This is a very informational link for ICU delirium: http://www.icudelirium.org/patients.html
I was basically a perfect storm waiting to happen.
Severe Pain? Check.
Severe Illness? Check.
A crapload of medicines? Check.
Infections? Check.
What lie, lurking, unbeknownst to us was that my recent fall at Byerly's caused a concussion and a brain bleed on top of the head. The Emergency Department had done a CT Scan of my facial bones to make sure there were no fractures; however, a slight bleed on the top of my head was slowly causing pressure increases and a traumatic brain injury.
When I checked in for treatment of pneumonia, there was also a drop in my sodium in my blood: I've been warned that low sodium causes hallucinations; Yes. It most certainly does.
The hallucinations that ensued went something like this: First. I was the victim of a super organized murder for $$$$. I knew that having me in the mix made this plot wildly complicated and guaranteed to succeed. So, after about 7 hours in, I knew it was a success and I "knew" I must be dead. It was a logical conclusion.
However, I couldn't die! I tried and tried and everytime I stopped breathing, my body struggled to start breathing again. My conclusion: They taught us how to live, but no one ever taught us how to die! Makes perfect sense to me.
So I spent 5 days "knowing I was dead" but unable to die.
I was suspicious of everyone and nothing was as it was supposed to be. They never scanned my bracelet; in fact, I didn't have a hospital bracelet. I never got any meds. I never got any food or liquid. I must be dead!
Finally, day 6 of delirium, the fog started to clear. Joe spoke with me and I slowly came around; slowly started figuring out what was going on.
It took about 2 days of clearing the fog and figuring things out, but it started happening.
Now, I am about 95% of my mental capacity and I need to work on physical strength. To that end, I do OT/PT through out the day. I am waiting to do another bone marrow biopsy. They wanted to do it on Friday, but I convinced them that it might be wise, given my recent experiences, to wait, that will get rescheduled for next week. Hopefully, I'll be released from ICU this weekend.
Please enjoy the video link below. One of the best ballads ever. Love Willie Nelson. Love Patsy Cline.
I apologize for my recent absence; I will try to give a brief synopsis. I came into the hospital with severe pneumonia. A few days of being and a couple days of potent drugs, and I was well into icu delirium. A massive scary hallucination ensued with the strangers of Rochester trying to murder me. When I started 'coming around', I thought for days that I was truly dead but didn't know how to die.
I'm working to get stronger, so I'm leaving the story there.
It was time for a visit to the PH clinic. Dr. P. was heading to Italy for some Heart Transplant boondoggle so I needed to rearrange my schedule to get in to see him.
He told me that they had turned down a pair of lungs that matched to me. While that is slightly disheartening, it is also a good thing – that means the process is working – I am at the top of the list for my blood-type. And it is also good to know that they are being very careful about the used parts that they will be putting inside me. There are any number of risk factors that would cause them to turn down a pair of lungs: Drug use, Alcohol abuse, any kind of substance abuse, smoking, even indiscriminate sexual activity is a risk factor that that will cause lungs, or any organs, to be turned away by the transplant team. I find it good to know that they are taking a great deal of care in choosing parts for my body. We really only get one shot at this to get it right.
In the meantime, it is Dr. P.'s job to keep me in as good as shape as possible until the transplant occurs. To that end he has ordered 4 units of Iron Infusions – I sometimes don't absorb iron from my food which leads to Iron deficient anemia (different from low hemoglobin anemia). That coupled with the amount of blood I lost during my recent accident of falling on my face, makes me very tired. I really don't like spending my days sleeping and then sleeping all night, too. Each infusion takes about an hour to complete, but, if I can get those done next week, I should feel a bit more peppy.
Also on the books: The anti-rejection drug that I am taking can cause a nasty, nasty, fungus infection in my lungs. Not a good thing to happen when you are waiting for a transplant. To combat that, I have to sit in a negative airflow room and breathe this nasty smelling drug for an hour. I'd rather breathe the nasty stuff than try to fight a fungus infection.
Lastly. Come back to clinic next week. I'll be seeing the new nurse practitioner on the team, Rhonda. They keep a tight rein on me just to make sure I'm behaving.
