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Thursday, December 18, 2014

New treatment plan, Doxy and Metrinidazole

After suffering for years and years with different types of treatment plans my doctor and I stumbled across a new one that works really well for me. I'm taking Doxy at a smaller dose to not upset my stomach, and Metrinidazole which treats other forms of bacteria such as coinfections. With this combination I'm feeling a decrease in almost all of my symptoms.
Completely unrelated, my heart symptoms of palpitations, fast heart rate, dizziness, etc. became worse for the first time in months. I went through a Holter monitor test, another Echocardiagram, and a physical to try and diagnose the source. After finding nothing, it was decided that my Bartonella has now moved into my heart and is running wild creating symptoms that can't be caught on film with no rhyme or reason to them. I feel the aching pain in my heart, my sternum, and my collarbones still. Sometimes I run my hand down my sternum and feel the permanent ridges protruding from a bone that was one sawed in half. I feel the claviculae joint pop and crunch as my collarbones shift around. I even feel a knot at the top of my sternal incision scar that still had bit faded yet and remains a bright red bump. I perform scar therapy on all of my scars by massaging them and applying a silicone liquid that's supposed to soothe them away. Most of my scars are already disappearing, fading away into small white lines. I know the knot will subside too in time. My mother's research says maybe 2 years, but it will one day be barely visible. I see actors on my favorite shows with faint white lines down there middle of their chest and feel so much more relatable to them, like we have so much in common. Maybe one day even my significant other would be able to understand what I've been through from first hand experience, though I do not wish for that.
These battle scars will be reminders of where I came from but mostly what I can overcome as I push myself to future goals. I pray that my Lyme symptoms stay under wraps as I take the next journey forward in my life. I know stress can make it come back full force once again, and I know exercise and diet may be keys to successful future treatments.
Tonight I remember where I was at the beginning of the year, when I signed up for my first gym membership and how I thought the year would go. I never knew it would have turned into this, and I haven't returned to the gym because of my pain and undiagnosed continuous heart symptoms, but I remember where I was so I know how far I've come and what is left for me to still experience.

Friday, October 10, 2014

Been a Long Time Since I Posted

It has been a long time since I have updated everyone. Basically my life had spun out of control and I needed to get a hold on things. Here is where I'm at, bear with me as my scatter-brain leads you up until the current events in my life. The Zio patch test came back fine, which is a good sign. I stopped the blood pressure medication and attended the gym on my own to restrengthen my cardiac stamina. I stopped the cardiac rehab with the heart monitors and was relieved to go back to a more normal lifestyle. My Lyme symptoms all got increasingly worse. My regimen of Clindamycin, Omnicef, and Tindamax did not do anything for me as I got increasingly worse. I just recently visited my LLMD who put me on a regimen of Paxil for the anxiety (finally working with no worsened side effects), Amoxy, Doxy (good because the sun sensitivity won't be overpowering in the fall and winter seasons), and Flagyll. These medications are supposed to attack the cystic form of Lyme, Bartonella, and Babesia. I also still take probiotics, Nystatin, Axid, and Zyrtec. I visited my hematologist who said my second Lupus Anticoagulant tests came back negative, so I have an unnamed clotting disposition that could be a problem worsened by the Lyme. It will keep me from ever getting IV medication again, or ever taking hormonal birth control. I go in for the Paraguard IUD, because it's non-hormonal, next week. Also I will stay on daily baby Aspirin to keep clotting instances from happening.

My symptoms currently include the worst fatigue I've ever felt, tendonitis, overall pain mainly in the torso area and lower back, headaches which I just got glasses to assist with, ear problems, nausea, dizzyness, fainting spells, joint inflammation, brain fog, memory loss, confusion, narcoleptic episodes, loss of concentration, anxiety/depression, and lack of appetite, Those are the major symptoms not including the occasional episode of night sweats, sleep insomnia, or muscle spasms. I can say that starting the new medications two weeks ago have already shown they are keeping symptoms from getting worse. The pain has subsided a small bit, while tendonitis worsened. I am hopeful they will work to keep me from my usual winter seasonal decline in symptoms. Currently I have been too tired to think about going to the gym. I fall asleep in classes or while driving, and go to bed as soon as I get home. I long for naps during the day, and have no motivation to move from the couch or bed, I sleep 10-14 hours a night but still want nothing more than to sleep. It's hard to hold a social life when you feel dead by nine, can't stay away to drive home, and feel like taking a nap instead of eating dinner. In fact I choose not to eat when it means walking to get the food, and instead doze off in my seat. This is a new profound exhaustion then I have experienced before. I know I need to gain cardiac stamina but just find it too hard to think about a walk or exercise. I feel distanced from many people and have to choose whether I socialize or do homework. In fact, most of the time I skip my homework and try to leave early from my new part time job because even though I'm smiling, I'm dying inside. My anxiety wake me up first thing in the morning, shaking and nauseas until I get the Paroxetine in my system. I also head to bed at night fighting depression and wanting to just never wake up. Hopefully I have more positive updates soon for all my faithful readers.

Tuesday, July 22, 2014

Where I'm At Now, Zio, Hematologist, 3 months Post Op...

Lot's of people have been asking how Im doing post surgery and with the start of my Lyme treatment again. This post may be rather long but here is where I'm at now.

When I was a child, I used to play with my two older brothers in the woods behind our house. All of the neighborhood boys would gather together with their fake weapons and camouflage clothing to play war. Being the only girl, I always pressured them to let me be the nurse. I had the dream of helping people out in the medical field, and cherished my education about it throughout middle school. I took things seriously, like extra curricular activities and sports, trying to educate myself about exercise and prepare for a long life in school to become a doctor. I never knew that when I turned twelve I had one last summer of joy before my life was overtaken with medical knowledge. I did not become experienced because of my own choice to, though I would be inevitably. I was thrown into the situation of being a chronic illness sufferer and advocate for others around me fighting disability. I look back on that final summer seven years ago and remember the late night bond fires, the first girl that moved into the neighborhood and became my best pal, hiking all over New Hampshire, spending time with friends and creating goals like learning guitar and becoming involved with horses. I was active, fun loving, popular, and a thriving social butterfly. I pushed to be the best and loved reading the last of the Heartland book series. That summer was my first time on social media. My new friend created a Myspace page for me, and I remember sneaking my age to thirteen to be included in the popular crowd. Little did I know the entitling age of 18 would have been such a terrible year for me, and that I'd wish to go back to where I was not a teenager yet. Our entire lives we push to be older and stronger and prettier and more independent. When we finally get there we see that it's nothing special.

Since my last post my life has been a whirlwind. I developed serious recurring symptoms due to the six week steroid treatment I was on. Babesia was running wild in my system. For those of you who don't know, Babesia and Bartonella have been my worst problem alongside Lyme Disease for the past seven years. They are all co-infections, they come together from a tick bite and can be the worst problems in the complicated case of treating Chronic Tick-Borne Infections. My symptoms consist of memory loss, nausea and stomach pain, joint pain and muscle soreness, headaches, dizziness and fatigue, and severe anxiety and depression. My anxiety has progressed to a point where it is worse than it's ever been. I have days where I fall into an anxiety attack and begin shaking and seeing blurry, running to my room or away from people to hide and melting anti anxiety narcotics under my tongue to get the quickest effect. I have become impossible, seeing the world as doomed around me and weeping for hours on end after starting fights with my boyfriend.

I called my specialist this week begging for a change. I told them I could not handle this hell anymore, that I was not eating and suffering from stomach pain and depression like no other, and needed help. They immediately got me an appointment this Wednesday where we can talk about treatment and getting help for my depression/anxiety.

Last week, I received a letter saying my health insurance through the state was ending. I called Medicaid to ask what that was all about, because I had been told I would be covered until the age of 20 with children's medicaid due to the newly passed expanded medicaid law. This was very reassuring, but now I was being told that was incorrect information and I was being dropped off of my insurance in just a week. I do have a financial assistance program that covers all of my main doctors and some testing, but it does not cover my medications and additional doctors, like dental work. This will throw quite the wrench in my plans.

As for post surgery improvement, I am doing my last physical therapy in about two weeks. I have switched from joint and muscle work to exercises and strengthening and will be testing my range of motion and strength at my next visit. My cardiac rehab appointments have increased in difficulty and I have been getting into a good workout routine there. I also have been increasing the weights and trying really hard to get myself to a point where I can get to the gym. It's been difficult getting myself to a point where I have the strength and motivation to get out of bed and drag myself to the gym. This is a constant obstacle for me, trying to maneuver around the Lyme Disease and it's affects when I only feel decent in the evenings and then I need to get to bed so I can sleep long enough. My rib cage and sternum pain have gotten a lot better, as time has gone on. I still cannot do the motion of putting my arms forward as if to hug myself, and I'm hoping that will improve over time.

The rehabilitation center watches my heart as I exercise, and they see a lot of changes in blood pressure with medication adjustments throughout the post op experience. I visited my cardiologist a few weeks ago because of the feeling of fluid on my legs. He prescribed a diuretic which lost some of the fluid weight after taking it for three days in a row. He also was worried about the electrical rhythm of my heart during exercises so he started me on a two week Holter monitor called the Zio patch. It's a two week EKG patch that watches your heart and highlights the moments you press the button (when you feel a symptom). I won't have the results until almost August close to when I return for repeat blood work for the Lupus Anticoagulant disorder.

