Do you have a liver transplant story?

I want to hear! Are you waiting for a liver transplant or are you looking into medical tourism? If so, I want to know your experiences. Share your story so we can help educate Americans with the options they may have.

Did you experience a liver transplant in the US? Were you a live donor? How was your experience? Inquiring minds want to know.

6 month follow up

I a lot of time off the blog, but I continue to think about the purpose of this blog and one of the purposes was to educate people about being a living liver donor. So, there's a lot of space (6 months worth) that needs to be filled in. Rather than give all the details, you should know that life for me right now is great. My body has recovered from the surgery and in September I went into Kaiser for an ultra sound. My doctor told me that my liver had grown back completely and that my blood counts looked great. I know my liver has grown back because my appetite has come full circle. In fact, I'm at my pre-surgery weight.

I have found that my trips to the gym are pretty much back to normal except for my ability to do a full sit-up. My lower abs didn't take as much of a cut as my uppers. So, I'm working on increasing my abdominal strength. I found jumping a little strange at first, but fine now. I can't quite explain it, but a new scar feels like a growth on my body. The skin around it is a little numb still and I imagine it will always be this way. The itching is still there at times, but the scar looks really good. Maybe I'll take a picture of it for you.

I appreciate all of you following up with me to see how I'm doing. I am grateful for a healthy recovery, but I never had any question things would be fine with me.

We need your input

It's been a little over 2 weeks since our father's passing and we continue to be deeply saddened yet very thankful he is no longer suffering. Neysa and I know the value of the trip we took with our father and we spent priceless times with him during this entire process. We greatly appreciate all the gifts, cards and donations that have been given. You have given our family strength and we love the stories you've shared. We remember our father (brother, uncle, friend, significant other, grandpa, x-husband, father-in-law and all others) and all the happy times he gave all of us. We miss him dearly.

If you would like to give the gift of life, I've added a link to update your organ donor status on the right side of this blog.

My intention for this blog is to educate people all over the world about liver transplants and I hope that it will continue to do this. I don't want people to be discouraged by our story because I know if we had it to do over again we would. We look back at our options without health insurance and I'm sure our family would chose Medical Tourism over and over again.

So now it's your turn, what would you like to know in this blog and how can I continue to help people who are in need of an organ transplant?

Thank-you

Many of you have been asking where you can send flowers or what you can do to help. If you would like to contribute to the "Michael Quintana Fund" to help us with medical expenses, the link to make this contribution is on the first page of this blog. We would also like to encourage all of you to consider being organ donors. In order to do this you must register with http://www.organdonor.gov/. (Just registering as an organ donor when you get your drivers license is not enough.) Our family would like to thank everyone for your love and support through this difficult time.

Coming Home

We are sitting in the Delhi Airport waiting for our flight to depart. There is nothing more that we want right now than to see our family. Yesterday was a long day of paperwork with the hospital and U.S. Embassy. Renee and I had our own ceremony to have our father cremated. It was actually quite amazing and peaceful. We had my I-pod with the playlist of his favorite music, so we covered his body with flowers and told him that we were here to let his spirit be free. We both said our good-bye's after listening to "our song". We love him dearly and have been blessed with this time together.

Gone with the angels - sueño con los ángeles.

This is the blog that we never wanted to write... and that you never hoped to read. Some of you have already heard the news, but for those of you who haven't... my father passed away today around 2:30 p.m. India time- 3:00 a.m. Denver time.

It had been a long night for us, we were both restless and felt something wasn't right. Our intuitions were confirmed with a phone call from the duty doctor at 2:00 a.m. We rushed to the hospital, (as I posted in the earlier blog). The doctor ensured us that he was stable so we returned to the hotel and slept for a few more hours. Early this morning we received another phone call requesting that we come to the hospital to give us an update. When we arrived his condition had worsened and he was not responding to any of the medication that they had given him. They had recessitated him several times before telling us that we only had about twenty-five minutes left with him.

So we stayed by his side and assured him that he didn't need to be afraid. We told him that Grandma and Grandpa were there to guide him through this transition. We reminded him, name by name, of everyone who loves him and of the things he loved in life. He didn't need to be in pain any longer. We promised him that he would be with us every single day in every decision that we make, and in everything we do. We also told him that he was a good man and an amazing father.

He was not consious... but we know his spirit was there. Renee and I held hands and prayed until he was gone.

In Critical Condition

I don't know what to say, the doctors have said that he isn't responding to the blood pressure medication and he is on a ventilator to breathe. The doctors say that he is in critical condition. We will keep you posted. We are trying to contact family so please stand by your phone. We didn't bring Renee's cel to the hospital and it has most of the numbers in it so please post your number on the blog..

2 am phone call

We awoke from a phone call at 2 am from the duty doctor saying that they had to put him on a ventilator because he was having trouble breathing. They also had to put a tube going into his stomach to release some gas. I had a hard time understanding the doctor when he called so we immediately jumped out of bed and took a taxi to the hospital only to find that he was okay and in stable condition. They did give him a sedative and are planning dialysis tomorrow. His chances of getting out of ICU in the next few days are not looking good. But Renee and I are feeling like it may be the best place for him for now. We'll keep you posted.
3:12 PM

Now it is morning and the doctors said he was very sick last night and now he is on a lot of medications. We are headed down there to see if we can get a more detailed explanaton.

Update

I left my computer with my dad today and showed his nurse how to play movies for him to pass the time. We also showed her how to open the blog, so if you have anything that you want him to read now would be a good time to write something short.

Renee and I spent the day at the hospital again trying to follow through with the progress of moving him out of ICU. We were told that he is able to be released, but they are waiting on a bed to open up. So that was good news that the doctors feel he is ready to move. We thought that if we waited around it may speed things up... but it didn't. They decided not to do dialysis today and will reassess it in the morning. Hopefully it won't postpone him moving out of ICU tomorrow because if he doesn't get moved tomorrow then he won't get moved til Monday.

Renee is feeling better tonight. I, on the other hand, was up all night with the same thing. Yesterday I kept denying my sick feelings, but at 1:00 in the morning there was no denying it anymore. Nonetheless, I think whatever we ate has been through us both now and hopefully tonight we will get some sleep and feel like new tomorrow.

We didn't push too hard to see him today because of our sickness, but when we talked to the doctor he felt that he was doing a little better mentally. He ate a banana and something else today and has had a little bit of output. When we spoke to him he still is saying "to get your butt down here and get me out!". They are being careful with the medication that they are giving him to protect his recovering liver and kidneys- so Uncle Al was right. We will be back first thing in the morning to see what the next step is.

One last thing... if you want to send something, you could probably just send it with Uncle Dave when he comes.

Not Good

Today has been the worst day for us so far. My dad is miserable and depressed and suffering from what the doctors call "ICU phsycosis".

We awoke to a phone call from Susan telling us that he needs us to get him out of there (ICU). Immediately we took a cab and demanded to speak with Dr. Gupta. We caught him as he was going into the ICU and I told him that we didn't feel he was being taken care of properly and that he doesn't seem do be doing well mentally. I asked if we could allow for him to have a "break" from the ICU for a day or two then readmit him if needed. The doctors unfortunately still feel that the ICU is the best place for him to be with his immune system so vulnerable. I argued that his mental state is so poor that I don't think he is able to heal in this state of mind. I feel that he is going crazy with the lack of sleep and inability to communicate with the nurses. My father is not a difficult or demanding person, so to see him in such a miserable state makes me feel like something is really wrong. Dr. Gupta explained that this kind of depression is normal "ICU phsycosis" and that after such a traumatic surgery it is inevitable that when the drugs start to ware off there is a period in ICU where the patients go through this. I just wish they could allow me to be in there to make it easier. To rub his feet and back, read to him to pass the time and help to explain to him why the nurses are or are not doing certain requests that he may have. He is so frustrated and angry... and my dad is never angry.

