Sunday, August 28, 2016

Happy Birthday, Mom!

Today, August 28, marks an extremely important day for my Mom and our family: Mom's 51st birthday! If I remember correctly, last year she was either in the hospital or recently had been for her 50th birthday. Last year could have been Mom's last birthday here with us, but here we are again--better than ever. ----------------------------------------------------------------------------------------------------------------------------------------------------- I learned yesterday that Mom was much closer to losing her battle pre-op than I had known. She was considered too sick to have the surgery, but doctors took a leap of faith which paid off by sparing my wonderful mother's life. I am away at school until Christmas and would love to be celebrating this extra-incredible birthday--one she was so close to not having--with her, but I surely will next year (and all those following)! --------------------------------------------------------------------------------------------------------------------------------------------------- Today I was blessed to FaceTime my Mom from halfway across the country. For the first time since leaving for school I actually got to see her face--and boy is she looking good! As much as we would have loved for her to be able to celebrate at home, that will have to wait until next year. In the meantime, she has participated in intensive physical and occupational therapies which have paid off tremendously. For the past year she has had a printout hanging above her hospital room door featuring a pair of red high heels and the words "fall risk." Her hospital beds have been alarmed should she be stubborn enough to try and move about the room independently (she never did!). She has not even been able to use a toilet. But now, she has been cleared for independence! She is walking without assistance, no bed alarm, is able to roll herself over in bed, and with this re-found independence is able to get herself to and from the restroom. The progress is exhausting, but it is monumental! I'd say being so independent by now is a birthday gift second only to being home--one she accepts gladly. --------------------------------------------------------------------------------------------------------------------------------------------------- I got to talk face-to-face(ish) with Mom and hear all about her day. The family got together and threw her a "party" in the nursing home's conference room. They played penny poker and my grandmother made a cake. Mom ate a steak dinner reminiscent of a hockey puck (but she knows eating is important to her recovery SO...) as her birthday dinner. My stepfather delivered the card I had left on the kitchen table before leaving for school (It was a cute Mother's Day card she was not quite "with it" enough to process on Mother's Day. I told her that it should work because she is my mother and today is her day). --------------------------------------------------------------------------------------------------------------------------------------------------- Mom has been more active on Facebook these last few days than she has been in awhile. For having missed out on her day in person, I loved seeing the pictures she posted. I know she is so grateful for all the love she has received today and along the way. Today I trust that it thrilled her to share a picture holding a number 1 birthday candle, saying that this is her first birthday. After all she has been through, it certainly feels as though this is the first and the best. --------------------------------------------------------------------------------------------------------------------------------------------------- As I look back on today and Mom's journey, I have to say once more just how thankful I am to her donor and her donor's family. Mom has been given great gifts in her 51 years--some tangible, some not--but this amazing person and her family have given my Mom and our entire family the gift that will last through all Mom's birthdays. Every birthday in this family will see thankfulness for the gift of my Mom's life. Every Christmas will be the same. --------------------------------------------------------------------------------------------------------------------------------------------------- And so, once again, I say: HAPPY BIRTHDAY MOM! I LOVE YOU, AND I CAN'T WAIT FOR ALL THOSE YET TO COME! XOXO

Monday, August 8, 2016

Still Not Easy

Exactly one month ago, I hit the "publish" button to tell you all the news that Mom got her new liver. But let me be clear: Times are still very hard.
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I have informed everybody that progress will be slow (Although her appearance has improved so much since the surgery). Mom has been in a nursing home in Westport for several weeks now; We've joked about how this is her longest stay out of the hospital. My visits have not typically coincided with her therapies, but several times I have witnessed her walking both short and long (All things considered) distances. We are thrilled with the progress she is making, as well as at her determination.
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On Saturday, though, Mom was once again transported to Yale New Haven Hospital. We were warned that short-term hospitalization is possible post-transplant if her team feels that she needs closer monitoring or that her levels may be off. Although Mom's doctors feel she is healing well, she felt as though something was wrong and tests agreed. For several days her belly had been swollen as it was before the surgery--something very uncomfortable for her. It has caused her extra pain.
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Given this information, her doctors at the nursing home first ordered an X-Ray. The X-ray appeared to show a bowel obstruction. Mom's doctors at Yale later determined that this was not the case. Mom spent 7 hours in the Yale emergency room while they ran tests and leaned toward infection as a possible explanation--A suspition again deemed untrue. Now, when Mom is taken to Yale we are accustomed to it being a "simple" immediate admittance to their liver and transplant floor. The emergency room is an *almost* unfamiliar situation these days. Now that she has been there two days, the doctors feel they know what has caused this. It appears that the donor liver may have been strained, and the body and liver are trying to play catch-up, causing this swelling and discomfort. THIS DOES NOT MEAN OR OTHERWISE INDICATE THAT MOM'S BODY IS REJECTING THE LIVER.
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If I may, I would like to speak more about how things are still not easy for my family--Not just for my Mom. The big picture tells us that Mom will heal, even if it takes awhile. But still, it is so hard even to be on my family's end of this. It is hard walking into Mom's room and watching her cry because of how much pain she is in. It is hard having no choice but to push her to eat, drink, and move no matter how unappealing or exhausting it is for her. It is hard having to wear a paper gown and gloves while visiting, knowing that at any moment we could still bring in germs that would make her and her suppressed immune system very very sick. It is hard trying to tell her a two-minute story and having her drift off to sleep for lack of energy. It is hard knowing that she has no voice and no independence, and questioning if the staff is actually taking care of her once we leave for the day (Understaffing is a serious problem, and while we are visiting it is very apparent that they are so often unable to take appropriate care of her). It is hard having to drive an hour or close to an hour for a visit every single day. It is hard, now that Mom is back at Yale, knowing that the city of New Haven charges a mint for parking simply to visit a sick loved one (When Mom was in Yale long-term before the transplant, the city's parking cost about $400/driver/month for the amount of time we spent visiting Mom. Absolutely absurd). It is hard for us now because it was hard before. It is like so much has changed and still nothing has changed. We just need to rest on the faith that it will.
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There is one more thing I feel the need to discuss: The wonderful donor who saved my Mom's life. A couple of weeks ago I was blessed to attend Mom's donor's memorial service with my family. We did not know this young woman personally, but our families knew each other. It was so hard being there, and such a privilege as well. We are sitting here watching my Mom struggle in her recovery, but at the same time we are truly grieving for the loss of this amazing young woman who saved my Mom and so many others with her gift. We are grappling with the gravity of the situation from our end and her family's--The gift and the cost. We will repeat it a million times over: We are so grateful for this family and the decision they made to help us in the midst of unspeakable grief.
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Thank you all for walking with us through this time. This may not be the last hospitalization as Mom heals (In fact, it very likely will not be), but your prayers, happy thoughts, and support have carried s through so much. We will continue to keep you posted on her road to recovery.

