Reflections from a hospital room...

I am sitting in John's hospital room. He's sleeping. And I hope he sleeps a lot because he's been in so much pain the past few days. And he doesn't exactly sleep well even when he's not sick.

This kidney stone journey began Wednesday night. He mentioned having pain in his back. John does not like to complain when he doesn't feel good. He says very little and usually downplays everything. So when he told me it really hurt, I knew it did. The next morning he told me that it had gotten worse and he had thrown up. I never heard a thing. He doesn't wake me up to announce he's sick. He goes in the other room so he won't disturb me.

The pain continued to come and go yesterday. He'd be fine and then it would return. It would get intense, he'd throw up and then it would get a little better. But he knew something was wrong. So I went to the doctor with him to get checked out. Mike was sure it was a kidney stone, but assumed he would pass it. Mike gave him an anti-inflammatory/pain shot and an antibiotic and we went home.

This morning it got really bad after he was at the dealership. So he went to see Mike for another pain shot. It was obvious he was much worse, so Mike sent him for a scan and then John came home and laid down. At this point, I was under the impression that all kidney stones had to pass. So it hadn't crossed my mind that Mike might send him to see another doctor. I was riding the exercise bike when John poked his head in to tell me that Mike had gotten the results. There was a stone. His kidney was blocked and Mike wanted him to see a urologist just to be on the safe side because John only has one kidney.

Had I known this was going to happen, I would have been dressed and ready to go -- not working out on the bike. But John said he needed to go right then and would call me. I felt like the world's worst wife that he was going on his own! I immediately got in the shower and got ready, just in case he got worse and I needed to meet him there.

He called to tell me that he HAD gotten worse in the doctor's office and they wanted him to have surgery to remove the stone immediately. He said that since he only has one kidney and it was totally blocked, the doctor said it could be dangerous to wait. So he needed me to come asap because they were drugging him up and sending him to the hospital to be admitted. That was all I knew when I posted my initial messages asking friends to pray. I had no idea what the surgery entailed or how serious his condition was. I was just worried sick that his one kidney might be in jeopardy. I had no idea what that would mean for him.

I left several phone messages on my way to the doctor's office and I know I sounded scared to death; because I was.

They were hurrying us to get to the hospital, which worried me even more. I still didn't know what kind of surgery it was or what dangers they were trying to avoid. But when I finally talked to Mark, he explained what the surgical procedure was to me and told me that John would be fine. He would probably even go home tonight because this is normally a same day surgery. So I relaxed a bit.

It's too late to make a long story short. And I know you're only reading if you're interested in the details, so I will continue.

We got him admitted, had his blood drawn and went to the "holding area" to wait. We conversed with the surgical nurse, the surgeon and the anesthesiologist. There were some blood levels that concerned the doctor and he told me that John would probably not go home today because he wanted to make sure his kidney was fully functional before letting him go. The surgery took longer than expected. And when he came out, he explained to us that John had done fine and there was no reason to expect any problems. But the opening in his kidney (going into the bladder) was so narrow, it was hard to get the stone out. And John never would have been able to pass it. He explained that when we are forming in the womb, the kidneys start out as a unit, then divide. A lot of things have to happen perfectly in the process. He wasn't surprised to find a slight abnormality in John's one kidney, since the other one did not even develop. And the abnormality was that extremely narrow opening, which we would never be aware of unless a surgical procedure was done. It won't cause any problems under normal circumstances, but it needed a stent to make sure it stayed open while John heals. He had mentioned prior to surgery that he might have to put one in and leave it for three or four days. But he wound up telling me that he needs to leave it until June 8.

Dr. Cleveland showed me a picture of the stone and the narrow opening. No wonder those stones are so painful. They are jagged with very sharp edges jutting out. I can't even imagine one of those trying to go through a tiny little tube or opening. As it attempts to pass through, it is making little cuts and doing damage. That's what causes blood in the urine and severe pain. I pictured smooth little stones. Huh-uh. (I never knew any of this stuff and find it so fascinating.) One of the things that can happen after this surgery is blood infection. If the infection forms and gets into the blood, you will get very sick and can go into sepsis. So we had initially been told that after going home, if John began to develop any symptoms of illness, he needed to call the doctor asap. Well, after surgery, the doctor just decided that considering the one kidney, the stent, another chronic health issue John has, and the possibility of infection or abnormal kidney function, he just wanted to keep him here for the weekend. But he assured me that he expected John's kidney to be functioning fine tomorrow and there is no reason to worry that he won't be okay.

I asked so many questions prior to the surgery about specific blood counts and potential complications, Dr. Cleveland thought I might have a medical background. He asked, "What do you do?" I told him I am just a homebody and a good care giver. And after John was diagnosed with CLL two years ago, I have invested a lot of time in educating myself so that I can be the best possible patient advocate.

