<-- Daily walks on transplant floor :)
After arriving home, I was still very weak from the Norovirus and although I had the dream team with me to cook and feed me, my body just wasn't having food and could barely tolerate fluids. I was no longer hooked to an IV so I had to rely on keeping everything down in order to rehydrate from the constant diarrhea and nausea. The cramping just kept getting more intense and even the thought of food would make me gag, although that didn't stop my mother from force feeding me and forcing me to drink fluids, even if they went right through me ;) I knew I had to force myself to eat and drink for recovery so applesauce and cream of wheat was my go-to when I needed to get calories, but even that was a struggle. My clinic day was 4 days after I was released from the hospital and it felt like the longest 4 days of my life. I continued to get weaker from the virus, dehydration and malnutrition. Since the surgery I had now lost 20 lbs and felt like my legs couldn't even support my body anymore.
It took Johnny and my mom to support my weight to get me into the car and then wheel me to my appointment. I had no strength left and was in the most intense stomach pain I have ever felt. When I arrived at the clinic, my doctor immediately saw how weak i was and the defeat was written all over my face... she knew something was not right. The virus was shutting my body down. I was given a bed in a back room and hooked up to a bag of fluids right away. After about 20 minutes I started talking more and was able to sit up a little on my own, still cringing from stomach pain but at least I was feeling a bit less weak... we got very hopeful that maybe I just needed to be rehydrated and could possible just continue IV fluids at home and beat this stupid virus! well, that wasn't the case.
About ten minutes before my liter of IV fluid was finished, I started feeling my heart beat flutter a little. I repositioned myself on my left side trying to relax when my heart started feeling like it was going to jump out of my chest, hard and fast! I've never felt anything like it. At this moment i'm cringing from stomach pain and pushing onto my chest as if it is about to fly off my body. The nurses see this and begin putting the EKG monitor on me.
"tachycardia, no wait.. I saw it... SVT, Afib. Grab the doctor... no its going back down, No... back in SVT... we need to record it!!"
A bunch of panic and words that I didn't expect to hear or quite understand fully yet were flying through the room as i just clenched down and tried to get through it. The nurses were great at trying to distract me from the unbearable pain by giving me tips to trick your body out of Supraventricular Tachycardia (SVT). They had me breathe in and hold my breathe then breathe out hard through pursed lips (like a straw). One nurse told me to moan a little... which wasn't a problem because I already was from the pain! They also said before modern medicine, they used to just dump patients heads in ice cold water to bring the heart rate down. I was given a cold wet towel but that did nothing but make me shivver.
After a few minutes and finally a decent recording of the event, I was rushed down to the ER so they could treat me with the right medication. The ER is never a fun place.... everyone asks you the same questions, without looking at charts and everything has to be RE-done before they perform any procedure. So AGAIN, Im cringing in pain and they need to hook me back up to their ECG and make sure my heart is still in SVT. Finally they get a reading and place me in a room with another woman.... I explain that i'm a post transplant patient and I should be on contact precautions.. DUH. So after a few minutes they roll the other lady out of the room, who seems to be doing just fine eating her pudding and talking on her phone like she's at a resort. Obviously this isn't proper sterile procedure, i've already been exposed to her and the room she was hanging out in but whatever. At least I didn't have an audience while i'm moaning and holding my chest.
After about 10 min (felt like 2 hrs) the ER doctor came in and explained that i was going to be given adenosine, a calcium channel blocker that is used to regulate heartbeat and get patients out of SVT. Then he explained that my heart rate should slow down rapidly then return to normal but in case my heart DOES NOT go back up, they place the paddles on me as a precaution. So in case my heart stops completely and doesn't return, they will restart my heart with the paddles. This was comforting and scary all at once.
Right before administering 6g of adenosine....
Mom: "will she feel this?"
Doc: "Oh yea... shes going to feel like an elephant is sitting on her chest for a few seconds when her heart stops"
Johnny blocks the monitor and holds my hand to ease my anxiety as I squeeze while my heart rate plummets from 210 to 0 in a matter of seconds. My heart rate returns but jumps back up to 130, 140, 150, 180.... etc back to 200's. The doctor waits another few minutes then says we're gonna try again with a higher dose. I bear down again as everyone but me stares at the monitor and my heart does the same thing, except this time my heart stops for a little longer...when it returns it does the same thing and my heart rate is back up at 200. The pain isn't getting better and this damn elephant on my chest (adenosine) Isn't working.
After the second attempt my doctor calls down to check up and requests treatment with a different drug called Amiodarone. The ER Doc assures me that I will not feel this drug and it is used sometimes when adenosine doesn't work. I am so happy that the elephant will not be returning. As they administer and all watch the monitors I start to feel like I can let go of my chest a little. The feeling of normalcy in my chest cavity returns and I can tell by the faces watching the monitor that this drug was doing the job.
