Monday, August 31, 2009

Bill is now about 2 1/2 weeks post op. It was sort of been up and down for awhile after getting home. Things seem to have evened out now. He did an 8 a.m. blood draw at a week & a half post op. He’d withheld hydro for 48 hours and his cortisol was still at 22.1. Normal is 4-22. It probably shouldn’t be that high this soon after surgery.

He has had relief of some symptoms but I wonder how long that will last.

The other night he asked Jess to fill his pill box for him as it can really take some concentration. There are several different meds, some to be taken more than once a day and at certain times. When she came to the hydro she asked if she should put it in with his bp meds. I said I’d ask him to be sure I knew how much he was taking. I forgot to ask. So he hasn’t had any hydro since Saturday around noon. I don’t think he really could tell a difference. When we figured it out tonight, we talked about it and he decided that for now he’s not going to take any. If he feels like he needs it, there’s plenty here.

I’ve always kind of hoped that he wouldn’t have his numbers drop too low for too long. We know he has a tumor on his left (I believe) adrenal and the other secretes extra aldosterone. A few months ago when I asked Dr. F how soon Bill could have a BLA after his pituitary surgery, he said that he’d be having a unilateral. But what made me nervous was that he couldn’t tell me which adrenal would be the one to come out. If there is no cure from the pit surgery then a BLA for him would be the next obvious step.

I’m really afraid if he just has a unilateral adrenalectomy, that he would end up back in surgery a few months later to have the other adrenal gland removed. That would be a real waste of time I think. Not to mention it would be an additional surgery and additional time off work, etc.

Wednesday, August 19, 2009


Poem by Steve Owens or here

The photo was taken for an article in the Hays paper about a year and a half ago. Read article here.

Steve added the poem later, it wasn’t part of the article.

The gal from internal meds was just in the room. She thinks that probably one of the meds they are/were giving him is what has caused his terrible headaches. She said it is a side affect. I’m guessing I’d rather have high bp than take a med that would give me a headache like that.

She was talking about his blood pressure readings for the last few days. She mentioned what it was last night. I then said (in a regular tone of voice) “did you know that the reason he wasn’t discharged this morning was because it was too low and Dr. McC wasn’t comfortable with that.” I only said it because I didn’t know how fast info from one doctor was available to another doctor. My gosh…….did she let me have it –“nobody called me, etc. etc.” I quit listening and went back to reading on my laptop. I have no idea what set her off but I sure am glad she’s not a nurse, then we’d have to deal with her on a regular basis. Wow! I usually don’t get that kind of response from people.

Been an interesting day so far. Bill is getting very antsy. I don’t blame him.

So, there has been a change of plans this morning. Things were getting started to discharge Bill. But then they looked at the bp and it was in normal range. I guess that’s what the internal meds department was shooting for but Dr. McC never intended them to get it that low. He’d told me somewhere around 150 or so would be good since has has been so high for so long. Dr. McC isn’t comfortable discharging him with his bp that low. I understand that. I also find it amusing as all he has heard for a long time is that it is too high.

Anyway, he won’t be getting out of the hospital today. Poor guy. He is taking it better than I would of expected. I hope they know that we will make our flight tomorrow afternoon.

It’s just sort of frustrating. I’m by no means a doctor but even I know that dropping a person’s bp from 230/130 to 117/?? in less than a week, is a little tough on the body.

And of course one more day in the hospital probably means one more visit by the endos. Of course this time they can’t say a thing about his bp, which seems to be all they are concerned about and that isn’t even their department.

Tuesday, August 18, 2009

Yesterday Bill got moved to the neuro floor. Almost seemed like a hotel after being in ICU. For the most part he has been feeling fine so is going a little stir crazy being in the hospital.

Last night I met a gal from the Cushing’s support board. Her 16 yo son is having surgery tomorrow. It’s always nice to meet people from the boards. In fact I have met four this trip. I’m not sure if I’ve mentioned that I met Steph & her husband before she was discharged. A very nice gal. She’s home now. I came close to meeting another girl and her mother but it never worked out. I went by her room once and they weren’t there. Then I had a message from her mother but I was sick. They were leaving the next day. I should call and let them know I wasn’t just ignoring them.

Bill called this morning (now that he’s out of ICU he can have his cell phone) as I was getting ready to go to the hospital. He sounded awful & very upset & I was really afraid that he had had a stroke or a heart attack. They had been getting ready to start the discharge paper work and he had a terrible headache. So bad that he was not thinking clearly. The lights were hurting his eyes even after putting on his sunglasses.