Monday, July 18, 2016

Progress

It's been about a week and a half since Mom received her transplant. Her coloring has improved entirely, and much of her swelling has decreased. Day by day, we are watching the amazing things a new liver has made possible. ----------------------------------------------------------------------------------------------------------------------------------------------------- In this time, Mom has been transferred from the surgical ICU back to the liver and transplant unit, where she has been met with many sentiments of congratulations. Her doctors have been monitoring her closely. They are very pleased with the progress being made. The other day, they operated again because her blood levels were not evening out quite like doctors wished. We were told the day of her transplant that this was common, and after this second operation things proceeded on track. ----------------------------------------------------------------------------------------------------------------------------------------------------- People keep asking if I feel a big weight lifted off of my shoulders. I cannot speak for my family, but (weirdly enough) I say yes and no. The biggest weight is gone; Mom WILL make a full recovery from this terrible disease. But what people may not realize is that she is still very sick. The liver is functioning fully and will help as her body heals, but her body has suffered so much damage that it will not bounce back quickly. She is still suffering great pain and discomfort. She still has only a weak voice. She is still short of breath and unfocused. She is still experiencing confusing dreams and hallucinations (something doctors say is common when the body has gone through such severe trauma). Her skin is still paper thin. She is still incontinent. It will be a long road ahead of us with a light at the end of the tunnel though; You can all be sure to see more and more positive updates coming your way. ----------------------------------------------------------------------------------------------------------------------------------------------------- For the rough things Mom is still experiencing, there are some personal victories and freedoms that she is thrilled to have back. After spending most of her disease on very strict fluid restriction, she can now consume however much fluid she desires--a freedom we all take for granted. The same goes for salt; She has been extremely restricted on this all-too-common ingredient, which has caused a great deal of frustration while her appetite has been limited throughout her disease. Yesterday, she recorded all of her calories and asked me to add them up for her. She ate OVER 2,000 calories. THIS IS A HUGE DEAL! Liver disease made her very malnourished between a low appetite and (at times) inability to hold things down. Proper nourishment is very important to her recovery, and for her to have consumed what most people do in a day is tremendous progress. ----------------------------------------------------------------------------------------------------------------------------------------------------- Doctors are now talking about releasing Mom into another short-term rehab facility in the next couple of days. We are hoping to move her into a Yale-affiliated home where staff is accustomed to working with transplant recipients. Here, she will work with physical, occupational and speech therapists to relearn everything her body has forgotten how to do. From here, she will eventually get to go back home long-term. She will have bi-weekly appointments with the transplant team. They will make her strong, they will keep her safe. She will be a "normal person" again. ----------------------------------------------------------------------------------------------------------------------------------------------------- I cannot wait for the next exciting moment in her journey--There are sure to be many.

Saturday, July 9, 2016

Susie 2.0, Day One


As a family, we are still completely astounded by yesterday's incredible turn of events. There are no words to describe the gratitude we have for our donor, her family, the doctors involved, and God. ----------------------------------------------------------------------------------------------------------------------------------------------------- We only got to see Mom for a few minutes following her surgery yesterday. There were almost two hours between her surgery ending and seeing her in the surgical ICU. We were told to expect Mom to be out of it for awhile. She would be on a respirator at least overnight (thus leaving her unable to speak), and would probably not remember what happened when she saw us--If she was conscious at all. We walked into the room and came to find out that, even though she looked like she was in pretty rough shape, she was very aware. If you are reading and personally know Mom, you know she is strong-willed and (as I like to call her) "sassy." I did not know it was possible to be sarcastic when you cannot even speak. Yesterday evening, she wanted to communicate. Because her voice has been so soft since her last intubation, it is not unusual for her to want to write to communicate. She raised her hand and "scribbled" the air. I told her, "No Mom. You just got out of major surgery. I am not giving you something to write with. You need to rest." And thus, she rolled her eyes and waved her hand in the air to say "whatever." (Way to keep that sense of humor Mom). ----------------------------------------------------------------------------------------------------------------------------------------------------- I got to see Mom again at about 10:00 this morning. The desk staff know my family well by now. They get caught in their scripts just like the rest of us do at work. The woman at the desk this morning was half way through a generic "how are you today" when she looked up and saw me. Her tone changed to a sympathetic one, and said, "Oh no, she's back huh?" I told her, "Today it's for something good. She got her liver transplant yesterday." This woman, whose name I do not even know, has followed our journey in her own way like many of you have. She rejoiced there with me this morning. I've talked about how Mom's doctors, nurses and aides have been an incredible part of our journey, but it is the hospital staff as a whole who have pulled us through. They keep tabs. They mourn. They celebrate each step of the way. We are truly blessed to be in a place where this holds true. ----------------------------------------------------------------------------------------------------------------------------------------------------- I walked in view of Mom's room this morning. If she was alert last night, it was tenfold this morning. I was down the hall from her room when she saw me. I saw her start shaking and crying happy tears. Her breathing tube was out as of 9AM. She had been very concerned that intubation would further damage her vocal cords, yet she was speaking just as well as speech therapy has enabled her to speak so far. I was thrilled to be able to converse with her so soon after surgery, but (of course) talking is one of the more exhausting things she could be doing. She still has nose tubes in (one to feed, and the other to remove stomach contents), but they may be removed in the next few days. She is getting blood transfusions, albumin, and morphine to tame her blood levels and pain. She showed me her "battle scar:" a series of incisions resembling the Mercedes logo across her abdomen. I told her she'll have a cool scar with a great story to match. ----------------------------------------------------------------------------------------------------------------------------------------------------- With speech being extra exhausting, Mom had a stack of papers on her lap with writing all over each of them. She had been using them to communicate all morning. When Rob and my grandparents arrived, Mom used the papers more to communicate with all of us...and eventually to ask us to take a few more pictures to share with each of you. ----------------------------------------------------------------------------------------------------------------------------------------------------- How she looks now is how she looks, but we trust she will be looking better with each passing day. Doctors say that the new liver will act like a car engine that has not been run for awhile. It will stutter for a short time (seemingly "slow" improvement). Then, Mom's health will improve in leaps and bounds. Already, her ascites (stomach swelling) has gone down. The rest will follow. We are blessed for what has already taken place, and look so very forward to everything to come.

