General Hospital

I have been watching General Hospital since I was a small child. Perhaps my entire life through, my mother and sisters. Over the years us girls watched Days of our Lives and General Hospital. I am the only one who still watches. I tried forcing it on my kids over the kids. My oldest watched until a few years ago. My son stopped the second he realized what I was forcing him to watch. My youngest watches with me faithfully. I know I can only count on that for so long so I will continue to cherish it.

For the past few years the story lines have been very predictable, repetitive and at times downright annoying. Somehow, my morbid curiosity forces me to watch each day and at times look forward to it.

The past few weeks, the show is on fire! It is finally interesting, finally semi-unpredictable and truly entertaining. I am glad I spent 40 years paying attention as now they have brought back old storylines and infused into current storylines and they actually halfway make sense, and they have been able to pull old footage and ad into make the stories more believable.

I am impressed and a little sad that it is Friday and only one more episode for the week.

The good thing is there is plenty of tv to keep me watching. Gotta love NetFlix.

And here’s to the future….

After almost 15 years I saw a Physiatrist, I used to see one a long time ago. At the time I suffered from not only depression and anxiety but self worthlessness. That was a long time ago. I have learned a lot about life and a lot about myself in these years. I no longer see myself as worthless, I actually think I am a pretty cool person. I am kind, well mannered(for the most part) and I can hold up my end of most conversations and when I can’t I stay quiet, crack a joke or admit I have no idea what you are all talking about so I am just going to sit back and listen.

I think all that that makes for a little clue as to how I might think, but it does not. It would be improbable to think that someone would be able to delve into my brain and get what is going on in there. It can be a scary place sometimes, mostly just mixed up, hyped up type thought but then there is some dark and depressing,sad and confusing stuff in there also.

Most people think I just go about my days but there are a handful of people who really know me. They know that I fight depression and anxiety and although I give it a good fight now and again it gets the best of me. In the past few years I have learned that no matter how I am feeling, put to the test, I will react and take care of whatever I need to do. If we have appointments, I get to them. If we have bills I figure out a way to pay them, if we have food I cook it, if we don’t I figure out how to get it and so on. So I do fight it, so what does that really mean, nothing on the big swing of things I still need help. I still have days where it is a complete blur and I have no clue how the things got accomplished and sometimes I wonder what exactly I said to all the people I encountered.

Well as it seems, the doctor did not admit me to an institution so that is a good sign. He also did not deny that I have had these issues a long time and even though I fight it on my own, I don’t need to , he is there and he will help to the best of his ability. I need to understand that just because you take a pill it does not lessen the fact that your kid needs to endure one more huge surgery before the summer is out and she really does not want to do it. It does not change the fact that I need to work, yet how can I work. I need to take care of business yet it is stressful not having a clue how. I need to understand just because a take a pill it is not magic it will not take away real life, however it will help, it will make me more evened out and less I can accomplish the world today and tomorrow and then I can’t get off the couch for three days. It may not make it perfect but it will help me to help myself. I believe that is a really good starting point.

I also learned that me talking to people about my issues and what is going on in my mind is a good thing and that seeing a counselor will help me work out some of the emotions I have and if anything give me a good sounding board. I need that.

I have so many stories I would like to share. So many things I would like to talk about , but then people would know, then people judge, then people would look at me and have something say about things that are past tense and even if you would have done differently, I am not supernatural and I can’t go back and change events, it is simply not an option. Although that would be kind of cool. I watch  a lot of Supernatural and Charmed and the different powers are all kind of awesome, but I know better….

So I will try out some new medication, hope it works, hope I don’t break out in hives like the others in the past, and hope to be able to see my future in the bright way I would truly like to see it…

Team Angel- Spinal Fusion

Thanks for the reminder Vater Syndrome!

These are the Before and After X-Rays of my daughter’s spine. Actually they are after and before as the pictures are posted.

Just last week we had her spinal fusion done. It was about a 4 hour procedure, although this is Angel we are talking about so you probably already know it was not really 4 hours. We got to the hospital ahead of time about 5:45 am and the day hospital opens at 6. By 6:20 they are looking for a good spot to put an IV. I explained to them she is a very hard stick. Even though they heard me they really were not listening to me. Not one of the 4 nurses could get a good vein. Don’t get me wrong the nurses found veins. They just did not work from all the scar tissue. The reason I tried telling them she is a hard stick. Eventually the Anesthesiologist Doctor came in and popped one right in an artery. I guess he can do that. At this point she was slightly overwhelmed but she is getting older now and learning to deal with the fact that she can’t stop all the doctors and nurses to come in when they need help. That is overwhelming for Angel she hates that. At home(TGH) they know that, at The Joes as Angel calls it they are learning.

