Tag: firing

Month Two

Yesterday marked two months with my remarkable new heart. It has been a time of trial and error; tests, tests and more test; a time for new goals and achievements. This has also been a time of a lot of ups and downs. Thankfully, mostly ups.

I was able to begin a formal outpatient rehab program! That was exciting for me, as anytime I exerted with my old heart, I would go into even more arrhythmias than normal. So being able to be monitored while exerting helps reset my mindset. It has been so very nice watching the monitor and just seeing sinus tach and not tons of multifocal pvc’s! Today at the red center here in the hotel, I was able to go 42 minutes and peddled 7.4 miles. Doesn’t sound like much, does it. But considering 2 months ago, I had a hard time walking to the mailbox without stopping several times, it’s a huge improvement. I go go outpatient rehab m-w-f and still go to inpatient on Tuesday and Thursday. It forces me to get out every day. I am now walking to and from the hospital before and after my appointments. Again, it’s not a huge distance, but it is more than I would have been able to do before. THANK YOU DONOR!

I also had my fifth and sixth biopsies. So far, all my results have been 1r. So low grade infection that will continued to be monitored, but no changes in my medication routine. I have had weekly blood work. Unfortunately, we have had to do some constant adjustments with my tacrolimus, as my levels continue to jump all over the place. I’ve been told that this is very normal as my body adjusts to my new heart and my body settles in with the new drugs. Because of the high dose of prednisone and tacrolimus, I do have the shakes. It especially rears it’s head when I use fine motor skills. Trying to drink from a glass or write anything with a pen has been challenging, to say the least. I’ve been told, it will improve as I start decreasing the prednisone. And hopefully, that will happen next month when I come in for my next biopsy. I can just see myself standing in front of a patient to draw them, and my hand shaking holding the needle!

During this past month, I also met with a few new team members. I added a sleep disorder doc and a pulmonologist to my ever growing list of specialists. I pushed for both, as I’m still having problems with my lungs and my sats dropping,especially at night and when I am under exertion. I will be doing another sleep study this coming week (so not looking forward to that!). So will see what those results will show. Did I get rid of the central sleep apnea as my heart failure doc was hoping? Luckily, the testing will be done here at the hotel I am staying at, but up one more floor. So at least I won’t have to travel far, nor figure out how to get there! Sleep continues to elude me….whether from drugs or breathing issues, I guess we’ll find out next week.

I also met with the pulmonologist last week. He ordered some breathing test to measure my lung capacity. Good news is, I’m not making things up! Bad news is, I have a paralyzed left diaphragm. It has actually caused my breathing tests to be about 40% less than they were 18 months ago when I was testing to get listed. Also, when I lay flat, my numbers are greater than 25% less than when I am sitting. Not good for either. I know for any open heart procedure, they must cut the phrenic nerve (the nerve that works the diaphragm), and this is my second open heart surgery. So I asked if this could be the issue. He said more than likely. However, I was having issues with my sats dropping starting about 6 weeks before I got my call. Since I never had the appointment with a pulmonologist before transplant, we don’t know the reason. It could have just simply been that my heart was failing faster than we thought and with my blood pressure being so low, I just wasn’t being perfused appropriately. We may never know. He did have me meet with a respiratory therapist to give me a new little toy to play with. This one is called an inspiratory muscle trainer. It is supposed to help strengthen the surrounding muscles to help with breathing. Kind of assisting the diaphragm in its job, as it hopefully begins to recover. I asked if this was a common occurrence after open heart. He says for him it is, but this is what he does, so he sees a lot of it. But, in the overall scheme of things with all the surgeries done, it’s relatively rare. Lucky me! He did say to continue with rehab, as movement will definitely help.

So, as of right now, I am scheduled to go home next weekend..lord willing and the creek don’t rise! But of course, long term weather shows that there is supposed to be a huge winter storm hitting pretty much our whole route home!

Lou has been working hard on getting the house as germ free ready as possible. He will be working with a plumber next week to get a UV water filtration system installed, as we are on well water and cannot guarantee how safe the well water is. Even taking a shower could be hazardous for me at this juncture. He converted our covered back porch into a temporary storage area, later to be our eBay room. And yesterday, we got a new washer delivered. Our old one was about 15 years old, and had some mold around the gasket. Lots of changes and lots to learn!

Thank you to donors and their families everywhere! Especially thankful for my donor and their family as they go through this year of firsts.

Follow Ups and Firing

I was finally discharged! I couldn’t get out of there fast enough. But now comes the hard part, living and not having answers.

I still wasn’t feeling very good. My blood pressure was super low, and I would get very dizzy when standing. I would have to steady myself before I could get moving. I could still feel my heart playing jump rope in my chest….not the most comfortable of feelings. I tried researching like crazy, but coming up with nothing to explain what had been happening. No real family history that I was aware of at this time, other than a lot of “heart” problems on my dad’s side. But all of that was due to atherosclerosis, and my vessels were totally clean. No, it wasn’t that. The only other history I knew of, was my maternal grandmother died in her sleep while at home. She was in her 50’s. And her only medical history that my mom knew about was high blood pressure.

One day, I might get answers. But not today…and not for the next 2 years.

My first follow up. I had repeat blood work, and noticed my BUN/Creatinine (kidney function tests) was starting to rise significantly, meaning my kidneys were in the beginning stages of failure. I mentioned this to the doctor, and he just told me we would monitor it. He was pleased with the progress I had made thus far, and said to follow up in 3 weeks. He did some minor medication tweaking.

I started back to work, and it was difficult. The dizziness was getting worse, and I had absolutely no energy. After arriving at work and during my lunch time, I would snooze because I was so tired. I would find myself having to hold on to walls as I was walking out to get patients. I also began getting increasing (what I now know to be) ocular migraines. It was hard to read the orders during these times. The really bad ones could last for 1/2 hour or more, and would completely drain me of what little energy I had.

But life goes on, and you deal with the cards dealt. I learned to adapt to my new normal.

My next follow up went as much the same as the first….follow up in a month. No dosage changes at this visit. But did say that we might do some more tweaking at the next visit.

The next follow up did not go as the first two had. Unfortunately, my insurance is attached to a mail order drug company called OptumRx (bane of my existence!). According to Optum, we are only allowed 2 refills at a local pharmacy for the same drug. Okay. I got the original prescription filled, and then tried to do the 2nd refill, and it got denied. WHAT?!?!? This would be the first of MANY phone calls to Optum. I found out that they consider the FIRST fill as a refill! So, since I had already filled one prescription twice, they refused to fill it again. I was down to less than a weeks worth of pills and a mail order fill on a new medication would take about 2 weeks to get to me. Armed with this new information, I went into this appointment thinking I could possibly get a couple of weeks worth of samples to tide me over..as long as he didn’t change the strength. And, I knew samples were available because I worked at other offices that had them. This drug is not cheap! To pay out of pocket, would have cost me over $300 for a month’s supply. I didn’t have it. So, stupidly, I asked for some samples. He laughed at me….I mean, actually LAUGHED! Then said, “Do I look like a pharmacy?” My jaw dropped. I couldn’t believe his rudeness! I told him I couldn’t afford to pay out of pocket, the drug was too expensive. What he said next was the straw for me….He said, “Your husband’s a lawyer, he should be able to afford it!” My mouth closed up tight. I didn’t say another word. He told me to follow up in 6 months. I walked out of the office without making an appointment. I was livid! I started crying on the way home. Everything just hit me. It was too much.

First doc fired!

I got home and told Lou what had happened and that I would never go back to him again. And so begins the search for a new cardiologist….