Friday, July 8, 2016

Our Miracle Is Here

A year and a half now we have been praying. It has been a year and a half of doctors' visits, an arm's length medication list, hospital visits, hospital admissions, begging for donors, and discouragement. It has been a difficult year and a half. Finally, FINALLY FINALLY FINALLY, we have what we need. ----------------------------------------------------------------------------------------------------------------------------------------------------- Last night, my stepfather stayed the night at the hospital with Mom. There was a woman, a registered organ donor, on life support. Tests were run, and Mom and Rob were given notice that things were not looking good for this individual. This did mean, however, that there was a high likelihood that Mom would be getting her transplant very very soon. ----------------------------------------------------------------------------------------------------------------------------------------------------- This morning, I was asleep when I received a call from mom around 7AM. I have a faint recollection of this call, but I must have been too groggy to answer. A few minutes later, Rob called and I answered. Mom was supposed to be moved back to rehab today, so when I answered Rob said, "Casey, don't go to the nursing home today." "Why not?" "Mom's getting prepped for the OR." "Rob, what's wrong?" "She's getting her transplant." ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has been as desperate to find a liver as we have been to find her one. I have heard her say time and time again, "I can't wait to get a new liver. It will make me a whole person again. I'll be a normal person again." Yes, it will take time, but Mom will be a normal person again.  ----------------------------------------------------------------------------------------------------------------------------------------------------- We are ELATED! A year and a half of unspeakable grievances are over. This is not over entirely--There is still going to be time in the ICU and therapies to get her good and strong once again. But she is strong enough to make it through this, and she is strong enough to make a full recovery. ----------------------------------------------------------------------------------------------------------------------------------------------------- In the midst of this joy, we are still grieving. When Mom first got sick and had to consider transplantation, she did not know that a living donor was an option. She told us flat-out that as bad as she wanted a liver, she knew that our miracle would be another person's and another family's tragedy. We have very limited information about the person who has just saved Mom's life, but we would like to thank this person and her family. ----------------------------------------------------------------------------------------------------------------------------------------------------- We know that our donor was a young woman. She had been on life support for several days. Someone, somewhere, who we do not know (or we may; Again, we have no names) had heard about Mom and her need for a liver. This woman's family had specifically requested that, if this woman was a match, her liver be given to my Mom. To the young woman whose life ended by giving life to others, we grieve for you and still we thank you with all our hearts. You have not died in vain. To her family if you are reading this, THANK YOU. There are not enough "thank you's" in this world, not enough ways to say it in any language. It is so terrible facing untimely loss; It takes courage we usually do not know where to find. But your choice to direct this donation to my Mom is something we can never repay. ----------------------------------------------------------------------------------------------------------------------------------------------------- We hope that we may be able to pay proper respect to our hero--our heroes. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom's surgeon came in and spoke to us all just a few minutes ago. She is doing well. The procedure took about six hours and went well with minimum incidence. Just as we think news of a new liver is the most incredible news in the world(It is, but this next bit is still wonderful), her surgeon told us that Mom was Yale-New Haven's 500th liver transplant procedure. The hospital may honor her with some kind of celebration--But as far as we're concerned, the glory should go to the people (all the people) who took part in saving my mother's life. Them, and the wonderful God we serve. ----------------------------------------------------------------------------------------------------------------------------------------------------- Susie's story is not over now that she has a new liver. We have witnessed so many loving people showing their support for Mom. So many prayer warriors and so many well-wishers. We are asked daily how Mom is doing, and we imagine that the questions will persist throughout her recovery. As a family, we wish to continue keeping you all posted. We ask continued prayers for the healing process, for the family whose child, sister, loved one, gave Mom her second chance, for the doctors daily saving lives just as Mom's has been saved today, and for those still waiting on the miracle we have been given. We pray that Mom's testimony might be able to reach the darkest corner to bring even a little light. Hopefully, before long,
Mom will be writing to all of you reading herself. As always, we will keep you posted.

Photos Mom requested Pre-op


Monday, July 4, 2016

Good Things Through Bad Times

I've spent over a month now sharing some painful, terrible things with you all. Pain: That's the dominant emotion controlling our lives right now. On Saturday, Mom was transported from Norwalk Hospital back to Yale. She is, once again, in the liver and transplant unit, 9th floor, west pavilion--a place we have come to know well. Most of Mom's time since early April has been spent in this unit, with several weeks in the ICU and three brief bouts in three different rehab centers. Every time Mom leaves Yale, the medical staff, who know not just her but all of us well, tells her they will miss her but do not want to see her back again...But she always ends up back. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has had a very similar problem in the past to the one that has brought her back to Yale this time: Her bloody vomit the other day was caused by three verices (vericose veins inside the body). In the past when this has happened doctors have "banded" the verices to keep them from bleeding any more, but this time they have weighed the risks vs. benefits and opted against taking those measures this time. Also, a few months ago Mom had a "TIPS" procedure in which radiologists placed a shunt in her liver to help blood flow. The shunt is not big enough and has a small blockage, so it has become important for her to have a bigger shunt swapped out for the current one in a "revision procedure." The problem: this is a holiday weekend, and most specialized doctors such as the interventional radiologist do not work weekends or holidays except in emergency circumstances. Mom needs this procedure, but others in the hospital need the interventional radiologists too. She is one of fifty people in need, and therefore cannot get the procedure until tomorrow at the earliest (bearing in mind that this blockage most likely is not a new problem). ----------------------------------------------------------------------------------------------------------------------------------------------------- In addition to this, Mom is hallucinating often. I often hear her say things like "get the sink off the floor," "No thank you. Mom," and "I love you too" while I am alone with her and she is wide awake. These comments are usually followed by "There's no one there, is there?" Or "I'm imagining, aren't I?" Her problems are not strictly medical; She is in a scary and confusing place right now. ----------------------------------------------------------------------------------------------------------------------------------------------------- Hopefully, this will be a quick visit at Yale. We are tired of seeing Mom sent to rehab only to return quickly to Yale. Every time she leaves, we say that we will not be returning until she is there for the transplant surgery. Maybe--just maybe--one of these days that will be true. ----------------------------------------------------------------------------------------------------------------------------------------------------- Enough depressing news, though. There is no good "news," per-se, but good moments and small victories over the past several days. Just before Mom transported to Yale on Saturday, she ate. She has not been eating much at all lately. She finished half a steak with onions, a piece of toast, and half a bowl of cream of wheat all at once. Small victory indeed; We always worry, but we worry that much less when she is able to hold food down. ----------------------------------------------------------------------------------------------------------------------------------------------------- This weekend saw very high spirits in a very low place overall. My stepsisters, Megan and Beth Anne, came from Ohio to visit with Mom. She loved the time with them and enjoyed every minute of it. Yesterday we got to do something as a family that we have not been able to do in a long time: We played a game. Mom's nurse brought in an extra rolling table, we pulled the couch in her room toward the bed, set up the Cranium board, and spent over an hour just playing as though nothing was wrong. We were so blessed for that carefree time. ----------------------------------------------------------------------------------------------------------------------------------------------------- Another shoutout to Mom's medical staff. They are amazing. I made a comment yesterday, about how I'm sure we're not the only ones who cycle through the unit repeatedly. Mom's nurse concurred, but said it's nice because it enables them to build relationships with patients and families. We are lucky to know this to be true, and to have nurses' support and expertise through every ordeal. They make everything possible from us playing our family game yesterday, to keeping Mom comfortable and alive. We are fortunate to have them as a part of this journey.
The girls after a rousing game of Cranium. Mom was a good loser.

