Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts

Monday, March 20, 2017

When life gets hard

Hey everyone ( those that are even still around and didnt give  up on me), i cant believe its been over a month since my last post.  These last few weeks , life has been really hard.  There's always good to mix with it but combined its just been a lot! My mom flew in from Montana on February 16 to stay the month with us. During her long stay, she normally is passed around and stays with other family members  to visit. My grandma ( Nanny) went into the hospital on Saturday morning the 18th and has been there ever since. It began being just routine stay at hospital due to inflammation and swelling in her leg.  Nanny has diabetes and has a bad leg wound that wont heal. Its something we monitor very closely and its no big deal to go for a week once or twice a year to have IV's of antibiotic flow through for the infection and then have a wound nurse treat her leg when shes home.  She went in for that but then other things were found while having tests that werent good.  Things have been very touch and go and there was a few tense days and nights that we weren't sure she was going to make it through the night.   Having Mom here during all this has been a blessing because we've been driving to east Texas every weekend to see Nanny in the hospital and i know it would be even harder if Mom was still in Montana.  Its also been very emotional because for the first few weeks we were told that Nanny would be released so the plan was for Mom to go stay the week with her and take care of her but of course that never happened. Nanny continued to get worse and even had to be transported by ambulance to another hospital that was better equipped to take care of things such as dialysis that the other previous hospital didnt have.  She was in and out in daze and didnt recognize anyone or know why she was there. It was so hard to see her that way. She was swollen and in pain and it was heartbreaking. They got her started on dialysis and it made huge improvements! Nanny is now awake and can talk and recognizes everyone.  She just needs her kidneys to function.  We dont know whats next. Either she will be released to go home and have home healthcare assist and she will continue to get dialysis in nearby town a few times a week  or she may have to go straight to an assisted living center.
Mom has chronic Lupus as i think most of yall are aware of.  Stress makes lupus flare up and she's had some painful Lupus breakouts on her face, in her nose, on her head, etc.  She barely weighs 100 pounds and its been very hard to see Mom break down for fear of losing Nanny.  Emotions have been very high.  She also has very weak immune system due to Lupus which means its not good for her to hang out night and day at a hospital with all the other germs.  She feels bad that she cant be there everyday like her brother ( my uncle).  We 're doing what we can though because the hospital she's in is 3 hours away one way.  A lot of time in the car and that also wears Mom out.
The last 3 weeks i was also in a huge point of my job where i was training classes every day monday thru Friday for 4 hours a day.  That was 2 weeks straight.  There's been a lot of pressure and its still regarding our merge conversion so these people are just not happy at all to switch new systems that i'm training.  I finally was able to take one day off last week so that i could spend the day with Mom and i drove her to the hospital.   We have still managed to do some things that are fun and not stay completely in the house or go to hospital. We've had some visits with my friends that are also friends with Mom.  Mom and i went to see The Shack last Sunday and we've eaten out a lot. Todd has been traveling quite a bit too.
I also have a very very special dear friend that was diagnosed positively with prostrate cancer last week. Dr's said its not growing aggressively but its at medium speed. He goes in for consultation in a few weeks to determine which treatments he'll be doing , etc.   Makes me sad and scared but i know they can beat this since its been found early on.
I know i have also mentioned a few times about my friends grandson in Boston. Ari was on a heart transplant list and was also getting worse every week. Just before Christmas, the Dr's said that Ari couldnt go home until he leaves with a new heart.  By Gods Grace he got his transplant a few weeks ago too.  Just found out today that his little body is rejecting it. THEN their home has black mold and they have to completely demolish the home and rebuild and insurance isnt paying a dime. My poor friends are really dealt with some hard things right now.
I have missed blogging. Usually when i get so super stressed, i blog because it helps and its an emotional outlet. I literally didnt have time or the energy to post until today.  I feel like Debbie Downer and Doom and Gloom but i cant help it.   I am also so thankful and blessed to what i Do have and things going right.
I have missed my blogging friends and i hope 6 weeks dont go by again unless its something wonderful.  Oh and this Friday i am having gallbladder surgery. I've been in lots of pain and looking forward to hoping it eases up.
Life is hard but we just have to keep plugging along and take advantage of all windows of opportunity to do what you can .
Mom and i were in traffic and not even moving for 12 minutes so we took selfie
This is the day that Mom arrived
Quick selfie of brother and me with Mom
Had dinner with inlaws one night

Took Mom for yummy BBQ and fried okra
Lunch with friend Wendy and mom after church
My cousin Monya and myself with our sweet Nanny
Mom and Nanny
When the kids came we got into hot tub later that evening. So fun!

