Hello Everyone- A note from Melissa

 “Are they going to call??” “Have they made a decision?” “Are they still thinking about it?” “What's going on, maybe just maybe they forgot me.” HUH yeah right them forget about MELISSA? “Please, like that's really going to happen.” This is going on my second week back home and I’m so excited that I live in Arizona and NOT Pittsburgh. There is nothing wrong with it there, I’m just a HOT KINDA GIRL.... Well, I mean I like it hot not cold! There are times I wanna write on here and let everyone know how I am doing. It's hard to write when I don’t even know how I am feeling. I have days when I feel pretty good and days I just wanna cry and don’t wanna talk about it. Then I turn right around and can’t stop thinking about it. While I was there I learned a very big lesson in life. That is to listen to your gut feelings and you don’t have to do anything you don’t want to do. Before, I went I thought to myself “I am strong, I am a tough girl, I can handle this.” I will go get my testing done, come home and wait for the call. Then when they call and tell me when I need to go I will move down there and wait. I will just keep waiting to get a new heart and liver. Then come right back home and feel great. One of the cardiologist said, to me, “Melissa your not going in to buy a new car, this is a life decision that could cost you your life.” To me, I don’t feel like I am ready for this. Would you be ready to kiss your family one last time and go under this type of surgery? Cause that's what I would be doing if I said alright I wanna go ahead and do this. Nobody knows the out come of what this will be. We can all pray, and hope, and have a good feeling inside us. But, we really don’t know if I would make it. Is the risk really that worth it? I asked the doctor, if they call me and say that I need to have this surgery it’s time, but I say I am not ready yet, will I have another chance? He said, “Yes, that YOU need to be ready for this because YOU are the one going in for surgery, not anyone else but YOU, Melissa, has to make this choice.” It won’t be up to my Mother or Father or anyone in my family. For the first time I felt like I got that control back. That I am the one who controls my own life. So I will wait for that call and once I get it I will let everyone know what they say. I just hope that I won’t let anyone down if I decide to wait until I am 100% ready. Please continue to pray and I thank everyone of you for all your help and support during this time. 

Love your Honeybee

Pittsburgh Day 7

We had to be at the hospital at 0745 this morning. Her first test was an ECHO at 0800. During the ECHO Melissa had a student watching, his name was Sil, he had a heart/liver transplant 2 years and 5 months ago. He had a lot of encouraging words and told her what to expect. He told her that this week would be very stressful and when she was done to spend some time thinking about everything before making a decision. I think that she felt comfort from him. At 0915 Tracie Sabatine the Heart Transplant Coordinator took us to meet Dr. Tueteberg, Cardiologist. (man, was he cute). I stand corrected on Melissa's weight this week, on Monday she weighed 104. After everything that happened this week and all of the Zaroxolyn they gave her she is down to 93 lbs. That is a lot of water weight. Her little tummy and legs were really big yesterday, today she looks like a supermodel. This cardiologist told us more of the same, he talked about high risk because she has had 4 open hearts in the past and scar tissue, he also added that they may even push her back a year or two or even three depending on how the tests come out. He said they only pick people that are good candidates. I asked him about the emotional side of things and he said to expect a rollar-coaster. (that is an understatement)....He also added, "this will never be low risk, even in the best situation." He told her that neither organ is sick enough alone for a transplant, but together they may be. (Melissa's main problem is the Protein Losing Enteropathy, she loses protein into her digestive tract, and this is getting worse and can cause heart failure, that is why her weight changes so much. She goes into the hospital about once per month to have the fluid drained off of her tummy). When she is full of fluid like that, she gets short of breath and extreme fatigue. They don't want her to get too sick either, it is all about timing and balance." We asked the question, "how long can she go like she is, without the transplant?" We already knew the answer, they don't have a crystal ball. Melissa is so high risk that they are not sure that the risks outweigh the benefits. We will hold our breath until they get back to us with answers.

Melissa was then taken to do an exercise stress test, she walked for a mile and a half. Whoo Hooo!! You Go Mel!! The girl told her she was amazing. She has no idea.............Amazing doesn't touch her.

Then we went to lunch, (how rude). Melissa could not eat because she was having a right heart cath in one hour. For all of you non medical people, that is a catheter that they put in your neck vein and run it down to check the pressures in your heart chambers. This is a real simple procedure that takes only about 15 mins. (On a normal person).......After about 1 1/2 hours, I started to panic....I walked back to ask the nurses if she was okay and they called back and advised me that they were having trouble with her anatomy, they tried and tried to get past the right atrium but could not. They wanted to use dye to be able to visualize, (HELL NO!!) they knew that they could not use it. I told them that we brought a CD with a pulmonary angiogram on it and they could look at it. Well, we had given it to the Cardiac Surgeon and they could not find it until Melissa had had enough. They did not sedate her before hand because "it only takes a few little minutes." Nothing seemed to go easy for her this week and she is extremely worn out and discouraged. We are all very tearful.

