KH Update #11 Friday July 23, 2010

I’m so exhausted; I hope I’m able to write in this blog without passing out.

As I was writing the “title” for this thing, I noticed something interesting about the “KH”.  I had started abbreviating “Katie’s Heart” because it made more sense to do so, but I just noticed the KH could also stand for “Katie Hall”.  Ahhh….the interesting things that pop out at a person when sleep-deprived. ha

After her “procedures” yesterday, I went back to the “holding area” to wait for the doctors with her. Maybe it’s called the recovery area…not sure.  Anyway….Dr. Crespo came into her curtained-off little corner of the hospital and explained that when he did the heart cath, he found absolutely nothing. Except for the obvious, her heart is beautiful.  The heart cath helped them look for any blockages or other bad things, but hers was perfect!! yay!!

After he left, we were finally able to meet Dr. Clough. What an incredibly sweet man he is!! He reminds me of a sweet, old-fashioned watch maker from Denmark. He even made his hospital rounds in a suit and tie. He, too, was very pleased with Katie’s test results from yesterday morning.  He then explained about the two types of valves available. One is the metal valve, which makes a small noise when it’s operating, she’d be on Coumadin all her life, but it lasts almost forever. A pig—or other type of “organic” valve—is the other option. The organic valve doesn’t need Coumadin, is silent, however, it only lasts about 15 years.  She chose the organic valve.The thought of being on a blood-thinner all her life is awful to her.

Dr. Clough made the appointment for the surgery for August 10. He said his office will be contacting Katie shortly with more details. Yay!!!!! It will finally be done!!!!!!

KH Update #10 Thursday July 22, 2010

(Good morning Terra!!!!!! I just received your text as I was about to send you one. But, since you said you were going to read the blog….I love you and now you know the reason Katie and I were on your mind!! God is so awesome; I had just prayed, and then I get your text. Thanks!!)

My wonderful, God-sent cousin from Indiana (Terra!!!!) just sent me a text saying Katie and I were on her heart to pray about, but she wasn’t sure why.  I had just left the hospital chapel, where I had gone to talk and thank God, when I got her text. God is so awesome.

Katie is in getting her EET, the esophageal echocardiogram…not sure what all the letters are for, but as of yesterday it has been referred to as EET. Once finished with that, she will then go right in for the heart catheter. Between the two “tests”, it will give Dr. Crespo and Dr. Clough a better idea of what’s happening. It will be a few hours til I see Katie again so I’m in the cafeteria, happily writing.

Yesterday Katie and I were over here for the “pre-test tests”, but as it turned out it was just an extended version of paperwork, seeing some nurses, the Physicians Assistant, more questions, blood pressure, weight, more blood work, and……that was about it. They explained what was going to happen today, and that’s when we found out that there would be the heart cath in addition to the EET (or maybe it’s a TEE….no, I’d remember that because it would remind me of tea, which I love to drink. So, it must be EET, which sound like tweet, as in a bird, and I love the sound of birds in the morning….so…..)

This morning we had to be here at….drum roll please…..6AM!!!! AND….I was actually awake by 5AM!!!!! Luckily, we only live a few streets from the hospital.

I’m not worried that the doctor will find anything, since we already know what there is to find, but I’m concerned that he won’t find it as bad as we think it is and will say she can go another 6 months like this. Even though she has the option to do the replacement when she wants, it would just seem so odd for them to say it’s not any worse than it was in May and yet she’s been feeling worse. 

Katie and I have both said that we wouldn’t be surprised if they looked in there and decided it had to be done immediately.  It’s better to be prepared mentally for something like that than to be surprised by it.  Yesterday, the PA told us, as I guess she does everyone, that Dr. Clough could schedule it in a few weeks, next week, or Friday. Then she looked at us as though waiting for a stunned reaction, but she seemed pretty stunned when we said “OK.” I’m thinking she meets with a lot of upset people when she says that. However, we know it’s all in God’s time, so we are not really in charge anyway.

We have a good friend who is a doctor; she teaches at Boston University now, too (she commutes every week!!). In one of the previous blogs I believe I mentioned her…she was Katie’s mentor at church, I clean her house, our kids are friends/graduated together, etc. Anyway, Katie called her last night to keep her updated, especially about the added news of the cath. Katie felt so much better after talking to her. She explained everything to Katie, and even though we had been told the exact same thing earlier in the day, somehow coming from Mary it’s better. We are so blessed to have the people in our lives that we do.