Wednesday, April 22, 2015

T is for Transplant


I want to talk about transplants today.  As in donating an organ and saving a life. Specifically My fathers life. This is our story.   Pull up a chair, this may be my longest post I’ve ever written.  Almost 2 years ago in July, my dad underwent a double lung transplant.  When he was first diagnosed with his rare lung disease, I was devastated and that’s  exactly when I began this blog.  I needed an outlet. I felt so lost because I was so scared I was going to lose him.  The disease progressed quickly and he was soon in a wheelchair , on high amounts of oxygen.  Dad traveled to Santa Domingo 3 times to try the stem cell option.   Stem cell treatment is not 100% legal in the US and is only used right now in the US if you have cancer.  It seemed to be working and we were so optimistic.  Then we waited for this specific process that took a long time to get just right and when that day finally came and Dad traveled out of the country to get the treatment, it didn’t work.

That’s when I saw the light go out of Dad.

Dad had been dealing with a team of doctors at one hospital in Dallas that will remain nameless. They  told Dad that he did not fit the criteria to be a candidate for the donor list.  These are tough words to hear when you’re in early 60’s.  So basically Dad gave up knowing that there was nothing else that could be done for him. I struggled and became very angry. I questioned my faith. I cried until I thought I surely would go dry of tears.  Daddy was declining by the week and all he could was get up and sit in his lazy-boy and either watch TV or play games on his ipad.   He started slowly getting rid of his prize possessions.  Dad played guitar and had an amazing collection.  I noticed those were disappearing.  Then he mentioned he was selling the Harley.  That’s when I woke up like someone slapped me and realized what he was doing. I was so torn- I thought he was giving up.  What else could he do though? Without any hesitation I told Daddy that I would be buying the Harley!!   God is good! You see, just a few months before Dad mentioned his bike, Todd sold his.  We were starting to combine households and prepare for the wedding , and financially it was a good decision because of his payments.  It didn’t take long for Todd to get antsy and regret his decision and it was funny because I kept telling him to “hold on, there will be a bike for us soon”.   Of course I never would have imagined it would be my own Dad’s!

My cousin Dusty happened to do some volunteer work at another hospital in Dallas called UT Southwestern. It’s a teaching hospital and that makes all the difference in the world! Literally.  So its kind of crazy how it all started but Dusty was in line in cafeteria and struck up conversation about Daddy. She figured what could she lose by asking?  That person said to go talk to another person and that then of course that person put her in touch with a lady who listened and called Dad the very next day.  I cant make this up.  She called on a Wednesday and by Friday he had appointment to go meet her and other staff members.  He “failed” their test so to speak but not without another chance. They gave him a list of things for him to work on such as walking more around the house, using the treadmill, etc.  He needed to build up more stamina than he had.   Remember , Dad had given up by now and so he was not trying to improve his stamina and I don’t think he thought he could.   Two weeks later, he went back and passed their criteria. He officially became eligible to go on the donor transplant list.  Now the wait began.   It was a joyous celebration and I saw a light flicker in Daddy’s eyes again.  Hope . That’s all he needed was hope again. 

So we waited and waited.  A few months later after being on the list  we got “THE CALL”.   Dad and my stepmom Deb rushed to the hospital and all the many preparations began.  The process takes hours to prepare before the actual surgery begins.  We also had to wait on the lungs that were being Careflighted in.  So they took Daddy back and intubated him and he was prepped to go.  When it was all said and done- the donor lungs were a NO-GO.  They found the slightest pocket of fluid on one of them and the Dr’s voted no transplant.  Now, in meantime Dad was unconscious and to make a very very longer story short, Dad died on the table.  The surgeons of course saved him within seconds but it now opened a whole new can of worms .

