I have saved this blog until after Christmas........
Man do I have a long story to tell. I choose to condense the whole story while still giving you all of the important info.
In November I started to get full of liquid in my abdomen...again.
I have been gaining and losing weight for the past couple of years, it became so frequent that I wouldn't really realize how big I was until people started to ask me when I was due. When I heard that I would call my Dr. So I went to visit a Liver disease Dr. because I have both heart and liver failure. The team there put me on major diuretics that made me lose the fluid. I then had a rough week and forgot to get my labs. I had my labs the next week and I got a phone call from my liver Dr. Starting out with her asking me "How do you feel?" that's never a good thing. I told her that I could taste ammonia and wasn't very clear in the head, I was confused more than usual (imagine that haha). She said she would call me back and when she did she suggested that I come into the ER to get my ammonia lowered.
I apparently had had so many diuretics that I had acute renal failure (kidney failure that could be reversed). I was less confused the next day and I was set free the next day in time for Thanksgiving.
I was backed way off of the diuretics and on new meds that would help my kidneys. I did well for a couple of weeks, weighing the lowest I'd ever been in five or so years I fit into my "skinny" clothes. I was too confident I guess. More diuretics were lowered and I started gaining fluid back into my belly. It was majorly frustrating to either compromise my liver and kidneys by taking diuretics or looking 9 months prego and feeling more and more uncomfortable and breathless. I called my liver Dr's to schedule a paracentisis, which is when they drain you with a needle. In the middle of that day I received a call from my cardiologist which is kinda a big deal because I usually just talk to the nurse. She asked me if I wanted to be aggressive with this problem. I thought she meant to get me in hospital and give me meds that will clear my confusion or to get the weight off of me, so I said yes. She told me that I would come into ICU and start an IV med and that side effects may include ventilation. I told her no I will not be ventilated.
My mom and my sister Shelly were in the room and when they heard the word "ventilation" their mouths dropped open so I hit the speaker phone. My Dr. said that my lifespan was shortening at which my sister asked what she meant like 6 months or what? The Dr said everyone is variable but she would say one week to 6 months. My mouth dropped open and I started to giggle until it was a full on head back laughter. It sounds demented I know but I really did think it was funny. I guess that is my way of coping. I'm weird.
I went into the hospital on a regular liver clinic visit and had 2 litres of fluid drained. I then went to speak to a nurse in cardio and received a confirmation that yes what my cardiologist said was true. So I went up to the support team I had been talking with for counseling, filled out and signed my advance directive (living will) and went home to go out with friends.
Yesterday I was huge again, very uncomfy and had a hard time breathing. I went into the RTU (Rapid treatment unit) to get another paracentisis. I saw my heart failure Dr while waiting to be popped and she talked with Quintin and I about the benefits and side effects of the IV med that my Cardiologist had previously spoken of. After a prayer and weighing my options, Quintin and I decided to go ahead and start the drug and take the risk that I will feel better and my heart function would improve. The med will not prolong my life but make me feel better in the meantime. I'm in the Cardiac ICU writing right now, so far so good, no bad reactions and they will be increasing the drug even more tomorrow. It feels weird to be an adult bored sitting around in an ICU surrounded by babies and not holding them or caring for them.
Most of you will be stunned by now but I want you all to know how much I love you, and If I haven't met you than you are a friend I haven't met yet. I don't believe in strangers. Safety Dog didn't teach me squat! I'm ok, I am very aware of where I'm going and how wonderful I will feel there. I'm not saying good bye right now so chin up! Im still in this fight and plan on being in until I'm called out of the ring.
LOVE YOU ALL!!
HOLLY
25 comments:
holly, seriously, everyone can learn from you on how to have an amazing attitude. I really don't think i know any one with a better attitude.So glad Kaylie and I were able to come up today and visit you. you are such a great aunt and we have a lot to learn from your example. love you.