We went back to Alexanders for dinner because we knew that the food was good, and we had taken enough chances this week. Thank you Ken (Melissa's dad) for dinner.

We are leaving tomorrow, can't say we are sad about that. Pittsburgh people have been so incredibly gracious, but we want to go home.

Melissa, Judy, Tammi and I are so thankful for all of the support in words and prayers. Please don't stop them. Visit Melissa's caringbridge site to keep up and to leave her words of encouragement.

www.caringbridge.org/visit/melissarowland

Pittsburgh Day 6

This morning Judy and Tammi took the shuttle while I updated the story and then I drove in to get them. We had to wait a long time to be discharged and while waiting we had a long visit with the Cardiac Social Worker. We found out that we can not stay at the family house when we come back unless it is mandated by the doctors that she is that close. (It is for short term stay, or mandated) This was rather upsetting to Judy because she is liking it here now. We will have a whole new search when we get back. This is a bit discouraging although, I know that everything will settle down when the stress of all of this is less and, we have made a lot of friends here who want to help. ( We are going to be doing some massive fund raising while they are in Pittsburgh). Well.... Melissa finally got out of the hospital at 3pm today. We came back to the family house and fixed up a bit. Then we went to the Pittsburgh Aviary to look at birds, it was a small diversion. The lady there told us where to eat, but it was not so good. We drove around Pittsburgh to look at the sights, and let me tell you.....it is difficult being the driver with 3 live navigators and two hand held navigators. I do need to offer the people of Pittsburgh an apology for my driving. I ran 2 red lights, went down the streets the wrong way, had people honking at me and I totally never know what lane to be in. I am sure the streets will be safer for all of you on Saturday. Although we all thought my bad driving was comical, it was not what Melissa had in mind for fun. She is still feeling a little shaky from the steroids and looking a little down. Actually down right sad. Melissa has the hardest decisions to make and is reeling with apprehension. Mind you, she has not even been accepted yet. The risks of taking a chance on surgery are scary and the risks of doing nothing are scary. Judy is completely overwhelmed about how it will all work out. Melissa's life, where they will live, how she will get around in this strange city and what will happen to her job while she is gone. I wish I knew the answers, but all we can do is pray........ Please continue your prayers and good thoughts. Thank you all for the notes. T

Pittsburgh Day 5

I am not sure how to start this note today, except to say it was a hard day to say the least. We have today off, hopefully. Yesterday we started at the Liver Clinic, first person we met was Zola. Zola was born at Presby Hospital and then worked there her entire life, now she is volunteering. Her job was to place us in this little room and coordinate all of the people who needed to see us. This lady was VERY energetic, to say the least. Next person was a retired Dentist/now volunteer who had a liver transplant 20 years ago. He is doing really well now, he needed to take Melissa's picture for her medical record. (curious).... Then the Liver Anesthesia Dr. came in and he asked more questions, did an exam. The he talked about his part in the surgery. Every time someone comes in the room, they give us all the dirty details about what will happen, all of the complications that could happen and then end it with, IF you make it, your life will be so different. Extremely scary, yet needed for us to process what is really going on. He added a Pulmonary Function Test to the list. Next in was a blood draw lady, they have to a blood type test twice. She got her on the first stick. Yea...this is the highlight of Melissa's day. Then comes Dr. Paulo Fontes, Director and Transplant Surgeon, this man is beautiful.........he spoke so kindly, yet so honest to us about Melissa. He read her reports, added a few test, did an exam, talked about scars. He says he needs to know Melissa very well. He said, "We need a game plan, here it is. We need to make sure that the surgery is indicated, make sure it is safe, and then make sure it is do-able." Size will be an issue, she will need to be listed on the pediatric list as well as the adult list, pediatric donors go to pediatric patients first. Unless, it is a very small adult it will be a longer wait ....And he said, "Most Americans are all big and fat". He told us that the surgery will be very long. They will start with lines everywhere, both groins, neck, radial arteries, veins, etc...... They will do the heart first, it will take about 4 hours, when they are done they will leave her chest open and the Liver team will come in and asses the situation, hemodynamics, risks, complications and decide if they feel she will survive from a heart standpoint, and if she can tolerate the Liver surgery. If not an alternate would be on standby that needed just a liver and they would give it to them. At this point they would sew up the chest and send her to ICU, if she survives she would be right back on the liver list again. You can have two separate donors, it is just not ideal. If she is stable and looking good, the Liver team takes over for 7 more hours of surgery. He was happy to see how healthy Melissa is. Then he talked real frank about life. He said, "It takes a special person to live with this kind of sickness. Some people complain about a bad hair day. Waiting time for a heart is not so long, and being double listed bumps her up on the list. He said that we need to be prepared for anything, being called then again being sent home, even death". This is of a magnitude and complexity that we have not known, and believe me Melissa has been through a lot. He said, "We are playing Major league now." He said, "we have done 13,000 transplants here and there is no routine patient." Then he talked about outcomes and everything she needs to do for the rest of her life. ( Not room for this in this note). When he left the room, we all had a good cry. Wow, a lot to take in. Then Zola whisked us to the radiology department for Melissa's CT scan. She went to Interventional Radiology for a micro puncture IV that they put in under x-ray. She drank her gallon of barium, and off she went to get her CT scan. Judy, Tammi and I are sitting in the waiting talking, I hear them call a "condition c" which I had figured out already meant "code" here. They called it to radiology ct room, Judy and Tammi didn't hear it and I was thinking to myself, surely that is not her. A few minutes later they were coming to get us, I asked the lady, "does the doctor want to talk to us?", she gave me that hesitant smile, like I can't tell you, but something bad happened. When we all go to the door, she told us that Melissa was having a allergic reaction to contrast and they were taking her to the emergency department. We got in the room and I saw the scariest sight ever, Melissa's face looked like someone was chocking her, she was the brightest red you ever saw, her face was swollen, she was having severe chest pain and shortness of breath. Along with shaking and crying. She was so scared. I have not seen someone have an allergic reaction like that after being pre-medicated. There were 30 people in the room, which is very intimidating on this side of things. They quickly got her to the ER. While in the ER they did a EKG and compared to the one of the day before and it was showing changes. They immediately did more blood work to rule out a heart attack. They admitted her to the hospital and we slowly watched her get back to her normal color. All the tests came back normal and she felt a little better. She has recovered from this reaction physically, but emotionally she has not. We talked a lot about her dying and she is very scared to die. We all are very scared. I know at this point most people are saying, "keep positive, be strong, la, la, la" But fear is really big now and we are giving some attention to what is. Then we will regain our positive march. Judy and Tammi are taking the shuttle this morning and I am writing this note and then picking them up. I think that we all slept for the first night last night. We are looking forward to a calmer day, hopefully seeing a museum (that is what Melissa wants). Please keep us in your prayers. Thank you all for the continued words of love and support. Terri