Dr. Gupta allowed for me to see him, Renee sat this one out as her stomach is in knots today and we didn't want her to get too close. I had written him a note in case they didn't allow me to see him. I read it to him. I explained that he really needs to tell me exactly what is going on in there so that I can fix it. He told me that he just wants someone to rub his feet. He wants privacy when they expect him to go to the bathroom, he wants to get out of bed (which they say he is not allowed to do because he is too weak), he wants someone to rub his back a few times a day, he wants ice cubes when he asks for them- not 30 minutes later. Sometimes he wants his glasses on/ off. He said they only give him sponge baths and haven't brushed his hair. Just basic things. So I told him I would take care of it. He begged me to get him out of ICU and said over and over that he can't do it another day.

The only words of encouragement that I could muster up without giving him false hope was to remind him that he just had a MAJOR surgery... they just took one of your organs completely out of your body and replaced it with a brand new one. You can't expect for this recovery to be easy. There are going to be good days and there are going to be days that fell like absolute HELL. That is the payoff. But once you get through this, things WILL get easier. Luckily, your liver is doing wonderfully and your kidneys are making positive progress! Just hang in there and there will be better days... I promise. Don't give up now, you have come too far. The nurses came in and asked me to leave. His body immediately tensed up again and he said "please don't leave me... don't leave the hospital." I told him that I wouln't and that I was going to go talk to Dr. Gupta again and see what I can do. I also told him that I was going to get a second opinion on the situation and then I would call him.

There were a few things he said while I was in there that did make me feel like he was suffering from "ICU phsycosis". He told me to be careful when I was talking about the nurses "because they are listening to everything we say". He also thought it was 1:30 in the morning when it was really 1:30 in the afternoon.

Dr. Gupta denied both of my requests. "Maybe tomorrow" he replied. We called a friend of Titi and Cedricks who is a Dr. in the Cardiology division and went to meet with her. We explained the situation and had her call the doctor on duty to ask a few questions. After getting all of the facts, she too agreed that rushing him out of ICU would be a bad decision, especially with his kidneys and the latest infection. This depression is normal, and I know it is hard for you to not be able to help him but unfortuanely it is part of the process.

So I did the only thing I know how to do when things aren't getting done. I made a list. I made a list of the simple requests from my dad, and gave it to the doctor on duty. I went over every step and asked if they could give him something to help him sleep. Then I called him and told him that they won't allow him out of ICU, and they won't allow me to be in ICU to take care of him, but that we will be close by. I explained that I did give them a list of daily things they need to do for him, and said that if the nurses don't do something for him that he needs, he should request to speak with the doctor on duty and ask him to get it done. If you want your feet rubbed- say so. After telling him that they would give him a sleeping pill tonight, he seemed to be a little more relieved. I went and got him a large glass full of fresh ice cubes from the coffee shop too.

Renee is a bit nausious today and is feeling like Bruce Lee kung-fu kicked her in her side. We picked up a prescription to help her fell better and have taken her back to the hotel to rest and will return to the hospital later tonight.

Out of Surgery back into ICU

Jennifer, I just saw your post and we apologize we didn't post again. The surgery was over about 1am our time and the Doctors said it went fine. They said they started a little late and wanted to make sure they took as many precautions during the surgery as they could- this is why it took longer than expected. I snuck into ICU with one of the doctors- of course with Dr. Sabash Gupta's permission. I spoke to dad for a few minutes and he was disappointed when I told him they are keeping him in ICU today to make sure everything went well with the surgery last night. He was talking and aware of things going on around him, but sleeping when I first walked into the room. I really pray they get him well soon. We have the duty Doctor's cell phone number and they said they will give it to dad from 7-7:30am and 4-4:30 so we can talk to him. The connection seems to be better on the cell phone. I hope this works.
Neysa and I went to the hospital this morning and I had another interview with an Indian news television station. It was a fun interview because it was interactive with Dr. Sabash Gupta. They didn't know exactly when it will air nor did they have a business card to give us about the station. Dr. Gupta said he would get me the information when it becomes available. The interview was made for the Apollo hospital to have the Indian people gain knowledge about living donor liver transplants. Before me they interviewed a Doctor from the hospital who had a liver transplant 5 months ago.

I have my internet working now, so what questions do you have?

Minor Infection

Dad was not moved out of ICU today because they found that his incision site was a little infected this morning. The doctors had decided to remove the infection completely so it doesn't become a problem. Renee and I went to the hospital around 3:00 to sign the papers to allow him to have the minor surgery so they could get him in tonight. The doctor said that his surgery would be at 8:30. So we waited until then so we could see him and talk to him on his way down to the Surgery Center, very sneaky on our part since they won't allow us in ICU. He looked a little pale and his arms were really swollen and bruised. He asked us if we were going to be around for a bit and we said yes. We told him to stay strong and explained that this was just a minor surgery and nothing to be afraid of. We also wanted him to understand that they wanted to monitor him for 48 hours before deciding if he could be released from ICU. I know that he wants to get out of there really badly. Every day that he doesn't get out of ICU he is really disappointed. But because he is so prone to infection, and will continue to be, the ICU is probably the best place for him to be until the doctors decide to release him. I know they are monitoring him 24-7 and taking care of him, but I don't think he is comfortable there, or happy, and i know that I could take better care of him in every other way except protecting him from infection, and that is the most frustrating part. I hate being here and not being able to see him.

2 weeks after Liver Transplant surgery

Neysa and I went to the hospital yesterday and I was able to get my bag removed. We met with Dr. Gupta and he says he wants to wait and see what the kidneys are going to do. Ideally he wants to wait 4-6 months because he feels they are making some improvement. We asked why dad was still in ICU and he said because the nurses are having to do a lot for him. Neysa agreed and assured Dr. Gupta that she can take care of dad in a regular room and we all agreed that it would be better for him mentality. So, Dr. Gupta said they would do one more dialysis and then tomorrow (today) he will be moved into a room. Neysa was able to get "special permission" to go see him for a few minutes. He appears to be doing better. 

We called this morning and were told to come to the hospital this evening. I really hope it will happen today! Dad is really wanting to get out of there.

Neysa and I have tickets to return to the US on 2/28/09. Neysa has to leave at that time because her month of May is full of weddings. I on the other hand am trying to see how much longer I can stay to support dad. We have asked Uncle Dave to come out early May and we're hoping that our trips will overlap some so we can show him the ropes. Amber is making some confirmation calls for me for parties I have in May and I'm trying to keep that in perspective. She says my first party is the 7th but I'm sure I could find someone to cover it if need be. I would rather not leave dad by himself here and with the help of flight attendants and the airlines I'm sure I will be able to fly alone. I am not able to lift much right now and will not be able to carry much of anything onto the plane by myself. 

Aunt Suzi- maybe you could check to see the availability I have to postpone my ticket? You can just send me an email. Thanks!