Holly! I have only met you once or twice but know parts of your family well :) We share the same birthday and Shelly is always reminding me of that. This may sound weird but I think it's exciting that you are finishing this test here on this earth. You've done it! You've passed and soon it's time for you to move on to the next. I heard a talk recently that reminded me that when we were in the pre-mortal life, we weren't afraid of dying... we knew how wonderful life was there. We were anxious about being born! It sounds so silly because we don't remember that life at all but it brings me great comfort knowing that this earthly experience is so short. I know you are being prepared well by your family and that nothing I can say will really make any difference but I'm excited for you (if not a bit envious). My dad passed suddenly this summer and it has changed my perspective on what we are doing here and where we are going after we're through. It's amazing and I wish you all the best. We'll miss your sparky self- You're an inspiration to many!
Sincerely,
Angie Peters
You're an amazing woman and truly an inspiration. I don't know what else to say.
Hollz, Can I call you Hollz? I'm gonna call you Hollz 'cause I feel like we are friends. I think we have only officially met a couple of times, but Mel has shared a lot of your neighbor adventures over the years.
I am amazed at your grace and courage. You truly are an inspiration and a light, a sweet reminder of what is important. Sometimes I really need that, thank you.
Give Mel a squeeze for me the next time you see her and then have her give you one back!
Holly,
I was just introduced to you on my Facebook page where Paul Cardall is one of my friends. He shared your Blog link.
I too have CHF and just celebrated 10 years since diagnosis. When I was diagnosed, they gave me ten years, so I feel really blessed.
I also become blotted and take diuretics by need only. If I take everyday, my potassium drains and then my legs ache.
Awhile back they did bloodwork AFTER I made a list of all my meds and found their side affects on the Net. I then said, I am having this, this and this... Bloodwork told the story that my kidneys were a mess! Dr. dc'ed some and kept others. I feel much better, and if I behave myself, I do so much better. Holiday season is hard. My veins are probably pure sugar and I have blood work next week. I am also Type II Diabetic.
I recently came down with a Uniary Tract Infection. I have NEVER had one before! Traced down new med, Januvia, can have that side affect. It was not on the list that came with med. I found it on Net. Now I am drnking cranberry juice and flushing with water, which is a culprit with CHF.
Doctors don't like us researching stuff on Net! lol! Oh Well...
Take care! Blessings to you and yours!
Love and hugs,
Paula <3
Many prayers and hugs coming your way! Thanks for sharing with all of us. You are an amazing woman!!
I hope I'm not so far away that my hugs and love and prayers can't reach you! I would tell you to respond to this latest challenge by living your life to the fullest -- except that I know that's precisely what you're already going to do.
I give thanks to Heavenly Father often for your life. I'm sure this seems silly, but, I truly believe that my children would not have had the life they have without you and others coming before, the pioneers of CHD! The boys and I are praying for continued peace and strength for you and especially for your family! Love you guys!!! Hoping the meds work and help you feel better.
Hey Hollz,
Goodness Girl, you are a champ!! Jen and I are planning on visiting you as soon as I can get rid of my cold. I can't wait to see you, hang in there and I hope this new drug helps, love you!!
Holly,
I just got your blog address from Brooke Weston. This is Missy Smith, from the old neighborhood. I am so sorry to hear what you are going through. You have always been an amazing woman and I truly look up to you. I hope the rest of your time here on earth will be all that you expected it to be. My family will be praying for you and your family to have peace at this time. Send my love to your family.
Holly..you are so amazing! You are so strong and truly inspiring. My girls have read a few of your posts, and have asked about you. I've told them about all the crazy stories from our college years and that you were one of my brides maids. The thing I love most about you is your bubbly personality. You are one of the funniest people I know, and no matter what life brings you always know how to laugh. Holly..I love you and you are in my prayers!! Betsy
Love you....you beautiful, hilarious, strong as nails, amazing, graceful girl. Thanks to a Heavenly Father that put you in our lives and allowed us to know you and all that you are. We always felt such a special connection with you. Your example is far reaching and you are a forever friend that has an influence on lives in ways you will never know. Lots of prayers and hugs to you up there in the hospital. We will be by to visit (hopefully in a few days) as soon as Paul gets over this awful bug he has. It's killing him that we are not able to visit sooner! Update your blog more if you are up to it. We are all anxious to hear how you are feeling each day and we always get a good laugh from your great sense of humor too!!! All our love to you, Quintin, and your sweet family.
We'll talk soon...
