been through sooooo much, it breaks my heart to think of all the pain and suffering he has been through for me-there are no words to tell him how I feel.
Thank you once again for keeping John and me and our families in your thoughts and prayers. We got through these past 2 1/2 weeks with the support from the ones we love.
That is all for now; good bye 7 west, room 722...I WON'T be missing you...
Monday, November 2, 2009
Some updates & a special visit
First off, many thanks to my wonderful Aunt Terri for cooking me dinner tonight. Hospital food gets old, fast, so having grilled chicken, rice, and corn (one of my favorite meals) was a nice treat. She also snuck in some cupcakes and cookies! She wouldn't be my Aunt Terri if there wasn't some baking in the mix :) I just love her.
Anyway, I had a special visit from John's family tonight. John, himself, was unable to join as he wasn't feeling up to a visit, but his dad, John Sr., Mom, Doreen, and sister, Kirstin, came over to visit. With them, they brough a gift, which was very generous and not needed, but nonetheless, extremely sweet. Doreen said the gift was something small, but upon being handle the gift, it was far from small. Having this heavy box in my hand, I began unwrapping, to find a "Thing's Remembered" box. It was then I knew this gift was something special. John and his family got me an engraved snowglobe that plays "Amazing Grace". I will forever cherish this gift and it was always stay near and dear to my heart. Thank you, thank you. I had such a nice visit with John's family, we just missed John. Hopefully he feels better soon and can join in on the fun. Kirstin and I walked down to the play room to get the game "Trouble" to bring back to John's room to play together. I hope they are getting family enjoyment out of that! I can't wait to get to know John and his family better, I know there will be plenty more visits to come. I'm really looking forward to girl time as Kirstin and Doreen are awesome and relate well to my mom and me and I know will love my sister as well.
So, to update about today: I woke up in a great mood and full of energy. I ate a pretty big breakfast, put REAL clothes on (I got out of those ugly johnny coats) and took a few laps around the halls. Once I was out of the room, I didn't really want to come back in. I am sick of being cooped up in this tiny room, I really want to go home. But it seems like the doctors like to find reasons to keep me here. The newest word is that I have to start a high protein, low fat diet. The doctors determined this when they sent some of the fluid coming from my abdomen and sent it for testing. I have chylous ascites in my abdomen, which means that I am losing fat when the fluid comes out of the incision; which is a result of the lymphatic system leaking. So the doctors idea is that if I eat high protein and low fat, that the lymph system will stop leaking and the fluid will slow significantly. This means that I have to eat things like egg whites, drink loads of milk, and lovely carnation instant breakfasts. Thats basically going to be my diet for the next few days...at least. Needless to say, this news brought down my spirts in a heartbeat. I swear, sometimes I just can't catch a break. All the doctors were telling me to eat soooo much, so I started to eat really well, and now they're taking all the foods away from me that I love. Hopefully this stupid diet works and fast, because I can already tell I'm going to have a hard time with it. Sorry for being a "debbie downer" but I was really enjoying eating again. If this diet does work, I think they will still have to put some stitches into the open parts of the incision just to ensure that it stays closed. Thats basically all for today, I'm going to finish watching "Because I Said So" with Mom (the mother in this movie IS her), then try and get some sleep. Wish me luck tomorrow, I'm really going to need it.
--Alison
Anyway, I had a special visit from John's family tonight. John, himself, was unable to join as he wasn't feeling up to a visit, but his dad, John Sr., Mom, Doreen, and sister, Kirstin, came over to visit. With them, they brough a gift, which was very generous and not needed, but nonetheless, extremely sweet. Doreen said the gift was something small, but upon being handle the gift, it was far from small. Having this heavy box in my hand, I began unwrapping, to find a "Thing's Remembered" box. It was then I knew this gift was something special. John and his family got me an engraved snowglobe that plays "Amazing Grace". I will forever cherish this gift and it was always stay near and dear to my heart. Thank you, thank you. I had such a nice visit with John's family, we just missed John. Hopefully he feels better soon and can join in on the fun. Kirstin and I walked down to the play room to get the game "Trouble" to bring back to John's room to play together. I hope they are getting family enjoyment out of that! I can't wait to get to know John and his family better, I know there will be plenty more visits to come. I'm really looking forward to girl time as Kirstin and Doreen are awesome and relate well to my mom and me and I know will love my sister as well.