As far as my recovery goes- I am getting around just fine. I feel I walk with an "old lady lean" to the right side so I got an abdominal support belt to wear. It seems to help the strain on my back where I feel pain come and go. I actually slept the whole night without getting up! I find sleeping on my left side easier than anything. I can't really lay on my right side or stomach yet. I'm learning how to eat again with 1/2 the liver and wished they would have explained it to me before. I didn't realize that the liver processes all the food you eat and when you only have 1/2 the liver you can only eat 1/2 the food. (I wouldn't recommend it for a crash diet though). I would imagine it's a lot like having 1/2 the stomach. So I've been eating little snacks (meals) about 5-6 times per day.  Currently they have me on 3 medications: Oflox, Zevit and Pantocid DSR. I'm off the pain pills now!

Just Waiting

Neysa and I relaxed in the hotel room today. We ordered breakfast, lunch and dinner in. Neysa made it to the gym and I've been relaxing, napping, reading and working a little. 

We spoke to dad twice and he seems to be very anxious to get his hair washed. The Doctor's are talking about moving him out of ICU but haven't told us a day yet. Neysa and I plan on making a trip to the hospital tomorrow to try and get my drainage bag removed and check in on dad. We're really hoping we can catch them moving him tomorrow. This morning the Doctor told us he had produced 300ml. Good news. 

Out of touch

First off, I must apologize for being out of touch the last few days. The internet at the hospital has been down. Renee and I decided to make a video for her last day in the hospital. Hope you enjoy it! Dad is doing a little better. His kidneys are slowly producing more unrine - 200ml yesterday. Which still isn't a lot, but it's better than nothing. He is still in ICU. But is starting to make sense and even joke with the nurses. Today we were allowed to leave him a book and my i-pod, with a playlist of his favorite music. I wrote him a funny note too- since the nurses still won't let me see him.

We spoke with the kidney specialist yesterday to get a better idea of what we are looking at for his recovery. He said that he wants to wait another 4 wks before deciding if it is necessary to do a kidney transplant. That makes me feel confident that they are not just trying to make money and sell us a "quick fix" for an unnecessary surgery - and that they are optimistic about the possibility of their recovery. Susan, Jen, Renee and I had a list of questions that he answered, so our meeting was very informational. I'll spare you the details, but we are hoping that they recover on their own so he can come home soon.

1 week after surgery

Today I am feeling much better than I've felt. Given the news we had 2 nights ago and the inability to move freely, I wasn't able to sleep more than an hour and a half or so. Last night I got good sleep and was even able to sleep on my left side in a comfortable position. I woke up a lot, but was able to go back to sleep.
I took my first staircase yesterday and went up and down. Seemed to work pretty well. I also went down to the cafe and had a strawberry milkshake with Neysa and some friends we met in Jaipur. It was great to get out of the room and talk to someone who knew a lot about the culture here in India. We picked his brain with questions.
I'm getting my appetite back and am eating small portions through the day. Pain isn't much -I'm really trying not to take too much pain killer because I think sometimes you can really injure yourself more if you don't feel your body telling you "no". I am slow doing normal tasks but I'm up for the challenge. I have to get back into the habits sooner or later.
Doctor's say they are looking at my discharge for Thursday or Friday this week. At that point Neysa and I will find a hotel close by. As soon as dad gets out of ICU she will come back to the hospital and stay with him.
As far as my dad goes, Dr's say his blood pressure has stabilized and today for the first time there is a little output from the kidneys (100ml).

Dad

Hi Everyone,

Thank-you for all of your Easter messages! We thoroughly enjoyed everyone of them. It's strange to be so far away from everyone but still feel closer than we've ever felt to our entire family and friends. This blog has truly been a God-sent.

Although everything is back to normal now, we received news at 1 a.m. from the doctors that my dad had a severe hypertension episode. Our understanding is that it means a "a sudden spike in blood pressure". Luckily he is still in ICU so they are monitoring his every move and we feel confident that they are taking good care of him. Renee and I have been online researching to find out more about hypertension, and waiting to see the doctors so they can answer our list of questions. We will keep you posted as we get more information.

As far as his kidneys go it has been a bit of a roller-coaster ride this week. We've been waiting to post a blog until we have more sound information on the direction of his kidneys. We are still waiting for them to bounce back on their own, but the more time goes on the more we need to start preparing for other options and asking more questions. The doctors said that they can keep him on dialysis for as long as needed and that if they don't recover on their own within 6 months then he would be a candidate for a kidney transplant. Which, of course, would be much more affordable here. We are keeping our fingers crossed that with the new liver functioning properly that the kidneys will follow. If you would like to read more about this you can refer to this article; http://www.medicinenet.com/script/main/art.asp?articlekey=89292 .

-Neysa

Easter Sunday

I'm probably not going to be typing the best right now. I'm seeing a little bit of fuzziness in the words I type, but I read the blog earlier today and just had to comment on how much everything everyone said touched me! My mom said it perfectly a few days ago, maybe perhaps even at the same time I was lying in bed thinking about the cross I was carrying. The pain was a little more than I expected those first couple of days and I just had to think about how Jesus carried the cross and how it's Holy Week. My thoughts seemed to ease my pain completely.

I'm feeling pretty good most of the time and haven't needed too much pain medication. Neysa is napping and I couldn't close my eyes so I decided to type. I'm missing everyone back home. I hope everyone is spending time with their families and having a good time on this Easter Sunday. It's been really great having this time with my sister. She has taken care of every need and beyond. My back has been sore because of lying in bed and when I walk I can't really stand up straight. So there's a lot of soreness in my lower back. Her massages and constant care has really helped me improve and feel better. It's amazing how much your abs structure your body and your movements.

Dad continues to be in the ICU and they told Neysa and I today he is very susceptible for infection because of the dialysis machine and that we can't see him for a few days. We will arrange some times to talk by phone to let him know we are thinking of him. He is eating food now and they want to get him up and moving tomorrow. The doctors just came into my room and told me he is talking in sentences and he's still on dialysis. Dad was asking about his liver function and they told him it is working great. I know once they get him up and moving things will improve quickly for him.

I'm Improving Daily

I really haven't had any interest in looking at my computer-nor could I sit up in bed. I'm so happy to hear from all of you through Neysa in the last few days of my recovery. I feel like every few hours I'm making progress. I have a exercises machine for my lungs called a "respiromoter". It has been improving with time. Today I went to see dad. They wheeled me across the hospital and I sat a chair in the room with him. He continues to be pretty tired but was answering my questions for the most part. I assured him he was getting better and that every day after the operation it gets a little easier. It's kind of crazy how I can almost completely understand what he's feeling. Keep him in your prayers so that his kidneys will turn around completely.

Victory Lap

Renee took a victory lap around her room today while they changed her sheets. She is able to sit up almost all by herself and is getting her appetite back. Before long she will be doing cart wheels in the hallways.

They say my dad is doing a little better today after the kidney dialysis. He may need to do it 1-2x a week until they start functioning properly. So it is to be expected that there will be good days and bad days, but hopefully more good than bad for a while - then just all good. The dialysis machine is so crazy looking. It reminds me of a pin ball machine or something. It's kind of bizarre to see the blood going thru tubes in this machine and pumping at the same rate as his heart. He said he's feeling better today but still had a hard time keeping his eyes open while I was there. The room they have been keeping him in has been a temporary ICU while they disinfect, steralize and fumigate the real ICU on the 4th floor. I guess that would explain the disarray I found the first time visiting. I wish they would have explained that a little better. Anyhow, I told them that I will be there to help him move, so I am expecting a call around 10-11. It's a good excuse to see him again and to make sure the new ICU is up to my standards.