Friday, July 1, 2016

Here We Go Again

It's been pretty eventful these last few days. Mom's stay at Yale this time around was only about a week (which certainly beats over a month). Nothing significant happened in this week. Most of it was a hunt for nursing homes. I watched Mom and Rob comb through every possible review for potential nursing homes. There has been too much neglect in past homes to risk settling another time. The list had 16 potential facilities, some good and some bad. Of these 16, only one had a bed for my mom. She was moved to Westport Rehabilitation Complex on Monday afternoon. ----------------------------------------------------------------------------------------------------------------------------------------------------- This rehab facility is okay. The main problem we can see is one we have seen even in Yale: Understaffing, meaning that Mom's needs cannot be met in time for the effort to do any good (when a bedpan is called for, it should NEVER result in the patient wetting themselves and sitting in it over an hour). The technology there is severely outdated, but the therapy is wonderful. It is at least something. ----------------------------------------------------------------------------------------------------------------------------------------------------- Monday through Thursday was fairly smooth sailing. Mom has been on "isolation" for over six weeks. Her immune system is not great right now, so infection is a very serious thing to deal with. She has spent six weeks on IV antibiotics. For her sake and the sake of other immuno-compromised patients, visitors must wear yellow paper gowns and gloves when in her room, and must remove them when leaving. Six weeks is a very long time to battle an infection, but she must be six weeks infection free to have the surgery because the surgery requires immuno-suppressants. Well, she had her last dose of antibiotics yesterday, and is officially off isolation. BUT... ----------------------------------------------------------------------------------------------------------------------------------------------------- Liver disease is ruthless. -----------------------------------------------------------------------------------------------------------------------------------------------------   Mom will never be in the clear--not until she has a new liver, and maybe even then. I received a phone call this morning. She vomited blood last night, and was transported to Norwalk Hospital to evaluate what is going on and most likely to get a paracenthesis ("belly tap") procedure. The doctors found several verices, which were the cause of the last time she vomited blood. We've been here before, watched her vomit blood and had to stand by and trust doctors. We are currently waiting to see if she will end up in Yale once again. We will make it through this and are ever-praying for a liver before it is too late. Asking always for prayers and good thoughts.
(Just a reminder, Mom is "strong like bull" and not planning to give up without a fight!)

Friday, June 24, 2016

A Few Challenging Days

I am a few days behind on updates. Seems as though good things don't typically last these days. We were so excited to have Mom in her acute rehab, and for as tired as it was making her we know she was excited to have the opportunity for such intense therapies. ----------------------------------------------------------------------------------------------------------------------------------------------------- Tuesday morning, we received a phone call telling us that Mom was being transported back to Yale via ambulance. On one hand, we were glad to have chosen a rehab center so close to Yale in case this happened, but we are SO tired of all these bumps in the road leading us back to the New Haven. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom was being transported because the rehab center did not feel secure enough to perform a paracenthesis (a procedure Mom has had many times, in which the doctors drain several liters of fluid from her abdomen to relieve pressure). They did not have the means to stop bleeding or fluid oozing if either continued after the procedure. Her blood levels were off for several factors, and would best benefit from more intense monitoring that the hospital is better equipped for. Bloodwork Tuesday morning revealed more potential kidney problems, but bloodwork Tuesday night did not show any problems (again with the kidneys playing games). ----------------------------------------------------------------------------------------------------------------------------------------------------- It seems as though every step forward means a step or even two back. There's some irony to the latest conclusion: Mom is too weak for the intensive therapy meant to strengthen her. Mom wants to be back in Milford for her acute rehab, so she can get stronger--strong enough for the surgery, and strong enough to be more like a "normal person." I saw her in her last bout of physical therapy in Milford. She made it a few steps, but could not find enough strength to walk the way she did her first day, and she couldn't stand up even with help from her physical therapist. She begged her doctors to send her back to Milford following this hospital stay, but she needs to acquire more basic strength before she will be able to be successful in an acute rehabilitation center. As of now, it is our hope that there will be room in a qualified short-term rehab center some time today (Mom's last short-term rehab center was far from qualified. We are determined not to let that happen again). We worry that standard nursing homes will struggle to meet her needs, but we must also be her advocates if we feel that her needs are not being met.  ----------------------------------------------------------------------------------------------------------------------------------------------------- Of course, the last couple days have brought other stress. Those of you who have followed each post saw my Mom on tape, heard her say how scared she is. We're all scared. We try to put on our tough faces and say it's going to be okay, but there's no way not to be fearful. Finances are running low. Tensions and uncertainties are running high. We have been told by Mom's medical team that the chances of finding a deceased donor that is a match on time to save Mom's life is highly unlikely in this donor region compared to others. We don't know what to do or where to go from here. Prayers and thoughts off strength are, as always, highly appreciated. Thank you all.

Saturday, June 18, 2016

"Stepping" Forward

With how very sick Mom has been, I have been pretty convinced she would stay in the hospital until she receives a new liver. I am happy to say I was wrong. Mom needs some very intense therapy right now (acute therapy)--physical, occupational, and speech. Her various infections over the last two months have made it difficult to move her from Yale to a rehabilitation facility. We ran back and forth between our options for rehab, and although we would love to have Mom closer to home than New Haven, we opted to put her in Milford Hospital because of its proximity to Yale (should she need another sudden trip there). Milford Hospital rents a floor to Yale's acute rehab center, so Yale's staff is working closely with Mom to get her stronger. ----------------------------------------------------------------------------------------------------------------------------------------------------- About the surgery itself: We would think that the sicker and weaker Mom is, the better her chance for a liver, especially now that she is not a candidate for a living donor. She is still, and will remain until receiving a liver, extremely ill. However, rehab is aiming to make her stronger--Strong enough to walk, do normal day-to-day tasks, and to handle herself fairly normally. Until she is strong enough, she will not be able to receive a liver. Once she is strong enough, she becomes a high priority for a liver. Unfortunately, the doctors will not be able to tell us exactly how high a priority she is. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has been bedridden for the better part of two months. It has been very difficult for us as her family to watch, and it has been perhaps even more frustrating to my adamantly independent Mom. She has not been able to wear clothes. She has wanted desperately to get out of bed, but when they get her out of bed and into a chair, there is fear. Even when there are two nurses stabilizing her, to watch her face and hear her cry while on her feet is a terrible thing. She has not taken any steps (even with help) because her body swelling has made putting pressure on her feet a risk. ----------------------------------------------------------------------------------------------------------------------------------------------------- Yale is one of the best hospitals in the world, and they take good care of her overall. In her month-plus at Yale, however, short staffing has been a blatant reality. Mom has cried that they did not take care of her at Yale. I try to have sympathy for the nurses and aides being pulled in a million directions at once, but admit that it is hard to know Mom is sitting in her own excrements for an hour before someone comes. It is hard knowing that someone may or may not come in time for what she needs when she pushes the call button, and it is hard knowing that through no fault of their own these nurses simply cannot be everywhere they need to be at once--especially with my Mom. Not being taken proper care of at all times has made my mom feel pretty dehumanized. ----------------------------------------------------------------------------------------------------------------------------------------------------- Now that Mom is in Yale's rehab, I am SO unbelievably grateful for the change in environment and care. It is a smaller hospital with more staff than Yale's New Haven campus. When Mom presses her help button, the staff responds and helps her. They have expertise in exactly what she needs. They are sure to turn her every two hours, set goals to have her be more comfortable out of bed, and do everything in their power to ensure Mom is eating even when she does not feel like she can. She is going to be exhausted, because she will be in three hours of therapies every day, but she is so excited for the increased strength and independence it will bring. Mom is in clothes instead of a hospital gown. She is still on contact precaution, so we must wear gowns and gloves while in her room, and she must wear them while outside the room, but this is a small price to pay for the care she is receiving. She is able to handle wearing a necklace with the wedding ring that no longer fits (as I write this she just lifted her ring and kissed it). She is snuggling with a Grover doll and appears as comfortable as she can be given the circumstances.
----------------------------------------------------------------------------------------------------------------------------------------------------- But most importantly.......SHE IS MOVING! Today is her first day, and you bet she is exhausted. Her nurse last night warned her today would be a personal hell as she works harder than she has in awhile. She still appears scared while out of bed, but I have witnessed nothing short of a miracle watching her in her therapies today. Before I arrived, I was told Mom walked TEN FEET! Might not seem like much, but this is ten feet from a bedridden woman after about two months of not walking. I watched her in her second bout of physical therapy not long ago. She was scared, and exhausted, but with very little help at all she stood at a walker by herself. She shuffled herself into a wheelchair, was pushed to a rehab gym, and spent ten minutes on an exercise bike. She even asked twice for her physical therapist to increase the bike's resistance. She has a long way to go--weeks here, minimum--but I am not seeing a woman who feels defeated. I am seeing a woman who is hopeful, determined, and ready to beat this. I am so happy to see her here and doing well, and I am so proud to be her daughter
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Sunday, June 12, 2016