Well, now it’s time to wait until the doctor sees what’s going on so we’ll know when the surgery is.

KHU #9 Monday July 19, 2010

Katie and I were talking just a few minutes ago, and she said this past weekend was a Gift. She was not tired, had a wonderful time, and felt more like her old self of a few months ago.

This morning, however, she said “Perky Catherine” has gone on vacation again, and “Tired Catherine” is back. Alex and I went out about an hour ago, and while we were gone she took a nap. It was only 11AM, but she was already tired….she had only been awake for a few hours.

I agree that God gave her a wonderful Gift of this weekend. A friend of hers and Alex’s from college came up for the weekend; Katie would have missed out on a lot of fun if she still felt as tired and weak as a few days ago.  When Marissa arrived Saturday morning, we all went to a Blind/Visually Impaired get-together at Philips Lake (between Bangor and Ellsworth). It was held at Camp Capella this year; since the beginning of the yearly get-together 12 years ago, it’s been held at Camp Molly on Chimo Pond.  The kids and I have been going since the weekends first started…..in fact, I was part of American Council of the Blind Maine Chapter when the idea was brought up, planned out, and acted on. Jack and Linda Beveridge were the true guiding forces behind making the annual camp-out work. They went shopping for ALL the food, secured the place to hold it, contacted the people for life guards, rappel masters, the bounce house for the little ones, etc. In fact, for the first few years, they were the ones who even did all the cooking!! It was only a few years ago that volunteers were brought in to cook so Jack and Linda could enjoy a weekend off, too. The get-together was changed from “Camp Molly” (a default name, since it was always called by the place it was held) to “Camp Jack and Linda Beveridge” out of appreciation and honor of the two who kept it running for so long.  When I spoke with Jack on Saturday, he said this is the last year he and Linda would be organizing it. It’s getting too big and too much of a hassle with paperwork, etc, so the Iris Network is going to take it over and run/organize it. He said the final straw was dealing with the YMCA about securing Camp Molly again this year; they weren’t being cooperative for some reason, so he had to find another place….Camp Capella, which is a camp for disabled children.  I’m glad I was able to be there for their last time of organizing it, as I was for the first one.

Anyway……Katie was able to “swim” in the lake (float on pool noodles, but at least she was in the water), see all our blind friends, and  have a good time with Marissa, Alex, and Bobby. We stayed at Camp Jack and Linda for quite a few hours, then we stopped at Stephen King’s house since Marissa had never seen it (she lives in southern Maine) on our way to get ice cream at What’s the Scoop, the best ice cream place in the world, right in Bangor. Yummm….

When we got home, Katie was able to stay up pretty late talking with Alex, Marissa, and me. Since Bobby’s parents were out of town, they had a sort-of sleep over at Bobby’s house (Katie stayed home to be more comfortable) (Bobby’s parents knew about the sleep over) (I’ve never put two parenthetical phrases together like that!! ha ha….actually, I guess I’ve just done three of those phrases together!!)

The next morning, Sunday, Alex was playing bass in the church praise and worship band, so we all went to church together….Marissa went with us even though she hasn’t been in a church for years and years and years….. Katie felt wonderful all day. We all went out to lunch after church (Bobby met us there), then we went back to Bobby’s house so Marissa could see his dog play with a basketball---it’s really funny. Bobby has a motorcycle, so while we were over there, he gave Alex more pointers on how to drive it. Alex is a very good driver; he took me for a drive from the garage to the end of the driveway. No public roads were used in the making of the Blind Driver….that’s illegal!!  So, he just stayed on the grass. We all had a nice time.

The best part, of course, was that Katie felt so good all weekend. This morning, however……

I’m now going to run out to the store and get my precious baby some Ramen Noodles. She wants some for lunch, and we ran out the other day. I love my sweet baby girl.

Continuing from previous post…..

I was so exhausted last night that at one point I fell asleep with my fingers on the keyboard; when I “woke up” a few seconds later, I had two rows of “llllllllllllllllllllllllllllllllllll” !! I deleted those, but in re-reading the post just now I see a lot of other errors. I’m going to keep them in there to point out how tired I was.

One of the blood tests was to check for a hormone that is present when a person goes into “heart-trouble”. She apparently didn’t have any present. Her heart flutters are persistent yet sporadic, so it stands to reason and Murphy’s Law that she didn’t have any during either EKG, yet she had some before and after.  Because she was hooked up to a heart/blood pressure/heart rate monitor, once she told me when she was having them I could see the line dip down each time. I have no idea how to read those things, so I had to wait to match up her telling me to seeing the line-dip.  I saw 5 within 4 minutes.  Of course, that was while we were waiting for the nurse to come back with the discharge papers.

