I'm back.

Tuesday, November 14, 2006
Hi all-
Well, another unwanted chapter has come to a fortunate close. CC came and picked me up today and brought me home. I'm THE most blessed and fortunate husband without question. I'm so thankful, it's hard to write.
CC has shared with me the love and care from so many of you, it is hard to think of how to thank you for your caring and support. I guess it's easiest to say that I know I'm better because of your prayers and support and love and I'm indebted to God for the large, extended family he has given and built for me and us over the years. It's so good to be home.
To keep my head together while I was in the hospital, I decided to write and keep my mind on the here and now so I wrote about what happened and kept a daily journal as best I could. I'm pasting that below and you are welcome to read it or blow it off; it was necessary for me to do to remind myself of what reality is and was. I was telling CC on the way home that because I'm feeling better that I am having to accept that feeling better does not equate to healed and that a new chapter of our lives has begun and I just have to accept it and eventually embrace it so I can move forward.

So, below is the hospital journal. It's a LONG one so don't bother reading if you bore easily.
From here out, I will keep up as much as possible on a daily basis.
Peace all-
love, wade
~~~~~~~~~~~~~~~~~
Life is moving along at an unremarkable pace and then, all of a sudden, life changes and changes dramatically and as if that isn’t enough of a challenge, it changes without you blessing or foreknowledge. Who would have thought I would be writing this on a laptop from a bed in the Telemetry Unit in Kaiser Hospital. I sure didn’t.

Wednesday, November 8, 2006
This last one began at work, in a staff meeting regarding benefits updates and changes. Fortunately for me, work allowed spouses to attend this particular meeting, not just because I don’t do well in retaining that type of information to share with my wife afterwards, but fortunate because she was with me when this attack happened. I had been sitting through the meeting, next to CC (my wife), and taking pathetic notes and watching my wife take all the info in, when I began to sweat like crazy again (this sweating has happened before) and just like that I was irritated. Earlier, just prior to the meeting beginning, my boss walked over to me and put his hand on my shoulder and noticed it was cold and then put his hand on my head and remarked I was “cold as death” and asked another co-worker to feel my head and he remarked similar. Shortly thereafter the meeting started and my wife arrived. As the meeting concluded I was feeling somewhat light-headed and as I pushed my chair away from the table, I realized I was pushing harder with my hands and arms then my legs and thought “uh oh…”. When I stood up I had to hold the table for balance and could tell that I had lost most of the feeling in my feet and my lower legs. It had started again.
CC took hold of my hand and we walked, or better said she walked and I leaned, towards my office. As I moved, I was aware of decreased sensations in my legs and feet, so much so that I felt as though I was walking with someone else’s feet and legs. It was very difficult to walk. I was having to shift my hips in such a way as to propel them forward in kind of a swinging motion. Very strange and foreign feeling accompanying my underlying panic.

Once we got to my office I remained standing while leaning against the desk until CC brought my chair around from the other side of my desk and I sat. She gave me the dose of liquid potassium I had in my office but it didn’t make any difference, though granted, it was only a half dose. She left me to go get the van and in what I think was just a matter of a minute or two, she returned to help me to the car and I was having great difficulty in seeing at that point and she literally carried me (my arm over her shoulder) and got me to the van. She later told me that some of my colleagues were outside and saw her carrying me and came to help, one of them offering to drive my truck back our house while she drove me in the van, an offer she accepted. I have had some attacks in the past where my truck remained at the office and we had to ask for help to get it home or in one case she road her bike to work that night and brought the truck back home. I was and am very grateful that this was not going to be the case in this scenario.
When we got to the house, CC went in and grabbed the secondary dose of potassium and gave it to me but my condition didn’t change for the better. Very shortly thereafter the symptoms had progressed and I was having difficulty breathing and swallowing and couldn’t hold my head up or keep it still. I could hear but not see much except the dashboard as my head moved forward to back as we stopped and started at stoplights and stop signs. CC said she felt she could get me to the hospital in faster time than it would take and ambulance to be called, arrive and leave with me. I don’t know how long it took us to get to the ER, but she said she kept me talking to her throughout the ride; asking me questions and such. Once we got to the ER docking bay, she saw and asked two paramedics who were standing outside the ER top help get me into the ER itself. They grabbed a wheelchair and then got me from the car and into the chair and wheeled into the ER check in. I’m guessing we got fast-tracked but don’t know for sure, either way, I was wheeled in to the triage nurse who asked CC a couple questions and asked me a question and I couldn’t answer. She then felt my arm and then head and said I needed immediate attention. CC said we were quickly moved into one of the ER “rooms” and I have recollection of a bunch of movement all around, a huge oxygen mask being placed on my face, and CC said a doctor came in very shortly thereafter and checked me out and read the paperwork she’d brought explaining what HKPP is and what has taken place.