Holly,
Michelle and Kyle Graf are my niece and nephew also (on the Graf side) :)
I saw her post about you on her blog today. I am sitting here with ice on my back from a lower back inury from last evening. Tried to go to work today but ended up coming home early because the pain was too much. Being home doesn't take away the pain...but at least I feel like I am trying to rest better here. I am so glad I found your blog. You are an inspiration. I am so sorry about your health problems. You make me feel like I can handle my little back injury so much better. You have an amazing attitude. I think you are an awesome example. I have been reading a couple new books the past several days (that I got as christmas gifts from my mom). They are: "What the scriptures teach us about adversity" and, "It's good to be alive". I am learning a lot about adversity and how our attitudes should be while going through them. You are already there. I love your attitude. I'll keep you in my prayers.
Holly, you are such an amazing woman. I know your body may be feeling pretty weak right now, but your spirit is so strong and beautiful! I wish I could tell you in person that I love you so much! Hopefully David and I can make a visit up there soon.
Holly. Love Ya. You're amazing. If I ever run into Sawyer I'll give him a slap on the rear from you. Promise. Thank you for being a friend. Cue The Golden Girls theme song.
You are such an amazing, amazing example and friend. I am so lucky to know you and to have happy memories of you and mostly to call you friend. You make me feel guilty for sitting here bawling my eyes out at work! I think you are grace personified. I look forward to seeing you again, no matter where it is. Love you!!
Forever in my prayers, my friend...we just haven't met yet.
Holly, I am so happy you have come into my life thru MIchelle! I have loved every time you have been in my home or we have been at the same event together. You have a light and spirit about you that is truly brilliant! You have touched so many lifes and will continue to do so. What a legacy of love, laughter and light you left with all you have come in contact with, and it will continue on thru the eternities! We are praying for you and your family. We hope for more family associations and times to feel the warmth of your goodness!
You are amazing! Hugs from Vernal.
Bethany referred me to your blog, and I'm so glad I came. I'm so sorry to hear of your troubles, but your positive outlook is truly inspiring. I wish you the very best in this journey of yours. I look forward to getting to know you better.
Hi Holly,
I hope you know how much you are loved. The messages I read on facebook and on this blog (which I only recenly discovered) are a partial reflection of the love and admiration that so many people, including me, have for you and for your husband. I'm very glad that our paths crossed. You were such a bright spot in the 3rd ward. You and Melanie added a great spark to the ward. It was tough to say good bye when you and Quinton packed up to go down under. Heidi is out of town, but I know she feels the same. My thoughts and prayers are with you.
With love, Bishop Mike
PS to Quintin - sorry I misspelled your name in my earlier post. I hope you are doing ok. I really appreciated the times we could talk when you lived in the third ward. You're a great guy and you picked a great girl to be your wife.
Love ya,
Mike (aka Bishop Mike)
Hey sweet friend,
You continue to be in all our prayers. Even the cute Activity Days girls are praying for you, they love you so much. You made them feel so special when we came during the holidays. As for me, you mean the world to me. You've brought joy into my life in so many ways. The Bishop spoke of you today in Sacrament Meeting with tears rolling down his cheeks. Many were deeply touched because of how precious you have become to us. There are so many things I love about you. My thoughts and prayers are with you.
Love you to the moon and back,
Kathy T.
You don't know me. I found your blog from Paul and my heart goes out to you. I am a widow of 4 years. My husband died of an heart attack from heart failure. I read you blog and my heart just breaks for you and you husband. The things you are going through and the fight that you are living just for one, two, fifty more days with your loved one. Keep pushing. Each memory will comfort your family when your on the other side. Know that you have people thinking of you and praying for you family even though you don't know us personally. If I can do anything or be of any help along the way please email me. I might not have the answer but I can just hold a hand while you cry or need comfort. May God's love be around about you and may you have peace in your home. Terri moserte@uvu.edu please email me if I can do anything. Sometime someone you don't know can be an answer you need.
You walked along the edge of the beach,hand in hand you were in love for the first time. How drems came true for you both, how your life changed in that instant. Now quintin awakes wishing you were there, but knowing the day he will meet you Again and walk hand in hand along that beach, wll be sweet memories until then.
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