So now the procedure is supposed to start at 7:30 and in fact they do take her back at that time. The nurse told me I will call you once the procedure actually starts and then each hour until it is completed. I was happy with that. I figured I would be less stressed getting the calls. I go back to the waiting area with me son and a gentleman from the hospital approaches me and asks if I would be willing to be part of their pilot program , updated text messages. I thought it was a great idea so I agreed. Now time is passing, My Dad shows up, now we are sitting waiting, my son, my Dad and myself. I am starting to worry why have they not called out yet? What is going on? Finally just after 10 am I get a call from the nurse explaining that the procedure is just now starting as they could not find a spot to put a central line, All of her access spots are shot and they struggled to find one.  It truly breaks my heart as I told them this from jump.

In any event she was comfortable and did not know anything going on as she was already sedated. Each hour or so they called out and each time assured me she was doing great. I also received a few text messages in between so I was super informed. I think the texting is great as it is not as scary as the phone some how or another.

When she first came out of surgery we were fortunate enough to know the recovery nurse. She has known Angel since she was a little baby and was quite familiar with her past health experiences. She recognized right away that her potassium was way too high for a Renal patient and immediately worked to get that reversed. By that evening her lab were almost back to normal. That was a good thing as any stress to Stevie(her transplanted kidney) is scary stuff.

The next two days were spent managing pain , only to wind up having a reaction to one of the IV pain meds so lots of steroids and benadryl and eventually figured out another pain plan. By the third day she was out of the ICU and on the second day of Physical Therapy. By day 5 we made discharge plans and have been continuing to heal at home. Aside from the obvious pain she is doing wonderful.

We are already noticing some differences, such as she is taller, her ribs are no longer sticking out in the front and back making her shirts fit wonky as she says. She said no longer feels the pressure in her lungs she was feeling from the ribs pushing and she is now practicing being straight which is quite different than it feels.

I knew this would be a big surgery, I was not surprised by the amount of blood she needed, or the issues getting the correct plan for pain. I was totally surprised by how quickly she was able to shift herself and put full weight on her legs.

Tomorrow she goes to get her stitches out and speak with the doctor about the amount of pain she is still currently having and the best way to manage it and hopefully get clearance to go back to teleclasses as the more you miss the harder it is to make up in school.

@TeamAngel

So I get a knock on my door….

I am not sure about you but for me I find this kind of distraction annoying. I work from home. This allows me to have great opportunity to care for my family and actually not hate work. I can roll out of bed, log on start my morning get things in order and then wake up my kids. I can pretty much run my household while still being productive at work. This is a blessing that took me many many years to find. Although it is only part time and I do struggle financially , I don’t mind. I have the exact balance I need right now today. My youngest daughter has many health issues and being able to care for her needs is worth not  having the extra’s.

This morning I have been up for several hours. Working corresponding with people and simply doing my job. I went out to the living to see what my daughter is  up to and freshen my coffee. I hear a knock on my door. I was somewhat startled, but I thought maybe it was finally maintenance that I called the other day. No, it was not the maintenance, it was not friends or family. It was two ladies that I have never seen before. Right away I was regretting opening my door. The way I see it is religion is a personal thing. If you are very religious or not religious at all, you may believe, you may have faith and you may not believe at all. Either way this is you business, your choice and well, your life. As soon as I said Hi, they said Oh Good Morning,  We are hear to invite you to Jesus’s birthday party. My eyes were rolling into the back of my head and I had to politely hold them still while holding a straight face and continuing to be polite. This was not easy as I am that person who messes with telemarketers and tells jokes to random people so I hold back my sarcasticness and politely take her paper and tell them to have a nice day and shut the door.

I was doing my best not to be rude, I was doing my best to hold a straight face and not be a clown and truly I was standing there half dressed and annoyed they were distracting me from my morning.