The next several hours are a blur to me which is probably just as well; it’s not necessarily the memory I want to keep.

Once again, my aunt and uncle showed up and came to my bedside to let me know they were their and to give their love. I think my uncle ended up spending the bulk of the 6 hours they stayed in the waiting room while my aunt stayed with CC and watched me like a hawk. I have only some blurred memories of her there and I can remember hearing my uncle’s voice saying “we’re here with you”. I wonder if they will ever know the level of investment that makes in me.

CC said that they hooked me up for an ongoing EKG and began to watch the heart rhythms carefully and got some labs sent off pretty quick and at some point before getting the labs back, gave me some IV potassium combined with a pain killer that was ineffective. She said I began to have a very difficult time with the pain in my arm due to the IV and she had them shut it off. Shortly after that I she said she spoke to me and asked me questions but that I didn’t answer her and was staring past her so she ran and got a nurse who came back and initially thought I was fine since my eyes were open but she told him otherwise and someone else came in with the lab result that my potassium was 7.5. I was told that things become dangerouse when the level is 5.5 or higher. Judging by their reaction, this was a battle I was quite apparently loosing. The excessive potassium will cause a stroke or heart attack. One of the nurses came in quickly with insulin and glucose and got them into the IV to counter-act the high potassium and after a while I was able to speak and can remember seeing CC and the nurses and feeling as though a truck had run me over. Apparently, insulin and glucose when used in a particular way can cause the body to “dump” potassium fairly quickly and since I was already neck deep in an attack, they had nothing to lose by this tactic.
Also during this time in the ER, my blood pressure was remaining low as it had been a number of times in the previous few days and that condition combined with the potassium got me admitted to Hotel Kaiser, once again.

Thursday morning, November 9, 2006
Somewhere in the midnight to 2:00 AM time frame I was moved from the ER to the ICU where they could monitor my heart more directly. Every three hours I was visited by someone in a smock or scrubs either bringing something in a syringe or taking something from me in a syringe, or so it seemed. The ICU room was fairly large in size and the wall that faced the nurse’s station was just a huge glass partition with a large sliding glass “patio door”, more or less. Their rule was that if you had a question you were to buzz them by intercom and not go out to the nurse’s station. Very controlled atmosphere. I don’t remember much at all from that room. CC was there until around 2ish in the morning and then she went home. I believe my bro Kev (Kern) came to see me in there but I can only recall his clothing was all black, I think. He stayed for a while with CC and me and then had to take off. I vaguely recall CC bringing the kids to see me in there. I don’t recall seeing anyone in there but the admitting doctor, CC (and the kids once) and Kev.

Friday, November 10, 2006
Around 3 AM this morning the nurse came in to let me know that they had opened a bed up in the Telemetry unit and that I would then be moved there. Around 5:30 AM the male nurse came in and got me into a wheelchair and moved me over into the Telemetry unit. They called and left a message for CC on her cell to let her know I’d been moved. A new doctor came to see me today, Dr. Hussa, who took a very distinct interest in my situation and condition. He agreed with the diagnosis of Hyperaldosteronism and though he hadn’t seen an HKPP patient prior, he felt I matched the criteria. Prior to seeing Dr. Hussa I had seen CC and during her visit, she had reminded me that Dr. Stewart had scheduled a CT scan for the end of the month to ascertain whether or not there was a tumor on my one of adrenal glands and asked me to ask the doctor to move the CT scan up to this visit. When the doctor and I spoke this morning I asked him if he would move the scan time frame up to today or tomorrow, if I’m still in that long, and he said he’d see what he cold do.

I tried to walk and found my legs not so cooperative or supportive, so I used a walker for the day and will likely use one tomorrow as well. It is so frustrating; I feel betrayed by my body. After my surgeries in ’96 and ’97, the walker was the means to being able to walk again, so pride had no place in the recovery and in this case it is the same; pride has no place in the recovery and I have to do what I have to do to get better, with or without a walker.