My hematologist appointment was uneventful and we did not learn much, other than Dr. Walsh is a very understanding physician out of the New Hampshire Oncology and Hematology Payson Cancer Center at Concord Hospital. The experience was very pleasant and the only downside was that she mentioned possibly referring me to Boston to a blood clotting specialist. She said she sees a lot of blood problems and clotting with multiple generations is not her specialty. Now we must wait until the end of August for an answer about that.

Thank you for reading this long post, and I can do a continued post on my experiences with the Health Profession Opportunity Project (HPOP), horse shows, college preparation, health insurance status, and my next treatment plan after Wednesday's appointment.

Thursday, May 29, 2014

2 Months Post Op

Two months after my Open Heart surgery I have hit the wall. I have not gotten any further donations on my fund web page (see '' post), which means my car still declines in condition and I struggle to find ways to keep it rolling. I turned 19 on Saturday which was more of a gloomy day than a celebration as I lost my NH Medicaid insurance and had no health insurance whatsoever (too poor for Obamacare). I tried to enjoy a weekend's worth of activities (see 'Boston Aquarium Trip' Post), which resulted in a return of old symptoms like muscle spasms in my neck and weakness in my legs causing them to give out altogether.

The previous Tuesday, I attended cardiac rehab and was informing the exercise specialist of the situation with my insurance when she suggested a new idea. She thought that if I was going to be working out at a gym on my own, I should first push myself while on their holter monitors to see what my heart does under that sort of pressure and if it cools down at a normal rate. She encouraged me to push myself on the stationary bike and after about eight minutes and a heart rate of 160 she encouraged me to slow down to make sure my heart rate dropped at a normal rate. It dived to a point where my blood pressure could not adjust to the rapid change and I ended up feeling dizzy on the floor. I was picked up off the floor by the director of the program who promised to make some calls and get my financial assistance application pushed to the top of the priority list. After sitting through the nutritional class and drinking a few boxed apple juices, I felt well enough to go get the blood work done that my Lyme specialist ordered a few days earlier. Ten vials were drawn along with a urine test to thoroughly check out my systems before the end of insurance coverage that weekend. I felt good enough to head out to lunch with a friend at Friendlys and then was picked up and driven to my disability determination appointment. The appointment was short and sweet and I had no idea how well or poor it had gone, as the doctor encouraged me that I would be hearing from Social Security eventually. I walked back to the car with my head down, slightly concerned that maybe I did not describe my situation well enough and maybe he had not had a full picture drawn of what my symptoms are when I'm in really rough shape. This of course all was happening before I declined that following weekend to a point where I had trouble walking and holding my head up straight after a weekend of birthday activities. I also had started a new anxiety medicine called Klonopin which was affecting me so severely that two hours after I took it I could not function until around lunch time the next day. This was resolved when I began cutting the dose in half after a few nights. I also just started biotin, for my nails and hair which is a healthy supplement for me since I do not drink regular milk and only can handle almond milk.

My total medication list when completed looks a little something like this:
~Vitamin D-3(for energy)
~CoQ10 (good for the heart)
~Magnesium (I tested deficient, great for the gut and detoxing)
~Probiotics (great even when not on Antibiotics)
~Lopressor (blood pressure and heart rate medicine)
~Aspirin (blood thinner)
~B12 (also good for energy)
~Carafate (stomach coating, helps with ulcers)
~Clonazepam (Klonopin, anti-anxiety and depression aid)
~Orthotricyclene Lo (for ovarian cysts)
~Nystatin (chronic yeast overgrowth)
and in the near future because of my worsened symptoms we will be adding treatment for Bartonella, Babesia, and neurological Lyme in the form of three antibiotics and a tincture:
~A-Bart (added to water to treat Bartonella)
I have quite the pill box to put together tonight, and it will get fairly confusing as 2 of those are refrigerated, 2 are dissolving, 2 go in water, a bunch must be taken with food while other away from each other, and one is even four times a day away from all other medicines and food. It will get crazy keeping up with it yet again, and just in time for a busy summer where I want so badly to be normal.

My chest is recovering nicely, with only some muscle soreness and collar bone pain as it pops in and out of place. I do cardiac rehab three times a week and just started working on weighted arm exercises and yoga type stretching. I also still do the stationary bike and walk the treadmill. My improvement is visible and I am doing better than a lot would at this point in their recovery, but I am declining with my Lyme symptoms thanks to the Prednisone which ended this week. It allowed the bug to run wild in my system long enough to need a tough bite back.

Tuesday, May 20, 2014

My Current Condition, 7 Weeks Post Op

After seven weeks I can truly say you wouldn't know from looking at me that I had open heart surgery. I walk straight, stretch often, drive myself to therapy where I get on the stationary bike, and I can do small tasks like vacuum and brush the horse lightly. I do not have the stamina that I will one day have after months of therapy and building myself up to where I was prior to the open heart procedure, but the scar has flattened and still fades giving me hope. Another thing improving is that I have tapered down to my final dose of Prednisone for the next week, and then I will only have two weeks left of the side effects from that medication. It caused major emotional setbacks, weight gain, and worsened Lyme and coinfection symptoms. Of course, it is difficult to tell what is a worsened Lyme symptom with the steroids and no treatment, or what is medication side effects. What I know for sure is I can't even list how many symptoms have swamped me again. The major problems I struggle with now are massive depression and anxiety (enough that even my Lyme specialist changed me from Ativan to Klonipin at my check up appointment yesterday), nausea, joint and muscle pain that can leave me unable to move, muscle spasms, light sensitivity and even blurred vision, extreme short term memory loss, hearing problems, dizziness and fatigue, and concentration loss. I feel a lot of these symptoms like I had struggled with for the last few years when the Lyme and it's coinfections were worsened. My Lyme specialist heard me out and ordered antibiotics for me to take if I end up needing them in June even though my insurance will be ending them. This makes it so that I have them before the insurance runs out, in preparation for the inevitable evil. He also ordered a slue of blood tests to rule out any other problems that we could be missing by blaming everything on Lyme for the past few years. I want to make sure there is not something that is being missed, keeping me from getting better. I feel at the end of my rope, and the stress is affecting my friendships and general outlook on life. I just wish I could curl up in a ball and disappear most of the time. Even when some things look promising, like a generous donation from a loving angel to help repair my car, I still find myself questioning why I am in such a predicament. I struggle with keeping optimistic when everything around me seems to be collapsing. What will I do if something goes wrong with my heart recovery after my insurance is gone? Why has someone like me been stomped on by the system that was made to help people like me? Why does no program have the ability to help me, and when will things start looking up? How come no medicine ever works enough to make me cured, and will I ever be cured? These questions circle my brain day in and out, and I feel as if nobody could understand the emotional pain I'm in. I find myself not wanting to talk to anybody when the end of the day comes, and I just want to hide in my bed. When the sun rises I struggle to want to move from bed to head to rehab, where I will be walking and biking and questioning how I ever enjoyed exercise. I used to feel empowered and strong trying to exercise alongside people at the gym, and encouraged to improve myself. I can't help but struggle with this depression and feel so alone and so beaten. I know I have the best support system in the world, with a man that I love, and my mother's overflowing support. I wish that could erase any negative thoughts or feelings I have, but I find myself feeling empty and distant. I want to be quiet and observant when in a public environment, instead of outgoing and involved like usual. I hope this will pass, and I go into my disability determination appointment tomorrow knowing that he will see into this pain I'm in and understand the severity of my condition.

After almost seven years of fighting illness, and being in and out of a wheelchair and even out of state for a second opinion, I still had never set up a financial fund. Asking people who were just as sick as myself, or going through an equal hard time financially for money was just never an option. I still can not be comfortable with the idea of a website where people can go to give money to my cause. I would do anything to be just well enough to work for all my own money, to make ends meet with pure determination and strength. I tried multiple times in a row to work a season at Gunstock Ski Resort, and fell in love with the environment there. I wanted nothing more than to make myself independent and gain experience in the work force that would benefit me later as I hit adulthood and searched for a full time position. I found the days I worked extremely taxing, and needed extra help in the work place as well as accommodations to special hours and shorter shifts. I tried to fight through as best as I could, smiling through the overwhelming pain and paying for it later as I lay in bed in tears. Each season ended a month or more early for me, as I reached a point where tendonitis, neurological symptoms, IV treatments, and surgeries pushed me over the edge. I just wanted to be normal, and I fought so hard to work better and faster than any other employee there. I could not however fool my body into believing I was well. This year, as my season at Gunstock wrapped up early and I went in for open heart surgery, I had no choice but to ask for help. I explored all my options with applying for state aid, even calling a local organization to get ideas for what they could do for me. Partners in Health, described in my last post, suggested I create a page. GoFundMe is a public website where a cause can be supported monetarily through anonymous (if you choose) donations that go into an account and can be withdrawn and mailed to the recipient in check form. If it wasn't for my medical insurance ending this week, and my needing more than $3,000 worth of work, with no other options left to me, I would never follow through with creating a page to beg for help. However, in certain cases someone has to be humbled to a point to ask for help, and this is what I've done. I have created the account with the same private name as my Lyme-related Facebook account, Elaina LymeTeen. If you find it on your heart to support my Cardiac Rehabilitation, much needed Lyme treatment, and car repair funding, please visit

Friday, May 2, 2014

Partners In Health

I wanted to talk a little about the different programs I have found to help out with my situation. One of the most frustrating moments was when my family and I discovered that we had not been told about local organizations that could have been helping us, after almost four years of being sick. There is a state funded program called Partners in Health that is divided up into regions. Their main goal is to help families of chronically ill and disabled youth in any way possible. When we first heard about the program, we were connected to a program director who came to sit down and meet with us and discuss the program. They were able to sign me up for the program based on my chronic diagnosis of Lyme Disease. During the meeting they talked about what I could use for help from the program, and set me up with specific goals for the year. I set goals of getting my situation settled with school, planning a better management plan for my symptoms, and finding ways to keep me active. When I got my concussion skiing and had all my ski clothes cut off of me in the ambulance, the program helped fund me to get a winter jacket. When I needed help paying the school registration for my night classes at Laconia Academy to get my diploma, and the scholarship I had did not come in yet, they fronted the cost until the program could reimburse them. When I fought with the school about a 504 plan, they came to the meeting with us to fight the battle!