I really don’t understand how someone can knock on my door, assume that I believe in Jesus, assume that I am interested in religion at all and then assume I would go to a party for a guy who is not going to be there. Do I bring presents? Is it a kid party? Do I need to dress up. Like give me a break. It is your way of trying to force people to come to your Kingdom Hall or Church or whatever it was, that I did not bother to find out about. I wonder how well it would go if I took my kids dressed them up like my daughter was for Halloween(she was Abaddon from the TV  SuperNatural- All red hair and bloody head cut off ) (her character was trying to be the Queen of Hell she was trying to take over and she was well pretty badass)and went around telling them I am pretty sure Lucifer is out of the cage and he wants to kill the darkness. Or I could tell them Lucifer is driving around Los Angeles I saw it on a commercial.Or worse yet I can tell them the truth, I was raised Jewish I still follow a lot of the tradition but I am not entirely sold on the whole faith thing. I am thinking someone would call the cops on me. I give it about 6 door knocks and I will be explaining to my family why one of them needs to bond me out and get my kids back from protective custody. Yet these people can knock and force their religion down my throat and that is just fine and dandy because more people are into those religions.

I  live in a crappy neighborhood, in a low income apartment complex. I don’t believe anywhere states that means I should be solicited for religion. I think it is annoying and no wonder people with money choose gated communities so no one can knock on their door unexpectedly.

On the other hand, my curiosity has me wondering  what kind of cake do they serve at Jesus’ party?  Is is a little cake like I make for my family? Is is a big fancy cake with many tiers? I am confused by this whole party thing and I am pretty sure if curiosity got the best of me and I went to such an event I would find myself at some festival where I would be expected to buy little trinkets or something like that. I am just guessing though. I really hope the next door knock is either maintenance or someone accidentally ordering us pizza.

The Versatile Blogger Award and Me…

What an honor it was to look at my notifications and see that I was nominated for the Versatile Blogger Award. I received notification from Madhurima all the way from New Zealand, she runs the Nostalgic Lemon Blog. I found her blog one day while just wanting to read about some of the shows I was just about to start Binge watching. I like what I saw and followed her. She writes about different subjects such as TV, Books to Personal Stories she shares. I was so shocked and surprised when I saw her nominate me for the Versatile Blogger award, I thank you and wholeheartedly accept the nomination.

In accepting this award there are a few small rules to follow:

So upon acceptance of the award, here are the official rules:

  • Thank your nominator
  • Share the award on your blog
  • State 7 things about yourself
  • Choose 10 new nominees who have fewer than 300 followers
  • Notify them via social media

 

I have been reading blogs and truly looking to see who I would like to nominate for this award. I tell you it was not easy. I read and read. I thought about. I searched for different subjects and blogs that I would normally read. I did not search for things outside of my interest as I want to nominate those I truly feel are Versatile Bloggers. Some blogs are truly wonderful, but they are limited subject matter. Many many blogs are automatically excluded from this as their following is already past 300. My nominees will be contacted very soon.

7 things you will now know about me:

 

  1. I am a terrible Movie Partner. I catch the giggles at the worst times and my attention span is short. I have been known to go to the bathroom and come back in and say random things like” What? no- one here could pause the movie for me” That either results in laughing or dirty looks. There is only one small group of moviegoers left that will put up with me, My oldest sister and my youngest daughter. Everyone else well they tell me about the movie after they  have already seen it.
  2. I always find the good in people, even when they have a lot more bad than good. I believe every person, even the worst people have some good in them. Maybe they are a thief but they would carry an old lady’s groceries or maybe they are like Robin Hood, steal from the rich and give to the poor. This has not been my brightspot in life. Even when the bad is out seeking me, I tend to find reason to see the good anyway.
  3. I am a HomeSchool Mom. If you know me that is not even in my personality at all. But is is true. My oldest daughter started homeschooling in the 8th grade. She was missing a lot of school with my youngest daughter being in the hospital all the time.Now my son and my youngest daughter are also homeschooled. It is a lot easier than it sounds. My son and oldest daughter attended school on the computer.(my oldest graduated several years ago) They have actual teachers that they must answer too. My youngest daughter attends Hospital Homebound so she sees the teacher 2 times a week and they send work home and I help her as she needs.
  4. My life can be described a one long run-on sentence. Although I have never been properly diagnosed, I am ADHD. When in preschool, I was that child that woke every one up from nap, just because. and well 40 years later I have not changed much. I am that Mom who wakes my kids up in the middle of the night to tell them a joke. They are used to it, but I get lots of eye rolls and sarcastics Moms!!!
  5. I am very sensitive. I cry for other people randomly. I had to stop reading the newspaper when I was younger because I used to cry about things all the time and it drove my late husband crazy. He would say can you read the comics or sports or something. I am not a wimp or a cry baby, as a matter of fact I am quite the opposite I just have a really compassionate sensitive side.
  6. I have a great Sense of Humor. My childhood was picture perfect, my adult life has been quite a mess. My sense of humor has gotten me through, loss, divorce, raising kids and so much more. I am truly thankful that I can dish it and I can take it. I like corny jokes and sweet Romantic comedy. I have a wide variety of levels to what makes my sense of humor unique.
  7. I am in my early 40’s yet I am already Divorced and Widowed. This makes for lots of reasons why my life is a run-on sentence and why I need such a great sense of humor.