I have never talked about John's CLL on my blog. When he was first diagnosed, he wanted to keep it private. He does not like to draw attention to himself or worry people he loves. And he didn't want to have to talk about it. I think he still probably prefers not to talk about it that much. He just wants to live his life. But he has gotten less private about it the longer he's had it and he's told quite a few people himself. Of course, his family, my family and our closest friends have known for a while. But I asked him today if he really cared anymore who knew and he said he didn't. I asked if it would bother him if I mentioned it on my blog, and he said no. So that's the only reason I am mentioning it now.

About this time two years ago, we found out that John had CLL (chronic lymphocytic leukemia). We went to Mayo to have all of his prognostic markers tested. This form of leukemia varies greatly from one individual to the next. Some people have a very benign form of it and others, more aggressive. Some people never need treatment. Others need treatment right away. Everyone responds differently to treatment, etc. Treating it is an art rather than an exact science because it is so heterogeneous. It is incurable, but treatable. It is chronic, not acute. Of all the cancers he could have, I'm thankful he has one that does not threaten his life any time soon. But initially the diagnosis was still extremely difficult for me emotionally.

In fact, I can still get quite emotional if I allow myself to project into the uncertainty of the future. But I had to make a conscious effort to stop doing that and live in the present. Diagnosis or no diagnosis, I came to realize, none of us have the promise of old age. I don't know that I will be here tomorrow. I could be diagnosed with something aggressive and John might outlive me by ten years. I had to stop going to that dark place in my mind of possibly losing him. It was more than I could bear. I wound up with reflux and a mild case of shingles as a result of the stress that summer.

However, one day as I was praying and crying, I felt God impress these words on my heart: "You're grieving a loss that hasn't happened. I haven't taken John. He's not only alive, he's healthy and you have a wonderful marriage. Someday, you may have to grieve. But today is not the day." I took those words to heart. At this point, we are going on with our lives and living, as they say, our "new normal." I don't think about CLL all the time like I did in the beginning. But his CLL was definitely a factor in my initial panic as I headed for the hospital today. I didn't know what this might mean for his overall survival, if his kidney suffered damage. I was really, really scared.

I have made it my personal mission to protect that one kidney from too many scans. I remind the doctor every time a scan is necessary to order "no contrast" because it is hard on the kidneys. I don't leave it to the doctor to remember John only has one. I constantly remind him. So today, when I thought that kidney was in jeopardy and I couldn't protect it, I felt a slight panic.

In January of 2008, John's mom was also diagnosed with CLL. This form of leukemia often runs in families (though not always). I gently persuaded her to put herself in the care of Dr. Flinn, John's specialist. She lives in Evansville, but it's only a three hour drive and if/when she needs future treatment, I will want to take her and look after her. So it made sense to me for her to establish a relationship here. And she agreed. She comes down every three months and we go visit Dr. Flinn as a family. I sit in with each of them in succession, telling Dr. Flinn, "I will see you in the next room." They laugh and call me Dr. Shari.

Anyway, this post has become VERY long (even for me). But sitting here in this hospital room as John continues to sleep quietly, I have been feeling especially reflective. So thank you for reading (if you still are). I have wanted to talk about some of these things on my blog for a long time, but I wanted to respect John's privacy more. I am not a private person. I want to lean on my friends. So I was thankful when he said he didn't care who knew anymore this afternoon. Hopefully it wasn't just the drugs talking and he will remember saying that. : )

For one thing, one can never have too many prayers. Thanks again for praying.

Comments

Robin Hanloh said…
Wow, that was quite an ordeal - for both of you. I feel like a terrible friend. I didn't know this was going on until tonight. I had a hectic day and didn't read FB updates like I usually do. I am so glad John is recovering well so far. I will keep him in my prayers. Do you need anything? If there is anything I can do for you tomorrow, please let me help. Love and prayers.
Shari said…
Thanks, Robin.

Please don't feel like a terrible friend. I have friends in Murfreesboro who came to be with me (who were close by and didn't have to make a long drive). My pastor's wife came. My friends, Mark and Anita, were with me. And I had other offers. But I knew John was in good hands and once I completely understood what was going on and why they were doing what they were doing, I was okay. There may come a day when I need you beside me. But yesterday was covered. : )

I came home to sleep because I had not slept much the night before and John seemed fine. He assured me he would just be sleeping. Believe me, if I need something, I don't have a problem asking for help. One thing my friends know is that if I need support, I will communicate and not expect anyone to figure out what they can do. : ) I'm not shy OR private.

Your prayers are what I needed and you came through! I could only make so many phone calls yesterday and that's why I was thankful for my blog and FB. It sure makes getting the word out a whole lot easier!

Love you,
Shari
Anonymous said…
Shari~ As usual, you bring your heart to whatever you write. Prayers continue for John and the rest of your family. I have to tell you that it is a relief for you to be listening to God and relaxing in Him, as you well know, this wasn't always the case. Your growth and faith walk are amazing and I smile as I share in it. Take care...


Alice
justme said…
Shari, I'm so sorry to hear what you guys have been going through lately, but glad to hear John is recovering well. Adding my prayers for both of you, too.
Shari said…
Thanks, Alice. You are and always will be a very special person in that walk. I love you.
Shari said…
Sally, I didn't see your comment until after I responded to Alice. Thank you so much for your prayers!

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