If you haven't figured out yet, this is my place where I can be brutally honest. You will hear nothing but the God's honest truth here. This is my place where I can be vulnerable, yet safe, where I can say those things that I, for whatever reason cannot utter out loud to another person. If you are one of those people who are uncomfortable when I tell the full story, you probably should not be reading this blog. I'm not going to change it up so that you are in your comfort zone - that's not the purpose of this blog.
This blog is to raise awareness of what it is like for me to live and fight pulmonary hypertension. Not all patients are as sick as I am, not all of my phriends are in the same place, but we do share each other's stories and revel in our victories and cry with the defeat that each passing phriend represents.
Back when I first 'got sick,' back in October 2011, a friend of mine asked me how I was at the start of the meeting. He knew a bit about my trials, but not the truth, and the automatic reply started coming out of my mouth: "Oh. I'm doing great." And I stopped and that little voice inside my head so "Who are you trying to fool? Your mother (and best friend) had just died and your dad died six months after her and now you have been dealt this diagnoses of a fatal disease that had maybe 2 years to live? And you are going to tell Eric you are doing great?" Well at that moment, I adopted the catch phrase that would be my stock answer: "I'm doing the best I can."
No one wants to listen to your litany of ailments on a daily basis – I never would have got any work done.
So many times what I heard, is "You look great!" It's true, I don't look sick, if I'm not wearing my 02, you'd hardly know there was anything wrong with me. I structured my days so people wouldn't notice my weaknesses: I never walked with anyone anywhere – I would meet them at a meeting, anything to avoid the obvious: I didn't have the energy to walk more than two blocks.
Even today, with all I've been through, I don't look sick. I temporarily look like I've gone a round with Mike Tyson, but still, I look great. I'm the first one to admit it. And yet, when at lunch today when my friend asked me really how I was feeling; how I was doing, I struggle with the words. I don't feel as good as I look. I feel like I'm dying, truth be told. Every minute of every day is a struggle. A struggle to appear normal. A struggle to make it look like everything is okay. And some days, that alone wears me out. I feel like if something doesn't happen in 3 - 6 months, I won't be here to reap the rewards. And I really don't know how to say that out loud. It scares me. It makes me feel vulnerable. And I don't think I would ever be able to admit it to another soul.
I love to cook. I guess it's one of my hobbies, and most nights, I'm cooking dinner for Joe and myself. It's not always a gourmet meal, but I think I do okay in the kitchen. I had a problem though. In planning for the week, I would ask Joe what he would like to eat for dinner in the coming week. His answer was always the same: "Whatever you feel like eating." That's where the problem came in, I didn't feel like eating anything.
Remodulin leaves a funny taste in my mouth: almost a metallic-like taste. Everything I eat tastes 'off.' Nothing tastes as good as I remember it and some of my all time favorites, now turn my stomach to even think of eating them. After months of not eating much, I can't eat much... I try to save the room I have in my stomach for high nutrition items -- not salads and such that Joe should and would prefer to be eating. So planning meals became a real burden every week.
Until. I found this great service -- for me, it was a great service. It was just what I needed and when I needed it. It's called HelloFresh.com and I had a $40 off coupon – how could I go wrong? I decided to go ahead and sign up and give it a try.
They send me 3 meals for 2 people every week. I choose three out of the five offered, so I can have what we like to eat. They send me just enough groceries to prepare that meal – everything is included except for staples like oil, salt and pepper. I need 2 cloves of garlic? I get a little bag with 2 peeled cloves of garlic. It is wonderful. Every week is a new group of recipes with no repeats so far. Everything I've cooked has been great! Not one meal wasted. I even received some shipments while I was in the hospital and I thought they would go to waste, but I put the meat in the freezer and kept the staples in the refrigerator – some of the herbs did not last the 2 weeks, however, every meal from those shipments were used and were great!
This week's meals are: Chicken Saltimbocca with Spinach and Cherry Tomatoes; Pan-seared Salmon with Honeydew-Cucumber Salsa & Watercress Salad; and BBQ-Rubbed Pork Chops with Spicy Plum Relish & Cilantro-Lime Forbidden Rice. Are you hungry yet? Every Wednesday, I choose my meals and every Friday, I receive the fresh ingredients to make 3 meals. The meals are quick and easy: 30 minutes to prepare. The portion sizes are very generous and I usually have some side dishes left over and Joe has never left the table still hungry. If I want to put a hold on my deliveries because I will be in the hospital for a transplant? I block off those delivery weeks and I don't have to worry about them.