So, to update about today: I woke up in a great mood and full of energy. I ate a pretty big breakfast, put REAL clothes on (I got out of those ugly johnny coats) and took a few laps around the halls. Once I was out of the room, I didn't really want to come back in. I am sick of being cooped up in this tiny room, I really want to go home. But it seems like the doctors like to find reasons to keep me here. The newest word is that I have to start a high protein, low fat diet. The doctors determined this when they sent some of the fluid coming from my abdomen and sent it for testing. I have chylous ascites in my abdomen, which means that I am losing fat when the fluid comes out of the incision; which is a result of the lymphatic system leaking. So the doctors idea is that if I eat high protein and low fat, that the lymph system will stop leaking and the fluid will slow significantly. This means that I have to eat things like egg whites, drink loads of milk, and lovely carnation instant breakfasts. Thats basically going to be my diet for the next few days...at least. Needless to say, this news brought down my spirts in a heartbeat. I swear, sometimes I just can't catch a break. All the doctors were telling me to eat soooo much, so I started to eat really well, and now they're taking all the foods away from me that I love. Hopefully this stupid diet works and fast, because I can already tell I'm going to have a hard time with it. Sorry for being a "debbie downer" but I was really enjoying eating again. If this diet does work, I think they will still have to put some stitches into the open parts of the incision just to ensure that it stays closed. Thats basically all for today, I'm going to finish watching "Because I Said So" with Mom (the mother in this movie IS her), then try and get some sleep. Wish me luck tomorrow, I'm really going to need it.
--Alison
a message from Joe
So, as Joe was driving home last night at 10 p.m., he was dreading the thought of tackling our leave covered yard in the mornig as it would keep him from being up at the hospital with Alison. Then, as Joe pulled in the driveway in the dark, he thought, "something is missing". He realized, "the leaves", it was as if a big wind had come and blown all the leaves away. Unbelievable, not only have our family and friends cooked meals, taken care of our dogs and more, they are now taking care of our yard. The mystery remains, though, who is the mysterious leave blower-whoever you are, you are a life saver. Thank you, thank you , thank you!!!!
In gratitude,
Joe (and Karen, too!)
In gratitude,
Joe (and Karen, too!)
The start to a new week
8:00 a.m. Monday
Although Alison was woken every two hours for blood pressure checks, medications and fluid bag changes, she is up this morning with smiles and "energy". The transplant team was in and indicated that she is doing well-Alison wanted me to be sure to tell everyone that the doctors indicated that her liver functions are perfect-way to go John! The team will now report to Dr. Emre and he will be in to assess and develop a plan for moving forward. We asked about John and the doctors shared that he is also doing well this morning-what a great way to start the week-positive news on all fronts-hopefully we're starting a new trend. Perhaps the biggest decision in Alison's "court" right now is how to move forward with the fluid issue-we'll see what Dr. Emre says about that-we're sure he will come up with a good plan. Alison has her nurse, Melissa back today-that's a good thing-Melissa is young and personable-someone Alison can relate to. We learned that the nurses have created a team for Alison with a primary nurse, an associate and then other nurses who sign up to be on her team. This is an interesting design to providing consistent care for Alison-all of her nurses are wonderful, so we feel very lucky. We will try to post later today after we have been able to talk with Dr. Emre.
Have a great day,
Karen
Although Alison was woken every two hours for blood pressure checks, medications and fluid bag changes, she is up this morning with smiles and "energy". The transplant team was in and indicated that she is doing well-Alison wanted me to be sure to tell everyone that the doctors indicated that her liver functions are perfect-way to go John! The team will now report to Dr. Emre and he will be in to assess and develop a plan for moving forward. We asked about John and the doctors shared that he is also doing well this morning-what a great way to start the week-positive news on all fronts-hopefully we're starting a new trend. Perhaps the biggest decision in Alison's "court" right now is how to move forward with the fluid issue-we'll see what Dr. Emre says about that-we're sure he will come up with a good plan. Alison has her nurse, Melissa back today-that's a good thing-Melissa is young and personable-someone Alison can relate to. We learned that the nurses have created a team for Alison with a primary nurse, an associate and then other nurses who sign up to be on her team. This is an interesting design to providing consistent care for Alison-all of her nurses are wonderful, so we feel very lucky. We will try to post later today after we have been able to talk with Dr. Emre.
Have a great day,
Karen
Sunday, November 1, 2009
Sunday, Sunday........
After a nights sleep at home, mom was a bit refreshed this morning. Alison had a pretty sleepless night with two hour blood pressure checks and emptying of fluid bag. She was able to walk two circles around the unit and then sat up in the chair a bit. Mom went to visit John (Alison's donor) today. He looked fantastic-hopefully, the major challenges are behind him and he is now on the real road to recovery. His mom and dad then came up to visit with Alison-it really feels as if we have known all of them forever-we can't wait to meet John's sister and for them to meet Alison's brother and sister. That time will come when we are able to get both John and Alison home and healthy. Wow, Alison and healthy all in one sentence-that's amazing and so hopeful. We are eager to see Dr. Emre, as he is back tomorrow. We are very interested to hear his read on this fluid situation with Alison-we know that he has been consulted all weekend but to talk with him directly is always so much more comfortable for us. Well, we are off for another walk around the unit-have a nice night everyone.
Joe and Karen
Joe and Karen
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