Tag: tansplant

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.

PRE-SURGERY

I had run out of all options. Surgery was the only thing left for me. Dr Afshar and I met to discuss what we needed to do to go forward. I spoke with Lisa at the HCMA. As of right this moment, I was considered a straight forward myectomy case. Myectomy translates literally into removal of heart muscle. I had to make a decision on where and when I wanted to get the surgery. Myectomy is typically not considered an emergent type of surgery, like you would for stents or bypass. So, I had some time to weigh all the options. Everyone felt I would do just fine at IMC, but I had some reservations. I discussed these with Dr Afshar.

First off, myectomies done at high volume centers (meaning they do a lot of them every year) have much better outcomes. Take too little muscle, and you either get no changes or very little changes in improvement. Or, you might become obstructed again. Take too much, and you destroy the heart.

Next, I would be placed in the care of nurses that, quite honestly, did not understand HCM. Remember, I had to do a lot of educating while I was hospitalized just weeks earlier. And I wasn’t too confident in the care I would be receiving.

On the flip side, it was close to home, and I trusted my HCM team. Big decisions to be made. Dr Afshar and I met to discuss and weigh pros and cons. I voiced my reservations, and he totally understood them. Then I looked him in the eye and asked him which he would choose. He said, if it was his sister, he would want her to go to the best facility she could. Cleveland Clinic.

It was decided. Cleveland Clinic was in network for my insurance, and the paperwork was started. I got a phone call a couple of days later to go over my health history. A week later, I was scheduled. I wanted to be able to do as much of the pretesting locally as possible, to help cut the costs of hotels and such while in Cleveland. Cleveland would only allow me to do a right heart cath. All other testing would be done at Cleveland in the 2 days prior to the scheduled surgery. I had 2 months in which to mentally and physically prepare for this invasion. But, I was so looking forward to feeling better!

I got my right heart cath scheduled, and showed up at the appropriate time and place. Light sedation and the doctor was ready to go. About 40 minutes later, I was being wheeled into recovery. They went through my wrist, so I had this funky pressure contraption that had to stay on for about 2 hours to make sure I didn’t bleed all over the place. All I can say, is thank goodness for iphones and ipads! At least I had something to do!

The doctor came in about an hour or so later and started talking to me. I couldn’t quite get what she was saying, so I stopped her. She looked at me and asked if anyone else had spoken to me yet. No, just the nurse that came in periodically to release the pressure on my wrist. She said, you are being admitted. WHATTTTTT?!?!? No, I’m not! Why would I need to be admitted?? She said, there is something else going on and we can’t figure it out yet. We need to do some more testing and contact Cleveland. You no longer have a gradient.

I was flabbergasted. How could I not have a gradient when just a couple of weeks earlier, I was measuring at 70 at rest and 99 provocable. It made no sense. I said, no, I am not being admitted, I’m going home. I need to meet with Dr Afshar and figure out what is going on.

I was finally released, and a followup was scheduled. Later that afternoon, I got a call from Dr Afshar’s partner. She asked if I had ever had problems with oxygenation before. No, not ever. She told me that my sats had fallen drastically during the procedure and that I would need to go on oxygen at night. Can this get any worse?!

So, oxygen was my new friend at bedtime. I met with Dr Afshar, and he told me he was glad I was going to Cleveland. My case had become too complex for them to be able to handle. He had been in touch with Cleveland, and they wanted a specialized echo to confirm their suspicions about what was happening. So, we scheduled an echo for a couple of days later.

The echo confirmed. My mitral valve had pretty much blown up. Which meant repair or replacement. Oh gosh! I had no desire to get a replacement and be on coumadin the rest of my life!!! I was living a nightmare.

I still had not told too many about my condition. I’m a pretty private person. Besides, this was my problem, not anyone else’s . But, I had people start coming up to me asking what was wrong. I kept being told I either looked pale or gray. It was getting to the point, I was scared to drive. I would fall asleep driving. I could not keep my eyes open. Work was hard, too. Again, I had a very difficult time staying awake. So, we modified my work load. I wouldn’t draw, but I would check people in and put their orders into the computer. Ok, fine. I spoke to Lou about my fear of driving. So, for the last couple of weeks leading up to surgery, Lou drove me to work and picked me up at night after work. I typically slept while he drove. I was also falling asleep at the table while working on ebay. This was not a fun time for me.

Because we had no money, it was decided I would fly to Cleveland to get the surgery and then fly back home. Lou would stay to take care of the horses and ebay. Until all this started happening. As I was slowly getting worse, Lou decided he needed to be there with me. So, I called my travel agent to see if she could work a miracle for me. And sure enough, she was able to not only get us another flight out, but Lou was on the same flights as me!

The day had arrived. We were leaving for Cleveland. And, hopefully, I would get my life back!