I'm not trying to do a commercial for these guys, but if anyone is in a similar position or just needs to change up meal times a bit -- this is a great service to try. They also have meals for 4 people.
I apologize for this commercial interruption. We will now return to our regular blogging momentarily.
For many years, etched in my mother's careful crewel stitchery, that saying hung above her organ. "Life is Fragile. Handle with Prayer." When she died, I gave it to my favorite cousin for safekeeping – it seemed appropriate. But the events of the last few weeks, have brought that message home to me.
The latest in a string of events that have had me carried off by lights and sirens to my home away from home at UMMC: I tripped over the curb going into the my local grocery store (I still love you Byerly's on France), I remember the weight and the momentum of my Oxygen Concentrator slung over my shoulder pushing me and driving me into the pavement. I landed on the left side of my face and I have a fair-sized gash over my left eye and a small gash underneath it: I blame my now broken and useless glasses for the injury and it seems like it was all a perfect storm just waiting to happen. I lost a lot of blood, ended up with about 25 stitches and I look like I went a round with Mike Tyson. Actually, I look a lot like the character Sloth from the movie "Goonies." "Hey, You Gu-yahs!" Alex and I tried to watch Goonies on Netflix last night, but I remembered they recently removed it from their viewing library. Darn.
So God. I get it. Life is fragile. Life is fleeting. I will handle all with prayer. I don't know why I've been chosen and singled out to continue my life with this life-giving transplant, but I will do all in my power to make sure that someone's ultimate sacrifice is not wasted.
It's official.
Insurance approval has come through, the Blue Cross lady made sure I knew that technically they had 10 days to review and approve and just for me, they were turning it around in one day. Thank you BCBS, just think of all the money I've given you over the years. I'm finally getting my payback. As expected, I am high on the list and the list is short. I have very few antibodies that will interfere with organ matching, so I am really believing this will happen quickly. I have my phone with me at all times, fully-charged. My hospital Go bag has been reloaded. I am very ready to view this life event in my rear-view mirror.
TeamVikki Villagers
Thank you to my friend Sara Foster for coining the term - the volunteers for helping me recover from transplant will be known as TeamVikki Villagers. I have had the pleasure of knowing such wonderfully giving and creative people and Sara is just one of many of them. Another giving friend, Sue Herman, is being my trusted co-ordinator for the Villagers, if you've volunteered, I'll be giving your contact info and suggested duties to her. Not only am I learning to ask for help, I'm learning to let go and not be in control of everything. I could do it, but I don't need to. Sue will be doing some sort of contact when the time comes to learn when you can help and what you can help with. I plan on having a celebration for all the Villagers and would-be Villagers when the 3 months is over: It could be an end of summer blast. How exciting!
1Kings 3:5-15 5 In Gibeon the Lord appeared to Solomon in a dream by night: and God said, Ask what I shall give thee. 6 And Solomon said, Thou hast shewed unto thy servant David my father great mercy, according as he walked before thee in truth, and in righteousness, and in uprightness of heart with thee; and thou hast kept for him this great kindness, that thou hast given him a son to sit on his throne, as it is this day. 7 And now, O Lord my God, thou hast made thy servant king instead of David my father: and I am but a little child: I know not how to go out or come in. 8 And thy servant is in the midst of thy people which thou hast chosen, a great people, that cannot be numbered nor counted for multitude. 9 Give therefore thy servant an understanding heart to judge thy people, that I may discern between good and bad: for who is able to judge this thy so great a people? 10 And the speech pleased the Lord, that Solomon had asked this thing. 11 And God said unto him, Because thou hast asked this thing, and hast not asked for thyself long life; neither hast asked riches for thyself, nor hast asked the life of thine enemies; but hast asked for thyself understanding to discern judgment; 12 Behold, I have done according to thy words: lo, I have given thee a wise and an understanding heart; so that there was none like thee before thee, neither after thee shall any arise like unto thee. 13 And I have also given thee that which thou hast not asked, both riches, and honour: so that there shall not be any among the kings like unto thee all thy days. 14 And if thou wilt walk in my ways, to keep my statutes and my commandments, as thy father David did walk, then I will lengthen thy days. 15 And Solomon awoke; and, behold, it was a dream. And he came to Jerusalem, and stood before the ark of the covenant of the Lord, and offered up burnt offerings, and offered peace offerings, and made a feast to all his servants.