Not out of the woods yet

The doctors have said that my dad's liver is doing well but the kidneys are struggling a bit. When I visited him today he was on the dialysis machine and he said it hurt to talk. So I rubbed his feet and told him to concentrate on his breathing. I told him about everyone who has written on the blog and that it's already Friday. He smiled, I'm sure the last few days have been a bit of a blur. It's hard seeing him like that but at least I know he's not in too much pain. Every night before I go to bed, I imagine that I can heal his kidneys and focus all of my energy on making them better, so hopefully it works - I think it will.

Renee is finally off the IV and has only one drainage tube coming out of the incision site. She said the wound doesn't look bad. She hasn't walked yet today, but the night is still young, and i think we'll try within the next few hours. She started eating soft foods today. So she's recovering well.

Me, on the other hand, felt like a bit of a mess today. I had plans with Titi and Cedric (Esther's friends) for lunch but canceled because I didn't want to be away too long. I was a little emotional when I saw my dad today, but somehow managed to keep it together until I left. It's hard not really knowing how serious this thing is with his kidneys, I just want him to get better. I know that this next week is an important time to pay attention to every detail and ask lots of questions. I think the nurses in my dads ICU must think I'm crazy because I brought my own clorox wipes and insisted that they let me sanitize the room. When one of the nurses dropped her glove on the floor and tried to go into the room I asked her to change both of her gloves before touching him. Maybe that's why they have started to enforce the "visiting times" . Anyhow, it looks like they are keeping his room clean now that they know what is expected.

Kidneys

Hello,

Sorry it's taken a while to post. The internet here wasn't working yesterday. Renee and I moved into a nice QUIET room on the NE wing of the hospital. She is doing really well and the doctors are wanting her to try to walk today. We have started her on a liquid diet and I think maybe some real food today too. She is practicing her breathing exercises and is coughing a little, which is good but hurts. No problems with the asthma.

I just visited my dad. Now they are being a bit more strict with the visiting hours 7-8am and 4-5 pm. I was sneaking in in between just to check on him, but now I guess I need to follow the rules. This morning the duty nurse told me that they may need to do dialysis on his kidneys. They are saying that my Dad's kidneys aren't responding very well and that they are retaining water so they may need to be drained. Last night he was talking a responsive- this morning he was really sleepy and it not very talkative. I told them to call me as soon as the doctors come and let me know what they decide and give me an update. He doesn't seem to be in any pain.

That's all I know for now. I'll write more once I know more.

Love,
Neysa

Update

It is Wednesday evening here and the nurses have told me that i am not allowed to visit until tomorrow morning, so I will post this blog and go get some sleep. They said they are probably going to move Renee to her own room tomorrow so I can come stay with her at the hospital. I just spent an hour with her, and she is totally coherent and not in any pain. She was pretty talkative and wanted to know what all of you had to say on the blog, so I tried to remember the best I could. The only complaint she had was that she was a little itchy from the morphine and had a fat lip. Oh yeah, she had a fat lip and we couldn't figure out how she got it. Her nurse doesn't speak any English so she was of no help. She asked the doctor if someone punched her to knock her out and he said that she hit him first. We had a good laugh and then he said that it was probably from the thing that they put in your mouth to insert the tube into her stomach.

My dad is doing pretty well. It's hard to tell because he is so groggy. When I visited him around 2 in the afternoon he was the best. He was answering my questions and smiling and joking a bit. I took a look at what I could see of his body and couldn't believe that he had no belly! "Where did it go?" I said. He laughed a bit. I don't think either of us expected it to be so flat. He looks like a new man. AMAZING!! His eyes lookeda little yellow, but overall he looked really good. I went back again around 6 and he was kind of out of it. I was rubbing his feet and he told me to "put the other tape in" he said "it feels good when you play the other tape". I couldn't tell what the heck he meant. But then when I asked him if he knew where he was from and he said "La-La land" I knew then that the "tape" he was wanting me to change was probably the music in his head. So tonight I'm making him a playlist with some of his favorite music so he can listen to something other than the heart rate monitor in his room tomorrow. Hopefully the nurses will be okay with that.

Just talked to the doctor

I just spoke with Dr. Gupta and he said that the surgery went well. My dad was starting to respond and winked at me when I saw him. He was still pretty shakey like this morning. The nurses said they should be able to take the tube out of his mouth in a few hours. Dr. Gupta voiced his concern about his kidneys again. He has been concerned with his kidneys since before we started, but we will just have to see how it goes. I personally think that with a new liver it should take some of the strain off the kidneys but I'm not a professional.

I saw Renee this morning again and she said it felt like an elephant was standing on her chest. She said she wasn's in pain like last night but that it was hard to breathe and she was uncomfortable. She was pretty emotional and I could tell she had been crying. I'm sure today will be one of the worst days. I think the morphine makes her emotional too. But she too is doing well.

So keep up the prayers. I am staying here in case I can see one of them again before "visiting hours". I'll be online if anyone has Skype.

love,
Neysa

Doctors just called me and Renee is doing well!

I watched the sunrise over New Delhi this morning knowing that it was the to be the first day of my dad's new life. I stayed at the hospital last night so I could be with my Dad and Renee before surgery. The nurses never let them sleep, they were in his room all night poking him with IV's and who knows what else. Renee had a new room on the 4th floor so I was running up and down to be with both of them. We started to prep around 4:30 am, Renee was cool and collected reading the last chapters of her book. She didn't even cry until I gave her a big hug and told her how proud I am of her and that dad is so thankful for her. Dad was joking around a bit, but I could tell he was still nervous. I walked each of them down individually gave them a big kiss and squeeze and watched them get wheeled away. Then I waited...

It's now 6:30 and I just received a phone call from the Doctor saying that Renee's surgery went really well and that I will be able to come see her within a half an hour!! Dad will be in surgery until around 1 am. I probably won't be able to see him until tomorrow morning.

So that's all the news I have for now. I will keep you posted as the night goes on.


Neysa

Less than 24 hours

Hi Everyone,

Well the countdown is on and we have been busy with last minute preparations. I will update the blog on your Tuesday morning (My Tues night) giving an update on the progress of their surgery. I should be able to talk to Renee by tomorrow evening. We just recorded a video that I think you will enjoy! We love you all and thanks again for you support!

Love,

Neysa, Renee and Dad

2 Days Before Surgery

Friday night I was able to get a good nights rest because I stayed in the hotel with Neysa. She found a really cute hotel called the "Swiss Palms". It's pretty clean, spacious, cable TV, DVD player, and Internet. It's also in a gated community so there's not a lot of noise and traffic back there. Dad and I plan to stay there after we are released from the hospital.

 Neysa and I went to dinner at the Thai place called Ego Thai. They have an Ego Italian and Ego Indian place as well. I also bought dad some coconut macaroons at a bakery that night because I know he loves them. The following day we went to the Lotus Temple. We had to take off our shoes before entering and then went single file into the temple. It was really amazing. I liked how the birds flew in there and their chirps would echo through the place. The temple is surrounded by water pools that make it look like it's floating.

As far as we know we are still on schedule for Tuesday. Dad is getting better and he is stable. I know everything happens for a reason and this was a blessing in disguise. He's been sleeping at night because the nurses don't have to come in every few hours. He has meds 2x per day after dinner and breakfast and that's it. Dad says he just wants to get the surgery over with.

