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

Post Surgery Check Up, Non Lyme Friendly PCP

Yesterday I went for my post surgery check ups. First up to bat was my PCP. Believe me, I wish I had a bat. She was bent nosed about the fact that I was feeling better from the gall bladder removal. She was the one who thought it was indigestion, I told her it was worse than that, hmm. The patient is ALWAYS right. The first thing she said upon entering the room was 'So, you're all better now?' with more sarcasm than I could believe. So I responded with how my stomach was feeling a lot better, virtually no pain. Told her that I came off of the Yaz because it was causing severe suicidal type depression and anxiety and not helping the cramps or acne or cyst pain. Instead I just bled every two weeks. She didn't have any comment about that. Then I told her about my heart rate averaging about 120 and 100 at rest. Informed her that I started adrenal supplement to help with tachycardia symptoms and fatigue. She responded with 'So you're just adding another medicine then?'

With all the patience in the world I tried to ignore the comments and sarcasm, in her tone of voice, and asked if she knew anything further about disability. Our meeting ended with her replying that she knew nothing about disability or the prerequisites for applying and she didn't think I needed disability, and instead I need to just 'get up and do schoolwork' because that will make it all better. Supposedly I don't need to drive or be on car insurance either, because it's not anything of concern to her that I wouldn't make it to half my appointments without my license. General consensus, she does NOT understand, wants nothing to do with the Lyme, does not believe I need disability, and treats me like a psychopath when my mother is not at the appointment.

My appointment with the surgeon went great though! Tajammul Shafique is by far the best doctor I have ever seen in my entire life. The nurse got me flowers and they all talked to me like they were my best friends! Dr. Shafique agreed that the surgery appears to have been a success and I don't need to return for any more appointments. For anyone that needs a surgeon: Dr. Shafique through LRGH in Laconia, NH or Gilford, NH Is the way to go! He revived the medical field in my eyes after a rough morning with a non friendly doctor.