He had me call him when I got to the hospital and he came out to meet me. The headache had really scared him and he was upset that it kept him from being released today. When we got back on the floor I talked with his nurse. She told me the doctors had decided that they were dropping his bp too fast. Gee, what have I been saying since last Friday.

He is being released tomorrow. He’s really looking forward to that. Me too. I must say that I have noticed a change in him. While he is getting cabin fever, it doesn’t seem any worse than someone else would get in the same situation. If this would of happened before his surgery, I really don’t know what he would of been like. I do know he would of been very angry. So some positives already.

Sunday, August 16, 2009

Things seem to be going pretty good with Bill. He’s on no pain meds at all but says that the terrible all over pain that he has been experiencing for some time is gone. That’s a relief. A few months ago he did start taking pain pills but had to go off them a couple of weeks before surgery. He usually has a very high tolerance for pain so I know it’s been bad lately if he was taking pain killers. I’m just happy that it’s gone. Hope it stays that way.

He’s on solid food. He’s had all IVs removed and also the catheter. He did say today that he was almost cool. That’s pretty unusual for him. Oh, he also got out his nose packing. His bp is still up & down. I think they will move him onto the floor tomorrow. I had originally thought that he might be discharged tomorrow but now I don’t think so.

I’m not sure if they have done an a.m. cortisol on him yet. If not, maybe they are waiting until he is on the floor. I don’t get much info from the nurses.

I was only with him for a few hours this afternoon. When I got there he was asleep but I could tell that he had been up and sitting in the chair.

I slept a lot today and am feeling some better. Although, I know how this typically goes and it seems to me that I should get a whole lot worse before I get better. I hope this time isn’t typical. My abdomen is still very hard and hurts sometimes, so I don’t think this attack is over yet.

Saturday, August 15, 2009

Bill was doing fairly well today. I don’t think he took any pain meds. They did give him potassium again today. His has been staying at about 3.8 which is on the low end. Today they were pumping it into him faster than usual, I don’t know why, and he started having a lot of pain right where the IV was inserted. He said it felt like the needle was burning hot. I could tell it REALLY hurt as he was hollering. They unhooked that IV and adjusted the dose and said that it could cause that pain when administered that fast. So you wonder why they do it that fast, it wasn’t like he was critical, technically he wasn’t even low.

Today he had 50 mg of hydro. Yesterday it was 100 mg.

His headache seems to be gone. He slept off & on most of the day.

I was thinking about the conversation Dr. McC & I had yesterday after Bill’s surgery. I think I’m going to send him an email and tell him that Bill seems almost calm about being stuck in the hospital. I hope this lasts.

I came back to the hotel about 6 p.m. That is the time they shoo all the family out of ICU for two hours. They say it’s to change shifts but I’m not sure why they need us out of the way. By the time I got back to our room I was feeling really sick so I never went back at 8:00. I’ve felt something coming on for several days & it finally hit tonight. I’ve slept for awhile and feel better but have to take it easy with food for awhile.

Friday, August 14, 2009

Today has been a very long day. Bill reported for surgery at 5:15 this morning. I was glad he was having the first surgery of the day, no waiting. Everyone that came in to talk with him commented on his blood pressure. He was taken to the holding area about 7:00.

When I checked into the surgical waiting room, I was told that they would update me at about 10:00 & 12:00. At 10:00 they woke me from a deep sleep to give me an update. I’ve always been a believer in no news is good news, so I was a little irritated that all they told me was that surgery started at 8:09 and they were able to go in through the nose. I know they are being helpful but all I could think was “you woke me for this?” Actually, my thoughts on surgery are that if everything is going okay, no need to tell me, if things aren’t going okay, no need to tell me until it’s all resolved one way or the other. There is nothing I can do but wait, I can’t change the outcome of surgery.

It was a little before noon when Dr. McCutcheon came to talk to me. Every time I talk to him, I can’t help thinking what a nice guy he is, and of course a great surgeon also. First he told me that he usually goes in through the right nostril (because they stand on the right side) but that Bill had a lot of scar tissue there (must of had a broken nose at some time) so he went in through the left nostril. He removed a white nodule from the left side of the pituitary right where he had seen something on Bill’s MRI. He said there was also a wedge shaped “something” that curled around the bottom of the gland, I think he meant on the outside, although I’m not sure he specified that part. He said he peeled off the layers of it and it was also sent to pathology. He found nothing on the right side.