Pittsburgh Day 4

Today turned out to be a much better day. We started out a little earlier and went to Presbyterian Hospital. Our first appointment was with a Dr. that didn't show because they just got a transplant donor. (Kind of exciting), the next Dr. didn't show either, finally Dr. Toyota came in and we could hardly understand a word he was saying. He was kind and funny. He gave us the risks (80% chance of surgery survival, 85% survival 1 year), talked about the surgery, he talked about her scars, he told us how he felt about doing it, which was pretty good. He said it would take about 11 hours to do the surgery, the heart first, then liver. They have done about 15 to 20 heart/liver transplants with excellent outcomes. Then Tracie came in and she is the Heart Transplant Coordinator. She told us how we would be listed, (which we are not yet), that Melissa will have to be at the hospital within 3 hours of call, there are some times when people are called and they don't get the organ for various reasons. Then we walked to Radiology, (while we were there one of our new friends from the Superbowl party showed up to give support) In Radiology she got a carotid Doppler, peripheral Doppler, chest x-ray, EKG. Then they gave her the barium for the CT scan with/without dye. She drank almost all of the barium and then they took her in to start an IV, as he was getting her history, he asked her if she had had a CT with dye before and how it went, Melissa told him it went well, she just had a little itching and they gave her benadryl. SOUND THE ALARMS !!!! They immediately canceled the test until tomorrow. Sent her home to pre medicate with prednisone. Well, she didn't have to finish the barium, and that made her jump for joy. Also, that meant we were done at 2:30p. Went to lunch and then we have been hanging out, making connections and fund raising. I did take some pictures (legally) of the house we are staying in. (This is for you Jeff)

