Category: faith

The holidays have come and gone and once again I was blessed with being with my family another year. I can tell however, that my illness is starting to take a toll on me, physically, emotionally and spiritually. Things that I once used to look forward to and get so much pleasure out of planning for have now become harder to manage and seemed to have lost their joy. I’m sure some of this is just from age and my kids are now all adults and none of them live with us anymore but some of it is because it takes effort. And more than just physical effort. There are days that I’m just “spent” and I feel like I have nothing left to give.

Jan 8th – my next Cleveland Clinic appointment day. I managed to loose the weight I needed, yes, even over the holidays! I told you they aren’t the same. I’m anticipating Dr. L will be presenting my case to the transplant board this time since I lost the weight but I have been able to function a little bit better at home since starting all of that pulmonary hypertension medication. However, Dr. G also said that she never recommends someone postpone being listed just because the medicine is working so if he says I’m ready I guess it’s a go. BUT, to my surprise, he doesn’t think I’m ready. He seems quite pleased with the difference he sees in me from our August and October visits to today’s visit. Come back in April, try to loose a little more weight because it makes recovery easier and call if anything changes drastically.

Jan 12 – It has gotten colder so I had retrieved my longer winter coat from our “old home” on the 9th. Luckily for me I found the long-lost pulse oximeter that I wear on my thumb in it’s pocket and had charged it over the weekend. I decided I’m gonna wear it for a few days to see how I’m doing since it’s been so long since I’ve had it available and I know I’ve been coughing a lot just getting to and from my car over the last few months. This particular morning by the time I got to my car the pulse ox was vibrating, I was 79% with my oxygen concentrator at the highest setting. I quickly try to snap a picture of it to show my husband. I’ve been telling him for months that I thought I needed to think about going on a medical leave because I didn’t think I was getting enough oxygen but I also “knew” that Dr. L was gonna put me on the list when I saw him. And that was going to be my excuse to take my leave. Because I was just having a hard time making the decision for myself. Well, I sent that picture to B and his instant response was “time to go on leave”. Thank you. Yes, he finally understood. And don’t get me wrong, I’m not blaming B in any way. I just felt like I needed his backing and now I finally had it. After speaking with my manager that day I put in for my FMLA request that night to start that coming Thursday. I wanted my last day of work to be on Wednesday when my middle one, K, was already off. It was already going to be a difficult day for me and I didn’t want to make it any harder. Wednesday came and honestly I had such a peace about me that day. I think I knew I made the right decision for myself, finally. And I did it just in time. Thursday hit and with it came sub-zero temperatures and they stayed for a couple of weeks. I wouldn’t have been able to go to work in those conditions anyways. So I send up a prayer of thanksgiving every day for a while because I know that wasn’t MY timing.

But unfortunately because of those cold temperatures I didn’t get over to see my dad that weekend like we had discussed the Sunday prior. We had a good visit on the 11th and that would be my last memory of him, him waving to me as I closed the door. He passed away on the 19th, in his bed, just like my mom. And I know this is going to sound cliche but I knew it was going to happen. I was awakened around 2 am that morning and I knew he was going to pass. I was expecting the phone call around 2:30pm, just enough time for my sister B to get to his house from work. I had forgotten that it was a holiday for schools, MLK day, but that didn’t stop the phone from ringing. It was around 3PM. I remember I even told her that I was expecting her call because God told me today was the day. My world crashed AGAIN. I grieved for my own selfish reasons but my soul was content because he was no longer in pain, he was no longer lonely, he was no longer heart-broken.

In the week after my Dad passed I was awakened every night around the same time, between 2-3 am. You see, I was arguing with God. He wanted me to do something and I wasn’t comfortable doing it. I would get up and go sit in the living room and talk, argue and plead, sometimes out loud. And I resisted until about 5 minutes before my father’s funeral began. I prayed to God to give me the strength, courage and words to do His will. You see, my Dad wanted a particular song played at his funeral and God wanted me to make sure people heard and understood my father’s last message. My father had told my SIL, M that he wanted “Far Side Banks of Jordan” played. Not your typical funeral song. And that was the point. Most people wouldn’t know that song and I was to make sure they didn’t just listen and say “oh, that was nice”. NO, there was a message there for someone. Someone needed to know what Dad was telling them. I won’t write the lyrics here but the Jordan is the River Jordan, mentioned in the Bible over 175 times. In this particular song, it’s meant as the entry into the final promised land and Dad wanted us to know that he will be waiting there to greet us when we get there. My Dad spent the last 40 years of his life telling people about the Trinity, he planted seeds in every one he met and he wanted nothing more than to know that his children and grandchildren knew Christ before he died. Well, that didn’t happen and I think this was his last plea.

I didn’t have a speech planned out, and I’m not a public speaker by any means, just speaking to a small group makes my face turn bright red. All I had was the lyrics to the song in a screenshot on my phone and a quick Biblical description of the symbolism of the River Jordan that I brought up right before going to the microphone. I honestly don’t even know what I said because the words just flowed. They came from God and I was just the vessel. But I do know that He touched every heart in the place. And the strength I had to get through a room full of crying loved ones was beyond anything I could do on my own.