Some Difficult News

We have begged for months now for somebody to come forward and be the hero our family needs. I am currently on vacation, and received a call yesterday from my stepfather. He said to me: "Sit down. Are you sitting? Your mom is now considered 'too sick.' She is no longer able to receive a liver from a living donor." ----------------------------------------------------------------------------------------------------------------------------------------------------- This is terrifying news. I could not calm down, and it took me a long time before I could. I am devastated. Liver disease is degenerative. Although Mom has been sober a long time, once the damage was done, it continued. At diagnosis, Mom's liver function was only at about 25%. The last we were told, her liver function had dwindled to about 15%. There is, of course, a real possibility that liver function has decreased further since this report. ----------------------------------------------------------------------------------------------------------------------------------------------------- So, why exactly can't Mom receive a partial liver from a living donor? That is what is really getting to me. We've had so many people tested, and one who was very close to being our hero. It stands to reason with me that a partial, healthy liver would work best compared to a whole liver from a deceased donor. Still, we have been told that mom's body is so sick and so weak that it will not be strong enough to receive only a partial liver. A healthy body will be able to regenerate a partial liver. Unfortunately, a body as sick as Mom's will only be able to do so much with a partial liver. Her body will have to use the partial liver inefficiently, and will be so busy compensating (as it has for so long now--the very thing that has weakened the rest of her body so substantially) that it will not be able to grow the remainder of the liver back as it needs to be grown. ----------------------------------------------------------------------------------------------------------------------------------------------------- We are trying to remain positive, albeit that is difficult. In one sense, there is something good about Mom being so sick in terms of her now being a higher priority candidate for a deceased donor. I'm trying to be more encouraged than discouraged knowing this, but I struggle knowing the numbers are against us. Mom is one of 17,000 people in need of a liver. There are only 4,000 livers available. The most we can do now is hope and trust that Mom will be one of the 4,000 lucky recipients. ----------------------------------------------------------------------------------------------------------------------------------------------------- We have struggled throughout this entire ordeal, as people say they will be or are praying for us. We are a family of professing, practicing Christians, BUT while we have faith in our Lord we also know that we must have faith in medicine as well. To have people say "you're in our prayers" has been a very kind sentiment, and the prayers we have received have been much felt and appreciated, but we have needed both prayers and action. It is difficult to admit, but it feels like in many cases "we'll pray for you" is little more than something people say when they feel there is nothing else to say. We have needed people to share our story, to be tested....but that option is off the table. Prayers--which we have needed all along--are all we have left. Pray for us. Pray hard, pray often, share our need for prayer. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom's spirits the last few weeks have not been wonderful overall, but we are grateful (SO grateful) that the last few days they have been very high. Mom is smiling, her voice is strong, she has no catheter and has had no accidents without it. She is feeling everyone's love, support, and prayers. ----------------------------------------------------------------------------------------------------------------------------------------------------- We have planned to keep everybody posted on the blog, regardless of Mom no longer being a candidate for a living donor. Mom (and all of us) have some continued requests, however. Please, continue sharing our story. When Mom decided to share the cause of her liver disease, she was so adamant about raising awareness. She wants to continue to educate, knowing that there are others out there who need the same help we did and do, and that there is a stigma attached to her illness that we would like to see disappear. Mom wants those who have felt the pull to be tested for her to keep open hearts and minds. There are thousands of others out there who need the same miracle we do, and it's a miracle that anyone can give. To be tested, and to be an available donor, would save a life--The absolute most incredible gift anybody could give. This is my Mom's wish for all of you: That she and others might be able to experience the kindness you have all shown our family.


Thursday, June 9, 2016

The Trouble Turning 21

I turned 21 yesterday. This is the last "milestone" birthday I will have for quite awhile. Many choose to spend their night bar hopping or getting plastered, but I spent my 21st birthday pretty conflicted.
I didn't choose to smoke, even though I legally could, when I turned 18. I knew that was something I would never do, because smoking is what took my dad from this earth; We knew they would, even before he was diagnosed.
Now, I am legally allowed to drink. It is a right of passage. Something, although I cannot put my finger on what, is different between being legally able to smoke at 18, and being legally able to drink at 21. More people opt to drink when they are of age. I (within reason) feel that this is reasonable, even given current circumstances. I had several drinks, took the obligatory "first legal drink" picture, and celebrated as much as someone in my situation could. It wasn't a bad day, but I just need to be hyper-aware of myself when I choose to indulge. Alcoholism is genetic, and I know that my Mom does not want her baby to end up as sick as she herself is now.
I talked about this concern with my Mom yesterday morning, visiting with her before leaving for my vacation. She says she knows I'm a smart girl, and trusts that I will not fall into the same trap she did. I know I need to consider every move I make concerning alcohol very carefully, but I trust myself too--and I want to be worthy of the trust my mother has instilled in me.
 It just feels like there is a sort of irony to my 21st birthday clichés and the current situation. When I went to the bar for my first legal drink, I still had a message scrawled on my car's rear windshield, saying, "Mom needs liver transplant. O blood, please help us!" And my personal cell. There is a knowledge that I cannot afford to overindulge. There is a fear of even mentioning going to a bar disappointing or hurting my Mom.
 I do not want gifts for my birthday, nor do I expect them. I noticed, as people were writing all their birthday messages on my Facebook wall, my Mom made her way into many peoples' wishes. "Hope your day is great despite the circumstances"..."thinking of you and mom in these hard times"..."We know what you really want for your birthday and hope you find it soon." Honestly, all I want, all I could ever ask for, is for somebody to give me the opportunity to have my Mom around for all the birthdays yet to come. I don't want to have to spend another birthday in the hospital by her bedside; I'd rather wake up to a hug from her in the kitchen first thing in the morning. There is no greater gift I could ask for. I'll even take it as a belated gift--somebody just please help me to get this opportunity.