The false transplant process really did a number on Daddy. He was so weak and he had to stay on tubes for days.  The doctors needed  to basically start over on the game plan and the next set of actions for a transplant.  It was the hardest thing to tell Dad when he woke up the next day – that he DID NOT have new lungs.   He was in ICU , hooked up to all these machines and to know that he had to continue struggling with his bad lungs.   Oh my , this is so hard to type out right now. I’m crying again.   It was determined that when and if the next match comes up, it had to be perfect and no more false starts again.  He wouldn’t make it.

The good news is that through all that, the factors that had to be matched up got changed. Example:  the first donor had to be of a certain height and the lungs a certain size- that changed to different criteria.  Nothing can be easy with Daddy ( or me for that matter).  Daddy had a heart surgery 5 years ago. The unnamed hospital I mentioned above totally botched some parts.  They didn’t patch him up correctly and caused some internal scar tissue.  Its little things like that that can cause a lot of heart ache down the road for the surgeons.  The surgeons actually had to come up a whole new plan and approach that had never been done before.  Being with this teaching hospital was so amazing. The doctors are old and seasoned and wise and young and new and innovative!

Fast forward another few months, Daddy never left the hospital after the “false alarm transplant” and was getting more weak by the week.  Deb and I were taking shifts – she the daytime and evenings were mine.  Todd would come up often too and we took turns staying the night with him.  It all became very scary because Daddy got very anxious and didn’t want to be alone. He used to never be like that but we didn’t want him stressing out because it was too exhausting for him.  By now, he couldn’t even eat solid foods because it took too much energy to chew.  Can you imagine that?  I had been so lucky with my job because I wasn’t traveling much at all which allowed me to be at hospital every night.  BUT, my luck ran out. I was being sent to train a large class in Jacksonville, Florida soon for the whole week.  It was the week before I had to travel and I kept telling Daddy that we better get “the call” that day or the day after or one day that week. I said it would be my luck that the one week I’m gone, he would get the transplant.  It was one night that I cant get out of my head. Todd joined me at the hospital that evening and Daddy told both of us that if there wasn’t a match soon, he wanted to go home.   He was tired of living at the hospital for the last several weeks.

I understood but I couldn’t accept it. I stepped out of the room and broke down.  Todd told me to not be angry and that Daddy lived a good life and that he was tired of fighting.  At this time, Daddy’s quality of life was just above zero.  He was on the highest level of oxygen and he could still barely talk, breathe or move.

It was a Friday night in July and I was going home first to have dinner with Todd before I headed to the hospital.  I never did that but it seemed like it was ages since I had really seen much of Todd since I was at hospital every night.  What I haven’t mentioned yet was that we were also supposed to be planning our wedding and had set a date for August 31 of that year.  We bumped the date up so that I could have both parents at my wedding.  Originally we wanted to wait another year for financial reasons.  Todd understood the urgency and so he didn’t hesitate when I asked if we could marry sooner.  It was looking as if that date would still be too late.  So back to the Friday night… I got home and my phone rang and it was Deb.  She called me every day on her way home to give me update on Dad’s day and I called her every night on way home with updates on his evening, nurses, etc.   I was in the other room from my phone and Todd said your phone is ringing. I said oh its just Deb calling me with the lowdown of Dad’s day.  Hahaha!  I called Deb back within minutes and it was the best call ever.  TONIGHTS THE NIGHT! WE ARE GETTING NEW LUNGS!!!
The surgery wasn't going to happen until much later that night. Deb was going home to grab a few things and Todd and I still went to dinner. We all met up at the hospital around 8pm and they took him back around 9. I was able to kiss him and tell him that i'd see him in the morning with new lungs. My Aunt Brenda who is dad's oldest sister came too and we were in a private waiting room.
The surgery took almost 7 hours and it started a little before midnight.  A horrible thing was that there was another family in the waiting room with us and their person didn't make it.  It was gut wrenching and it added to the stress and emotions we were going through.  We played cards and talked and cried and prayed and they all tried to nap but I couldn't.  The nurses would call every hour or so to give us an update and then they said the surgeon would come out when it was over.
Around 6:30 am the surgeon came out to talk to us.  The good news is that Daddy had new lungs. The bad news is he was bleeding to death and the surgeons couldn't stop it.  They said they did everything they could do and that it was up to him and God to pull through.  I was so upset. My stepmom Deb was a rock! She calmly said then we got this because GOD didn't bring us this far not to make it now. Sure enough 24 hours later, they were closing his chest up and taking out the tubes.  I was able to visit him Saturday and Sunday and then I had to go out of town for work.  The hardest part was behind us and I was OK to leave for 5 days.  Then the best part is that 6 weeks later- a very thin, fragile Daddy with a mask and his walker- walked me down the aisle and gave me away at my wedding. 
There was so much more that happened during his recovery like a blood clot that went to his heart and he died again on the floor which they promptly resuscitated him again.  Great crazy stuff like that but I will save that for another post. Ordinarily, I would break up a post like this 3 different days but it also felt good to get it all out one long post. Thanks for those who hung in to the end. 
I am so blessed to have Dad not too far away who is alive and well!!
Please consider being an organ donor.  It just takes a second at the DMV to check the option.  Transplants are life changing and saved my Dad.  Oh and in the south, we always say Daddy no matter how old we are!!
 