I stayed in the ER for another 30 minutes while we discussed what the plan would be going forward. My transplant doctors obviously wanted me to be re-admitted but wanted me to be followed by the cardiac team. I was told while in ER that SVT's can be common following lung transplant or surgeries.. something my family and I were not aware of.
We were told that I'd have to spend a day or two in cardiac ICU before moved to a unit so I was wheeled up and as we were on the way my heart rate actually began dropping real low which was not ideal. They began racing me up to the ICU and gave me a shot of what I think was atropine or epinephrine? Not sure which was used for the temporary fix but it worked. I was monitored closely and given Amiodarone IV for a few days in ICU. The continuous ECG was left on me to record any abnormalities. The first night Johnny slept in the chair next to me and i had one more minor episode that was recorded. Day 2 in ICU we spoke to an electrophysiologist who explained that if my episodes continued, they would have to go into my heart and basically fuze a little piece between my heart and lungs to prevent arrhythmias. After a few days in the cardiac ICU, and after a few days of using bed pans while having the norovirus, it's safe to say I was ready to get the hell out of there and moved to a regular floor. I had no more SVT episodes and it seemed like the amiodarone was working for me so the doctors agreed to let me return to transplant floor for recovery and monitor me from there. I still wore the continuous ECG for the remainder of my stay.
For my last week in the hospital, the virus was finally near its end and my appetite picked up as well as my strength a little. I was able to walk the transplant floor again (with my walker at first) and it felt like I was starting all over again, but at least I was moving forward. The stomach pains were diminished for the most part but would still have an uncomfortable feeling while eating... but uncomfortable I could handle (That uncomfortable feeling when eating occurred until almost 3 months Post OP).
Once my stomach pain completely subsided, I began feeling it in other areas of my body. My scapula pain returned with a vengeance from being bed bound and id get shooting pains under my armpits at the end of my scars where I slept (side sleeper). I was at a constant battle mentally deciding how much pain meds to take because I wanted to get up and walk to build muscle, but the meds made me too tired. So i'd have to be in slight pain in order to get the energy to walk at least twice a day. Remember my arm that was swollen and hard from the IV during the first hospital stay?? Well that arm began swelling up again to the point that i couldn't sleep at night because of the pain from my elbow to my wrist. There was no position that could ease the pain and no meds that could mask it. My mom and I expressed that this time I would NOT go home this time until everything was checked thoroughly and I was completely comfortable. So the attending doctor ordered a full body MRI and ultrasound of my arm. Results came in the next day showing a blood clot in my left extremity and a small cyst on my pancreas. The cyst was shown in previous scans and wasn't concerning to them apparently so they assured me that no treatment was required for that but I would have to remain on blood thinners for 3 months to treat the blood clot when I return home. I was started on lovenox twice daily and then eventually after 2 months was switched to a pill so i didn't have to stick myself as often (between insulins and blood thinners). Now that I had results and a plan I was finally ready to go home and begin real recovery.
For 3 months I had to be monitored or not left alone in my house due to risks of seizures or complications from medication. I was released home on about 25 different medications, taken 4x/day. Filling my pill boxes are a weekly chore that was extremely confusing at first and my medical rituals for 31 years were completely changed now. I no longer fell asleep to the sound of my nebulizer or wore a vest that shook the crap out of my lungs for a half hour twice a day. I no longer had to stop at every corner to pull my oxygen cord or got whiplash when i wasn't paying attention. It was surreal. A few negative aspects of post transplant are the restrictions and precautions I must take due to a severely suppressed immune system. I had to stay in my house for 3 months, only leaving for clinic appointments. I had to avoid fresh fruits and vegetables and remain on a macrobiotic diet for 3 months to avoid fungal and bacterial infections. I also needed to wear a mask when around any visitors in my home or they had to wear a mask when visiting and visiting with children or babies was highly discouraged due to the spreading of germs. The anti-rejection medications also have some annoying side effects as well, such as tremors and memory loss... but despite everything, the positives always out weighed the negatives.
I have been attending clinic every week to get labs, pulmonary function tests and xrays to check on the lungs. My Pre-transplant Pulmonary function test that measures Forced expiratory value's (FEV's) have gone from 18% to 71% in 3 months time. I have had several bronchoscopies all showing no rejection so far which is amazing!! However, I recently at 3.5 months picked up my first virus since transplant. I contracted the parainfluenza virus, which i was told could stay in my system for a whole month and did show a slight decline in lung function back to 60's. This was so discouraging for me at first but my doctor assured me that it was just a little bump in the road and she is confident that I will regain and surpass my 71% once this virus has passed. So I am currently trying to find the balance between staying active (to keep muscle) and resting enough to let this virus pass.