Another piece of the program I got involved with was their family council. Designed for parents of the chronically ill, the family council worked to connect the families in the program and put support systems in place for them. They planned and sponsored fun activities, and addressed local problems to help the community out as much as possible. The meetings were once a month and in the middle of the day, so I went in place of my mother. My hope was to become a voice for the children and work my way towards more advocacy, as well as getting volunteer service hours. They almost helped me get a teen support group up and running called 'The Lyme Lounge'. I started it as a Google group where we connected mainly through email, but did not get a high enough response and it ended up faltering.

After a year of not doing too much with the program, I decided I needed some help and called to schedule a visit with the new program leader. She agreed that resetting my goals was a good idea now that all this heart stuff came into play, and came to my house to figure out what they could do for me. This sweet woman sat down with me for more than an hour discussing my situation and throwing ideas out for each need that I had. She mentioned being able to help me apply for state programs through the Department of Health and Human Services (DHHS), and disability. She even mentioned that they might be able to help my car get on the road again. I sent them a quote about the car, which ended up being $3,000 worth of repairs needed including regular maintenance, and she said they could only help with a small portion (possibly $300). She said if I get a second quote on just the necessities, they could try and get another local program to help fund some of the bill for the car repairs. I'm still waiting to hear about this, as I do not have any money to fix the car so I can get to appointments when I start driving again. Another option she gave me was to fund a summer recreational activity for me this summer. On a first come first serve basis they are trying to get children out and moving this summer by paying for a summer camp type activity. She expressed how they would be willing to work with my specific case, but maybe they could do four weeks of horseback riding or something along those lines. This is a cool idea, but I think I might ask them to instead help with a gym membership for the summer as it would be used more. 

There were a few programs I heard about through Partners In Health that I can talk about separately, one being called the YEAH Council. It's similar to the family council but it's for the kids to get a chance to learn to advocate for themselves and educate adults on their medical setbacks. I will be looking into this but have not tried it yet. I was recommended to create a 'GoFundMe' page, where donations can be made towards a medical fund for me, and I have that up and running now as well (see 'Elaina's Lyme Fund'). I plan to do reviews and educate as many people as possible on the different programs I have learned about to save them the distress of feeling hopeless like I have. Maybe I can help someone to a better place in their journey one day. After all, that is what advocacy is all about.

3-4 Weeks After Surgery

After my emergency room visit on Easter day, I was able to concentrate on recovery the rest of post op week three. I had a visiting nurse come out on Monday morning and check up on me. The cannulated stitch in my upper thigh from the bypass incision site was removed, and all my vitals were checked. I ran through a list of medications with her to update her on any changes. Nothing had been changed yet, as I had not started reducing the Prednisone yet. I was anxious to start getting off of it, though, because I struggled with the side effects. One minute I was doing okay, and the next I was angry or bawling my eyes out. It also made me feel like I could eat the entire sink and still be hungry, a typical steroid side effect. I started becoming concerned with the fact that I was not losing any more weight from the fluid retention, and instead the weight was staying on. I tried not to concentrate on that. Being a young female who had worked so hard on my physique before surgery, I was disappointed in the aftermath. I needed to remember that none of these factors were permanent and I would soon be able to tone my muscles back to where they were. I struggled with the first stages of atrophy and my joint pain increased throughout the week. I practiced the exercises I was assigned by the Occupational Therapist to begin the process of strengthening my upper body through a series of controlled stretches. These were inspiring as I felt myself getting a little more controlled and having increased endurance each day. I also continued a long walk each day with lots of movement in between. Beginning the process of strengthening myself and getting moving again kept me going.

Toward the end of the week the glue was working its way apart from the sternal scar. It peeled back slowly, mainly on it's own accord. I had to consciously not help it along, and wait for it to fall off naturally so that the scar could heal correctly. Once all the glue had fallen off, the scar was just a light wrinkle about four and a half inches long, barely noticeable under a necklace. This was inspiring to me, and I watched for the bruising to reduce on the rest of my body. I still have the fading hematoma on my thigh, it has not reduced yet. Also there are bruises on each elbow from IVs, and a yellowing bruise on the right side of the sternal incision. There was some bruising where the port was removed but it went away pretty fast. My body continued to heal, getting better by the day and able to do more without becoming short of breath. People who saw me could no longer tell that I had open heart surgery just three weeks before. My efforts could begin to concentrate on aligning my future plans, and finding some help with the burdens I was encountering financially (see 'Partners In Health'). By week four, I was well enough to begin my final exam essays for American History (my last high school class needed to graduate). The essays took the entire week, but by the time they were done I was so relieved I could have cried. I also did a lot of paperwork for state programs and tried to concentrate on deciding which issues in my life were more pressing than others. When there is so much going on at one time, that is when I begin to list. I had this pointed out to me by my incredibly intellectual boyfriend. He noticed that with my anxiety, I list all the possible negatives, the what ifs, and the oh-nos of anything currently overwhelming my life. Worrying about things does not get you anywhere, so when he notices me doing this he cuts me off and makes me recenter on the current situation. I do the same thing to help me stay organized as well though. I write out long lists and make notes as I accomplish things, and when enough of the list has been accomplished I make another list. It's cool to feel accomplished when you check items off of the list.

On week four I was taken off of the Cardiocom system that checked my vitals daily because I was doing so well and feeling stabilized. My Occupational Therapist came to my house and went on a walk with me for the final time, discharging me for good. I ventured out and about more often, for some short shopping trips and visiting friends, and did not feel as worn out by the movement. I began to feel more comfortable lifting a gallon of milk and pulling my car door closed as my muscles healed. I even picked up a cheap oximeter at Wal-Mart to measure my pulse through exercise and my oxygen levels if I need to. I improved my upper body exercises, and felt inspired to improve my walks with some uphill slopes. All these things fell into place, and I knew by the time I saw the surgeon for a check-up in another week I would be improved enough to be released to do more activity.

Tuesday, April 29, 2014

Easter Sunday in the ER

Easter Sunday is always a huge event for my family. We are a Baptist family that convenes every Easter for a large meal and time to reconnect with each other. It's a loving event where miracles are celebrated and people come together to recognize the power of faith. I enjoyed the day, though I had to leave after a few hours from fatigue and pain. I was recovering well from the heart surgery and pericardial effusion, but still this was the biggest outing I had so far. It was exhausting to talk, I would get short of breath walking across the room, and I knew I needed rest. My boyfriend escorted me to his car after I changed into comfier clothes and helped me into the passenger side. We had agreed he would take me home early from the reunion, so I could get a nap in. After I got home I noticed my raised heart rate and felt pressure when I lay down flat. I was struggling for a deep breath and felt familiar pain in my upper stomach and mid back. All these symptoms were eerily familiar to the week previous when I struggled from the pericardial effusion and had to return to Dartmouth. I did not want to go back to Lakes Region General Hospital's ER, especially not on Easter Sunday, but Robbie pushed me to get checked out 'just to be sure' and I begrudgingly climbed back into the car after much deliberation. The emergency room staff recognized my face and came quickly to my aid. They checked my vitals and saw the Tachycardia and high blood pressure. I was wheeled to a bedside where they immediately began the battery of heart tests including an EKG, Echo cardiogram, chest X-Ray, and blood tests. An IV was placed in my left arm, and I saw the doctor within minutes. It appeared that everything was normal, nothing out of place and the heart had only a minor amount of fluid on it, so it was not the severe effusion like my previous visit. They decided pretty quickly that I must have overdone myself with the events of the day and needed rest. My heart rate dropped to a steady 100 bpm and they monitored me for an hour before deciding to discharge me. My mother who had shown up as soon as she heard I was returning to the hospital and found her way from the empty ER waiting room to my bedside, decided to head home. She took off to catch some Zs while me and my man held hands, waiting for discharge paperwork. After an extended period of time the polite female doctor returned around the corner. She saw my IV already out and had a serious look on her face. "If there is any possibility of you having a clotting disorder and you are not on blood thinners other than Aspirin, I am concerned about sending you home without first doing a CT Scan for Pulmonary Embolism" she described. I agreed to stay, better safe than sorry, and another IV had to be placed in my right arm. This time the testing took longer as we waited for someone to come in to perform the procedure, and then waited for the results. In a CT Scan, the radiologist directs the bed into a tube which takes pictures of the fluids in the body and can see things like the lung tissues better than an X-Ray would. It doesn't take long, but Iodine based dye is injected through IV to help the scan pick up on any possible problems. The feeling you get as the dye runs through you is that as if you wet yourself, a warm overwhelming wave from your shoulders that radiates to your legs before disappearing. When the test was all over they wheeled me back to the ER exam room and I waited. I could hear the other patients being pushed to and from, the two across the hall coughing up a lung, and the one next to me recounting his story of the car crash. Eventually I was discharged with no explanation to the symptoms and told to keep an eye on them closely and call my surgeon with any new, worsening, or persistent symptoms. I ventured into the cool dark of the parking lot and felt relieved that this time I was not being rolled into the back of the helicopter for my departure from this building. Crawling into my bed that night was what I needed most, and remembering to pace myself in the days ahead as well.

My First Few 'Portless' Days

As soon as I escaped from the hospital that Friday, after my port was removed, I was ready for a nice hot shower. I had to wait 48 hours, but I was ready. After 14 months of the port being in, having to attempt to keep it dry, try not to sweat too much with it accessed, tape it up for each shower, and avoid repetitive motions, I was ready to live a 'port free' summer. I left the hospital in pain, having only spent a few hours at the Ambulatory Care Center for the procedure. My collarbone ached from the tube being pulled from around it, and the topical anesthetic began to wear off throughout the day. That entire weekend my right collar bone and upper chest ached from my body readjusting to the empty space and trauma inflicted on it. I prepared Saturday for Easter by going shopping with my mother. I wanted to get hair dye, because I tried going red before surgery as an act of teenage experimentation but I hated it and had been waiting to try and dye it back. I still could not stand or walk long without getting out of breath so I had to take breaks to walk the few feet into CVS and look through the color options. That night, after 36 hours, I decided to color my hair with my mother's help. The shower was the best I have had yet, though painful. The color toned down the red, frustratingly enough not fixing the problem completely. It was good enough to be decent for Easter pictures and I opted to color it again the next weekend to try again. Sunday morning came and my shoulder area was at the peak of it's soreness. I was well enough to take pain medicine and pull a dress on over my head. After makeup and hair were in place I was ready to head to the family Easter dinner and do some family pictures. 

Cousin portrait for Easter.

That weekend was a great time for me, realizing that the upcoming summer would be a good one. I realized that upon full recovery I would be able to shower without the tape, and jump in the pool to cool down. I would be able to have an even tan, not stay home every Monday morning for visiting nurse appointments, and start upper body exercise. I would be able to forget worries about germs and infections, not have to be on IV medicine treatments twice a day, and not have to avoid pressure from strapless dresses and backpacks on my right shoulder. The summer would be that of freedom, of healing, of hope, and of adventure. I only pray that it will be everything I dream of, fulfilling it's true potential as the summer I turned 19, survived open heart surgery, and was completely IV free. 

Port Removal Procedure

The week I came home from the second hospital visit, I spent Friday in the hospital again. We were all anxious to remove the port, after we found out it possibly was the cause to all my heart problems. My Lyme specialist must have discussed it with the head of Dartmouth Pathology, because he supported immediate removal of the port. I wanted it gone, my thought behind that being it was coming out in a month anyways and I might as well have a recovery from the procedure while I'm already in recovery from other procedures. That same week I had an appointment booked for the port removal procedure, so I prepared a ride to Concord Hospital and ventured out early Friday morning to place myself under scalpel again.

Rolling myself onto the bed in a familiar hospital gown, I waited for the nurse to decide where to place my IV. I had tried to tell her where the best place would be, but she tried her own idea anyways resulting in a failed attempt. The next attempt was done by the IV team that was called in. I smiled as the IV nurse looked my arms up and down, landing the exact spot I suggested a half hour before. Once the IV was in, a few papers were signed and I was eventually rolled in to a familiar looking well lit room. I got to meet a few nurses and had a familiar face to my left (the nurse who preregistered me and prepped me for the procedure). Then the interventional radiologist performing the procedure came in. He asked about medicines that worked for me and I ran through a brief collection of history with the port placement procedure's bleeding problems, and my lack of response to sedatives and Lidocaine. I requested no sedatives, for they made me so sick previously I would just spend hours throwing up. I also told them they needed to use Sensorcaine because it works better for me. Sensorcaine, specially ordered from the pharmacy, is a special local anesthetic that takes longer to kick in but lasts hours. That combined with Lidocaine Epinephrine (used to constrict the blood vessels and reduce bleeding) was a fairly decent combination during the procedure.

After numbing the area and while I was wide awake, the cutting began. Without even a shield between my face and the pocket opened in my chest, I watched the shiny silver tools twist and turn and cut around the purple box inside to dislodge it. My body had grown around it to a point where a fifteen minute procedure took an hour, the clamps slipping from the small box and my tissues holding on for dear life to the foreign object. Eventually the catheter had to be broken from the port box, and it was removed first with a smooth pull and some pressure. A nurse held my neck for a few minutes to apply the necessary pressure, and the radiologist showed me the tip of the white tube as he squeezed an inch long blood clot from the tip of it. "I wouldn't doubt the possibility of you having a clotting disorder of some sort after seeing the way the vessels encompassed the port and this clot" He said.

Still there was more tugging as he tried to free the port from my chest, yanking and pushing on my dainty frame. All I could think was, 'Hello, I'm right here! Be gentle with me!' as I felt the clamp slip from my right side again. at some point the decision was made to cut me open a little bit more for more work area. I grimaced as the blade created more of a scar, imagining summer on it's way. I had told the radiologist before the procedure that I was known to hypertrophically scar, and asked him if he could work that knowledge into my already present scar. He tried his best, closing me up with dissolving stitches under the skin, and glue and tape above the top layer of skin. It's a small scar, about an inch and a half long, and after two weeks it is still raised and red with steristrips helping hold it together. I watch the small white strips of tape weaken with each shower, waiting for them to fall off on their own so I can apply scar treatments and soften the scar before it gets burnt this summer.

Overall the procedure was yet again a traumatizing experience. I was wide awake, in pain, could not take any pain medicine, and felt like I had to stick up for myself with the doctors. I spoke up with my knowledge of my own body, bringing everyone up to date on my recent heart surgery and complications, pushing for a potassium blood test that they would not run, and looking out for myself. The strength it takes to look at a doctor and tell them how to do their job as only an eighteen year old girl, is indescribable. I have had to learn to advocate for myself more than any other time in my life, in the past month. All the struggles have led to one big picture of someone who is inspired to use my knowledge and experiences to advocate for others.

Thursday, April 24, 2014

Home Sweet Home, This Time To Stay

I took in a deep breathe of felines and family as daycare children circled my living room the day I returned home. I had my 'therapy cat', Pippin, at my feet and my parents and some kids carrying on around me and I decided it was not that bad to be home. I spent six days in the hospital the second visit, and most of them were sunny and beautiful as a New Hampshire spring blossomed in mid April, stealing the last of the snow from the leaf littered forest floor. This day however, was a rainy, cold, unpleasant Tuesday. It reminded me that paradise is what you make of it. I wished I had enjoyed the great weather on the first days of true spring throughout the previous weekend, but there would be more to come. In fact, more than sunlight I couldn't wait to just feel my soft sheets around me. I missed the ability to lay in my own bed each night, uninterrupted and sleeping peacefully on my side. The side part would not be happening for awhile, as laying on my side felt as if my breastbone would crush at any given moment. I relearned sleeping on my back with pillows encasing me and blankets tucked under my chin. It was not the most ideal but it beat being awakened every morning at four for blood work, six for vitals, seven for rounds, eight for tests, and so on and so forth. I could sleep as late as I wanted, and roll out of my waist high mattress to help myself to pain medicine and snacks. 

Two of my cats taking over my bed the first night I was home.

The program set up for my arrival home was perfect for keeping a close eye on my improvement. The day after discharge I was visited by a visiting nurse who would see me weekly for at least three weeks. She checks my vitals, listens to my heart and lungs, oversees my Prednisone taper and other medications, answers questions, checks scars for signs of infections, and can run blood tests if needed. She also set me up with a Cardiocom system that alarms each morning at nine to check my entire condition, and then sends the results by phone line to the office for review. It starts with a series of questions answered yes or no, like 'Have you been taking your medicines?' and 'Have you eaten a salty meal today?' which keeps me in check. It then measures oxidation, blood pressure, pulse, and weight. I can recheck any of these things at any time of day without completing the full health check and sending the results in to the office. If I feel worse symptoms at any time I can pull up a chair and make sure my vitals are in a safe place before worrying over the possibility of pericardial effusion recurring. 

Along with the VNA, I have a visit weekly from an occupational therapist who is making sure I am not pushing myself too much before I am ready, and that I am doing exercises to stretch my upper body and building up my walking at a safe pace to improve my cardiac conditioning. I did not previously think I would be eligible for Cardiac Rehabilitation so she decided to be a short term stand in, and help guide me at home. We decided on a target heart rate zone, a comfortable 14 exercises to perform for warm ups before a walk, and I was released after week one to start a half mile walk twice daily. The day after I was released to start building my cardiac endurance with walks, I received a call from Concord Hospital Cardiac Rehabilitation to set up an appointment with a therapist for a consultation. Apparently Medicaid would end up covering my unique diagnosis for the rehab program, and hopefully I could find a way to continue the program after the consultation that was booked a month out. The rehab would not only teach classes about diet and exercise and heart function, but also attach heart monitors to watch while exercise is started and make sure a healthy level of conditioning is reached and slowly increased. It gives a great guide to ease a post op patient back into an independent workout regime without pushing the heart to unhealthy levels. I have a way of overdoing things and not taking things slowly, so a guideline to follow and someone to encourage me will help me have accountability as I begin to return to the gym and work my way up to where I was before. 

Settling back into my own medication schedule was another challenge I faced upon my return. I now take Prednisone 40 mg daily (every morning), Metoprolol 50 mg twice daily, Aspirin 81 mg daily, Ibuprofen 800 mg every 6 hours, Tylenol 1000 mg every 6 hours, Axid (antacid) daily, allergy medicine daily, and any additional as needed medications for nausea and sleep. I have, over the course of the week, tried to reduce my Ibuprofen to 600 mg (better on the stomach) and Tylenol to evenings only. I haven't needed to take Zofran for nausea, or Ativan for anxiety at all. I've also been religious about my heart related medications, on a 9 am and 9 pm schedule, which has helped. It's been a huge relief not worrying about antibiotic treatments, and being able to stop the antifungals because of that. My body is still adjusting to all the changes and I haven't decided through the side effects of the steroids how I'm doing yet with the tick born infections. 

The Friday after I came home I was quickly swept in for the Port removal procedure (see 'Port Removal'). Aside from that day, I spent the days adjusting to home life concentrating on appointments, logistics of arranging appointments and paperwork for state financial assistance, trying to appreciate good showers (the hospital revoked that right for a week when the chest tube was in), trying to get myself mobile and reconnected to family and friends by route of social networking, napping and eating myself into a sugar coma, and waiting for a miraculous recovery to occur. The miraculous recovery did start coming in slow doses, as each day I woke up feeling a little bit stronger, a little more awake, a little more at ease with movement, and a lot more inspired. I started getting out and about more, which was a relief from being home every day in a daycare listening to screaming babies that aren't even related to me. I had visits from a few friends, and even was able to dress up for Easter Sunday and spend time with my family. To an untrained eye that had never previously met me, I appeared completely healthy. I could wear more typical clothing, walk around in public for short bits, carry on conversations until they left me winded, and the scar was barely noticeable. Overall my improvements were in leaps and bounds, and by week three after surgery I was energetic and carrying a purse, even going out for dinner dates, ready to take on the world. 
Easter Sunday with my man

Tuesday, April 22, 2014

PSYCH! Not Going Home Yet

After a few days of nurses watching me and typical hospital stay experiences I was led to believe I could head home Saturday. The requirements were that my pain be under control, and my heart be draining less than 50 ml of fluid in a 24 hour period. The drain appeared to completely stop draining after Thursday, and my pain was doing better than ever with the discomfort in my stomach, shoulder blades, and chest relieved for the first times since the surgery. However, Saturday morning when I was awakened at four by a heavy man wanting to steal my blood, I recognized very familiar pain. He took the blood as I sat in a fatigued stupor, and upon him leaving I struggled with shortness of breath and the pain in my upper stomach. I went to the bathroom in desperation to relieve the discomfort, wanting to just fall back asleep. I felt in shooting to my shoulder blade, and nausea setting in. It was a mirage of symptoms previously ignored that I now related to the traumatic events of the pericardial effusion that led to cardiac tamponade in the days prior. I informed the nursing staff of my discomforts and settled into an uneasy sleep with the bed sitting upright. Later that morning an Echo cardiogram was scheduled to check the heart before the tube was removed from my chest.

While waiting for the Cardiac Sonographer to be called into the hospital on a Saturday morning, an attentive nurse decided to change out the type of suction system I had, seeing as it was not doing anything and I was having symptoms. It turned out to be just a different type of system, not anything that was pinpointed as broken or defective. When the new system got running and five different nurses figured out how to add the water to the suction compartment, it became apparent there was actually fluid building up on my heart again. After 100 ml of fluid drained off of my heart in just an hour (double the amount needed in 24 hours in order to send me home), the ultrasound was performed. It showed a small pocket of fluid still there, and the tube was left in longer to continue draining a few more days. This gave my heart the time it needed to heal more in the hospital while the Prednisone kicked in and my heart rate adjusted. I was not allowed outside, was craving a hot shower, and started hating the food. I also was not sleeping enough, and the IV in my right arm was hurting from still being placed ever since my ambulance ride five days earlier. I struggled to stay sane, and the Prednisone side effects of mood swings and food cravings were in full force. Thankfully through all of this I had some pretty amazing visitors. My loving church pastor visited me with prayers and well wishes after driving all the way to the hospital just to see me, which made me feel incredibly loved. I also had a long time friend stop by when I was at the hospital alone on Monday, and even went for a walk with me when I was finally released outside. Mostly I had my mother there with me until Sunday night when she had to return home for work the next day. I also had my boyfriend visiting me almost daily, bringing snacks and sanity in the form of chocolate and hugs. He worked hard to learn about every small detail of my medical care and educated himself on what I was going through and how he could help. It was great knowing that even though we had not been together very long, he still was not scared off by the traumatic medical experiences he had to witness. In fact it made us grow stronger, and we grew in our friendship and relationship daily with long philosophical talks and lots of laughs. He lifted me up in multiple ways when I was down. It wouldn't be hard for anyone to feel insecure after experiencing so much, but he concentrated on building my self esteem and reassuring me that I am not defined by my struggles, and there is certainly something special about me worth sticking around for.

By the time the chest tube came out on Monday, I had my pain well controlled, my stamina to moving around was building, I was independently helping myself to the bathroom and kitchen for water, and anxious to get outside. They finally released me that evening for a short break outside where I walked myself to the elevator and out to sit in the breezy evening air with my friend and parents. Upon returning to the room I was able to tape up my arm IV and chest tube insertion site, and take a hot shower. It was a painful shower and I struggled with a pinch in my back and some knee pain for a few hours afterwards, but slept on clean hair and was excited for that. The next morning started with teams of physicians assistants and doctors preparing me for discharge. I had another ultrasound done where I questioned the technician about her schooling experience and how I was interested in the career option for myself. I also had a chest X-Ray, clean blood work, normal heart functions and great vitals. All was ready for me to head out, and my mother's friend was called upon to pick me up. I packed my things, even attempted french braiding my own hair (which raised my heart rate quite a bit), and was ready when my ride showed up to walk myself to the car. I got home and immediately wanted food. Sitting in the same place I had when I left the house by stretcher a week before, I thanked God for the fact I was still alive to see my family and house again. It felt good to eat with my cat by my feet and the busy life of my family swirling around me. I knew what I had just been through was too much to ever fully type for my blog readers, but I would try in the next days to recount the experiences to the best of my ability for other's around me, and also for my own outlet.

ICU Round Two

The bed rolled to a smooth stop as I arrived in ICU after my Pericardiocentesis procedure Wednesday night. Faces bobbed to and from, as a young man assisted with getting my vitals and making sure I was comfortable. The talk spread fast that I had returned, my face familiar to the staff from the week prior when I was recovering from open heart surgery. My first questions were of my mother, curious if she had made it and if she knew I was okay. I had pain in my left shoulder blade, a Pericarditis from the foreign object that now rested next to my heart to drain fluid away consistently. One nurse tried to give me Oxycodone, and I refused to take anything for my pain as I knew it would make me feel drugged and nauseas, and I would rather struggle through the pain. I drank some water and began to let my nerves settle from the experiences of the evening. My surgeon, Dr. Discipio, popped his head in to check on me real quick and then buzzed off to search the ICU waiting room for my mother. He knew the importance of updating her and getting her in to see me in an improved condition after her long two hour car ride in the dark. The nurses took such great care of me in my private room, attending to every need and pressing for me to inform them of any discomforts. I felt almost like a superstar as I was tended to and admired for the unlikely experience I had. My surgeon reassured me that this was a phenomenon experienced in younger patients often, understood and treated effectively, and not that big of a deal. I caught on to his attempt to soothe me and keep me from worrying, however, and heard the rumors of the nurses on how uncommon the situation was. Dartmouth is known for it's low post op return rates, and here I was as one of the youngest patients they had seen and back for round two.

My mother's face rounded the corner of the glass sliding door to my room and relief swept over me. I was happy she could see me alive, able to talk and breathing normally. I had missed her beside me in the helicopter, and while I waited for the procedure to be performed. I had not known what to expect and everything happened so fast that I had to handle it all on my own. I knew I was in good hands but there was nothing quite like knowing I was in her hands. She came beside me and looked me over, understanding the trauma I had just experienced. It was an unspoken moment of understanding, and my heart relaxed at the sound of her voice. Nothing can describe the connection between a mother and her only daughter after being through so much together. It is a concrete bond, where as best friends we respect each other and could never value each other's company more. I have fun with my mother, unlike most teen girls who fight to escape their mother's presence or replace her with boys and best friend's parents. Obviously I am still an 18 year old who has been home bound for almost seven years due to medical problems, and I yearn to have freedom and independence. I love being able to attempt normality, go out with friends or for dates, and drive myself places. I even value going to a doctor's appointment on my own and practicing my ability to speak up for myself. These are great practices to have as a chronically ill child entering adulthood, and I will continue to push for my independence as time progresses. However, nothing will quite encompass the relief of my mother by my side in the ICU that evening. We talked for hours as we drifted to sleep, her beside me in an arm chair, about the evenings events. I asked questions to refresh my memory and make sure my best friend and boyfriend knew I was okay, and told her how much I loved her.