It’s kind of like false labor…..all the symptoms are there, and you swear it’s time to have the baby, so the doctor is called, the trip to the hospital is made, and your mind is all set to have it…..then you find out it’s not the “real” thing.  I guess this is the same thing….Katie is getting more and more tired all the time, her heart flutters are real, and the pressure when she exercises is there; however, it’s not the “real thing” yet, so all the tests are showing a big, fat NO.

It will be interesting to see the results from the coming-up tests.  Before the ER visit, I thought for sure Dr. Crespo would look at her heart and say to have the operation without even going home. Now, I’m not so sure. Maybe part of it is the heat, but never having been affected by it before, it’s hard for Katie to tell exactly what’s going on.  I think everything is all tied together, but I’ll feel much better once we know something concrete.

God is in control…..I need to learn a little more patience!!!

Katie’s Heart Update #8 Friday July 16, 2010

I’m exhausted. It has only been since this morning that I wrote the last entry, and I already have something else to write. Hope I can make it through without falling asleep.

Because Katie has been getting so extremely tired lately, even after doing “nothing”, we thought it would be a good idea for her to call Dr. Crespo in case he wanted to move up the day of her test, etc. She called his office about 3pm; he told her to go tot he Emergency Room immediately, then he would take a look at the results. We went to Eastern Maine Medical Center, which is less than 5 minutes from our house.

We got there, checked her in, and soon she was hooked up to an EKC. They wound up doing two these, some blood work, and lots of waiting around.

After two hours of waiting, all the tests came back normal. I have no idea.  I’m so tired.  I really expected her to be admittied immediately. However, since no flutters, tiredness, etc could be found on the EKG, her blood, etc, they sent her home.

I’ll be so glad when next Thursday gets here. Hmmmm……….

Katie’s heart Update #8 Friday July 16, 2010

We went for the blood test yesterday morning. It was a “fasting test” so they could check “everything there is in your blood” as the lady who drew her blood said.

Katie is getting tired just going into her garden to pick lettuce. She told me this morning that she hopes it rains so she won’t have to water the garden; it’s tiring just standing there. She was doing so well for so long, and now it seems like the valve decided it’s had enough and is closing faster. Or, it could be closing slowly, but because of the high humidity the past few weeks, it might feel like it’s not working as well.  I don’t know. I can’t wait til next week to see what the tests reveal. I hope the surgery is going to be soon….it will be nice to have this over and done. Katie has said the same thing.

Katie’s Heart Update #7…July 14, 2010

I learned something very interesting this morning. The reason for the esophageal echocardiogram is because the esophagus is behind the heart, so by going through the esophagus, they will have a much better, much closer view of the heart. Isn’t that amazing? Who would have thought to go through the esophagus to get a good picture. Technology is sooooo amazing to me.

I have a friend who is a doctor, and she is also one of the people for whom I clean house. I had to let her know that I might not be able to get to her house next Thursday; it might be Friday instead. In talking to her, she told me the reason for the esophageal echo.

I hate the idea that Katie has to go through pain to have this done, yet the technology and God-given gifts of the doctors astounds me.

Tomorrow will be the blood test in the morning, then we wait until Wednesday for the actual “physical” tests on Wednesday and Thursday.

Katie’s Heart Update #6…July 12, 2010 Monday

Dr. Crespo has returned from vacation; his office called this morning to start setting up appointments for Katie. This Thursday she will have blood work to test for….ummmm….I’m not really sure. His secretary said something about lipids, or cholesterol. or….whatever. This was the second call of the day about all this, so my brain was trying to sort everything out.  Next Wednesday (21st) is her appointment at the hospital (Eastern Maine Medical Center) to have preliminary tests done on her heart, then the next day is another appointment at EMMC, only this time with Dr. Crespo himself, to have an Echo done through her esophagus.  Why they have to go through there, I have no idea. 

In addition to all of this, there are doctor appointments for Alex, my mother, and getting the dog to the beauty parlor! All within the next 10 days.  I’m going to be so busy….and nervous….for a while. I think lots and lots of prayer will be necessary!!

Waiting….Katie’s Heart update..July 6, 2010

Katie just called Dr. Crespo’s office to schedule the stress test. However, the doctor is the only one who can schedule the test, and since he’s still on vacation we have to wait….and wait. His secretary had sent him the notes from last week when Katie called, but we haven’t heard anything from him. The secretary is going to send him the notes from Katie’s call today, so hopefully he will get tell the secretary to schedule the test for when he gets back next week.

