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.

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.

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

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.