Do not worry about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. --Phil 4:6-7
Well, the whole chapter really, but those 2 verses helped my mind and spirit a lot through all this. The peace of GOD is a promise that HE KEEPS!!! We would've never been able to get through the whole thing without our LORD and the precious friends He gave us who babysat, brought meals, visited, and PRAYED. This was serious for us, and God grew us by using this complicated disease.
Now, I will get on with trying to provide you with Todd's story. This is more detail than most people would like to read, but I have had requests from other folks diagnosed with this, so I thought it would be easy to have it in one spot. Todd will tell you that the surgery was SOOO worth it for how much better he feels. Not that there is really an alternative, but we are thankful there is such an effective treatment available. Hopefully, from having this written down, we can encourage others with this or other severe problems...that is why I've included so much detail, in hopes that someone can avoid some of the "bumps" we encountered.
Todd probably had this pituitary tumor the whole time we've been married (10 years June 2003). When we were engaged, I remember looking at his college pictures and thinking he was puffier than he used to be, but just slightly. We just thought that was how he was aging or something. He was 34 when diagnosed in February of 2001 and his surgery was that June, but he was really searching for answers for about 5 years before that. He had been on blood pressure meds for those 5 years (even though no familial history) and also on anti-anxiety meds for panic attacks. That's one of the hardest parts of this disease, the extra cortisol has SUCH an effect on personality, often depression and other forms of varying psychosis. For Todd, it was panic attacks, depression, increasing fatigue, and, as a result of all that, he really lost his sense of humor. Very soon after the surgery, he started joking around again, and I had to stop and remember, HEY this is the guy I married that's back again!!! He also had such bruising, especially his legs, just when he barely touched something and they would stay there, these huge bruises for years. His face was getting really puffier and puffier and REALLLY red, like an alcoholic, that ruddy look. Anyway, since he has a fairly angular face to begin with, the docs didn't think that he was that puffy...he just didn't have the advanced HUGE MOON face Cushing's patients eventually develop. His back was getting humpy, again not huge, but noticeable, his tummy was poochy and he was working out ALL the time trying to improve his stamina and muscle tone, but his extremities kept on wasting, while his abdomen got more poochy. He lost all the hair on his legs, and was just more and more tired and less and less involved. In hindsight, we didn't have any idea how bad these symptoms really were till after the surgery. BUT, as soon as they got the tumor (and half the pituitary) out, he started improving. He was weak, but the redness, the puffiness, the everything started resolving immediately. He NEVER had to take another BP or anti-anxiety pill. Even though we noticed immediate improvement in the hospital in those first days, it took about 6 months to really get rid of most of the puffiness, and even at 9 months we continued to note improvement. But I'm getting ahead of myself...
One of the places we got some "real people/patient side of the story" was from Sue on the website
It's come quite a long way since then, she's getting more info out to more people, and hopefully diagnosis will be easier for more as a result, not to mention the great support system there. As I said before, it took over 5 years of a lot of pressure on Todd's part to all kinds of doctors before we finally found out what it was. I think most people figure the doc will know if something major is going on (generally all they have time to do is stick you on a pill to treat symptoms until you are so severely ill that fixing the underlying problem takes a huge toll on you and recovery is not nearly what it should be, but I digress...) That's the first order of business I would say to anyone who is going through any sort of medical problem (especially something rare)... you have to ask ask ask ask ask ask ask, take somebody else with you to your appointments that will also ask ask ask ask, don't EVER think anything is too strange or silly to ask and almost more importantly, if you don't think the answer you got is right or seems not quite right, ASK SOMEONE ELSE!!! Also, if you get uncomfortable with your doctor, get a second opinion, or as many as it takes...it's worth it and it's your body, too many docs can't comprehend that you might know more of what's going on with it than they do!
Sorry for that...Back to the saga--
We were both strongly leaning toward a doc in Charlottesville, VA, named Dr. Laws. Evidently he is like a pioneer and the go to guy for Cushing's in the country, especially the SE. After reading more and more though, we found that although Cushing's is very rare (10 in a million and 7 are usually female), pituitary surgery itself is not so uncommon. It happened that the ONLY neurosurgeon in our area that had done what is considered "enough" of these kinds of surgeries was a guy Todd had golfed with...Dr. