I have been bloated more than usual for a few years now and I would determine how bloated I was when people would ask me when I was due. When that happened more than twice a day I knew I should call the Dr and see what was going on. I had numerous tests done by the good Dr's at Primary Children's Medical Center and I was given an "Abnormal, but stable" bill of health, which in my world is as good as they come. So Quintin and I packed up, sold our house and cars and took off to live in the beautiful Cairns, Australia.
We have lived here in paradise for 9 1/2 months now and absolutely love it. However, I went to see the local cardiologist and he was AMAZED at the three page diagnosis that I brought to him. He was concerned that my eyes were a bit yellow and that I was very bloated. He wanted me to see a liver specialist. I went home and laughed with my mom and sisters on Skype because we had known the Dr's here would be scared of me and want to "crack me open" as soon as they saw my medical history. I knew I didn't have the best liver, no one that has had a Fontan (a heart surgery that I had at 10 years old) and had a good liver. So I told the Dr no thank you I am fine.
This all changed for me when Quintin and I were at our local zoo (we go there almost weekly). Quintin was, of course, teaching some random person standing near him about the standard Python. He started talking to this guy more and more and found out that he was a Dr visiting from Florida. He was in town for an ADULTS WITH CONGENITAL HEART DISEASE convention. The Lord wasn't very subtle with that one. I told him that I didn't trust these Dr's here because they want me to see a liver specialist, I waited for him to laugh at these silly Dr's but he said that the Dr's may have a point and that I should probably just go to a liver specialist just to check to see if everything is still good. I didn't want to hear that.
I went to see Dr Chin (gastroenterologist -liver guy) and he was very concerned, ordered an ultrasound, a few liver function tests, adjusted my medication for my bloating and sent me on my way. I had told him that my liver was fine just 8 months ago and that it is just a Fontan thing. The adjusting of the meds worked and I have a small belly now. I would say about 5 months pregnant instead of 9 1/2 months :) So I was in a good mood, very happy that my bod was looking better.
My biggest concern at this time was that I have a small tumor in my back that is mildly irritating and I didn't know how and where I would be getting that taken out. Little did I know that the little tumor was going to be the smallest thing I had to worry about.
I saw my friend at church (who happens to be married to my cardiologist) and she said that I should get into see her hubby. She was right, I did need to check with him if my meds were at a good level.
I went in to discuss my levels and medications but I was not expecting what he told me. He had been speaking to my liver doc and they agreed that my liver was so bad that they would like me to think about a liver transplant. However, my heart is so messed up that it wouldn't be able to handle the transplant so I would need a heart transplant as well. I kept it together but I couldn't help a few tears falling.
When I left his office the rivers came out. I called Quintin to tell him the news. I didn't want to think or talk so I went to an office staff dinner. I ended up telling a couple of them, I was not able to enjoy dinner and my face hurt from the fake smile on my face. I took a couple of breaks to go cry in the toilets but I ended up staying until the end. When the first person said they needed to go home I immediately offered to walk out with them. The whole time at dinner I was looking at everyone getting drunk and talking about the frivolous things in life, complaining about the dumbest things and all the while I was thinking about my own death. It is a valuable lesson about how to treat people better because you don't know the trials and pains that they are going through in their lives.
My parents came to visit me the next morning, they flew in and I was going to wait to tell them at a better time but my mom instantly asked me how the Cardiologist appointment went. I told her and we mulled it over in our heads. We decided to not think about it much until I saw the liver specialist again in a few days to read over my latest ultrasound.
I brought him the liver test results that I had gotten in the states but I had gotten worse since then, he went over the ultrasound and said that it was worse that the one I had gotten in May of this year. He agreed with my Cardiologist, Dr. Lim. I asked what I should do and he told me that if it was his choice he would send me to a transplant Dr in Brisbane to be put on a liver (and heart) transplant list. I told him that I would be returning to the US to have the operation. He said that he can keep me stable with medications but if I start to get unstable I will have to go back before I can't travel at all.
Talking with Quintin and my parents, I have decided to wait here in Cairns for a bit to see how I go. I am currently sending all reports and info to my Dr at PCMC and my Dr that operated on me in Chicago. They will determine what will have to happen next. They have told me that they will speak to colleagues about my anatomy and see if the double transplant is even possible with my stuffed up anatomy.
It tears me up inside to think of leaving Cairns, I have made a home and friends here, not to mention that I feel great! Which is another reason that I am not 100% confident in the Dr's that are giving me this terrible news. The sea level gives me more energy and I am happy. We have made the decision to move back to the US but I will be on O2 all the time and I will be cold :( I will miss walking two blocks to the beach and going to church with these amazingly humble wonderful Aussie's
So what do I do now? I continue with my Faith in Jesus Christ, I pray my hardest and ask others to do the same. My emotions are through the roof. Yesterday I cried a lot and was scared out of my mind. Today I have been giggly and making Quintin and my Dad really upset about planning songs for my funeral. Such as, Another One Bites the Dust, I'll Build You a Rainbow and Epinene's dying song in Les Miserables. Funny right? I laughed so hard.
I'm not planning on dying but I am realistic that this is a really really risky and difficult surgery that my Dr's aren't even sure that they can or will do because I also have kidney and lung problems. I will just be relying on the amazing Dr's that have recently saved my friend Paul with a heart transplant that went miraculously well and of course my loving and wonderful Heavenly Father that I know loves me and does not want me to be in this much turmoil. I love Him and I am so grateful to Him for my awesome life and my sweet and loving husband.
Now to all of you reading this, I am asking for your prayers. This will be the hardest thing that I will ever have to do and my love for my family, friends and church will strengthen me.
Oh by the way, when I come back to the US I won't have any insurance at all, no insurance company will touch me with a 10 foot pole and even if Quintin gets insurance with employment it will take a year to get pre-existing conditions covered. So...... I never thought I would say this but I am really praying that Obama's health plan goes through or I will be trying to come up with over a million dollars really quickly.
Love you all
MORE TO COME......
18 comments:
Holly, What can I say other than I know the Lord has a plan in all things. You will definitely be in our prayers and on our minds. I know the trials we face are for our benefit but also for the growth of those around us. You're giving your family a doozy! I love your attitude and know, no matter how big the bills or how far you travel, things are in Heavenly Fathers hands and that he loves you very much. We love your family and we know they love you. Good luck.
Holly, my thoughts and prayers are with you. I watched you as we grew up with amazement as you overcome so many things that most of us take for granted. When we were 10 I didn't understand what a Fontan was or what you were gong through. Holy cow - you really are amazing and so very courageous. Holly, I wish there was something I could do to help, if there is, please ask.
Holly, Joe has been following your blog for awhile and telling me about the stuff you write. This morn he woke me up w tears in his eyes from reading your blog. I know we are far away and are not really part of your life, but you are in our thoughts and prayers! I have been sending emails today to races that I've run to see if they will sponsor you. Hope that's ok!?!? Who knows if I'll hear back, but it's all I could think of for now. You must be super amazing to take on that kind of challenge!!! love, melis (joe's wife :)
Holly, so sorry to hear of all that is happening to you! We are praying for your strength so you may be able to get through all of this! I love your sense of humor and your genuine, loving personality! Stay strong, have faith and know your Heavenly Father knows and loves you just as we do!
Hey Holly, it's your cousin Joey's wife Angela. I just wanted to let you know that I truly admire you for the positive outlook you have on the trials you are facing and have had to face in life. We are praying for you and know that Heavenly Father will take good care of you. We love you and hope to see you in the states soon.
Good luck Holly! Our prayers are with you guys!
Love,
Dave, Becky, and Mia
Holly, as always, you will be in our prayers. I love you sista...time to start raising some $$ for the I Love Holly Fund...hmmmm. Time to put my thinkin cap on!
Kacey and Steve
Please let us know when you get home and are open to talking. We love you guys and if there is anything we can do to ease your burdens let us know. bearable!
The Lord is in complete charge of our lives. We are submissive to His will. He will stretch our souls and I know He will take excellent care of you guys...
Talk soon,
Paul & Lynnette Cardall
Holly,
Thanks for the courage to share this with us. You are so much braver than any of us. You are a great example to all of us. We have such silly "problems" compared to what you have to deal with. We are praying for you. We spent the day with Lisa yesterday and she told us a lot of this. You could see the worry in her face. You have such a good family that loves you so much. Keep up the great attitude and we will all hope for the best. We love you.
Kyle and Michelle.
Holly, we love and support you. We are praying!--Greg and Julie Cook
Holly, I just wanted to tell you how mush that I look up to you. First of all It was me that brought you way down here to Australia, and away from your great parents and family and friends that you have for support. I never thought that we would make it here. I remember praying and telling the Lord that I am worried about Holly and her Health, I do not want to have her come to Australia and to leave her home and family. I spoke to him, telling him that It does not matter if we get to Australia or not, and that I only want what is best for you. I said I will put my trust in you and go on faith, and what ever will happen is what You would have us to do.
I remember getting a letter from the Australian Immigration office stating that they will need more health records sent to them due to your complex health records. I though well we have like 2 weeks before it will be to late to go because the visa would not let us on the plain.
Well to make this story short we made it, and there is a reason why you are hear in Cairns. I do not know the answers to why? but what I do know is that we made it.
Holly You are my Rock, and with out you I would not be in this Tropical Rainforest with you doing my studies, because of you I am the man that I am today. I love you so much Holly, I want you to know that I will be praying for you and asking for what we need to do, and for what is best for you. I will then leave it in his hands and go on faith and remain strong and diligent and submissive to his will. I do not want to go against the plan that he may have for you and I.
Thank you Pumpkin for always making me laugh and for being such a fighter, and for that great attitude that you have for life and the people around you. You are my Angel, you are my friend, you are my BFF, and always will be. Keep smiling :)
Hi Punkin! I finally read the blog (sorry I'm so bad at that these days). You totally made me cry. I know we always joke around - even about things that are not a laughing matter. But I just want you to know that I love you and I'm praying for you. I know Heavenly Father has a plan for us - even in situations that seem unbearable. You're one of the most amazing people I know! I'll totally help Kacey with the "I love Holly Fund"!
Oh Holly, You have my prayers.
Miss Holly Hot Cakes..
Wow, dear friend. Thank you for sharing. You can have full confidence that your friends are shooting those prayers straight to heaven for you.
This thing called mortality sure is tough sometimes.. and to think we shouted for joy at the thought!
I want the best for you dear heart. You are such a beam of joy to those around you.. and I know that God will hold you tightly as you bear whatever lies ahead.
Love ya Sista!
Lindsy
Holly, this is so crazy that you should write all of this right now.... with Paul getting his transplant I think it has just sparked some thoughts about you. I have been thinking about you daily or even more than daily lately. I have beeen wondering but not daring to ask what is going on. Something inside of me has been preparingme to hear this info. I have been worried about you and I will be praying for you. Holly, I don't know what more to say but that I love you and although it sucks to leave Australia, I am glad you're coming home. I do love you so and my heart is aching for you (because it can and it is strong for you).
Love meish
holly, i'm so glad that i found your blog. i'm your cousin, one of many of course, but a cousin nonetheless. holly, i love you. i love your strength, your courage, and your faith. i cried during this post since i had no idea of your circumstances (other than your amazingly cool living conditions). and then when i read your husbands comment i cried again. today my grandma died. i feel somewhat closer to the spirit in a wierd way. i know that Heavenly Father watches over us and loves us. i know he cares, about it all. i will pray for you, for sure. and i look forward to more updates on your blog. know that you have family who loves you. we'll be thinking of you.
Hey Holly-I should have known better than to read this at work! Now I'm sitting in my office crying and laughing. You know you have always been such a huge example of strength and courage. Keep fighting and I'll keep praying for you!
Love ya,
Terri
So I don't even know if you remember me, but I am Billy Johnson's wife, Ginny. I just wanted to tell you that from the minute I met you, I felt like you were a really special person. Because I was pretty shy (and over the top in lala-love-land at the time,) I never got to know you very well. But in reading your blog, that Billy directed me to, I know my first impression of you was right on. You are a sweet, funny, spiritual girl who will be in our prayers that your path will continue to be guided by the Lord and that your amazing spirit of faith and optimism will continue.
Love and best wishes, Ginny Johnsonand family
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