The thing with Dr. McC is that he never seems rushed. After talking about the surgery, we talked about J&J and also about his son. Oh, I guess the very first thing he told me was that there was no CSF leak. He said he’d been worried about that with Bill. He said that while a leak is never good, he was afraid that three days on his back would drive Bill crazy. Actually, he said something about every time he’d seen Bill (he talked with us three times last year, pre op and then two post ops, and then talked with us yesterday) he seemed “well, somewhat worked up.” Or did he say agitated? Anyway, he had Bill pegged right. I had also worried about if he had a leak and had to be flat on his back for three days. I thought Dr. McC was pretty observant! We then talked about whether his almost constant agitation was possibly a part of Cushing’s and are hoping that it is.

Bill was put in ICU because of his high blood pressure. I really don’t like the ICU that well. Although I did like the nurse that came on duty right before I left to come back to the hotel. She seemed on the ball and interested in getting his pain level down. I can’t remember what they had been giving him, but it was only somewhat working on his head pain. She also turned on the little machine (have no idea what it’s called) that automatically inflates the leg wraps to help prevent blood clots. I had noticed during the afternoon that I never heard it working so I would ask the nurse how often it should be pumping and she would press a button down there and the other nurse put a new little machine on the tubes. But you know what, they never turned it on!!!! Tonight I asked the new nurse if it was supposed to be working and she looked down and turned it on! All afternoon it had never been turned on.

I think the headache has several contributors. First, he had pit surgery. Second, his cortisol levels have possibly dropped a lot, although they gave him 100 mg of cortef in an IV. Third, I’m not real crazy about how fast they were dropping his blood pressure. I could be wrong, but I think when your body is used to 230/130 for well over a year or more, dropping it down to a normal range in just a few hours, is too fast. I would think that they would drop it for a few days and then drop it a little more. I don’t know, but the afternoon nurses just laughed at me for questioning that. They said his bp was perfect. But I’m not sure his body knows what to do with perfect.

I didn’t see the guy, but Bill said some doctor was in and thought he should maybe see someone in internal meds because of his high bp. I wonder if they realize that it will probably never be under control until the Cushing’s is definitely under control and also his aldosderonism. We’ll just see what happens. But I really want him moved up to the 8th floor.

Wednesday, August 12, 2009

GetAttachment[1] (3)

How great! We can buy our past at the local grocery store. Does this mean we can buy a new past? If so, I’ll change the last four years, please.

Bob has come back to our neck of the woods to do some cutting (silage). He was staying at the farm Monday night and took Dad out to supper. They came to Colby and Jess & I went out and ate with them. My sister, Sue, her daughter, Tanya & Tanya’s son, Oliver also came to Village Inn to eat with everybody. Tanya & Oliver are staying in Colby for a few days.

Tanya was nice enough to share this photo with me. My brother, Bob, our nephew Oliver and my dad.

village inn

Bill & I arrived in Houston last night. Tomorrow he has pre op labs and we meet with Dr. McC, the neurosurgeon. Tomorrow we will also find out what time he reports for surgery on Friday.

Tonight we are eating supper with two gals from the Cushing’s board. That should be fun. One of them lives in Houston and the other gal is in town for an appointment. I like when I get to meet people that I’ve been talking to online.

I’m not quite as nervous as I was before we left home. For about the last week, I’ve been a mess. Can’t remember anything and seemed to accomplish nothing. I walked around with a deep feeling of doom.

This afternoon we took the hotel shuttle to Target and got a few groceries. Didn’t need too many as most of the time it will only be me eating here. I had to use the restroom there. When the hand dryer says “feel the force” or something like that, you know this will be one of those skin moving dryers. They almost make me laugh.

We’re staying at the Extended Stay we stayed at last year when we came here for J&J’s surgeries. We also stayed at one in Milwaukee when the kids had their BLAs. Last year there was four of us and we got a room with two queen beds. That comes with a couch and recliner. In Milwaukee there was only three of us so we got a king bed (for Jess & I) and it came with just a couch. Justin likes to sleep on couches. This time there is just two of us. We have one queen bed and only got an oversized arm chair. Online it said we would have a couch, but this is waaay to small to even dream of growing up to be a couch. Just an observation.