Pittsburgh Day 3

So, yesterday was day 3 ( are we sure about this? felt like day 999). We thought that this day would be pretty easy, talk to the shrink, get some info, see the Liver Doctor. We showed up at Montefiore Hospital at 0900, first off Melissa saw the shrink, (as she calls it) her name is Ginger and she really liked her, they had a great talk that we were not privilege to. Her appointments were originally scheduled with plenty of time in between, which we were glad to be able to eat, rest, whatever. Well, several people canceled their appointments and Melissa ended up going back to back all day. The next step was to have her blood drawn, (just for liver mind you). She is an incredibly hard stick but luckily they only had to stick her 4 times to get the 33 vials of blood (not exaggerating). Mind you she is only 92 pounds and they took half of her body weight in blood. She was not feeling too good after this. Then they rushed her into the Social Worker Kim's office, nice lady gave us all sorts of information about everything social. She even gave a talk about how to fund raise. (Apparently, she doesn't know me). Super nice lady, very helpful and sweet. Next appointment was with the Liver Guy, Dr. Chopra, very funny, worked at Mayo in Scottsdale for awhile, thinks are weather is terrible. When we first went in we met Karen, she will be our Transplant Coordinator for the Liver side of things. Lots of information, questions, life history. It is like being in a whirlwind, and Melissa was not feeling so good. When the Liver guy got her labs, her potassium was only 2.7. She immediately downed 4 big potassium pills and when her appointment was over they escorted us via wheelchair to the emergency department for her to be tested again. Tammi and I sat in the waiting room while Judy went back with her. Melissa was ready to cancel the whole deal right here. While I was waiting in the waiting room, I was talking on the phone to my mom, I realized that I hadn't taken any pictures all day, so I took a quick picture of the emergency department sign, when suddenly I had a encounter with the law........I got to meet my first mean person in Pittsburgh. A 6 foot 4 inch, 300 pound grouchy man was suddenly in my face, he said he was taking my camera. What??? This was serious, like I pulled a gun out or something. I was freaking out and said, "no, you can't have my camera, I am not from here, blah, blah, blah". He very sternly marched me out of the hospital backwards. I was stunned to say the least. Finally, after about 30 min he let me back in and took my camera until we were ready to leave. We sold bracelets to the Dr.s and Nurses in the ER. We went to Paneras for dinner, watched the bachelor and went to bed. Today is the Cardiac side of things. Thanks for all of the notes of support and friendship.

Pittsburgh Day 2

Today was certainly a difficult day. We started out getting ready for church and then the sudden realization of what we are doing here in Pittsburgh really set in. I won't go into detail about this, but there was some flooding of emotion to say the least. We never made it to church. We went to Starbucks for coffee and then to a bagel store for breakfast. Then we figured out how to use Judy's navigator. This was a real learning experience while driving the streets of Pittsburgh. (4 women in the car who were already strung tightly). Oh yeah, funny moment.....They have a lot of one way streets here. I found that out while going down one the wrong way. (It is amazing how laughter can ease the tension). Then we went to look at the other family houses. The one we are at feels like a old folks home or a hospice. Well, after looking, they all have the same feel. This is very discouraging to Judy and Melissa. We finally found a Sushi place and man did we eat. Well, except Judy....she didn't like the raw idea, but I do have to give her credit for trying. We bought some groceries and headed back to the house. Everyone in the house was getting ready for the Superbowl, hanging out in the kitchen was not our idea of fun. So, we walked next door to the Marriott to watch the game....boring. Nobody was there, so Tammi and I decided Melissa needed a little reprieve. We ask the guy at the Marriott where to go, he directed two blocks down to a bar called Silky's. It was rather intimidating at first, but we walked in and got invited to sit at a table with some incredibly gracious people. We had a much needed good time, and let me tell you about the people in Pittsburgh.....my goodness they are nice. We have met so many people here already, met a guy whose dad had a heart transplant, a guy who works with the transplant team, a Realtor, students.....Everyone here has a connection to this hospital and pride in their city. Incredibly heart warming. We were given business cards, phone numbers and offers of everything from a home cooked meal, help with rides, apartment hunting and marriage.

Pittsburgh Day 1

Good Morning,

'Brrrrrr', man is it cold here. But contrary to popular belief the people are incredibly nice. We got in about 4pm, I had heard from someone on the plane that the biggest storm of the century was coming on Mon or Tues. When we got the the rental car counter I insisted on a four wheel drive. (fear here). I haven't driven in snow in 21 years. Yikes!!! (My name is on the donation account so I have to be the driver). It was double the price. I didn't care. We get in the Nissan Xterra, and Aunt Judy has a navigation tool, that we can't get to work in Pittsburgh. So, luckily, Tammi has one on her phone. We got to the family house with little problem. (little doesn't mean none). Then we went to a parking garage, that didn't belong to the family house. We got stuck inside, Tammi had to get out and push the button on the in side so we could go out the wrong way. This may have been the first time we all almost wet our pants. Then we got to the house and heard all of the 'RULES' many, many rules. We finally get up to our room and we all decided that the house had a hospice feel. None of us like this. The emotion of it all came flooding in. We decided to go out to dinner. So, again we are navigating through the town to find a Italian place. We didn't go to far and found Alexanders. the food was pretty good, wait was really long. Service was excellent. We told them we were staying at the Family House and immediately they got even friendlier. Invited us back to watch the Superbowl. Some guy in the next booth, was willing to leave his date and talk to us about the night life. I think if Tammi would have wanted to go, he would have left his date there and taken us to the bar. Whew!! Then we came back to the dorm and went to bed. We want to see a little of Pittsburgh today, we are starting with Church. I have a facebook connection for church about 6 miles from here. We'll keep in touch.