The next morning during shift changes, a beautiful dark haired nurse came in. She was sorry to see me back, but excited that she could be my nurse again. She had requested me upon hearing my name that morning, and wanted to make sure the best care was given to her returning client. I can't even encompass how sweet she was, eager to help and make me comfortable, making me feel loved and overwhelmed with her concern. It was great to know they were taking good care of me, and I was going to be okay. I was under the best surveillance, and not relocated out of the ICU to the Cardiac Intermediate Care Unit until I was ready. That gave me time to snack, keep up on Ibuprofen and Tylenol, use the bathroom and get out of bed, and also have a visit with an RN who acts as an advocate at the hospital. The advocate kept in touch with doctors, requested I be allowed to keep the ICU bed (which I was more comfortable in, it did not adjust every few seconds like the bed I had during my previous stay) after being transferred, she even got a Velcro bra for me to try and make me feel more comfortable. They were anxious to heed our every need and we covered the staff with questions about the condition I was in. By the time I was rolled to the ICCU, I was used to the response from the nurses and LNAs who recognized my pale structure in the bed, returning to my second home. The shock and pity filled the air and I glanced around on my way to my new room to see who I recognized. With too many faces to count I allowed the event to occur, and was maneuvered into a small solo room with a large glass window and private bathroom. I still am convinced I had the best view in the entire hospital for my second stay at Dartmouth. The window overlooked a mountainous scene above the north parking lot with a clear view of the helipad, so I could watch the emergency team come and go day and night. I could also see cloud formations adjust around the mountains and the sun light grow and dim throughout the week. More than the entertaining view, I was pleased to have my own room. A few patients shared rooms with other's, but I got lucky that I was left alone for the most part to rest and recover. At night they let me sleep for multiple hours instead of checking vitals every hour. I was hooked up to telemetry again that watched my heart constantly on a series of screens down the hall. I even got my mother to help me shift to the bathroom and back to the bed with all my gear in tow. I was attached to a chest tube drainage box that hooked on and off of pressurized suction nozzle in the wall. Also, I had an IV running saline slowly to keep my port open for a few days. That was soon removed and I snuck a heparin in the line to upkeep my own catheter from blood clots, which the hospital refused to do.

My stay in the ICCU lasted from Thursday until Tuesday, and was a long tedious visit. I spent a lot of time eating hospital food from a pediatric menu, napping during the mornings, adjusting to changed medications, receiving visits from residents, PAs, RNs, and surgeons who heard about my case, and getting to know the staff. I borrowed a book for a few days from one of the night nurses all about the heart with pictures and explanations. I'm pretty sure my time there was the most educational, as I soared through the book reading about my own heart complications and asking questions to the other nurses about the heart's functions. One of the LNAs was working in the evening and explained thoroughly the electric pulses of the heart and how Lyme can even affect the rhythm. After Thursday and Friday in the hospital, I was ready to head home Saturday. I clung to the possibility of being able to sleep in my own bed. After the pressure was removed from the heart I could finally sleep laying down, move around more comfortably, and my cough had even resided. My antibiotics for Lyme stopped on Friday, and it was decided that the port would be removed the following week because of it's cause in my heart problems and throwing clots.
Robbie visited me almost daily during my stay, bringing ice cream and cards to keep me busy!

 Now that the antibiotics had stopped, and the antifungals stopped, I had to concentrate on the new medicines prescribed to me. I was put on a Prednisone six week taper which was mandatory for reducing the inflammation around my heart and the fluid production that caused my complication. Most Lyme patients can not do steroids, being that they kill your immune system and let Lyme run wild in your system. This is the only time when needing steroids is more important than worrying about my symptoms right now, this is life or death. It's the exact reason I once hesitated listing steroids as a medical allergy, knowing that if there was a trauma situation where steroids were needed and I was listed as allergic it would affect a life or death situation.

My mother and I were not happy with this change, but I made the emotional step to accept my situation and let God handle the rest. I informed my specialist I wanted to take a medication holiday while we addressed the heart recovery, have the port pulled (which was going to happen in a month upon losing insurance coverage anyways), and reduce the number of toxins on my body as I recovered from the two weeks prior. My body had been put through a lot, and I needed to allow it time to return to a normal operating level before reassessing the treatment situations for the Lyme Disease which has become the least of my worries lately.

My heart medication was also increased to control the heart rate and blood pressure levels, and it took about three days for that to settle in and begin working smoothly. I started walking around the hospital more to stretch my legs, and begged for the chance to breathe the sunny spring air I could see outside my window, teasing me for freedom. Within days I had finally began losing an impressive amount of water weight, fifteen pounds falling off and peeing like a racehorse daily. My feet looked normal again, and other than night sweats I was feeling pretty good until Friday night, when again discomfort overcame me, and my hospital stay was expanded.

Monday, April 21, 2014

Returning to Dartmouth

The space in the helicopter was limited, but I didn't notice as they slid the stretcher into the enclosed area and crawled in around me. The Ativan had kicked in and I felt safe in the hands of the emergency team that was transporting me. Why I had previously begged not to return to Dartmouth, I'm unsure of. I'm guessing I just did not have enough oxygen in my brain to make a sound decision. Obviously I was needing to return to the better hospital, with my own surgeon who knows my case and can save my life, and better care facilities. I wouldn't willing suggest staying at the local run down hospital's emergency department with staff that was untrained in severe cardiac complications, like the effusion and cardiac tamponade I was experiencing. Cardiac tamponade is a complication from open heart surgery that occurs from an excessive build up of fluid on the heart to a point where a chamber collapses from the pressure and is no longer pushing oxygenated blood through the body. It is a serious and deadly condition, not commonly reached in post op patients. I was young for an open heart surgery to happen in the first place, but the complication of the fluid build up in the pericardial sac around the heart is something that can happen to anyone. The concern is if it is internal bleeding and blood is building up, instead of fluid from inflammation, than there may be more serious problems. Either way the fluid must be drained off of the heart to relieve pressure so it can beat normally. A small amount of fluid, under 50 ml, is naturally lubricating the pericardial sac at all times with the body reabsorbing excess constantly. Any more than that affects the hearts natural function, and this is when a special procedure needs to be performed. Pericardiocentesis is a procedure where the fluid is drained off of the heart. It can be performed in trauma cases with a large needle inserted near the bottom of the breastbone, or in a Cathlab procedure where a drainage tube is placed. This is what I woke up to in the emergency room, and thankfully was postponed until my arrival at Dartmouth. The DHART (Dartmouth Hitchcock Advance Response Team) guys were prepared to perform this emergency drainage procedure if my condition worsened during the flight.

Once I was on board and the helicopter took off I was stable enough to twist and look out the window. I saw the lights from the city drifting farther away as we rose in the sky and noticed the sun had set sometime between me rolling out of the hospital and boarding my first helicopter ride. I also saw the frozen lake beneath, and stars twinkling through a clear windy space. The ride was rough but lasted less than twenty minutes, and I managed to fall asleep for the last fifteen minutes. I was happy that they moved me quickly instead of a bumpy two hour ride by ambulance in an unstable position. The air felt like a cool promise upon arrival back to Dartmouth, as they pushed me across pavement to the hospital I had departed days earlier. I knew I was in safe hands, and that my mother was on her way. The first new face I saw was that of my confident surgeon who grabbed my hand and reassured me that I was in his care now and I would be alright. I remember thinking 'I feel terrible, he will fix me though.' He stayed by my side the entire time, as they ran new tests due to LRGH not sending along proper records. I was poked and prodded a million times that evening, becoming used to the abuse on my body. I knew they were just doing their job and I did not complain. At one point I made sure that my blue spa socks, gifted to me the day before by a close friend, were removed from my feet and put in a personal belongings bag. I did not want to lose something so significant to me after one had already fallen off and I begged for it to be found while settling into the trauma room in Dartmouth's ER. Soon after, the DHART team disappeared as swiftly as they had swooped in to rescue me, and I never saw them again. New nurses took over my vitals and making me comfortable as Dr. Discipio decided what the next step would be. I told him to make the decision for me, because I could not think clearly enough to decide what I wanted. He gave me an option, we could try for a Pericardiocentesis in the Cathlab with a doctor that had to be called in to place the tube and Discipio would watch, or we could go to the operating room where my doctor would do his own procedure, of what I'm unsure, and they would sedate me properly. The doctor was called in and an emergency Pericardiocentesis procedure was performed before my mother even reached the hospital, while I lay awake through the entire thing.

The first step was using topical anesthetic around the ribs in the left 5th and 6th intercostal space. The area was painful to numb and I whimpered as the needles dug through my bones. Then a large needle was inserted at an angle into my torso, and I could feel the puncture like a balloon popping as it pierced through the pericardial sac. All was watched with ultrasound and X-Ray equipment to avoid puncturing the lungs or further complications. The needle was retracted leaving a white narrow tube in place that was maneuvered with a metal wire for better positioning. I felt pain in my shoulder blade, typical of having a tube between your heart and it's protecting layer. Once in place they used large 100 cc (or ml) syringes to start pulling fluid off of the heart. They got through 700 ml of fluid and began to slow down, wanting to leave a little fluid to naturally drain with the tube left in place, avoiding another painful complication called Pericarditis where there isn't enough fluid creating further pain. The fluid was tested on a table to my left to make sure it was not bloody or infection filled. It was neat to think the twenty people bustling around me were doing their little jobs so efficiently and quickly and yet so late at night. They were all busy with their tasks at hand and to my left and right were the two most experienced in the room, making sure the job was done right. After the fluid was pulled off, they asked how I was doing. "I can breathe!" I exclaimed in relief. It's amazing how immediate the change was that I felt and I was instantly happy for the procedure no matter how painful it was. Still more work was performed as the drainage tube was covered with gauze and dressing, and I was prepared to be moved to the ICU. On the way out the door yet another angel in disguise took care of me, covering my feet in a warm blanket and making sure my personal belonging's bag followed me to ICU. He held my hand and kept the operating team from sliding me onto the bed hastily, keeping them from jarring me around in my discomfort. I knew I was in a position where I had the best possible care, and all the many angels that followed me along the way made the traumatic experience a little easier. I was cherished as a child, respected as an adult, honored as a lady, and protected as a patient in the care of the medical professionals at DHMC.