In the later afternoon, the nurse came in to say that I have a CT scan scheduled for 7 PM tonight and not to eat or drink anything else until after the scan. So that’s a mixed blessing; I get to have the scan moved up but cannot eat or drink until after the scan. While Cc and the kids were there, the nurse brought in the liquid I was to drink; 1½ cup at 5, 6 and then at 6:30. I made it through the first two hours but could not do the 6:30…This stuff tasted like luke warm, room temperature radio active old faucet water. It was WORSE than liquid potassium. When it was 6:45, a nurse came in to take me to Radiology for the CT scan. After getting into the room, I was asked to get onto the table, which I managed, and laid on my back the technician came over, raised up the table to machine height and put what I thought was the iodine in my IV, since the CT has to be done with iodine in your system mixed with the liquid yuck you have to drink prior. When I asked what it was, he said, “Just a regular saline flush to get the process started.” I had a brief moment of panic and asked him how much saline did he use and he told me the minimal amount and I quickly explained me reason for the concern and he felt badly but said he didn’t see anything in my chart saying anything about no saline (this is a moot point since the saline was used, now it is just a prayer and hope that it does not trigger another episode, which praise God, it did not.)
We did the test and came back to the room where CC had just returned to bringing dinner! I told her of the saline and we just hoped together that nothing would come of it. Sometimes an episode can happen up to 72 hours after the trigger itself, so it’s a waiting game now. The true highlight of my day was to see CC and the kids (Big Kev came by too and he is/was a blessing as well. He’s family)


Saturday, November 11, 2006
I’ve managed to walk now with the use of a cane to help my right side which seems to be losing the battle of muscle in this fight. The Physical Therapist came in today to help me start getting back into mobile shape. She gave me some tiring exercises to do on my legs and on my right shoulder. Tiring, but cool. Now I can walk the halls with the use of the cane and strengthen my legs and shoulder while I’m in bed. Hopefully I will be walking without the cane soon and can eventually get back to some degree of normalcy.
My boss, Pastor Chris Alford, came by to talk a bit and pray with me. He shared his heart and concern for me, in particular as it pertained to my working and such. He felt I returned too early to work the last time I had to deal with an attack, and I hesitantly agreed. It is worthy of note though, that the pressures of work build quickly and with great measure because my staff consists of just Rob (Fisher) and me and when one is gone it leaves much work on the shoulders of the other and I was made aware of those stresses while I was convalescing and felt the faster I return, the sooner Rob receives relief. Perhaps the outcome of this will somehow bless the church and Rob, though I cannot see immediately how as of yet.
We are praying for God’s complete healing in me, but that is impressively NOT up to me and God knows and has reminded me of His hand in my life; the miracles upon miracles, the moments of Divine insight and direction, Angelic protection, Holy patience and undeserved grace, mercy and compassion which have all been the building stones in my life. I can, and perhaps at some point will, recount the number of times He saved me from certain death and logical harm. When He placed his Touch upon my head and healed me of my back pain on May 4, 1998. He owed me nothing, just as He owes no one, yet he chose to pity me in my painful and pathetic state. It somewhat makes me want to simply say, “I’m all out of miracles…I’ve used them all up” as if I had any stored up somewhere. I don’t want this, but who am I to say it is not mine to have?
Okay, I wipe my eyes and continue. Back to the “here and now” and leave the “what will be” to Him.

I love what I do for a living. I especially love my co-workers and especially those I work with so closely. I fear the uncertainty of having a solid handle on my disease; if I work in a building alone or I suffer an attack, I’ll be hard pressed to get help in time and will put someone I work with in the very hard and terrible position of having to summon help for me and feel some responsibility for that which they have no control over. Now, I realize that reads rather dramatic, but consider what Mark from Facilities had to deal with when I collapsed in the Rec Hall and what possible baggage it offers to his memory. Though I’m so very grateful for his friendship and help that afternoon, I don’t feel that I gave him a choice. All that is to say that I have to be more responsible and accepting of my circumstances and conditions, which has to include the possibility of suffering an attack at a very inopportune time.
Okay, so with all that being said, there’s not much more to the day; no more drama or pain.
After CC and the kids left, I asked for my pain medicine and planned to go to sleep. Unfortunately, my mind had some unrelenting fears it wanted to court but not divulge, so I have spent the next several hours wondering if I would see my wife and kids again, “will I die tonight” and other wonderful topics worthy of a sensational pity/fear party for one.

Morning cannot come too soon.

Sunday, November 12, 2006
I woke up in a better frame of mind today; less stressed and worried. I don’t know the cause of my fears from last night, but at least they aren’t present today.