I know most of this post has nothing to do with my illness but it has everything to do with my faith. This event was a spiritual revival for me. Remember how I had said at the beginning that my illness had started taking a toll on me spiritually, that’s because I wasn’t walking in faith. I haven’t been for the past 30+ years. Sure, I know where to turn when things get hard but what about the other times. And now I’ve lost the two people that were where I went when I had spiritual questions or needed spiritual healing just by sitting in their living room and listening to piano hymns for an hour while I visited. It is time for me to start living the faithful life I’ve pretended to live but where do I start?

Well it took until the beginning of February to get the antifibrotic medication and I’m scheduled at the end of the month for my lung transplant evaluation. In the meantime my middle one interviewed and accepted a position in my office – I think it was a God-send for both of us. Her for more money without needing to decrease her time away from her daughter and me because I won’t feel quite so bad asking for help. Not that my co-workers wouldn’t help me, I just feel weird asking them. (It’s a “me” problem).

The lung transplant evaluation itself is a two day process after an initial phone interview and a Zoom introductory class with a social worker for the program. My first day is Feb 26th. First up is lab work – and LOTS of it – I’m pretty sure it was like 23 tubes, not exaggerating, I wish I would have taken a picture. I think I was more nervous about this than any other part. Luckily, the lady was very good and only had to stick me twice because my vein “dried up” with about six vials to go.

Next was a battery of imaging studies – ultrasound of the liver, chest x-ray, high resolution CT scan of my chest, echocardiogram and vascular studies of my neck and both lower legs. I think we went to three different building at the Cleveland Clinic on day one and I’m exhausted and ready for a bed! We booked a night at the InterContinental Cleveland since neither of us were familiar with the area and it’s currently winter in Ohio – this hotel is connected to the hospital campus by the SkyWalk – a raised, indoor tunnel system between the buildings. As convenient as it was, it was expensive and wasn’t the best experience. Our first room key didn’t work so B went to the lobby to get it resolved but in the meantime my portable oxygen concentrator battery is just about dead. I’m tired, I’m sore, I’m hungry – and now this – all I can do is sit on the hotel floor outside the room and wait, because at least sitting my oxygen needs aren’t as high. Finally we get to a new room and try to order room service and the room phone doesn’t work, luckily there’s a phone in the bathroom. I get our meals ordered and take a long hot bath to try to unwind from the long, grueling day. While in the tub I bring up the picture of the “Jesus Calling” devotional pictures I had taken the night before as I had not read them and I just wept.

Room service arrives a little while later, the food was excellent and the set up made me feel quite posh. Yes, it doesn’t take much for a simple girl like me. Haha! Now to get some much needed rest to tackle day two.

Day 2 consists of a FULL set of PFTs – I absolutely HATE the full sets, they are so difficult. Along with my first official 6 minute walk test – basically you walk as fast as you can for 6 minutes and they measure the distance. These are all for baseline information. The rest of the day is basically meeting different members/departments of the team – social worker, pharmacist, nurse transplant coordinator and finally the dr. The social worker goes over a lot of personal/family interviews, provides a lot of information and informs us that we should have approx $35K set aside for expenses. My head is spinning already!

The nurse transplant coordinator does most of the history taking for the physician and also provides some information. Then the pharmacist comes in, goes over the medications that I’m currently taking and what I will be taking after transplant. Luckily, I’m already on many of them. Finally we meet with Dr. L, he will be my transplant evaluation dr. He doesn’t actually perform the transplant but he oversees all of my testing and he is one of the ICU physicians. After reviewing everything from the last two days it looks like I will be an ideal candidate whenever the time comes that I NEED new lungs. But best to keep your own lungs for as long as possible because getting someone else’s lungs is not an easy process and there are no guarantees. And the rejection/failure rates for lungs are much higher than other organ because they are the only transplanted organ that come in contact with the outside environment. The first year is the most critical but the Cleveland Clinic is known to be one of the best in the nation. He states that 80% live at 1 year out, about 50% at 5 years and 30% at 10 years. He then says but keep in mind that the Cleveland Clinic also performs transplants on patients that other programs turn away so those numbers include patients that otherwise would have no alternatives. He also informs us that getting a second lung transplant is an option should I go into rejection/transplant failure and qualify. This does help relieve some of the anxiety because right now all I’m hearing is “yeah, you can go thru all of this but your lifetime is still limited”. Which I know, I know, there are no guarantees for any of us but hearing it makes it reality.

Should I choose to pursue transplant I am to return in about 3 months for more testing and will need a mammogram and colonoscopy completed back home. I will also need to loose about 15 pounds – oh OK – and how am I supposed to do that when I can’t exercise but I have a zoom appointment with a dietician in a few days. OK – well, that was A LOT to digest and now I have homework – reading all of the materials, completing my healthcare power of attorney paperwork, asking family members to consider being caregivers for when B needs to return to work and making more appointments. To say I’m overwhelmed is an understatement