Dr. Gupta gave us a book by Dr. Fredric D Gordon MD I wished I had a long time ago called "100 Questions & Answers About Liver Transplantation". I wished I would have had this book a long time ago, but didn't really think of looking for something like it. I breezed through it pretty quickly amazed at how much we already knew about the process. I read some parts to dad so he knows what to expect during and right after the surgery. His surgery is far more complex than mine.

My spirits are pretty good because I'm confident the procedures will go well. I just get a little saddened knowing that Miguel, mom and all my family are so far away and they are probably worried sick. So, don't worry because everything will be fine here. We have one of the best liver transplant teams working on us here. Just think-next week, this time we will be recovering quickly getting ready to come home. We are missing everyone at home and want to be back there as soon as we can.
XOXOXO to all!

Transplant Cafe

Now that we have some down time and my Internet is working well, I've been doing some research and wanted to share a site I found called Transplant Cafe. You can check it out here: http://transplantcafe.com/forum/topics/we-are-in-india-for-the

I really hope Liver Let Live will help uninsured people in the United States who feel their options have been exhausted. Please share Liver Let Live with as many people you know who are affected by family members needing transplants. Perhaps we can save more lives this way!

We're Going to be Indian Movie Stars!

Firs of all surgery has been postponed until next Tuesday but as we have learned, nothing is set in stone. So we are just patiently waiting.
For some reason my internet connection and connection with SKYPE has been impossible. I hope that will change. I'll ask today what the problem is. I'm borrowing a computer in the e-library today. There are Doctors waiting in line for everyone to finish here. So, I'll make this brief...
Yesterday a few reporters from an Indian tv station came in and interviewed us for a documentary they are doing on Medical Tourism. They asked dad a few questions and followed us down the hall for some "action" shots. Dad was hoping he wouldn't lose his pants (as he often does) while we were walking. He's gotten so skinny that there's nothing left to hold the pants up. I'm telling you, they need to make "maternity" pants for men. It might be helpful!
Anyways, after answering questions and walking down the hall for action shots dad took a nice nap. He says "it's hard being a movie star"! I gave the two reporter women my business cards and asked them to email me when the documentary becomes available. (I was hoping they would check out my Slumber Parties website too-I'll get some hits from India Kelly;)
We are reading your updates daily. Even though we can't log into the website to narrate we can still read it and make comments. Dad looks forward to hearing from everyone daily.

Possibility of Postponement

Renee is having trouble getting online at the hospital. We changed rooms yesterday because it was impossible to sleep with all the honking and traffic. The new room is a little better but unfortunately has a very poor internet connection. I heard that there was a library or something on the 6th floor that may have a better connection, so I will check that out today. I know a lot of you will be waiting for updates as the surgery goes underway.... Which  brings me to the topic of today's discussion. The doctor said that they may have to postpone the surgery AGAIN until next Tues. I guess he is having some issues with another patient and if he is able to resolve them today we will proceed as planned. If not, then we will have to wait until next Tues. Frustrating to say the least. But there are some things we have control of and others we don't. 

I'm sure a lot of you are wondering how Renee and my Father are really doing. Renee somehow is doing just fine. I always knew she was a strong person, but this whole undertaking has given a completely new respect and love for her devotion and unwaivering commitment to the people she loves. She never once hesitated and has gone forward with all of this with leadership, strength and courage. Every time I look at her I am proud to be her sister. What an amazing woman and anyone who has her in their life should consider themselves blessed. My dad is in good spirits, but is definately nervous. He misses Susan and Matt a lot and gets a little emotional every time we talk about him. Nonetheless, we are all enjoying each other's company and this time together has been a blessing for all of us. 

Once Renee goes in for surgery. You all can count on me for updates to the blog. We really look forward to all of your comments and it is good to know we have so much support. I love you guys! Keep sending positive light our way. We will be needing it most in the next week.

xoxo,

Neysa

Jaipur, Rajasthan weekend

Neysa and I took a short weekend trip with a girl we met through Kelly and Amy. She works at UOP and was in town from Chicago. She invited us to go to Jaipur with her for the weekend. The three of us went with a driver from UOP so we didn't have to pay for the ride. We stayed at Chokhi dhani which is an "ethnic 5 star resort" that was much needed on my part. It was about a 5 hour ride from Apollo to the city of Jaipur. The resort reminded us of Disney Land- an India part of Disney Land. It was very clean, the air was fresh (more so than Dehli for sure) and instead of traffic waking us up we woke to the sound of birds chirping a great breakfast buffet and a massage at the spa. It was wonderful to have a comfy bed and fluffy pillow. For those of you who want to "google earth" it- it's 12 miles Tonk Road, Via Vatika.
The 5 hour ride was probably the most interesting part. Let me just quickly summarize what we saw... a dead cow on the highway, camels pulling carts, men flocking their sheep/goats, people showering roadside, open sewer drains, people riding elephants, cars/trucks/tractors/bicycles driving towards us on the highway. Our driver told us the men who were sheep herding walk from Jaipur to Dehli and it takes them 8-10 days to arrive. Upon entry to the city we saw the Amber Fort and the We took some pictures and will try and upload if I can do that. Needless to say it was an interesting venture.
Dad did well while we were gone. He said he chased the sisters around and rode camels in the morning. He actually went for a walk by and treated himself to tea at the coffee shop downstairs. He has finished one book already. We're contemplating switching rooms again because he hasn't been able to sleep at night. It might be the traffic. It really is loud here. We know on Thursday we will be moved rooms for the surgery and recovery. I really hate switching rooms after we get to know the sisters and get settled and then we have to move again. Perhaps we could stay on this floor and just request the other side of the hall. We'll see. The day nurse (sister) we have reminds us of an India Lexi. There's something about her features and her kindness. I think it's her smile and her eyes.
They just came in and told dad they are going to do an ultra sound on his kidneys to "predict" how they will act post surgery. I guess they can put dye through him and see how the blood flows to figure this out. I think everything will be fine with them. His kidneys just seem to have really taken a toll through all this.

Review board yesterday

We've had a busy couple of days now and yesterday Neysa and I went to the market to do some shopping. It was very interesting because they had everything from sandals to a butcher shop. We chose not to go too far into the butcher shop because neither of us really wanted to see it. (Not to mention the smell was awful!) We got as far as the chickens and the rooster all caged up waiting for their day to come. We were surrounded by fresh vegetables, fruits, nuts and spices. We met Amy and two of her kids at the market. She explained that she loves coming to this market because they can find things they can't normally get in the grocery store. Something like Diet Dr. Pepper and soft toilet paper is a novelty around here. The walls were stocked with boxes of dry food that we can find anywhere in the states. Neysa and I then went to another market where we bought pashmina scarves and Neysa bought me a beautiful aqua marine ring to remember her and out trip whenever I wear it.

Yesterday evening dad got drained again because they wanted to check to see if the infection was gone yet. The Doctor told him he could take just the sample, or since they're already in there they can also drain him. Dad chose to be drained. It's really amazing how big his belly gets. We give him a hard time about having quadruplets in there. We don't know the results of this test yet. We did however receive some great news about the creatinine level in that it has dropped again to 2.4. We are almost there and want to be at 1 by Monday. Neysa and I have been feeding him hepatic (like ensure) and vitamins (Dr approved) to help with this. Not to mention all your prayers are helping!