I'm not being overly dramatic when I say Dr. P saved my life. When I came to him in April of 2012, I was a walking dead woman. My cardiac output was practically nil. Walking up a flight of stairs or taking the dogs outside left me struggling for breath and I often had syncopal events. I was giving away belongings, that had I know I would be alive today, I never would have parted with.
When I first saw Dr. P. and the rest of my team (Emily and Alethea), they spent two hours talking with me. In addition to other information, they told me how dangerous the syncopal events were and that were I to have another one, I should call 9-1-1 and get straight to the UMMC emergency room. This didn't make sense to me; I had told my pulmonologist about the syncopal events and she didn't seem to think they were serious; therefore, I didn't think they were serious.
So on that morning in April, when Joe was out of town and Alex was staying with me. I'm not sure how I got myself together every morning to get to work, but I could still do that. And. I had two syncopal events; I came to each time lying back on the bed, with Sydney licking my face. I had to take my 11-year-old Rosie to Canine Coach for her last day of training and get myself to the office!
I did successfully negotiate the traffic to Canine Coach and parked outside my office at the U. I spent the morning doing work and didn't have time to even think until lunchtime. I felt guilty for not following Dr. P.'s instructions. So, I did, what I thought was the next best thing: I called into the office and admitted that I had two syncopal events that morning and was now at my desk feeling guilty. Alethea listened patiently and then said: "You need to be seen in the Emergency Department and probably be admitted immediately." And I'm thinking I'm fine. You are being silly. I was the one being silly, for my response to Alethea was: "Okay. Is it ok if I drive myself to the Emergency Department? It's only 5 blocks away." She was speechless, at which point, I said: "Nevermind. I never asked you that question and I don't expect an answer." And then I hobbled out to my car and drove myself to UMMC Emergency Room.
Joe was on his way home; due in around 10pm. They admitted me and moved me to a room on 6C; by the time Joe arrived, I was pretty much 'out of it.' He stayed for a bit and left saying he'd be back early in the morning. The next day things started happening. And it's funny, I don't ever remember being given a choice, although I'm sure I must have signed consent papers somewhere along the way. Before I knew it, I was in interventional radiology getting a PICC line in my right arm. I had no idea what that was for, but they also took me to the cath lab and inserted a Swan-Getz line in my neck: Next stop ICU. The Swan-Getz catheter measured my pressures to see how I was responding to something called Flolan. My hemodynamics responded positively, so that was my new therapy of choice: IV Flolan. Except, really, I don't remember ever being given any other option.
Flolan is horrible. Not only does it have the twenty minute half-life, it has to be cooled at all times, even while it is being pumped into your PICC line. The side effects are horrific. To say I had a headache, would be an understatement. I had a constant headache that morphine didn't even touch. The Swan-Getz line was removed after 2 days and I was released back to 6C, I spent the next two days, curled up like a ball in bed and in total misery. Every fiber of my body ached. The jawpain and headaches were intolerable; finally, after several days of agony, they switched me to Remodulin. Remodulin gives the tolerance of a much longer half-life, and it isn't as strong, so the side effects, while still many, are not as severe.
I learned how to mix my medicine over the next week: What supplies I needed. How to mix. How to get all the air bubbles out of my syringes and cassettes. And was sent home with a big box of my monthly supplies and some vials of Remodulin. Still, I wasn't ever given a choice: Dr. P. said this is for the rest of your life. And I wasn't unhappy. He had saved my life. Had brought me back from the brink of death. And for this, I will forever love the famously bow-tied Dr. P. I'm glad he didn't give me a choice: because I don't think I would have chosen IV therapy.
Retraction: I'm sorry I insulted Joe by denigrating his cooking abilities. He made me a very fine cup of Chicken Noodle Soup for dinner and I very much appreciated it.