Post Op Day 8, The Crash

I got off the phone with my Cardiothoracic surgeon and sat quietly for a second letting the news sink in. I was just told the pathology results, that the port to treat my Lyme Disease was probably the cause of all the past two weeks of pain and suffering. The mass was a large clot, either from the tip of the port or possibly a blood clot disorder they would test for later on when I was recovered. My breath felt labored and I began to feel nauseas. I felt my heart pounding hard in my chest, and fumed about this news. Within minutes I began to decline. I scooted tenderly to the front of the chair, thinking I should go to the bathroom. I told my mother I needed some anti anxiety medicine, and thought I was having a slight panic attack. 'How dare I get myself so worked up over something so trivial', I thought to myself. By the time my mother walked to my room to grab the anti anxiety medicine, both of us thinking I was just upset, I worsened. I grabbed the first thing to throw up in, a cardboard box on the couch next to me, and hugged it to my chest, feeling myself breaking out in an immediate cold sweat. I became so dizzy and weak that I fell backwards into the chair, and turned white as a ghost. My mother returned with a confused look on her face. "What's wrong?" She said, seeing my condition diving fast. She felt the immense sweating and knew immediately this was not simple panic attack stuff. I barely managed to say "something is really wrong, call 911" as I felt myself slipping into the black. She grabbed the blood pressure cuff and the electric machine read 'error', unable to register a pressure as it dropped so severely low. I remember thinking, as people bustled around me, 'wow, I feel terrible. I'm sweating. There's no pain but I think I'm having a heart attack. I don't think the EMT's will make it in time. So, this is what it's like to die? It's happening pretty quickly, a minute ago I was fine.'

I don't remember a section of time as my breathing stopped, and my mother shook my hands to try and keep me with her. I don't remember staring blankly into midair in an unconscious stupor. The paramedic arrived as I was slowly coming to again, my oxygen reading at 60, temperature under 90 degrees. The blood pressure was so low that I was unable to get oxygen to my brain, and I was struggling to make eye contact or understand what was happening. My mother did not allow the rescue team to move me, as they reached for my arms. She protected my sternal incision by pushing them away and helping me move my own weight to the stretcher. Once I was settled on the stretcher I was not moved again except by sliding a sheet to and from surfaces. I begged them not to hurt my chest, still sensitive from a week before when I had the open heart surgery. The got me in the ambulance, placed an IV and began an EKG and all my vitals which were gradually settling back to safe levels. I was becoming more aware of my surroundings and discussed with the paramedic my condition, the syncopal episode, while on the drive to the hospital. She suspected septic shock, maybe from an internal infection. I was wheeled into the emergency room at LRGH and immediately seen by doctors and nurses and machines of different types. They quickly ran a few EKGs, seeing unnatural rhythms, and ran a chest X-Ray in the bed. The doctor got the portable ultrasound machine and placed it on my chest, as nurses bustled around me poking and prodding. I was vaguely aware of the violation of my body, where hands made themselves at home and eyes traveled my scars for signs of problems. My surgeon was phoned about my condition, and a decision was made to transport me by helicopter to Dartmouth as the quickest option. I was no longer in a stable condition, within fifteen minutes I had declined yet again to unhealthy vitals, extreme nausea, and the doctors discussed my echo pictures over me while I wavered in and out of attention. My mother and father were there with me in the trauma room, and a herd awaited in the ER waiting room from the news of my condition. I was listed in critical condition, but my grandparents and boyfriend got to come in one at a time and pray with me and say hello briefly. I don't even remember the faces coming and going, words that were said, things that were done. Apparently I even told my mother I needed to say goodbye 'one last time' and 'don't let them bring me back to Dartmouth, it's so far away'. I knew my situation was serious, but I had no idea how serious. Recounting the events later, I was informed that I had leaned forward to throw up and passed out cold again (every time I sat up my blood pressure dropped to the point of loss of consciousness, which the ER did not pick up on). The doctor yelled for beta-dine, and my mother and boyfriend were rushed out of the area along with another nearby patient. On their way out, they heard the two doctors peering over the ultrasound picture discussing a collapsed right ventricle (known as cardiac tamponade) and fluid on the heart (pericardial effusion). I pulled out of the black abyss slowly, and cried 'where am I?' before looking down. I saw my orange stomach and the young doctor hovering a large needle only three inches above my sensitive skin. Immediately panic set in and I screamed and flailed. "You are not touching me with that, I'm awake now, don't touch me, please use Lidocaine," I cried loud enough for the entire hospital to hear. Someone dug in my left arm for an IV access and as my blood pressure rose. Right at that moment the DHART helicopter response team strolled in to see the chaos. They cleared out the room, gave up on the second IV possibility, and demanded Lidocaine for my comfort in case of a future emergency pericardial drain procedure. Ativan was administered to calm me before the flight, and my condition was stabilized. These few men took control of the situation, kept my needs met, and saved me from a traumatizing situation. I stil view them as angels as I recollect the face of the head paramedic in my mind. I will never forget his first action, where he grabbed my hand and announced with confident 'I am Kevin, I am going to take good care of you, what can I do to make you more comfortable?' As I was rolled out, half way aware of what was occurring, I got to say goodbye to the lineup of family that had formed. My parents first, then my grandparents, Robbie with his unsure look of concern, and an aunt and uncle with their children, all yelling well wishes and patting my arm as I passed, on my way to a small green helicopter waiting to escort me in style.

Saturday, April 19, 2014

Pathology Report

Wednesday was the day everything changed. I had been home for a few days, struggling with symptoms like stomach/shoulder pain, nausea, and a cough, and decided to attempt my second walk outside of the house. I asked the five year old child my mother was babysitting if she wanted to go with me. it was a great spring day, slightly windy but refreshing as we made our way along the paved street I live on. I estimate from my house to the stop sign is a small hill that runs a little more than an eighth of a mile. From my door step to the stop sign and back is at least a quarter of a mile, I did not plan to walk that far. With the energetic girl bouncing beside me I suggested we 'search for bunnies' and in all her excitement we trudged to the end of the road. I took a break for a few moments here and there and felt tired, but did not feel dizzy or faint so I continued. When we returned to the house I was so proud of myself for embracing the distance and good weather and pushing myself to a higher standard. Immediately upon sitting down I felt sickly, with heart palpitations, pain, and fatigue. I knew I had walked too far for my second walk. My heart rate was checked and landed at 120, which is not preferred but also not terrible. I ate something, got my medicine in me for pain, and relaxed on the couch for the next few hours.

When the phone rang and read Dartmouth I knew it must have been my surgeon with the pathology results. He had told us, while I was still hospitalized after surgery, that the mass removed looked clot-like, nothing he had seen before. He said it was bigger than they thought, golf ball sized and hardened to the point where surgical removal would have been the only choice. He also said that he was glad we did not take the watchful approach and wait to see what happened with the believed Myxoma. I opted for the surgery right away due to medical insurance reasons, but it ended up being a blessing in disguise because the mass 'did not need to be much bigger to completely block blood flow' he said. If it broke off I would have been a sudden death case where autopsy would be the only answer to my cause of death. Over the phone he confirmed his previous suspicions. A large and hardened clot, also known as a thrombosis, was removed from my right atrium with no explanation for how it organized itself on the wall inside of the heart, or how long it had been collecting and growing in size. The report calls it a mural thrombus meaning clot attached to the heart, and describes it with muscle fibers and tissue encapsulating the hardened structure. The best idea for a cause was the tip of the port catheter that sat right beside the mass in my right atrium. Never had my surgeon seen this before, and still we are not sure of the cause. The surgeon recommended that once I am fully recovered we test for blood disorders and clotting disorders that could be a more genetic explanation. The bacterial and fungal cultures were all negative, and I became quite the mystery to many in the hospital who do not see young girls in the cardiac ward for open heart surgery often. Later on, a nurse informed me that in her 17 years of working in the cardiac wing of Dartmouth she has only ever seen two patients for cardiac tumor removal, and never one for my mysterious diagnosis. I was lucky to be alive, that in the month up to surgery the blockage did not release and reek havoc on my body. The possibility of the port causing all the pain with the surgery, put me in an anxious spiral, and immediately after hanging up the phone I got quiet. I was frustrated for this possibility, and I wanted nothing more than for the port to be removed immediately. "This is coming out tomorrow, if it can" I cried to my mother. Yet again everything I had been through wrapped right back around to Tick Borne Infections. My mind swelled with these realizations and my heart felt as if it could pop. Little did I know, that terrible feeling that developed was something much worse in the making, and within a few minutes my world would turn upside down.