Yesterday evening we went in front of the review board where we sat at a huge table in front of 9 people who asked us questions. The event was video taped with the video pointing on us. Dad went in first and was out within 3 minutes. He says they asked "How many children do you have" and one of them is the donor? He said "Yes, Renee is the donor". Then they took him out. When I went in they asked a few more questions. They asked "How many siblings do you have?" They asked "Are you donating a part of your liver on your own free will?" "They asked if my husband gave me permission to do this and if he had any objection. They looked in the file at the letter he provided and said they needed it to be a little more detailed and they wanted it to be notarized along with a passport sized photo attached. They reassured me this would not hinder the process any longer but that I should get this paperwork in ASAP. I immediately went back to the room and called Miguel at 7am to request the information. I found it very interesting that they had one of the members on the review panel said "she has more responsibility to her husband than to her father". That's why it was so important to have this information. They then proceeded to ask if my husband was here and where my mother was. I answered that they were back at home. This morning I received the notarized letter from Miguel and forwarded it onto the department. We should be all set!

I completed my last test today- an MRI. It was interesting. I would recommend that if you have any type of claustrophobia that you keep your eyes closed the entire time. I only opened mine once when I got into the tube and I regretted it a little bit. They kept me in that tube for about 40 minutes. It wasn't horrible, I just had to concentrate on my breathing even though they told me "breave nomal". When I breathed normal I guess it wasn't good enough, so I really had to pay attention to my breating. Then they would say "stop breave" I was given head phones to protect my ears from the noises that were created by the machines. When I got out of the machine the man told me "you take short brefs" I told him that was normal breathing for me. I got up and went to the cafe for some cappuccino and a cheese danish (not what I expected but good). Then we took dad for a walk. It's been raining a bit today and the temperature was pleasant.

Not so great news

I'm waiting for dad and Neysa to come back from doing some more testing thinking about the news Dr. Gupta just gave us. He says the creatinine levels are "stuck" and was wanting to know if dad's levels were ever lower than 2 before we left CO. We didn't know because we didn't bring any of that paperwork. Apparently when the levels are up they can go back down if they were down before. In the last two days they have not moved from 2.6 and they've been steadily going down since we arrived. So Dr. Gupta says there's a possibility that dad could need a kidney transplant in a year or so if the liver transplant does not correct the problem. From what I understand the kidneys are compensated when a person has advanced liver disease. They are basically putting in overtime causing them distress. So, the liver transplant could correct the problem or we could also be in the same boat needing a kidney after all this is over. So, in our prayers we will continue to ask that dad be healed and that his body becomes healthy again especially before the surgery. Dr. Gupta says this does not change the surgery date but he will have a kidney specialist come in and meet with us soon.
I could only imagine how awful dad felt in hearing this news. Dad has been a little more emotional lately and Neysa says it's part of the disease. He didn't cry but said "shit, that's all I need right now". We gave him some encouragement but somehow I don't really feel that was enough. Dad's a fighter and I really don't ever see him giving up, but for a split second how could he not be thinking he might as well give up? I know I would.
So we continue on in our day trying not to dwell on this. We want to think positively and recognize that everything is going to turn out just fine. Dad's looking forward to going for a walk outside today. I hope we can make it happen.

Interesting Day

I began my day talking to Miguel about getting me a copy of his drivers license and a passport sized photo to go with the "letter of permission" he wrote for the board. We were finally able to get it together and off to Aarti for review. Aarti came into my room and asked me to come down to the Platinum Lounge so they can start the investigation part of the process. I had no idea what this meant. I grabbed all the paperwork we had brought, my passport and my laptop just in case I needed it. She had me meet with a man who asked me a few questions to make sure I knew what I was getting myself into. It was pretty simple. I also filled out my hospital file information and I was questioned about my family history. Yesterday Aarti gave me a "family tree" that I needed to fill out. It was a blank piece of paper with someones notes and it was a little difficult to understand. Aarti asked why I didn't put my mom's name on this and I told her there wasn't a space for it-Apparently I didn't understand the "family tree" she had requested. So I put my mom down as an emergency contact and suddenly Aarti knows I have a mother. :)STRANGE... Anyways, Aarti also told me I need to do a CT Scan and Ultrasound and I informed her that one of the doctors already asked me to do it and both of them have been done. She questioned if I paid out of pocket and then said it was included in my dad's package. So I asked her to refund the money I spent for my testing. Apparently there was a little miscommunication, or someone was jumping the gun. So, if you ever come here to do what I'm doing through WorldMed Assist then you should know this. I guess I'm ahead of the game. Tomorrow I go for blood work in the morning and a MRI on Thursday evening. I've come to realize that most of the staff (excluding doctors) speak just enough English to get by in their job. If you throw them a curve ball they don't really understand. Dad's been requesting ice water since we got here and has only gotten his point across to one housekeeping person. I'm getting a little sleepy and dad and Neysa are both passed out in the room. We were just talking today about how spoiled we are with afternoon naps, movies and vegging out. We look forward to our meals to sample the interesting things they bring.

Doctor's Update

I'm feeling better every day because we are getting a little closer to Dr. Subash Gupta. We've met with him twice in 24 hours and he actually has a great personality and good sense of humor. He is extremely personable and I think it's fair to say dad and I feel more than comfortable being in his care. Last night (Sunday) he stopped by at 9:30pm. I'm sure he never sleeps! When he came in last night he says that dad's creatinine levels are going down. He started here at 3+ and now is at 2.4. Ideally he should be in the 1's for Dr. Gupta to be comfortable with operating. He said he can operate now that it has gone down, but he would feel better if it was in the 1 range. It looks like the infection is gone or almost gone. Dr. Gupta also told us today that my CT Scan looks good and I will make a good donor. He told us he's looking at doing the surgery on April 2nd. I will go in first to make sure my liver looks good and then dad will start surgery a few hours later. If there is any question about my liver they will do a biopsy and get results from the lab within 10 minutes. The surgery will start early around 7am. Dr. Gupta also invited us to go visit the ICU to see how patients are recovering after the same surgery and to get comfortable with his team. We will probably go there tomorrow.
Lastly, we will have to meet with the review committee this Thursday evening to make sure everything is in place. They want to make sure we're not trying to break any laws or make any money with what I'm doing. We have collected an array of paperwork before our trip to prove we are our mission is sincere. As long as dad is feeling well he will get to go to the board meeting as well as me and Neysa.

Neysa's take on India

I think one of the things I find most fascinating about India is that it has such a strange dichotomy about it. It’s like going back in time one hundred years. With the emergence of a strong middle/upper class, and more focus being directed at their educational system, technology and modern necessities are becoming quite readily available. From what I've seen, there really aren’t “good” or “bad” parts of town. You will see a huge gated mansion with security, guards and barbed wire around the walls- then the next block will be people living in shacks and washing in the river.

I have visited a lot of places and I must say that the driving experience here is one of the most bizarre. First off there are only three lane highways that seem to fit 5 rows of cars, rickshaws, huge busses full of people and livestock, motorbikes, bicycles, tractors, oxen-pulled carts and yesterday I even saw two camels... all on the highway together. It’s quite dangerous because everyone is going different speeds and swerving in and out. I just close my eyes and pray that we don’t hit anything or anyone. None of the roads are straight so I never know where we are going. But I do love watching out the window and watching as the world goes by.