Monday, June 6, 2016

To Mothers and Others

Everyone, I am amazed and humbled at the attention and shares this blog has received in just a little over a week. One of the really painful things about having such a sick mother, one I never expected, is that I have found myself putting myself in her shoes as much as possible. We've told you time and time again, understandably so, that she is in pain and scared. Although I am not yet a mom, I know there are plenty of mothers reading who will understand what I am about to say.  ----------------------------------------------------------------------------------------------------------------------------------------------------- I know children are supposed to outlive their parents, and I understand how tragic it is when this is not the order in which things happen. BUT this fact aside, I know that no mother wants to leave their children before it is her time. A mom's job is many things. When her kids are little, she's supposed to play nurse, chef, chauffeur, teacher...All difficult in their own respects, but moms are seriously the superwoman of this earth. Mom got to be all those things for me. But now that I'm an adult, roles have changed. She will always hold a higher rank, but she's told me that she's watched our roles shift from less of an authority figure/subservient child situation to more of a friendship. That is how (I believe) it is supposed to go. Mom has gotten to do several other things I believe mothers should do for their children. She has seen my brother all the way through his college career and into his career. She was there to help me get ready for prom, watched me graduate high school, and flew out to college with me my freshman year. There's just so much she has left to do for her children before she leaves this earth--Things she cannot do without getting a new liver. ----------------------------------------------------------------------------------------------------------------------------------------------------- I need my mom. Until I am out of the house, I need her there in the mornings to make sure I did not slip into a dangerous low blood sugar in my sleep (okay, not a problem every family faces, but a very real one for us). I need her to be able to make the flight to Abilene in May of next year to watch me walk the stage and receive my diploma. I need her to help me move into my first apartment after I graduate. I need my mom to be there to give me away at my wedding; My dad passed away before getting that chance, and the baton has been passed. I cannot let the baton pass again. I need my mom to be in the delivery room with me when I have my children. To hold them, to watch after them, to spoil them as necessary. I need to be able to call her and actually hear her speak when I've had a rough day. I need many more years of the kind of hugs only a mother can give.  ----------------------------------------------------------------------------------------------------------------------------------------------------- I'm not the only one (not by a LONG shot) who will suffer inexplicably if Mom leaves us. My brother lost our dad too, and it's been so hard. Mom has close friends who check in regularly. They would lose an irreplaceable piece of them. My grandparents have been 15 years now without their oldest child. To lose their only other child would kill them. And my stepfather, Rob. He has been Mom's primary caretaker throughout Mom's entire illness. He has driven her to and from appointments and countless unplanned emergency room visits. He, like I, makes the trip to New Haven to visit Mom every day. He bends over backwards to take care of her. He is her advocate when hospitals and nursing homes have not taken adequate care of Mom. He and I both wish we did not have illnesses of our own that prevent us from being viable matches and saving Mom's life. Rob needs Mom for his own reasons. She is his spouse, the piece that makes him whole. Although he is not my birth father, I know he does not want to be the sole maternal grandparent when the time comes. He needs to be able to have my mom to look forward to coming home to. He is suffering from rheumatoid arthritis, a very painful progressive disease. For how amazingly he is taking care of Mom right now, in time it will be her turn to take care of him in his illness; Without her, who will? ----------------------------------------------------------------------------------------------------------------------------------------------------- I understand that moms have a sort of bond. When my brother was in college, his roommate passed away. My mom was crying in the kitchen when I woke up that morning, saying "somebody lost their baby today." If we cannot find a donor, two more parents will lose their baby. Two more children will be without parents. One more spouse will be a widower. I think that's something anybody can sympathize with. We are not just anybody; we are children, parents, friends, and loved ones who need a very special woman to stay on this earth. ----------------------------------------------------------------------------------------------------------------------------------------------------- And so I address mothers today. Most of you are or have been spouses, vowed "for better, for worse. In sickness and in health." All of you have children who will need you long into adulthood. I am sure most of you do not feel ready to leave your children any time soon. You may have lost a parent when you were my age, give or take a few years, and recall how especially painful that experience was. If you have children my age (again, give or take a few years), how do you think it would impact them to lose you? ----------------------------------------------------------------------------------------------------------------------------------------------------- I know for months now we have stressed the importance of people coming forward as living donors for my Mom, but it's a new perspective. Mothers, I'm calling on you. If you choose to be tested to help my Mom, you will still be around and healthy as ever for your children. You will help other children not to lose their "You." Mothers, if you have children who are old enough to be tested, please encourage them to do so. They would save your life in an instant, but by being tested, they are doing what they can to save other childrens' parent. Mothers, if you have a spouse or significant other who is able to be tested, please encourage them to do so as well. Maybe it will be them who stand in my stepdad's place by doing the one thing he is unable to do for my Mom in sickness and in health. Mothers, encourage your siblings, encourage your parents if they are under 60. Friends, aunts, uncles, cousins, anybody....anybody can be a hero and live to tell the tale. ----------------------------------------------------------------------------------------------------------------------------------------------------- Of course, I am not speaking only to mothers. Everybody has or has had a mother they love. From my perspective as a daughter, my everything right now revolves around my own Mom. We are grateful for those who have been tested and those beginning the process currently, but our search is not over until my mother is in recovery from the surgery, giving a motherly hug to the one who made it possible.

Saturday, June 4, 2016

Mom Would Like To Share Some Words With You All

I walked into Mom's hospital room yesterday with an idea: I thought it may help us in reaching anybody reading to get to see and hear my Mom. I asked if she would be interested in or willing to speak to a video camera. She didn't even hesitate in saying yes. I didn't know exactly how filming her would go (I was certainly not comfortable "interviewing" my mother). I'm asking all of you who may be reading to take a moment and watch...and then to read on.
(In case of technical difficulties, I am attaching a link to the same video on our new YouTube page. Again, please take the time to watch before you continue reading.)


https://youtu.be/Pj74USJJEzs


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When I asked my mom if there was anything she wanted to tell people watching, I was expecting her to reiterate that she is in pain, or scared, or the importance of finding a donor for her. But when she says "don't drink" those couple of times, I was surprised.

Yes, my mom is an alcoholic. Of course, she doesn't drink now, but for a long time she did. Please, don't stop reading now and say "she did this to herself"--Let me tell you all a little more. When my mom got sick and told all of us, we were shocked. We were hurting. I can't speak for the rest of my family, but I was FURIOUS. I blamed her, thought she should have just sucked it up and quit. But I know it was never that simple.

Mom still holds that belief and that blame now. I've come to understand addiction enough to say that this wasn't her fault. She's told me "Yes, it was my fault. Nobody held me down and forced me to drink, I did that to myself." I guarantee that every single person reading this knows and loves somebody struggling with some type of addiction. For my mom, I imagine it began as a drink after work to calm down. One drink can very easily become two or three or four. Nobody plans to become an addict. It's a disease, not a choice. An addict doesn't even realize they are on the verge of a problem until it is too late. Case in point: My very ill mother. For as mad as I was when my Mom told me she is an alcoholic, I no longer blame her. She has been sober a long time now--For as long as she's been sick--But I know that she would give anything to have had her second chance before a new liver became her only option for one.

I heard something troubling recently. People are pretty constantly asking how my mom is doing, even people who don't know her. I appreciate that, because it means there are so many people out there who care. A peer of mine asked about my mom a few weeks ago, and made a comment: "They really need to reform the donor system" (true!) "I understand why they don't want to give organs to drug addicts and alcoholics, people who do it to themselves, but good people like your mom? It's a shame." What am I supposed to say to something like that? Addicts are facing a battle that non-addicts cannot imagine; As someone who has never battled an addiction, I can only do my best to understand. Addicts are not bad people undeserving of life, they are merely fighting a bear-impossible battle.  I will need to spend the rest of my life aware of what I consume, so as not to fall into the same trap. It is a scary position to be in, as both an insider and an outsider.