CC came this morning and sat with me while we waited for the doctor to come by. During the time we waited we talked quite a bit, discussed our current situation with my work, her work, insurance and stuff like that. We got out for a couple of walks around the unit floor which is relaxing for me; just being with her changes my mind-frame and my spirit and joy comes back into my heart. While we continued to wait, she encouraged me to take a nap and I slept for a good 2 hours. I had no idea I’d sleep like that. While I was falling asleep I suffered several body jerks/muscle spasms which can be very disturbing, like a jolt or how’d you’d jump if startled. My issues with them besides the uncomforting of the jolt and the quick, snapping to consciousness, are that they often hurt my shoulder, arm and/or neck when they strike. They seem to hit each time I go to sleep no matter where I am, whether it’s a nap or a night’s sleep.
Anyway, after waking from the nap, we asked the nurse to page the doctor and shortly thereafter he came in and spent a good 15 to 20 minutes with us explaining what he believes has gone on and where we are now. I’ll try to bullet-point these, though CC probably has the more accurate recount of that conversation:
It is probable that I will be hospitalized until Tuesday or Wednesday
My blood pressure is becoming less volatile and more controlled
He believes that the Spironolactone has made a significant difference in my BP and what is being attempted is a rapid change-over from my “normal” blood pressure medicine to more calculated amounts of the Spironolactone.
He believes (as CC has from the beginning) that the blood pressure is directly related to the Hypokalemia and he explains that when the blood pressure is low, the body tries to kick up the pressure by pushing sodium and such into the blood and pushing out the potassium
He believes that even the slightest amount of saline could certainly trigger an attack duo to the evident fragile balance with my system.
The CT scan shows no tumors, which is good, though it has little to do with the adrenal glands continuing to screw up in my system, meaning that a tumor would have immediately explained the hyperaldosteronism but the lack of seeing one simply means that the adrenal glands are malfunctioning for other reasons, genetic or otherwise and still have to be controlled medically.
He anticipates and is recommending that more invasive tests be done to ascertain more specifically how the adrenal glands are functioning, one of which is running a very small tube into the adrenal vein and taking a direct sample of its production to determine the level of imbalance that they are responsible for.

After meeting with him, CC left to go pick up the kids and a few movies for us to watch as a family (Joshy or Missy sits beside me on the bed and cuddles up pretty close while we watch the movies. Missy seems to be very much the “Daddy’s girl” at this point and the cuddling helps her to relax from her current fears that I won’t be coming back from my stay here.) And CC got a couple for me to watch on my alone time.
Oh yeah, CC got an email from the neurologist we have been working with and he plans to come visit me tomorrow. That should be a good and hopefully informative meeting.

So that’s today, Sunday day and evening…

Sunday night/Monday morning
It’s now Monday morning, November 13, 2006 at 12:41 AM. About 11:00PM I asked the nurse for a sleeping pill since I had just previously taken some pain pills for the shoulder and lower back pain, and I wanted to go right to sleep…Well, I went right to sleep alright, right straight into a dream that was eerily familiar but moving in fast motion and no matter what I did in the dream, I could not slow my vision down or mellow out my mind. It was nearly hallucination in it’s realism. Everything felt like it was unstoppable and I tried to wake up a few times but couldn’t get out of the dream. Somehow, on one more attempt, my eyes opened and I saw the window blinds that face the hallway in the unit and I snapped back to reality that I was in the hospital and not in that horror-land that I couldn’t get away from, but I also realized instantly that it was the sleeping pill that brought it on and that I cannot go back to sleep until the pill has left most of my system. So, what am I doing now? I’m typing this at 12:57 AM, watching American Idol Rewind and just finished eating a banana, an apple and 2 mozzarella cheese sticks.
I believe that “regular” or un-induced nightmares are fairly easy to exit in most cases, meaning, I can identify them as a dream and can close them out, BUT nightmares that come after taking some kind of medicine or sleeping pill are painfully hard to close out or wake up from. This one I just had contained so many familiar faces and people that it blurred reality and fiction as quickly as it started and I couldn’t tell is I was awake or asleep most of the time. Wow. It was so hard to exit. I’m going to try the whole “sleep-thing” again now that it is 2:00 AM and see what happens.

Monday, November 13, 2006
This morning came with no after effects of this morning’s mind-games, thank God (truly).
CC came right after work this morning. It is remarkable to me how she brings light with her wherever she goes and coming to me brings me peace and rest, just seeing her.