 

 

Now that I have shared 7 things about me, you maybe happy to know there is more where that comes from.

Please enjoy reading my blog. Have I told you about the time….

https://lisabarriera.wordpress.com/

 

 

 

 

Part 3 – A Successful Transplant

Part 3- A Journey to my Daughter’s Kidney Transplant

 

June 2015, Typical Wednesday morning in dialysis. Chatting and watching TV, waiting for the teacher to come for school. Dr C comes in, says come here to me, in his always the same  Dr. C way. You feel like your school Principal just walked in and is about to scold you for something you are not even sure  you did. He said, its time. We have reviewed everything single thing that happened last time. We have gone over ever test and saw what is the same and what is different and we all believe it is time to move forward. You may or may not get a visit from the Transplant surgeon(He always checked in on her regularly throughout the years) We were hoping when the time came he would be the same doctor to do the surgery but of course we don’t get to dictate this type of event. He told me that The transplant coordinator would be over to see me in the next couple of hours so If I need to stay late after dialysis plan to do so. That today they will activate her on the official list. I don’t think I uttered a word, I just let the tears run down my face. I smiled and said I don’t know what to say. It’s so scary and so exciting and he smiled and quite frankly I don’t even remember what he said. What ever it was I continued to smile and went back into the room where my daughter was having her treatment. We got to use the isolation room as long as no one else actually needed. This helped for school. As she had only been schooled during dialysis she was really behind for a really long time. She has recently caught up to the best of her ability and we are actually looking at school for next year.

She said to me, Mom why are you crying. I said I am happy. Dr C said you are ready. You are ready to get a kidney and they could call right now or a year from now any time. I told her that we will wait for the transplant coordinator and she will explain some things and I may have to sign some papers or something. She was happy but did not really catch the excitement as she is the one who must endure all that goes with it. She knows long run she will feel better, short run it hurts. She is one tough cookie. When school started I went out to the floor with the other kids. When Dr. C motioned me to the desk all the older kids did their oh’sss and ah’ss   ha ha your in trouble. So now they of course want to know if in fact I am in trouble, is the little one ok? I went and told them that she will activate on the list after all these years. The kids were all excited. My daughter could not hear the conversation as she was doing school and the door was shut. The walls are basically glass so we can all see each other. When I told one of the Mom’s she started hugging me and crying as that is what we do in Dialysis, we love one another. We get new members all the time. We lose members. Sometimes people leave the state, sometimes they get transplanted and sadly sometimes everything goes wrong and we actually lose a member. We hide if from the little ones so they don’t have to actually think of the reality. I recently told my daughter about an older girl she did not know passed on. She was truly heartbroken and she said she thought once that me and my older daughter were being weird and went out all day she did not know why. That is the reality of living with Kidney disease it is a treatable disease but it is also a terminal disease. If you have Kidney disease likely your end will meet with complications of Kidney disease. I know people who have lived into their late 70’s with dialysis daily and still went to BBQ’s and drank a beer. People can live with Kidney disease but each person’s severity will of course be different.

Told you I get off topic easy. I would venture to guess I am likely ADHD. I have been hyper my entire life, I never stay focused, yet I can accomplish anything if you leave me alone and let me figure it out for myself. If you pressure me into doing your way, likely I will screw it up.

So now we are on the list for a few months. Life as it is has changed for our family. I am now a widow learning to live on my own again after so many years of having a partner. I learned just how hard it is to get by on your own with limited income and limited resources. My daughter’s medical needs  are a priority and unfortunately it is not possible to work full time and care for her needs. The state does not offer me any cash as an option as they state to get welfare you must volunteer 40 hours a week. I told them if I had 40 hours a week surely I would just work. I have learned to live on 20 hours a week. It does not go far and does not allow for much extras but we are living. We have a great apartment in a terrible neighborhood. We have food and we have our internet and we make due. I have a great family that knows this. They compensate where they can, Take us out to eat, take us to a movie they have even purchased us tickets to the amusement park that is local so we always have something we could do if we are able.