Another note: I was so afraid to post this video, but Mom insisted it was something she was ready to share; She believes that, because we are asking such an enormous favor of everybody, full disclosure is only appropriate. It is our entire family's hope that you will not be discouraged from sharing or being tested by us having shared this information. Addiction is a lifelong battle. No surprise that, being as sick as she is, Mom has no desire or intention to drink. We know it is hard to predict what will happen post-op, but there are procedures in place for ALL individuals on the transplant list. They must become and remain sober, and engage in relapse prevention therapy. My mother has done all of these things, and with the help and support of all of us, she will continue to do well long after the surgery.

You heard her beg: Be tested. Please, get tested. Mom knows she has made mistakes. She feels like she has let people down. It is my hope that most of you do not feel let down; Remember, the illness began long before her body failed her. She wants her life back. She wants her second chance. She wants to be there for her children and one day to hold her grandchildren. She wants to live. She wants to, one day soon, be able to meet the person who saved her life. We, her friends and family, echo these desires. We would give all we have to give my mom her second chance. Help us, please...

Thursday, June 2, 2016

Kidneys Are Playing Games

Our top concern for the past 15 months has been mom's liver. We've watched it take everything from her...but the other day it became all-too-apparent that her kidneys are in danger as well. Less than a week ago, we began talking about dialysis. The story has changed some every day; Doctors keep pushing off dialysis. It is a balancing act with this decision, as we are needing to trust doctors more than ever to be watching Mom closely, not make the decision on dialysis until they know it is necessary, and not to wait too late if Mom ends up needing it.
What I have said about the kidneys "playing games:" It certainly feels that way. Once the hospital found Mom a bed in the ICU and put her on medications to help with kidney function, they began to do better. There are two factors we are told to consider when evaluating kidney function: output and color of urine. Mom has overall been producing a normal amount of urine, and it has come out yellow, so we have been feeling good about things.
 We know better than to get too optimistic. I spent the night in the ICU with Mom last night. While I slept away, at about 4:30 AM her nurse noticed that Mom's urine was very bloody, and there wasn't much of it. Right about the time I woke up, a urologist was in to see mom, and her nurse was changing Mom's catheter. With the new catheter, mom's bladder emptied--a good sign in and of itself, but all of its contents were as bloody as the contents of her catheter bag had been earlier this morning.

Her urologist says that this is not necessarily a problem with the kidneys; It could be irritation from the catheter combined with a low platelet count, but we cannot definitively rule out kidney function (especially given events of the last week). This is scary for us. As a rule, nobody wants to focus on the worst case scenario, but Mom is very literally in a life-or-death situation, and by assuming the worst, we are able to keep her alive.
Liver failure has been our family's worst nightmare; To add even the potential for kidney failure on top of it is worse. This is part of why we know we need a donor SOON. If doctors opt to do dialysis, it is both a short-term solution and a reason to put more pressure on the transplant team. If she needs dialysis for these uncooperative kidneys, she will need to be on it until she gets a new liver. If she is on it for more than a few weeks, we will need to look at the possibility for a double transplant.
 IT IS HARD ENOUGH TO FIND A LIVER DONOR, WE CANNOT RISK NEEDING TO FIND A LIVER AND A KIDNEY DONOR.
 We are desperate. We've been desperate, but with kidney issues popping up, it's another pressure on us to find the one who will save my mom and our family. We don't have to know you well or have some long conversation about it (although both are welcome), we just need someone who wants to save a life. Please, help us.
 The Yale transplant line is 866-925-3897. If you even might be interested, please call them. Ask about Susan Myers. We need you.

Wednesday, June 1, 2016

What Being A Living Donor Entails

It dawned on me today that for months now we have been asking people to come forward as living donors without fully explaining what this means. There are some organs which can be donated by people while still alive; Most know that, because we have two kidneys, we can donate a kidney while still alive. What is not as well known is that the liver can be donated while still alive as well. Unlike many organs, the entirety of the liver exists to serve the same tasks. There is a natural "split" in the liver, forming two lobes with an approximately 60%/40% split. Liver surgery takes several hours. The donor gives the 60% lobe to the recipient. The liver is an absolutely incredible organ; Although a substantial piece is taken from the donor, as healing begins and continues, both lobes will regenerate into a full liver in both donor and recipient. The recovery takes 6-8 weeks. To even qualify, a donor must be under age 60, the right blood type (any O blood in my Mom's case), and in good health. (Side note: If anybody wonders why a relative is not stepping forward to help, I am the only relative who is young enough with the right blood type, but because I have a chronic illness, the transplant team will not consider me). It is surprisingly difficult to find somebody meeting these criteria, but there are plenty of people out there--people reading this--who do! On this subject, I do not wish to discourage anybody from contacting the transplant team if they do not think they are in good enough health; PLEASE, if you are interested in donating but think you are not in good enough shape, contact the team to confirm. Nothing ventured, nothing gained. If you are interested and a viable candidate after all, you could be the one capable of saving my Mom's life.  When I tell people in person about the need for a living donor, the biggest question I tend to get in response is, "Well, is she on the list?" Yes, my Mom is on the transplant list. However, as you can imagine this far from guarantees us an organ from a cadaver donor. I am often asked about mom's "place" on the list. Fact is, we don't know; There is nobody with the authority or knowledge to definitively say that Mom will be the recipient of the next available viable cadaver liver. The organ transplant list is fluid. There are FAR more people in need of an organ than there are available cadaver organs (yearly, 17,000 people are in need and only 4,000 are available). To determine who is most in need, a "MELD" score is determined by bloodwork. To even qualify for a cadaver donor, a person's MELD score must be at least 30. My mom's is currently hovering around 30, but it changes based on the procedures done to try and heal Mom to the best of doctors' ability. Doctors have been saying for months--even before her score hit 30--that her score betrayed her health, she is much sicker than it lets on, and that by the time she qualifies for a cadaver donor and has one available, she will likely be too weak to survive the operation. THIS is why we are so extremely desperate for a living donor to step forward. So I've told you what the process entails, from requirements to be a living donor to the reasons we cannot bank on getting a cadaver donor for Mom. But there are other things, things doctors aren't obligated to tell you, that the process will entail and the results it will bring. It requires selflessness and courage on behalf of the donor, and courage and a thankful heart on behalf of the recipient. It means that, after a healing period that is so short in light of the devastating months of illness, we will only need to see the inside of the hospital for check-ups following the procedure. It means that Mom, who can only speak at a whisper, will be able to speak again. It means that she will be able to walk again. She will be able to use the bathroom instead of a catheter, and will not require nurses and aides to clean her BMs. She will be able to put weight back on. She will not have dangerous amounts of fluid beneath her skin. Her skin will no longer be paper-thin. She will not have to limit herself to a liter or less of liquid consumed each day. She will not have to worry about almost entirely losing her mind when levels in her blood go askew. She won't have to wait a month for a bruise to heal. She won't be anywhere near as at-risk for infection as she has been, and if she gets one she will be able to recover quicker--in fact, she will be more likely to recover at all. We will not have to worry about the rest of her body getting so tired of compensating for the liver that they shut down. This is just what it means for my mom. For us, finding a living donor means that I won't have to worry about potentially needing to call an ambulance whenever I walk in the house. It means that we won't be commuting an hour each way to New Haven every day, while trying to work and find time for our own mental health. We won't be kept awake at night wondering how much time we have left with her. My brother and I will have years left with the only parent we have left. My grandparents won't lose their only other child. My stepfather won't be a widower. My mom will escape with her life. I have mentioned this before, but I really want to address anyone reading this personally: Stranger or not, you are not just anyone. In this context, you are not just somebody with a healthy liver we want to take. You are a person--one with a heart that beats, compassion, and love to give. One with family and friends who you would make this decision in an instant for. In my family, and in my community, we don't let a good deed go unnoticed; We are grateful to you for even taking the time to read this. We are grateful for the shares on social media, and the thoughts and prayers being sent our way. We are grateful for those who have already stepped forward to be tested, even though we have no matches as of yet. We are hopeful that someday soon we will have somebody who is both willing to donate and a match. PLEASE--we are all begging--make the sacrifice you would make for a friend, and help us to keep a beautiful soul on this earth. We are running out of time, and we are running out of options.