We talked more and made some phone calls for hooking up with Kaiser’s Nutrition Department and Member Services. We also put a call in to Aflac regarding my disability. While she was here my neurologist came in to see me and it was a very helpful meeting with him. He is certain that I have two very rare conditions (Hyperaldosteronism and HKPP) and feels it is likely that I may have issues with Hyperkalemia as well as Hypokalemia, in that I suffered from excessive potassium in my system as well. He feels that my system is fairly unstable versus a normal body which manages itself chemically and such internally. Mine does not manage itself and has become increasingly unstable requiring closer attention to my wellbeing. He completely agrees that I must get the Cardy meter even if Kaiser won’t purchase it. He feels it will be a critical part of our puzzle in keeping me in balance. He was also concerned at my excessive sweating (I now have had to have my bed sheets changed 3 to 4 times a day due to my sweating through the linens. I have had to change gowns 3 to 5 times a day as well since I have been getting up and around on my own) and cold limbs, but doesn’t know what that is at this point. He also let us know he had a lengthy conversation with my Nephrologist, Dr. Stewart, who has been managing my BP meds. We are very encouraged by this because we believe one of the real keys for getting through this faster than not, is to have the doctors in communication with each other and trying to work together.
Shortly after he left my new doctor, Dr. Mitchell, came in who took over my care from Dr. Hussa, who worked the weekend. We got caught up with him and he noted that I’m now one just TWO BP meds; Spironolactone and Atenolol. I came in taking, like 5 or something like that. Anyway, he expects me to be able to leave tomorrow or Wednesday if my BP remains in the “normal” range. Light at the end of this particular tunnel! The meeting and introduction was very cool for both CC and me. We are making progress.
After he left, CC left to go and pick up the kids and grab dinner and bring them all back to see me. While she was gone, my Physical Therapist came back and we did some exercises and went for a walk, WITHOUT the use of the cane, thank you very much. When we returned, Sara Dills was at my room door and she and I talked for 15 minutes or so before she had to leave. It was SO good to see her and have a visitor. She’s one of my colleagues at work, with whom I work with each weekend and for all dramatic events and such (being that she’d the Director for Worship Arts). It was great to see her. She was unaware of what happened on Wednesday even though she attended the same meeting that CC and I were attending when this whole thing began.
When CC returned with the kids, she brought me a couple more movies and what Missy had said she wanted to bring me today; a frozen yogurt. I enjoyed about a third of the yogurt and began to get cold so I stopped eating it and decided to go for a walk to warm up…Wrong call. Though nothing substantial came of it, due to my sweating and remaining in bed, my gown was again wet and the combination of having eaten the frozen yogurt with the cool air on the gown began to give me shivers. I took the blanket CC had brought me from home and she helped me put it over my shoulders and we began to walk and I made it a short distance when I knew I was going to have chills shortly, so we returned to the room and I put the blanket around me and a nurse came in to change my bedding. Once the bedding was changed, I got back into bed and had the blanket still around me and in a matter of a minute or two, my body temp was back to normal and rising again. I’m like my own microwave oven…
I watched one of the movies she brought the day before, “Click”, which ended just as she and the kids arrived today. The second movie she brought “Underworld: Evolution”, was one I had asked for and though most of my friends now wouldn’t watch it and I KNOW CC would never watch it (it’s about vampires and lycans i.e. werewolves), it touches that part of me from my youth that really enjoyed D&D and fantasy role play. The movie is shot incredibly and it is impressively produced and directed. I was going to watch it tonight, but thought better of it since I had so much fun with the nightmare from a previous evening.
It was a quiet night after the family left and I called it a night after watching some more TV.

Tuesday, November 14, 2006
I just finished watching “Underworld” and the doctor came in to let me know that my potassium has remained between 4.5 and 4.7 and that I am taking 50mg of Atenolol morning and night and now on 100mg of Spironolactone morning and night and THAT’S IT! How COOL! He said that I can go home today! I asked for the caution light numbers for the BP and he said if it goes into the low 100’s or above the 140’s. Also that if it does go there, to just head in to Emergency because it is very likely that I will end up there shortly thereafter. We MUST get the potassium meter ASAP to avoid as much of this as possible. With it, we can monitor my potassium and better know when to administer it and when not to take it. If an attack begins, theoretically, CC can get a reading from me and know within a minute or so as to my K+ level.
I’m so pleased to close this chapter of “medical visitation”.
It’s my intent to post this on the Blog site that I know has been vacant now for a week, so that folks can learn of what has gone on these last 6 days and I won’t have to email everyone the same thing or bother folks with it who don’t necessarily want to know.