Tuesday, April 15, 2014

Returning Home

I was sent home on Day 4, a beautiful Saturday where I fought discomfort and worsening nausea as the day continued. I finally ate a good meal when I got home, and relaxed in my dad's armchair as I was visited by my friend Rose for a short bit, and then my boyfriend that evening. Little did I know my situation would go from bad to worse. I spent my first night home in excruciating pain and vomiting too much to take more pain medicine. I went twelve hours without anything in my system to help the pain, throwing up, unable to relax, unable to lay flat, and begging my mother to take me back to the hospital. I just wished something would make it stop, or at least make it manageable. I knew in that moment that I shouldn't have stretched the truth earlier that day. When I was asked if I had been eating well, how my pain was, if I was ready to go home, and I answered that everything was fine, I really meant 'It's all terrible but I'd rather be miserable in my own home than in a hospital. This was not however how that worked out. Instead I was sent home early, crippled with pain and nausea, and experienced one of the worst nights I can remember. All that wishful thinking turned into a nightmare that I struggled through in agony.
Me after surgery, first meal

Sunday was the day we began to catch up to the pain. I made the decision to not try the Oxycodone, that it was just too much nausea for me to gain anything from taking it, and I'd rather be in pain. Instead I tried taking Ibuprofen and Tylenol only, around the clock. I forced myself to eat before the pain medicine hit an empty stomach, and took Zofran constantly. By Monday I had the nausea under control, and spoke to the surgeon's Physician Assistant about my concerns. I told her I refused to take narcotics, and she switched the Ibuprofen to a stronger anti inflammatory called Naxoproxen. That seemed to help, and instead of the dose on the bottle saying to take it every twelve hours we did it every eight hours. Once that was controlled I informed Jamie that I could not lay down flat, my shoulder blades and upper stomach just hurt too much. I also had developed a cough, sharp upper left rib pain near my heart, and the feeling that my rib cage was cracking constantly. I was advised that it all was normal, to keep forcing myself to take deep breaths and take some GasX for the stomach pain. Most patients prefer sleeping in a recliner after heart surgery anyways, she said, so it was no surprise. I did not realize at this point that some of those symptoms were not typical post surgery aches. I would find that out Wednesday evening.
Get well flowers from Robbie

My days home consisted of round the clock medications, force feeding myself as I grew an appetite, trying to build up to a bigger walk, and constructing a better sleeping plan through all my discomfort. I struggled to keep my cats from jumping up on my chest, like they love to do, and keeping myself comfortable. Refusing narcotics seemed easy after what I had been through the entire week of the surgery with the throwing up. There is nothing worse than heaving after your rib cage has been broken, other than your entire rib cage being broken of course. One important landmark of being home was figuring out how to move around, which I did with the heart pillow from the hospital and propping myself up with a million pillows everywhere I went. I was supposed to start out slow with walks and increase a few minutes each day.  My first walk made me realize how much my heart was altered. Where I used to run three miles a day, I was winded by slowly inching myself thirty feet. I could not travel alone, I could not easily move, and I was saddened by the setbacks to my physical fitness. My legs had swollen from the thirty pounds of water weight I put on, to the point where bending my toes was uncomfortable, and the skin felt like it was ripping when I moved. I kept hope that in two weeks I would progress as predicted, losing most of the fluid retention in my body, and gaining up to a comfortable thirty minute walk daily. I knew I would improve if I kept positive and reminded myself that there must be a recovery period after such a severe setback. Plus, I had so many people praying for me all over the map that it was impossible for me to not improve eventually. It would take time to get back to where I was, but it was going to feel so good when I reached my peak athletic performance level and could look back on the mountains I had to climb to get there. Nothing worth having comes easily.

Monday, April 14, 2014

Recovery Day 2, 3, 4

The moment I remember first was telling my mother that it was okay for her to leave. I wanted her to be able to go to the place her and my father were staying down the road, and grab some sleep. The place is David's House, a pediatric housing unit for parents in tough situations who need a bed and a hot shower close to the hospital, while their children are in-patient at Dartmouth Hitchcock Medical Center. She left the arm chair she had been sleeping in and went to catch a nap in the twin sized bed at David's House while I was stable. The vomiting had stopped, my pain was more controlled, and I wanted nothing more than for her to be comfortable. After a few hours, I was awakened to the information that they wanted to pull the large chest tubes that morning. The chest tubes were about half an inch in diameter, running in two incisions above my belly button from the center of my torso through to my lungs on each side. I knew it was going to be a painful experience for those to be removed, and I told my mother I wanted her to see me smile once more before the procedure. She rushed over just in time for the clear snakes to be pulled from my body and the remaining holes tied closed. It was like something from a horror story, the pain of my insides being ripped and my skin being pinched closed with thread, still haunts me. That was my first clear memory post surgery. I woke right up from the adrenaline of that pain and can truly say it was a traumatic experience.

Before Surgery
The rest of that day is washed from my memory. At some point I was transported from Cardiac ICU to the Intermediate Cardiac Care Unit for the rest of my stay.  To understand the entirety of the procedure I want to review the stress my body was put through. First, there was a heart and lung bypass machine that ran my body while in surgery, it entered in my neck as an IV, and in my major vein running from my groin and cycled all my blood and oxygen in a closed system. Second, there was the chest tubes described above, one for each side of my chest to drain inflammation from the chest cavity through the procedure and recovery. Third, there were two additional incisions near the chest tubes that contained pacing wires (an external pace maker basically, to control the rhythm of my heart if need be after surgery). Fourth, there were arterial IV's that measured blood pressure in each of my wrists, causing extreme bruising and pain in the joints during recovery. Fifth, there was a sternal incision down the center of my body where everything was separated including my sternum, muscles, organs, and of course the skin to allow for access to the right side of the heart. The surgeon did a great job keeping scarring in mind, and the skin incision is only 4.5 inches long (he worked in a larger area underneath the skin, and the skin is glued together to reduce the scar). When it heals you wont even notice the scar that much. The bone was divided down the center and instead of wiring it back together like traditional open heart surgery, I was stuck back together with permanent stitches that will not dissolve but also not be obvious under my thin torso. Now that you are fully aware of the immediate and obvious trauma, add on the thirty pounds of fluid absorbed through the procedure, the seven scars I will always have, the emotional trauma, the general pain, the sore throat from the breathing tube, and the 2-3 months recovery to heal the sternum. This is the most invasive surgery possible, every system of the body is affected (from respiratory, circulatory, skeletal, musculatory, and lymphatic systems to the digestive/urinary tract, and even the nervous system), and there is constant moving from breathing and your heart beating through your entire recovery.

After Surgery

On day three I still fought with nausea from the painkillers, and constant pain while breathing. I remembered what I was told before the surgery, that patients "Don't usually complain of pain while breathing after surgery", and I wished it was true.  I switched from PCA (as needed, you push a button for a dose) Fentanyl to oral Oxycodone. Nothing was working and all of it made me sick. The nausea medicine did not cut it, and I was barely able to eat a few bites of jello or drink a protein shake with medicine doses. One evening while lowering myself into the arm chair I chose to sleep in, I felt a rib in my upper left chest slip out of place with a pop. This slipped rib caused me pain all throughout recovery, popping in and out of place and affecting my comfort level while trying to rest.  Those few days were some of the most painful, uncomfortable, nauseas days I've ever had. I was given a pillow in the shape of a heart with a real heart pictured on the front to hug while I adjusted (keeping me from pushing with my upper body and ruining my internal sutures). Pillow in hand, I was pushed by physical therapy to start walking immediately. Uncomfortably attached to a urinary catheter I pushed myself up and down the hall. One evening (I believe day 3), the catheter was pulled, which also stopped the diuretic medication I was on to reduce fluid retention in my body. They started me back on my confusing IV treatment regimen, and even used my port for blood draws (much to my surprise, usually they won't touch a medi-port if they did not install it). I was started on Metoprolol, a beta blocker medication to reduce heart rate and blood pressure through recovery. The dose is started small and increased over time while your body takes three or four days to adjust to the new levels. At first it can make you feel really tired and abnormal, but once you adjust it reduces your anxiety levels, helps you sleep, and is better for your recovering tissue. The changes my body experienced kept me busy for those few days while the pathology department looked over my clotted mass to decipher the 'myxoma' and its origins. Up until this point, we were told it was a right atrial myxoma, a non-cancerous collection of slow growing tissue inside the heart. Usually these masses are attached by a stock, need removal at some point (or are found in autopsy), and there is no explanation to their cause. We wouldn't know otherwise until seven days after surgery. See 'Pathology Results' post for more info.

Artery IV spots, painful bruising
After the chest tubes and catheter were removed, the pacing wires were pulled out. That was not nearly as painful as the chest tubes, but it was the same sort of pulling, sliding, grinding, uncomfortable feeling. It ached afterwards for a short time, but there was no stitches to tighten or worry with on the skin, which helped. I had a new IV put in my other arm which only lasted for a day, but did not leak around the entry site or sting. One of the best things I experienced was before being dismissed from the hospital I got to use special adhesive remover pads, and get all the gunk off of me from the tapes and stickers. That shower was great, and that night I had a visit from my best friend Rose and my boyfriend Robbie. It was great to have different faces in the room and be in a clean state of mind while they sat with me. My father had returned home after the two night stay at David's house, and my mom stayed in the bed in my room. The bed (which I swear was broken) adjusted every 20 seconds on the dot, even if you were not in it, and the constant movement was too painful for me to relax with. I chose instead to rest in the armchair surrounded by pillows and reclining my swollen legs and feet on the unstable footrest (usually we supported the footrest with another plastic chair to keep it from suddenly falling closed). It's sad when a surgery patient chooses the chair instead of the bed because the bed is just that annoying. We were told most heart surgery patients choose the reclined position instead of laying flat for the first two weeks. I think the reason is because the bed's are worse than the chairs. Plus when you are fighting nausea, the last thing you want is to lay down flat.
New IV with a smiley!

Day three is when I began to stretch how good I was feeling (after the medicine adjustments, tubes being removed, an uneasy shower, restless nights, and still struggling). I just wanted to go home and be in my own bed, instead of feeling couped up at a hospital. I received my wish, and with hopes to a night of sleep without being poked or prodded awake every hour, I left on day 4 for the bumpy trip home, and some KFC.