Monday, May 30, 2016

A Picture Paints A Thousand Words

You hear it all the time: a picture paints a thousand words. Look at this one here. I couldn't tell you when it was taken, or any other context. I can tell you it was quite some time ago, maybe when she and Rob were still dating. She was a bit younger. Healthy. Happy. Many happy, healthy, years ahead of her. Sure, years have passed. But with most people, years pass slowly. What I mean is that aging happens gradually, and that as health inevitably worsens in old age, there is an expected timeline for the process. We have all seen loved ones who were not so fortunate to have their health follow this expected course. We all know people who have been diagnosed with cancer or some other horrible disease--people like my dad, who have withered away, who we could not do a thing to help except to be there. We have watched their bodies betray them, and told others about the horrible things happening, knowing that words are only worth so much.
There's Mom, right in the middle of the frame this past Christmas. It's the only picture taken that she would let us keep, because it hides how sick she looks pretty well. If you look closely, her right hand is jaundiced. The picture does not show well that her entire body is jaundiced, as are her eyes. Exactly how yellow her eyes and skin are has fluctuated throughout her illness, but the presence of jaundice has been fairly consistent. Then there's the weight loss. You can tell that there is almost no "meat" around her wrist. Her face has thinned out considerably, but it does not look healthy. The fabric on her sweater is bunched, having no fat to cling to. Liver disease has made her very skinny, leaving her with an almost anorexic appearance. Her appetite is generally very low, and even the most nutrient-dense foods and supplements are not enough to put weight back on. The black contraption wrapped around her is a back brace. At the time she had six fractured vertebrae. Liver disease has weakened her bones and her body. Ironically, limited mobility is what broke her bones. They have since healed, but back pain remains. If you look even closer at this picture, you might be able to spot her belly pooching out underneath the brace. Her belly has been extremely swollen throughout her illness, a condition called "ascites." Fluid collects between her skin and her organs, which has caused tremendous discomfort. Doctors can periodically drain this fluid, but it comes back very quickly--usually within a day. Although the fluid is always around her abdomen, lately her arms, legs, and digits have been alarmingly swollen as well. Because of this swelling, she and her medical staff must be hyper-aware of how much she drinks, and she is on a very strict fluid restriction. This above picture offers a taste of what mom looks like and goes through, but the next photos offer a clearer picture.
 
THESE. Are our new normal. The photos were taken just yesterday. Mom's body is weak. She is, plain and simple, not doing well. These photos show her jaundice more clearly; It is pretty heavy in her eyes as well. She is on oxygen for pneumonia that occured as a complication of liver disease. Her skin is frail, as many elderly peoples' is; She cannot even use a regular band-aid because it will rip her skin. When her skin breaks, as it does often, she is left with a dark blotch beneath for weeks. The bandages on her arm are currently labeled "skin tear" and dated. She has one IV on her arm, and another on the right side of her neck. The band-aid on the right side of her neck is labeled with a warning to doctors: do not insert an IV here, in case she needs this artery for dialysis. She is a tangled mess of wires, each of them constantly measuring her vitals. She has a catheter which (thank God) is collecting urine today--meaning her kidneys are okay for now! However, the pictures say a lot: liver disease has taken my mom's health and independence. Every improvement seems to be "one step forward, two steps back." 
To anyone reading: We realize what we are asking of all of you. to many of you, we are just another family of strangers going through a hard time. To those who know us and haven't seen my mother for a long time, it is easy to hear these stories and think "how bad can it be? She was fine awhile ago." I try to put myself in all of your shoes, and I'm sure it can also be easy to say "someone else will step forward, I don't need to be a part of this." I would give ANYTHING to save my mom--she's the only parent I have left. By you who are reading this sharing, calling to be tested, and asking the same of your friends and family, you are doing my family the biggest service that could ever be done. I also realize there are concerns with practicality: We are asking anyone and everyone to consider major surgery. That's nuts, I know. But Yale is the best hospital in the world, with the best doctors there are--for taking such good care of my mother, they will take great care of you. Travel expenses? Can't afford to miss work? Local organizations have set apart stipends for anyone willing to help us--money to help cover travel expenses and bills for work missed (NOT paying for an organ). If I sound desperate, it's because I am. We all are. We may be strangers, but you are a stranger to somebody too, and we're sure you would take the same measures in our situation. PLEASE look at these pictures, and look within. We are waiting for our hero. 

Sunday, May 29, 2016

Kidneys Are Not Doing Well

Some days I walk into the hospital and Mom will break out into a huge smile. Other days I walk in to very little response at all. Others yet, I walk in and Mom breaks out into tears. Sure, she's happy to see me, but the tears are never happy ones; They are scared ones.
I walked into the hospital around noon yesterday and it was a crying day. I said "Mom, what's wrong?" (Besides the obvious). She said "My kidneys are failing." That sent a serious shock of fear through me.
Her nurse came in a moment later and corrected her; Her kidneys aren't failing--yet. They are, however, stressed. Very stressed. She is not producing much urine at all, and what she is producing is very bloody. Not good.
Her blood pressure is very low. Doctors suspect that her blood is not flowing quickly or strong enough to push blood through the kidneys. She is currently in the ICU with very strong medications working to hopefully raise her blood pressure and  "wake her kidneys back up again." She's been in the ICU almost 24 hours, and if the treatment is working at all it is not yet showing much progress. They have warned us that she may need dialysis to preserve her kidneys. We will know for sure within 24 hours.
The liver and kidneys work closely together. We were told to expect eventual kidney problems, but until now her kidneys have managed to stay in excellent shape, all things considered. That being said, we are feeling pretty blindsided over how quickly even poor health can take a turn for the worst.
As you all can imagine, this is more scary news than we have had to face for some time now. Mom usually smiles at least a little throughout the day...but she hasn't been doing much of that the past day. Most of what I heard her say yesterday is "I'm scared." As the doctors explained the possibility for dialysis and what that entails, she looked at them and begged: "Don't let me die."
As she looked at me and told me how scared she was, I tried to stay strong. I'm not the only one trying to hold myself together and be strong for her. But for the first time in awhile, I couldn't hold the tears back when they wanted to come. All I could do was turn away.
It is not too late for her to get the transplant she needs--the only thing that will save her life. If anyone reading has type O blood and is interested in saving an innocent life, PLEASE: call the Yale transplant line at 866-925-3897.