Tag: OHS

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.

Cleveland Bound

The day finally arrived for us to leave for Cleveland. To say I was scared, would be a gross understatement! I was terrified! Someone was going to cut into my chest, crack my breastbone and remove a portion of my heart! It wasn’t where I was getting this done, but THAT I was getting it done. Cleveland has an awesome reputation! And the surgeon I would have, is top notch in what he does. Dr Afshar did his fellowship at Cleveland and knew the major players. So this did make both of us feel a bit better.

Lou also had one of his longtime customers living in Cleveland. So, he contacted Gordon to let him know of our plans.

We arrived in Cleveland and was met at the airport by the limo driver. One of the nice things Cleveland does for their myectomy patients, is provide a limo service from the airport to the hotel and then back to the airport when we were ready to leave. We arrived late at night….about 11pm, if memory serves (which has been hit or miss lately!), but our driver was there waiting with a sign with our name. We got loaded into the car and took off. I was so tired by this time! It was about a 20-25 min drive to the hotel. We had booked a room on campus so it would be easier to figure out where we were going in the morning…..my first appointment was at 0730 for bloodwork.

We got to the hotel around 1am, and the driver went in to get us checked in. He came back out to let us know that there had been a mistake and that there were no rooms for us available, and that we were going to be put up for the night in the other campus hotel. So, we drove over there, finally got checked in and I basically crashed. I did remember to set my alarm though! Ughhhhh, 6am came wayyyyy to early! I was exhausted and our day hadn’t even really started yet!

I hopped in the shower, and got cleaned up and dressed, while Lou got our suitcases all packed and ready to go. Although, we had no idea where we were going to be able to leave them, since we were checking out of this hotel. Got downstairs, got the checkout process done, and the front desk staff offered to let us keep our suitcases in their locked room across from the desk. Great! One less thing we were going to have to figure out!

We walked through the skywalk over to the main campus and tried to orient ourselves to where everything was. My schedule that day was very tight. First place we had to find, was the lab…where I would also get a chest xray and ekg. There were people there in red jackets that we found so very helpful! They were able to direct us to all the places we would need for the morning. Luckily, they were all within feet of each other. Bloodwork, ekg and chest xray complete! Now on the get the echo. Got signed in for that, and was able to catch a breather for a few minutes.

After the echo, I would meet with my HCM doc. And then from there, I would meet with the surgeon’s nurse and then finally the surgeon.

I have just got to say, Dr Thamilarasan is a wonderful doctor! He was the one that I was scheduled with to be my hcm doc. I love him! Very soft spoken and so very kind. He took the time to answer all our questions and address our concerns. He also went over the echo results with us…which weren’t very good. But Cleveland Clinic is rated #1 in the world for a reason….they are great at what they do!

We got a break for a while before I was to meet with the nurse. So, we headed to find something to eat, as neither of us had eaten much in the last 2 days. Finally, the time had come to head upstairs and meet with the surgical staff. Gulp!

We met with Dr Smedira’s nurse first. We went over history and medications and kind of paused when I mentioned I was taking turmeric for my arthritis pain. She asked when my last dose had been….I told her that morning. She asked if anyone had told me to stop it….No. Why would I stop it, its the only thing helping with my pain. She said she was pretty sure that it increased bleeding time, and that it should have been stopped about a week ago. She said she would have to get it cleared by the surgeon. I know my jaw dropped. This we were NOT expecting!

Dr Smedira came in a few minutes later and asked me about the turmeric. Then he said something that stopped me cold and I admit, I lost it! He said that I would have to come back in 2 weeks and then they could do the surgery. I told him that if I left, I wasn’t coming back! Nobody had told me anything about stopping drugs! He asked to see the packet that was sent to me. I brought it out and showed him. He looked all through it and said, kind of under his breath, “you would have to be a PhD to understand a lot of this!”. Once he finished looking, he asked if I had received a do and don’t list of medications. I told him what was in that packet is what I had received. It wasn’t in there. He was not happy….and neither was I. I had finally psyched myself up to get this surgery done, and now I am being told I couldn’t….because of some clerical error. Meanwhile, Lou was doing his thing and trying to find a work around. He asked Dr Smedira the bare minimum we would need before he would feel comfortable to do surgery on me….a minimum of 5 days. So Lou got a hold of his brother in Cincinnati and his friend Gordon. Gordon was able to find us a room on the outskirts of Cleveland that offered clinic discounts, and find us a place to rent a car. So, I guess we were going to be able to play tourist for a couple of days. Gordon came and picked us up at the hotel and took us to the other one he had found. Then he took us to pick up the car and we all went out to dinner. Gordon had his wife meet us. What a way to begin this journey!

We spent the next several days doing some sightseeing….which was nice. We were able to go to a park that was right by Lake Erie, took a small train ride and got to see some of the countryside, and we got to visit the Amish country. All in all a nice reprieve. But, all good things come to an end….and the day for my rescheduled surgery was upon us.