Monday, June 16, 2014

I have DadS.......

So its Monday already. How did we let that happen so fast? With Fathers’ Day being yesterday, I thought I would say a little something about my Dad’s. First of all I have my main Daddy-O, King Daddy, Dad (Mark) whose name is on my birth certificate. Daddy is the one that underwent a DOUBLE LUNG TRANSPLANT last year and is doing great. To start from the beginning, lets just say that I was a Total OOPS baby! My parents were 17 and 18 and their senior year of high school when they found out Mom was pregnant with me. Nine months later, my mom had turned 18 during the pregnancy and Dad was 19. They actually didn’t get married until I was almost born. This was during the late 60’s. They did their best while only being kids themselves but they divorced when I was 4. My mom was very laid back hippie-chick and basically told Daddy that she wasn’t going to make him pay child support since he didn’t have a solid job back then. She knew that my grandparents would help her out in raising me which is what happened. The divorce arrangement was that Mom would take care of me and all things the first part of my life, Daddy only had to pay for braces and a car when I got my license and help out once I got into college. My parents are not the best of friends but they can also be cordial to each other for weddings , funerals, etc. Everyone gets along and that’s all I can ask for. We were supposed to have dinner last night but Daddy wasn’t feeling good and I told him to stay home and in bed and we will try next weekend. 

 When I was 13 my mom married my stepdad Don. He was the most amazing patient loving step father anyone could ask for. Don truly loves me as his own and treated me as such while I was in high school and college. He currently lives in Oklahoma to be near my brother and they are the tightest father/son duo you will ever see. Right now my sweet stepdad is suffering with some very serious health issues. Don wasn’t even able to make my wedding and I know we would have NEVER missed it if it wasn’t serious. I love him so much and I have been so blessed to have him in my life. One of my most fondest memories was when we would push the furniture back on Friday nights, and we would pick out songs we wanted to hear from his huge selection of albums, and then we would dance around the house. I loved watching him dance with Mom and then he would teach me the Texas 2-step, waltz, cotton eyed joe, etc. ALL of which are mandatory if you’re a country girl here in Texas. 


 I cant not mention my grandpa Poppy! I mention him a lot and its because he was so influential and instrumental in my life. Poppy wasn’t supposed to have favorites when you have grandchildren but it was no secret, I was his partner in crime. I went everywhere with him and I grew up feeling loved and special and that I had someone in my court at all times. He always stood up for me and bragged about me to his friends every chance he could. His friends would say “where’s your passenger” when I didn’t come along on the Harley the rare times I couldn’t go with him. I cry every Fathers’ Day from missing him so much. 

I love it that I now can say I have a Father n law. I absolutely adore my inlaws and I get along so well with both of them. My father n law Bob , is so funny and has the best sense of humor. Yesterday after church, we met them for lunch and my brother n law joined us. Bob is a great listener and looks me in the eye when we talk. I can see where my husband gets his wit from. 
 I’m so very Blessed to have a few Dad’s who love me and contributed to who I am today. Have a great day y’all!!!