The poverty here seems to be worst than anywhere else I have ever been. Of course I say that every time I visit a place where there is a lot of poverty. But there are shanty towns everywhere, even in the middle of the highway. While stopped at a light yesterday I noticed a man with leprosy on the side of the road begging for money. A lot of the people who beg here are handicapped in some way and leave their severed appendages out so they are visible. It’s really sad and disturbing and they are forced to be so vulnerable in order to be efficient in begging for money. They will come right up to the car and stare at you until you give them something. But the worst is all of the children running in and out thru traffic begging for money and food. I don’t know if giving them money helps them or hinders them by encouraging them to continue putting them selves in such danger. Nonetheless, it is a good lesson in humility and definitely puts life into perspective.

Well I have to go. I think my dad is waking up and we want to go for a little walk today to stretch his legs. I love you guys and will write more later.

Watch what you eat!

I'm starting off today letting you know that the food here in the hospital is already getting old. Don't get me wrong, the food is good, it's just that you really never know what you're going to get! I just had fried chicken for lunch and it came with french fries and a "green salad". The green salad consists of slices of cucumber, tomatoes and onion. I wonder if anyone ever eats all the onion... The fried chicken was good, but I'm not sure how my stomach will like it later.
Dad didn't sleep well last night because of something he ate. They've been limiting his diet and he has always ordered from the "continental" side of the menu. I'm not sure what made his stomach so upset. Poor thing, he was grumbling in pain all night so I called the doctor and he came in to give him an antacid and a pain reliever. The doctor took a blood sample just to make sure there was nothing else infected (he told us this morning the blood test was normal so it was something he ate). He finally fell asleep and was sleeping good until about 7:30am. He's been sleepy all day.
Yesterday dad was determined to go to the park outside to check it out. We got to the gate in the wheel chair and the guard told us "no". So we continued to walk around the hospital to figure it out. If he was feeling better he said he would have scaled the wall anyway. Today we found out we need a "permission slip" to get to the park. The doctor warned us not to go outside at night because of the mosquitoes.

Helpful tips for visiting Apollo Hospital

Where do I start? Neysa and I went out shopping yesterday and we had a driver who's car kept dying. He would just laugh as Neysa gave him a hard time about his car working. We asked to go to the market but then we realized we didn't have much time to make it there and back. So we got dropped of at some "Americanized" stores like ESPRIT and LEVIS and a ton of shoe stores. We didn't find much because we were expecting prices to be a little less, but our mission was to find dad some slippers. We went to a shoe store and found the perfect ones and they guy charged my credit card and THEN put the shoes in my bag. I pulled them out and looked at the size and it said "10". We asked for 8.5. He said "oh that's the right size, it's only size of bottom". Neysa put them on and they looked big, but we proceeded out of the store. The man said we could bring them back if they don't fit. So, they didn't fit. Neysa is bringing them back this morning. On the way back traffic was stuck and so our driver got out and cussed the person out who was stopping traffic and then got back in the car. These people drive 6 wide on a 3 lane highway! It's insane how they zig zag through traffic. They also use their horns to talk to each other. Which reminds me...
We got moved to a nicer room and I will say after taking a shower this morning I am convinced that it is nicer. The old shower used to pierce my skin. However, we got moved from the side where there's a beautiful park to the side of a busy street. Now we don't hear beeping in the hallway, we hear horns and exhaust pipes and teeter teeter's through horns.

So, if anyone plans on visiting Apollo Hospital in New Dehli then we should probably give you some tips. 1. When you order food they always bring what you ordered and another tray with stuff you didn't order. They say it's "complimentary". So I finally figured it out and I'm not wasting as much food. I ordered fruit and coffee today and they brought this and another tray which they always bring in the morning with 2 boiled eggs, 3 pieces of white toast jam, butter and tea. My belly is full. They do the same thing to dad sometimes. I haven't quite figured that out yet. 2. If you are a donor and you have to go get testing done you will need to get the order from the doctors and then go downstairs to gate 4 (outside of the main entrance of the hospital, near the coffee shop) and pay for your test. Then you go and get the test done. You are also responsible for picking up your own test results. 3. If it doesn't change you will know which people do what by what they wear. Housekeeping wears (men) orange and (ladies) purple, Maintenance wears grey or dark brown, Nurses wear pink, Cafeteria workers wear white with a green hair cap, doctors wear slacks and shirts and sometimes scrubs. There's a lady who does guest relations and her office is in the presidential suite on the ground floor next to the hospital entrance. Her name is Aarti. She is the one with Wouter in the WorldMed Assist (http://www.worldmedassist.com/) video on Youtube. She has helped Neysa get anything she needs from a place to stay to a driver. Rides back and forth from her hotel to the hospital are complimentary when Aarti calls a driver for her. She is staying at a place called "Swiss Palm". 4. Don't assume your driver knows where he is going- you need an address to give him (and sometimes that's not even good enough). 5. Always wear mosquito repellant. 6. Lastly, get a Skype account to communicate with people back home. It's very inexpensive to call from computer to LAN line and free to video call. We've enjoyed being able to have conversations with family at home.

Hit the Ground Running!

Dad and I woke up and he looked the best he has this whole time. I was able to sleep for at least 5-6 hours last night and dad slept pretty well too. Today dad did Xrays and an ultrasound and I did a pregnancy test, pelvic exam and blood work. I also scheduled a CT Scan for myself tomorrow. It's so crazy, I went to the pharmacy to get the test and it cost $43 Rupies which is less than $1.00. My blood work was $610 Rupies which is about $12.20. I can't wait to see how cheap the CT Scan is.

Anyways, yesterday the doctor drained dad and found an infection in the fluid. So they've had him on antibiotics for at least 24 hours now. He is complaining about a pain in his stomach but one of the doctors said it was because of the infection. Dad is on limited fluids <1.5l>

We really feel the staff here is taking care of us well. With every nurse or doctor that comes in a few others follow. Dr. Gupta has a team of 10 doctors and I think we've met them all. Dr. Gupta stopped in today for a minute while dad was on the way to the Xray.

Well, we have to go, Neysa and I were invited by Kelly and his wife to come for dinner tonight. (Thanks Terry for hooking us up with them!) The driver just called and said he was here. Because I had so much testing today, this will be the first time out of the hospital. Neysa and I anticipated going to the market today, but that didn't work out. Bye for now...

We've arrived!

It's 7:45 here in New Dehli, we arrived at the hospital late last night and Neysa left to her hotel and we went to bed around 1am. Dad slept really well until staff came in to take his vitals around 6am. We have a view out of our room of a beautiful park. Some men were out there running around before 6am.

Can I say, THANK YOU SO MUCH TO EVERYONE WHO DONATED MILES! You paid for both my dad and my trip with donated miles. We flew with Continental in a 777 through "Careforce" and it was amazing. The plane was huge and very accommodating. We had personal TV's with games, music, sitcoms, and movies. Our chairs were comfy and the meal made me want a bigger stomach. Dad did okay. I could tell he was uncomfortable at times, and he was headed to the bathroom about every 2-3 hours.

Upon arrival we were met with a wheelchair. They wheeled us through baggage and customs within minutes and right to an ambulance. Neysa went with the luggage in a separate car. They hooked dad up to monitor his heart and oxygen intake and everything was normal. Then we went to the emergency room and were flooded with questions about his past history and medications. They will continue what the doctor gave him on Sunday because they want to make sure he's moving fluids through his body and make sure he doesn't start having the ammonia affect his brain again. The doctor in the emergency room last night is on Dr.Gupta's team. He said they will probably drain dad today and then Dr. Gupta will come in to see him. Dr. Gupta has another liver transplant today. I asked if there was a possibility that we get in earlier than April 1st and they said it will take about a week to do all the testing, have him see a dentist (?) and have him stable. They want to start the testing after the jet lag is over with.