My oldest daughter moved on, she lives in her own place now. She has started to show some serious signs of maturity so I am able to worry a bit less. So now at home it’s just the three of us. My teenage son, and my little one and of course our dog. Our dog has been a big part of helping my children heal when they lost their Dad. He got them this puppy that no one was prepared for. He turned out to be a  big baby and we have since trained him to be a Service dog. He is not the most intelligent service dog but he is their for emotional support and does that well.

We were living in a rental house. This house was literally falling apart and the rent was higher than I was comfortable paying. I was struggling financially and my stress level was at an all time high. Finally I gave into looking at low income apartments. I did not want to. I know they are all in crappy neighborhoods, with crappy neighbors and crappy stores and all that. I also knew that the apartments are kept up with, big, fairly new and cost a comfortable amount for me to pay. I had no choice but to either pack it in put my stuff in storage and beg from my family or move to the apartments. I chose the apartments. A couple of months had past since my daughter became active on the list. I joke with her nurses I said if I know our life, we will get “The Call” the day we are moving. They laughed and said if I know you guys,  you are right that is just when it will happen.

Moving day approached. We packed we went through our stuff and really got rid of things we did not need to move with us. A big job and with as stressed as I was I was proud of myself for accomplishing most of it on my own. My son and daughter of course helped but I am used to my oldest daughter and my husband helping me with all the big stuff. The day before moving. I was getting everything in order. We had packed everything we could possible pack and I finished working for the day. We decided let’s watch an episode of our favorite show.. SuperNatural. I left my phone in my room and I was sitting on the couch ready for tv. I hear my phone ringing and I said to my daughter Answer that. I hear her on the phone and say I will get my Mom. I said who is it and she said I think it’s Dr. P,  my eyes widened and she said I have a Kidney for your daughter. I am not sure it is perfectly healthy but if it is healthy it’s an excellent match. Please head to the hospital now. I started crying, just like I am now when I re-tell the story. I knew my oldest daughter was at work so I text her and Facebook message so I know for sure she will see one of them on her break. I called my sister’s. I started crying in the message , Don’t even know if she could understand me and I called my Dad. We went to the hospital. We did a fun night time dialysis and all of our family showed up. We waited and waited to see what direction the Kidney would go and all the old emotions came up. The night moved on and by 1 in the morning we still did not know anything. I told my daughter that me and my son are going to go home and walk the dog and make sure he is well and we will be back in a few hours. For her to go ahead and get some rest. We went home took care of all last minute moving things, not sure what was going to happen there and fell asleep for a few hours. At 5 am the phone rang and Dr. P said I am sorry but I really just don’t like this kidney. It is not showing me the signs I had hoped for but, hey the good thing is we are there. She is at the top of the list and the next match will be better. I said ok should I come get her now she said no  I would like to do dialysis this morning anyway since we are going into the weekend. So I said ok I will be there by the time she is hooked up. We did a shortened dialysis and gathered all the treats everyone brought to her and went home. We waited for our moving truck. It was late and the day got hectic but by 10 that night we finally had all our stuff in our new apartment and the old house was emptied and cleaned. We realized we were starving and my Dad and Sister and Grand- niece took us to IHOP for some very needed nutrition. We were exhausted from the night before’s hospital and the move. We went home and fell asleep once our heads hit the pillow.

