Tag: IMC

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.

Finally!

I didn’t know what I was going to do, but knew I had to find a new doctor and fairly quickly.

I had heard about a heart fair at a local hospital the first Saturday in February, so about 10 days later. It was a free event, so decided I had better go check it out. During the interim, I began researching cardiologist through my insurances’ website. I would read through the minimal bios, and I found about 5 I wanted to research further. I spoke to the referral nurse at the office I was working, to get her opinion. She hadn’t heard of any of them before. So, to the computer I went once more.

After a little bit more searching, I zeroed in on one doctor. He listed his specialty as an Electrophysiologist (the “electrical” heart doc). Plus, he listed research and genetics as a subspecialty.

Hmmmm, sounding promising! So, I made an appointment. I couldn’t be seen until the end of May, but at least I had an appointment!

The day of the fair dawned cold and clear. I drove to the hospital, about 20 minutes from my house, and was surprised at how full the parking lot was already! It was a packed house!

I finally worked my way to the entrance, and started asking who I should speak with about HCM….

Two hours later (quite literally!), I finally found a nurse that had actually heard of the disease (nobody else had even heard of it before!), and directed me to go to the heart failure clinic at the other end of the hospital and downstairs.

It took me a while to traverse the hallways and the horde of people, but I finally got down to where I needed to be, and found blessed silence. There was me and one Nurse Practitioner down there. She asked if she could help me with anything, and I told her I was directed down here to see if this is where I needed to be. I was able to explain my history and story. She listened and then told me I was in the right spot!!

Victory!!

I told her I had an appointment with an EP in a couple of months. She told me yes, to keep that appointment, and that the doctor I had scheduled with was also part of the HCM team. But, I should really call this number (she handed me a business card with the clinics number circled) on Monday and tell them I needed to schedule an appointment with the HCM clinic.

Talk about relief! I wanted to cry right then and there! You mean, not only have you heard about this disease, but you have a clinic devoted to HCM patients?!

You bet that number was the first call I made Monday morning, and I got an appointment for 2 weeks later. I was excited and nervous at the same time. The next couple of weeks crawled and flew by.

My appointment day finally arrived. I did not know what to expect. I had already arranged with work to go in later that day, after the appointment, so I was dressed in my scrubs. I got down to the sign in desk, and was checked in with little fuss, as all of my medical records had already been sent over.

I was called back to the room by one of the medical assistants and vitals checked. She told me the pharmacist would be in shortly. Pharmacist? Really? And a few minutes later, he walks in. He goes over my complete medication list and asks me questions pertaining to their dosage and usage. About 10 minutes after the pharmacist leaves, in comes a Nurse Practitioner…..Jeff (he would become one of my favorite!).

Jeff spent a very long time with me…at least an hour. We went over my medical history, my family history, my medication, and we spoke about how I was feeling. Did anything cause my symptoms to worsen or to get better? Then he did a very thorough exam. He told me he was going to go out and speak with the doctor and that they would be back in a little bit.

This next part, lasted about 20 minutes. Then Jeff and a doctor walked in. The doctor told me I could call him Rami (as his name was just waaay too long and hard to pronounce!)

We covered a lot of the same ground, just not to the extent that Jeff and I had. Another quick listen and look. And then we sat down to discuss the upcoming plan of action.

What? You mean I actually have a say? How novel!

I left the clinic that morning very excited and happy! Not only did I appreciate the “team” approach, but to actually have medical personnel that understood my disease. Most importantly to me, they LISTENED to what I had to say, and appreciated my input into my care! I didn’t know what the future was going to hold for me at that moment, but I honestly didn’t care….because I had found a group that wanted to help me.

I was to learn a bit later, that I had stumbled on an HCMA approved Center of Excellence for HCM. What a HUGE difference in approach and care!

I made a follow up appointment for 2 weeks later, and so began the next leg of this journey…..