Thankfully, of course, Katie is not feeling worse than she is. But I am on pins and needles waiting for something to happen. It’s another extremely hot day today (84 degrees at 10:15 am). I don’t think she’s going to be taking a walk again in this heat. The whole East Coast is in the middle of a massive heat wave; it’s in the triple digits in the Maryland/DC area. Glad we’re not down there!

I should number the titles of these posts about her heart journey. This is #5, counting the “original” back in May.

I feel like I should be doing something else while we are waiting, but I can’t figure out what it is.  Maybe God’s getting me used to having more patience.

Another “Katie’s Heart” update; July 5, 2010

We called the doctor’s office today to schedule an appointment for the stress test, but they were closed due to yesterday being the Fourth of July (Sunday); everyone moved their day off to today. I’ll call them again in the morning.

Katie said she felt really rested when she woke up this morning, and most of the day she felt pretty good. However, as it got later into the late afternoon, she started to feel slightly tired again. She went for a walk around the park to see if she could do it, but when she came home she said she had to slow way, way down, and almost rest a few times.  She is a very fast walker; she has taken walks around Farmington for the past five years at college, and has never slowed down. She also had a heaviness in her chest that she has never felt before, which went away once she slowed way, way down.

The humidity was extreme today, so that didn’t help matters. Today’s weather was one of those days where the warnings come out for people with any type of breathing or heart problems. So I know that didn’t help the situation but she has never been affected by the extreme humidity before.

I’ll be so glad to call the doctor tomorrow and get this whole process started. At least it will make me feel like I’m doing something to help her. Right now, I feel so useless and helpless.

I love you Katie!! MOM

Katie’s Heart….update July 3, 2010

My Katie-girl is getting tired a lot more than normal now. Not to the point of exhaustion, but an overall tired. She was making dinner yesterday (which was delicious!!), and she told me she got tired just mixing something.

So, I think the time is coming a lot faster than we originally thought. If we haven’t heard back from the doctor by Monday, I’m calling the office and setting up an appointment for the stress test, or whatever he will want. I hate sitting around waiting. Being pro-active is much better suited to my personality.

Tomorrow is our big church picnic; Alex is playing Bass in the band…yay!! The whole service will be held outside, which is the first time we’ve done that. Should be great!!!

Update on Katie’s Heart~~July 1, 2010

I just re-read the previous entry about Katie’s heart, and I definitely think I was right about her operation being sooner rather than later. She called Dr. Crespo’s office today to let them know about more, and more often, flutterings, and she is also starting to feel a slight “pressure”  in her chest. She says it comes and goes, but it is something she hasn’t felt before. She is also getting tired a lot more often. The doctor is on vacation, but his secretary will send him the information and get back to us about what he wants Katie to do. I have a feeling he will order the stress test, then possibly another Echo, and we’ll see where she stands.

It’s such a wait-and-see time right now. I hate that she has to go through this, but she has the best attitude. As we were talking this morning, she said that even though she’s facing something huge, and something she’s never faced before, she’s not nervous about the outcome. She has such incredible faith.

God’s timing is amazingly awesome.  She was in Eastport (Maine) all last week with All Soul’s Church on their mission trip and she felt fine.  She’s home less than a week and all this starts up. Of course, I was not worried with her being down there, either, as there are many doctors who go on the mission trips, so I know she was in good hands. However, if she would have started the symptoms down there it would have taken her and at least one other person away from the good they were accomplishing over there (it’s Downeast, so both “down” and “over” are the correct compass points from Bangor).

I wish the doctor’s office would call tomorrow and let us know what’s happening so we can get her scheduled for……something; either the stress test, the appointment with the surgeon, an echo…..anything just so I feel like I’m doing something instead of waiting.  Well, I guess I am doing something in that I’m already looking into getting her involved at the YMCA aquatics heart fitness class….along with praying, praying, and more praying. 

I don’t know if what I do would exactly be classified as “praying” in the traditional sense—it’s more like an ongoing informal conversation with God as opposed to a “traditional” prayer. I don’t know if I even know how to have a traditional form of prayer. I view God as so much a part of me and such a part of my family that to think of being formal with Him is strange. That certainly doesn’t mean I don’t honor and respect Him, because I absolutely do, but I love that I can speak to Him at all times.

Katie, I love you so, so, so much.