5:30 AM the next morning. I am sleeping starting to stir, realizing I am in a new place I think the phone was ringing. I answered it half asleep and it was Dr P. She said good morning and I think time we have a perfectly healthy kidney but your daughter is the back up the kidney came for another patient. That patient is having some health issues and we can’t be certain that now is a good time for surgery. If in fact that happens surely your daughter will have surgery by tomorrow morning at 6 AM. She said since it has only been 24 hours since your labs were drawn we do not need you to come in yet. She said don’t let her eat or drink anything after 10 AM just in case it comes earlier. The day started passing and we tried to unpack. It was not possible to stay focused as we knew(well we hoped we knew) any minute we would head back to the hospital and this time was going to be for real. We already did our practice run. Finally around 6 I get the call for sure this is her Kidney, but since they have not harvested the organs it will still be a while. Wait for a call around 9 ish and let her eat up until 8 PM. I was so excited,  I was about to take her anywhere to eat and then we realized what if it is noisy and we don’t hear the phone. So we opted for some sandwiches and took care of her medical needs and bath nice and early. I told her this call can come at any time so lets just lay in the bed, watch TV and Nap. We fell asleep. About 5 minutes into sleep my son came in my room, screaming at me. Mom why are you sleeping they are going to call any minute and you are not going to hear the phone. I agreed that he should hold my phone and wake me when the doc calls. At 1:45 AM he comes running in my room, Mommy get up the Transplant Guy from the Hospital is on the phone. He said I need you here within the hour to prepare for 6 am surgery. I made a few phone calls and we headed to the hospital. I will never forget walking through the parking lot to the main hospital to admissions. We ran in the security guard and he said what are you guys doing here its 2 in the morning. I said she is getting a Kidney. We had a happy dance party for a few and he escorted us to the ER where they do middle of the night admits. We tried to be patient waiting for transport but now it was approaching 3 AM and I just wanted her to be with her Nurses and make sure they take care of all the last minute details. They lady at the desk told me I won’t tell anyone if you guys just found yourself in room such and such she gave me a quick wink and we ditched the ER and went straight to the pediatric floor. We know that hospital better than the employees so this was easy for us. When we finally got to the room life turned into slow motion. My sister showed up and brought me coffee or soda or something. I called my oldest daughter about 4 million times. Poor thing was sound asleep and never knew anything until she was halfway through the surgery. My Dad and sisters and son sat with me during the surgery.

We were told the surgery should be about 4 hours long. Before we went in my daughter told the surgeon. Hey Dr B can you take a picture of my Kidney. He explained that at his age that would be technically challenging but he would ask and see if he could make that request happen. Well he did and he had it framed for her. I do believe I told you before she has the entire staff wrapped around her fingers. We waited and waited and the 4 hours turned to 7. I started to panic and just when I thought I could take no more, out came Dr. B He said well she is doing great. He said this is your daughter you know she is a complicated tricky one so surgery would have to be complicated and tricky but it is done and we believe everything is doing great. By the time I go to see her she was already off the Vent. This was the exact opposite of last time. She was producing urine. At first it was a little slow. I was semi panicked but the docs were happy. The nurses were happy, everyone that was there 7 years ago and remembered all that went wrong, we’re confident that this time would be different. The days started passing. She started producing more and urine. She started tolerating the pain and she started eating. Things were truly looking up and by the end of the week they were talking about transfer out of the ICU to the Floor. This is a huge step and about another week passed and we went home. Although she had to get a Urostomy and that is a complication of not having a functioning bladder. That just a complication for now. In the future someone will figure out the next step and build her a bladder and hopefully it will be functioning.

It is now 8 weeks post Transplant. All labs are within normal ranges for a person with healthy kidney function. She is having a few issues with the Urostomy that we are working through and her blood pressure is finally trending down to a more tolerable number. She is eating and drinking like a champ and each day she gets better and better. Each day we watch her skin get clearer and softer, her incision is almost totally healed and most of the bruising is gone. We have started taking daily walks, resumed school( still at the hospital) and we are actually learning what it is like to have life Post Transplant. It is a true miracle. We could not be more thankful to the donor family for making that unselfish decision to donate and truly make my daughter’s life healthier therefore better.

 

Thank you for taking the time to read our Journey through her Kidney Transplant.

There are 3 parts to this story in total….

Part Two-It does not always work out…

Part 2

 

After 9 weeks in the Pediatric ICU, my daughter started to gain strength and start to heal. She was transferred to the floor where she immediately started going back to her regular self and was home with-in about 2 weeks time. We went back to our Dialysis and school routine. We were so happy for Dialysis and our daughter being alive and getting back to what was her normal. We told everyone we are happy to go to dialysis for as long as it takes for her to be healthy enough to try again.

In the end of the day Kidney Transplant is just a treatment for Kidney disease. It is not a cure. It does not come without risks or without worries. Kidney Transplant has ups and downs just like dialysis but it seems to have more ups. I saw several other children go through successful transplant and I did not understand why my little one had to endure so much. Why did she have to be born with all this extra crap, that believe me you would not want to wish on anyone. Why did she get a matching kidney and she not be able to tolerate it. The kidney transplant failed. She did not reject the kidney. As bad as all that was, not rejecting is good because that will affect the future less than if it did reject. So I guess that has to be the silver lining. Fast forward to today I will state the future is brighter in many ways and yes we are quite thankful that this past failure I am telling you about was not a rejection. A medical professional could explain it better but basically you have antibodies in your system and so will the donor. They have to work out or it will not be successful.