I don't feel much jet lag but I did feel like I was floating last night before I got some sleep. I'm wide awake this morning and only slept about 2 solid hours. I'm sure it will hit me later.

Oh yeh, did I mention there was a TON of traffic last night at 10pm? People were honking at the ambulance. We had no right of way. The pollution is overwhelming and there's a constant stink in the air. Dad and I were trying to come up with a good way to describe it, but I'll just say, a small mix of sulfur or some type of chemical and a small part sewer. We can smell it everywhere, even in our hospital room. I wish I brought a few bottles of Between the Sheets but I only brought one. I'm sure we'll get used to it. Upon entering the hospital I remembered JoAnn from World Med Assist telling me that India seems to be time warped about 30 years. That's right. There appeared to be a shortage of stethoscopes and blood pressure machines in the ER. The lady brought a scale to weigh dad when we got to our room and (mom) it looks like the scale we had in the bathroom when I was little! Remember the green one?

Anyways, I'm going to venture out into the hospital today and look around. I would like to find the "nice" part of the hospital that was in the youtube video. Don't get me wrong, it's not horrible, just really not what I expected.

On Our Way! Thank GOD!

We are in the "Presidents club" or "elite lounge" or whatever you want to call it. We made it through security and had a wheel chair for my dad. Then we had an electric cart bring us here. Dad is doing okay today. He's a little short of breath even when he talks, but has made an enormous improvement since Sunday. He is pretty much back to normal. He is very weak a little yellow and can't even button his jeans because his belly is too big. What a way to fly! I told him to get maternity pants, but I guess he didn't go for that. We have a change of clothes in the bag so he can change into sweats if he wants to.
The medicine the doctor gave us worked well enough to bring him around in 24 hours. It's amazing. He will continue to take that medication through the day and when we arrive in Dehli we will have an option to have him go to the hospital in an ambulance. We'll see if he needs it.
Anyways, signing off for now- We love you all and your prayers will continue to keep us successful on our journey.

Dad took a turn for the worse today. We were over at his house around 2pm and Susan called this morning telling me he is delusional and not talking much. She put him on the phone and I had to talk first. He said "hi". I asked how he is and he said "I'm fine". Susan was able to get him some medication and the gastroenterologist said to take the meds for 24 hours and if he doesn't turn around then to come in tomorrow. The doctor says this is "typical" behavior for terminal liver disease. Susan fed him breakfast and by the time we were there this afternoon I was feeding him fruit. He would put some of the pieces on a toothpick into his mouth, but was unable to actually stick the fruit with the toothpick. He was able to lift a spoon into his mouth after I loaded it with chicken soup- very slowly. He was walking around but not able to hold very much in his hands. I have to admit this adds a little more stress to an already stressful time for us. We should know better- this has been a bumpy ride and we aren't even in India yet! I'm staying optimistic, but REALLY...
Susan called Wouter and told him dad's condition. He said he would call Dr. Gupta and let him know what's going on. We pray the medication will take full effect and have dad feeling better tomorrow. It would be a huge challenge to get him on the plane and have him like this for 19 hours. Neysa thankfully changed her flight so she can meet us in New York. She will then fly the long flight with us.
The whole family was able to stop by this afternoon. We had dinner together and we missed aunt Rosie who is on her way to Denver within the next few hours. Rita and Drina stopped by after all of us left tonight.
I really wish our trip wasn't delayed so he would get this sick, but maybe on the other end we will have our surgery a little faster. Perhaps we will become an emergency surgery since dad's not doing too well.
Keep dad in your prayers so he will come around by the morning. We asked him if it would be okay for him to get blessed before we leave and he said "yes". Sarah's dad, who is a minister is willing to come over tomorrow and give us a blessing before we leave. We called a catholic church to see if he could get anointed and had to leave a message.

Getting Relief

I went by to see dad yesterday briefly and on Sunday. He looked a little better since he got drained that morning. They drained about 6 L as usual. He went to the emergency room and they always tell him they can't take any more than that. Dad says he doesn't know if they are just pulling his leg, but he wishes they would drain more so he could feel that much better. The doctors say they have to keep a certain amount in the abdomen in order to keep the "electrolytes" on balance. Or something like that. I did some research and usually a certain amount of liquid has to stay in the abdomen for proper kidney function.
During our visit dad was laughing and cracking jokes as usual. He continues to lose energy but appears to be in fairly good spirits. He goes to his favorite place to hang out -Alameda (the apartments) and then went to the other apartments on Asbury to "fix some things". Even though he doesn't have much energy he really does use the amount he has wisely! Susan got him a computer with a built in webcam and internet to take on the trip. I'm really excited to help him learn how to get on the internet and start surfing! He will have his own computer while we are in India so he can learn at his own pace. He has no idea how many hours he will be spending on the computer! Ok, I can't really compare him to me, but there really is a lot of interesting stuff out there.

Insurance is on the way!

We're hoping to have my dad's insurance in place by April 1st. I called the University of Colorado hospital the other day and talked to a social worker there named Fabi Imo. She works in the transplant department and has been very helpful in answering my questions. This time I called to ask if they would consider a live donor once the insurance kicked in. She said Kaiser has a program to cover live donors, but she had to go to an appointment. I'm still wondering how long the process would take if we had to start all over here in the US.
As of today we are leaving to India on the 17th so as long as that goes as planned, we will continue in that path. If we are delayed any more I think our first step will be to make an appointment on April 1st with Kaiser. Then Kaiser has to make a referral to a gastroenterologist and then to the transplant center at the University of Colorado Hospital. Who knows how long that will take and whether or not we would have to start all of our testing over again or if they would accept the tests we have already completed.

I saw my dad today and he is very bloated again from the ascites. He plans on going in to the emergency room again this Sunday to get drained. He has been going in to get drained about every 7-10 days because he gets very uncomfortable. He goes to the emergency room because he doesn't have insurance that will cover the draining. The emergency room doesn't expect payment upfront and I don't think they can turn him away. The procedure is costly and every time he goes in to get drained the bill is about $3,000. In the past they have been draining about 6 L of fluid out of his abdomen. Today he was very tired and said he woke up this morning and had breakfast and then went back to sleep. Then he went out for about 2 hours and was exhausted by the time he got home. We read an article about medical tourism today and I left so he could rest.

Today was the day

Our journey started a few months ago when we found out my father needed a liver transplant ASAP. We looked for medical insurance here in the United States and were unable to find anything that would cover him quickly. My father is self-employed and has been for a long time so he doesn't have health care in place. He also has Cirrhosis of the liver which is considered a pre-existing condition.
Finally we looked into "medical tourism" and found www.worldmedassist.com which is a program based in CA that connects people like us with doctors overseas. We have gone through the process and approved for the program and I have been chosen to be the donor for my father. WorldMed Assist allows us to do a liver transplant if we have a blood related, living donor to provide half of their liver. Luckily the liver regenerates itself quickly in both myself and my father.
So today was the day we were scheduled to leave to New Dehli, India and we received a phone call from Wouter at WorldMed Assist on Saturday telling us that the doctor can't do surgery on us until the beginning of April. Although it was a big surprise, it's great we knew before we made the trip and had to hang out at the hospital for another 2 weeks. We already have to be there 2 weeks early to do testing for surgery.