Month: January 2020

Grieving

I am going to deviate for just a moment from my story. This post showed up in Facebook the other day, and so aptly describes what those with an affected by chronic illnesses may go through. I have also copied what I posted on my wall. I hope you take the time to read through this post. And I ask that you remember before judging, try to put yourself in their shoes. You do not know what they may be going through at the moment. Please feel free to respond, copy and share.

Please excuse the F bomb. Micki D (whomever she is) nails it!


This is so very true. Right now I’m so wrapped up in what I’ve become BECAUSE of this stupid disease, it’s hard to be and stay positive. I get the “But you don’t look sick” line ALL the time. It’s hard to look beyond the moment, yet you want so much to “see” 5 years from now and you are “healthy”. I fought tooth and nail to avoid surgery at all costs. I spent 2 years trying anything I could. Ultimately, it was surgery or die for me. Now, I realize it isn’t quite that dramatic for everyone, but it was for me….literally. But…again for me….it was short lived. I felt great for about 6 weeks, the right back down the tube. So the highs were high, until it was once more taken away. And now, here I am staring transplant in the face. I’m being told “you should be happy!”. But I’m not. Don’t get me wrong! Please! Am I grateful? YOU BET! Am I happy? NO!
I am grateful for the technology that allows such precise medicine to happen. I am grateful for my team of doctors, whom have kept me alive the last couple of years. I am grateful for my heart failure doc for his persistence in pushing my listing through the committee. I am especially grateful to Lou for standing beside me through all of this and through all my ups and downs (which there have been plenty). We tend to forget our loved ones while we are going through this process. Yes, we are in the middle of it, but they are going through their own type grief process.

But, I mourn the loss of the life I once knew. Looking back, I can see where I had been symptomatic for a long time, I just didn’t know what it was. And, I mourn the life I will have. I know it doesn’t make sense…..but I don’t know who I am supposed to be. Even though I fight my constraints in the here and now, I know and understand this person. I don’t know how to not to be sick!
But mostly I mourn the person who must die in order for me to live. It saddens me. But, I am so very grateful to their and their families’ willing sacrifice.
So yes, I grieve what I once was, what I have become and what I am to become…..

I just want to say one more thing about this. I don’t think people realize the enormous expense of having a chronic illness. I know my expenses over the last 6 years have surpassed a couple of million dollars. Yes, I have insurance, but it doesn’t cover 100%. And I can look forward to even more expenses after transplant! So, it’s hard….mentally, physically, emotionally and financially. You never know what the other person is going through. So please, everyone, be kind to one another!

Surgery & Post Surgery

It was here. Gulp!

I had to make a phone call the night before my surgery to learn of my scheduled time. I was first on the docket and had to arrive at the clinic by 0530.

After my phone call, Lou and I went down the street to a local diner and had a “last” meal. Between my nerves and my disease progression, I just couldn’t eat much at all. Back to the room we went. I was given instructions to shower the night before and day of surgery with a special antiseptic soap. So, I did that, and we settled in for a long night of waiting.

The morning came quickly with the night dragging on for ever. (Explain that one!) But arrive, it did. Another shower and dressed, and we were out the door and on the way to Cleveland. Gordon would meet Lou there that morning so that he could return the rental car. I got all checked in and then was instructed to go to the surgical suite. Signed in there and sat in the waiting room until I was called back to get prepped. I was terrified and excited all at once. I was anxious to finally start feeling human again!

Prep took about 1/2 hour or so, and then Lou was allowed to come back and wait with me. We were there for about 15-20 minutes before the entire OR crew came in for their “huddle”. This is where they get together with the patient and confirm demographics, patient and procedure. This is also where the attending surgeon can either confirm the procedure and route of going or sometimes, even do some minor changes in technique. All confirmed, and it was time for me to be wheeled into the surgical suite.

I remember, it was so very cold in the room. I spoke briefly with one of the surgical interns (he was going to be assisting in the surgery) and I remember asking him to take pictures. Unfortunately, that didn’t happen, darn it! But that is about the last thing I remember until I was waking up in the ICU.

Oh my, was I in pain! And not my chest, but my back! It was in horrible spasms! I was extubated and I remember trying to roll over onto my side. All of this is fuzzy, but I do know they finally allowed me to get off the bed and into the chair that was in the room. This is where I stayed for the next day and a half.

Blood, blood, blood. It seemed as if they were drawing blood every 5 minutes. Luckily, they were able to get it out of the arterial line that was still in my neck. I remember the room was so bright. Lights on all over the place. And it was so very loud. Lots and lots going on all the time. I know that they kept me in the ICU a little bit longer than normal, because they couldn’t control my blood pressure. I wasn’t sleeping (how can anyone with all the lights and noise!). But I do remember one time my second night there, where I was finally able to catnap.

One of the side affects of one of the drugs I take, is night terrors. Lou calls them my screaming mimi’s. I don’t get them frequently, but I do get them. So, I remember during my catnap, I started screaming. The nurses came running in and woke me and decided I had had a bit too much pain medication (the button was in my lap), even though I hadn’t pushed the button in hours. So, that was taken away from me. And I heard them laughing and saying I was gorked out of my mind as they were walking away from me. I then remember I started crying. I was overwhelmed and discouraged. I just wanted to get out of there and get home.

Finally, the next day, I was able to be moved into the step down unit. Yeah for me! My blood pressure was doing much better, my heart rate and rhythm was looking good and I was able to keep down a couple of peaches.

It was nice being in a regular room. Of course it was busy during the transition, but finally…peace and quiet. I was finally able to actually try and get some rest. I didn’t have to worry about trying to get up (I still had the foley catheter in) and I couldn’t anyway. At least not without help. They had the bed alarm on. I didn’t realize it, and of course, I tried to get up on my own! Oops!

Life kinda started settling down a bit. As much as it can settle while in a hospital, anyway. I had a great team of nurses, and I absolutely loved the Surgical Nurse Practitioner that took over my care while on the floor…..Agie Stimjanin. He was great! Very attentive and welcoming. It made being there so much better.

The next day, I was able to get the foley removed and the alarm was taken off the bed. I was FREE! Well, as free as I could be in the hospital LOL. I was able to get up and walk around. And it was hard! But, I did it. I was walking laps by that evening. I would never win races, but hey….gotta start somewhere. Also, during this time, the respiratory tech came in and taught me how to use the spirometer. I was instructed to do this as much as I could during the day. The goal was to keep my lungs open and functioning to help prevent pneumonia.

The morning of the 4th day, Agie came in and asked me if I was ready to go home. I got up and started packing my stuff away. He laughed. “I take that as a yes!” Agie said to give them a couple of hours, but he would go out and start writing up my discharge orders. WOOHOO! Even more freedom! We weren’t going to go far, as we were not scheduled to fly out until Sunday (this was Friday). We already had a room booked just a couple of miles from the clinic.

I was grateful for everyone there at the clinic, but even more grateful that I was one step closer to being able to go home.

But, as goes for my life, things are never as simple as they seem……..