Several weeks after we were home from the hospital, we got back into our routines and we watched out family as everyone changed. Seeing your child on the verge of life and death and being completely powerless is lifechanging. That goes the same for your baby sister and that is what our kids were feeling, powerless to help their sister and afraid to hurt her when she got home.  Finally things were almost going in a good direction and I got laid off from my Job of almost 14 years. Now our family dynamics completely changed. My husband stayed home with the kids for many reasons. One was that I had a good job and with day care and such the difference of what he would bring in to what I was making was just about even for the most part. He had some specific issues that interfered with his ability to work certain jobs, although truthfully he was qualified for more than he believed in himself for. That is a story for another day. He qualified as a great Dad, up early in the morning, walk you to school or the bus stop, be back to pick you up the same with lunch or candy or  something fun more often than not. Discipline and rules were often bent to accommodate the needs of having a sister with a bunch of extra needs. I started going to dialysis regularly and my  husband started managing some apartments and we made ends meet. Not so great but well we got it done.

The truth is, although the little one has had all these health battles, you can hear our story and say wow or whatever you feel but the truth is this little girl is tough. She has been through it all you as long as she is dressed you would not know. You would not have a clue, until we told you or perhaps you noticed she is small for her age. Her brother became her hero. He would do everything for her to the point where  he would sacrifice his own fun for hers. But in a all reality he hung out with her all day, and was by her side but he was a brother, an annoying typical pick on you brother. Her sister bossed her around and yelled get out of my room just like any other sister does. So that was alway the good thing. She got treated like any other kid, but she did not of course, she had everything she could ever want that interested her at what ever age and everyone knew it. She had the entire staff at the hospital wrapped around her little fingers and she still does. They still tell stories of her many hospital stays the random things she would say and do. She is blessed to have gotten a perfect mix of the craziness of both of her parents. Mom (me) and Dad each have a crazy way about life, we beat to our own drums as people  say. She got the mix and that surely carries her with personality.

The years start passing and family members and hospital family would ask, when is she going back on the transplant list, its been 2 years, it’s been almost 4 years and we would answer , we don’t care whenever Dr. C say’s it’s time, then it will be time and not until then. We hoped and dreamed of a successful transplant for her but we just made dialysis a part of life and tried our best to live life , to the best of our ability. After about 4 years of being in dialysis the doctors decided it was time to start seeing if she has made any of the milestones they believed would make transplant successful. It took a long time and a lot of appointments to decide that it was not time. She was not ready. Success would not be a likely out come. We were ok with this. We knew at some point that would change. Another year or two past. This time when we started taking the different tests, things were starting to look better. Transplant did not seem so unlikely and it did not seem so far away.

The doctors asked me what do you think about putting her on the list. I stated that when he felt it is best then I will know time for me to feel the same way. We started to make certain goals and as we started to accomplish them we talked more and more about when she will truly be ready to be active on the list.

She needed spinal surgery and they decided would be good to have done before transplant. Less risks for infection after the transplant. We had surgery scheduled but it got cancelled. That is also another story for another day. Then we finally got the surgery scheduled again. We were looking forward to her healing from that surgery and then having those final talks about actually becoming active on the list. We scheduled the spinal surgery . Now it is about 6 years into dialysis. Everything is pretty routine for us. We got to have her spinal surgery. It had to be done in a different hospital. We wound up having to cancel the surgery and find a surgeon that would do the surgery at our hospital. This took about 6 months to accomplish, As they needed a special laser that our hospital does not have. Well they have it now and my daughter received her surgery.

During the days up to her spinal surgery my husband started having terrible headaches and vision problems. Looking back he was showing signs for much longer but of course hindsight is always 20/20. I brought him to the emergency room to find out his brain was totally swollen and bleeding. He was admitted, transferred hospitals twice. The day before her spinal surgery he had a brain biopsy. It was totally hectic having him being sick and her needing the surgery. Luckily we know some great people in the hospital and they did everything they could to help us manage this situation. The biopsy revealed he had Glioblastoma( a terminal brain cancer). We were told he would have 6 months to 2 years depending on how he responds to treatment. My daughter’s surgery went well and within a week or so they were both home.

