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
Third is great news for Q and I. We rented a basement apartment and it is wonderful! We have 2700 sq feet for a reasonable price. We even have a movie room and a backyard. YAY!! We found this place after given the word that I couldn't have a transplant. We were staying with my parents until we heard the word. Small problem, Q still hasn't found a job and worse yet, we are in Lindon. Yes that is right, we are in cougar town. The first thing we did was to go out and buy a U of U sticker to put on our car because we just had to represent!