Sunday, August 2, 2009

I quite often read things from Cushing’s patients saying how their family and friends don’t understand the disease. I always feel bad for them. This disease really needs to be understood. I feel fortunate that I have a supportive family. I also have several friends that are pretty supportive.

But occasionally comments come back to me and I really wonder what other people think. I think the one that bothers me the most is when it’s said that they admire what I have done in getting my family diagnosed with Cushing’s, they don’t think they could do the same. The reason that bothers me – it makes it sound like diagnosis and treatment are an option not a necessity. 

If someone has Cushing’s or lives with someone with Cushing’s I think it becomes apparent that treatment is a necessity. Without treatment, patients will only get worse. I cannot imagine letting them live in constant pain, physically & mentally.

Here are some symptoms of Cushing’s.

  • Weight gain, particularly around your midsection and upper back
  • Fatigue
  • Muscle weakness
  • Rounding of your face (moon face)
  • Reversed sleep pattern
  • Facial flushing
  • Fatty pad or hump between your shoulders (buffalo hump)
  • Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Thicker or more visible body and facial hair (hirsutism)
  • Acne
  • Irregular or absent menstrual periods in females
  • Memory loss & loss of concentration
  • Inability to lose weight
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • GI issues
  • Severe muscle and bone pain
  • Just reading the symptoms doesn’t really sound all that bad unless you understand the disease. The fatigue and muscle weakness can be debilitating and the pain can be excruciating. The memory loss and lack of concentration can also be a big obstacle.

    I have heard that Dr. McCutcheon, who is our neurosurgeon, stated “Cushing’s kills” during a presentation at a national conference. It can just be a long drawn out, painful process. If you’re cyclic and your cortisol dips too low and stays for too long you could die. Cortisol is vital to life. Also, excess cortisol can destroy your body a little at a time. Muscle weakness – the heart is a muscle, high blood pressure – hard to control with Cushing’s.

    So, no there really wasn’t any choice about seeking a diagnosis and treatment.

    I’m not sure that I’ve really conveyed exactly how awful and debilitating Cushing’s can be. But trust me it is, it just slowly eats away at your body and your mind.

    Saturday, August 1, 2009

    I’ve been a little lax about blogging.

    Last Saturday several family members and a few friends got together to make mints for Shanda’s wedding. I don’t have any photos to share though. The mints are really easy to make. Combine 1 8 oz package of cream cheese and a 2 lb. sack of powdered sugar, food coloring as needed. The molds need to be dipped in granulated sugar before forming the mint. These freeze so they can be made well ahead of time. Elsie was the first of my siblings to get married. I was fairly young and don’t remember why she decided to have homemade mints but I do vaguely remember making them. We’ve been doing it for family weddings ever since. Although I’m not sure that we made them for my brothers’ weddings. My SIL can’t remember either. It’s always a fun time and eating a few along the way is also good! Love those mints.

    Oh, you can also add flavoring but they are very good without. Sue (mother of the bride) added vanilla to this batch. She then didn’t add any coloring, the vanilla made them sort of cream colored. If we would of thought of it sooner we could of colored some of the granulated sugar and used it to coat the molds. Her colors are brown & turquoise. Cream colored mints with turquoise sugar would of looked neat. We’ll have to remember that for another time.

    Today at 2:00, like most days, I thought it’s time for the kids to be taking their hydro. I do refrain from calling them to find out if they took their meds. I wonder if for the rest of my life at 2:00 p.m. I will always think of the kids! Probably most days it will at least be a fleeting thought.

    We got the results of Jess’ MRCP and everything is normal, no stones found in any of the ducts. I really thought everything would be okay. I think her five weeks of puking after her BLA was just something that happened as a result.

    Two weeks from today Bill will be recovering from pituitary surgery. We can pray that he will be one of the few that goes into remission with a first surgery. It looks like I’ll get to meet another Cushie mom while at MDA. Last year when we were there I also got to meet another mother.

    This week, my sister, Elsie, took Dad to Florida to see Bob and his family. They just moved a couple weeks ago but this was a good time for her to go and it was probably good for Dad to see where they live. I stole a few of her photos to use here (thanks Elsie).


    Elsie & Dad – my brothers do silage cutting for McArthur farms


    They went to the beach. Gianna, Genial & Grace headed for the water.


    Bob, the white legs tell you this isn’t his normal habitat!


    Mud (sand) baths?