Back to Dialysis, Started Radiation and Chemo it was a very hectic couple of months. Your family truly learns what hectic means when you have two people fighting major health issues. I tried to continue to work but it was difficult with taking them to appointments and caring for them both. He had 6 weeks of daily radiation and of course it was a 45 minute drive each way to the hospital so half the day was spent driving back and forth between their appointments.

Time was passing and the doctors really wanted to move forward with transplant proceedings. I was not ready. Emotionally there was no way for me to deal with the possibility it could all go just like the first time. Especially as our family had to face the fact that Dad’s life was coming close to an end. We did not back burner the transplant all together , we just push it away a bit. We continued to go to appointments, We made sure that we did all the tests we just did not push as far as becoming active on the list. My daughter made it to the top of the list in 2009 with her failed transplant. She was never taken off the list. She continued to accrue time and when she would eventually be placed as active she would pretty much be at the top of the list, barring obvious emergency needs of another patient.

The months passed and my husband got sicker and sicker, He went from his happy self to a person who lost their entire left side, from legs to eyes nothing worked on that side. He was a very stubborn man and refused to give up. He would do things just like before, except he would fall a lot and cause more pain for himself. Eventually he realized that he really needed our help and gave in to letting us help him. A doctor explained the disease to me and the kids this way. This is a horrible life taking disease. This disease will have its ups and downs. You will see him sleep for weeks on end and then he will have ups. He will feel ok and be able to have visits or go for a little walk outside. He explained that right after radiation you will see more ups, then time will pass and the ups will be less and less and eventually he will fall asleep one day and likely not wake back up. That as awful as this disease is that is the bonus he should simply fade away and not really know its happening. Looking back I agree. I am glad that he fell asleep and did not have to see the looks on our faces when we knew he was no more. For those last months a lot happened. That is stories for another time another topic.

My husband passed away in August of 2014. The next morning my daughter needed to be in dialysis. All the people we know that truly never understood what she went through, saw it that day the little girl lost her Dad but she could not take the day off or she would be in the same boat. Off to dialysis we went. Luckily for us our nurses there know and love our family and they helped make it not so overwhelming. They allowed us to come in a different time so we would not have to face the other patients. This was we could deal with our emotions a little more privately. Of course our dialysis family is as much family as our actual family. The next weeks were a blur. Everything routine but we were all walking around zombies. My oldest daughter turned 21 and 15 minutes after her birthday ended her Dad passed away. She did what may be typical of a 21 year old. She ran to her friends and stayed drunk for several weeks. She was unbearable to be around. Refused to deal with emotions and only wanted to think of happy things. I wanted so much to help her and reel her back in but I could not. I was broken hearted and sad. I wanted her to be my leaning post but truly she needed to branch out on her own to deal with these emotions. My son he still to this day prefers not to talk about it unless he remembers funny things. My step daughters shut down. His two daughters from before me were of course heart broken. One of them lives in the same state so she was there with us the night he passed but have not seen her since. I do talk to her from time to time but she is married to a man who never respected her Dad or us so our relationship is flawed. We do how ever love one another and we talk on the computer and such. The other one is different , she never grew up with him and their relationship had only gotten on a good path about 6 years before he passed. She was heart broken and we still talk regularly. She is a part of my world although we never have seen each other. We talk on the computer, the phone and text. We share emotions and strangely we have formed a bond, She had a bad relationship with her Mother and Father and only decided to give him a chance because she figured half of what she knew was probably a lie. I am always glad she did that as that truly made his life better. He always tried to reach out to her but it took a very long time for her to reach back. She did and they worked through it.

So now a few months pass and the doctors tell me, Time to discuss transplant. Truth is she has been on dialysis now for 7 almost 8 years and for all the health reasons it is a good time to move forward. The dialysis was started to affect her in lots of ways, bones and skin and diet and parathyroid and all kinds of issues she was having.

We started to do all the testing again to make sure everything was in order for transplant. We saw urology to see if they still recommend Urostomy after transplant, we Neurosurgery to make sure the back is ok for now, We saw Endo to make sure her hormones doing what they are supposed to. We saw the Dentist and the eye doctor and the pediatrician. We did all the recommendations…….

 

For more on our Journey to my daughter’s Kidney Transplant see part 3

A Successful Transplant….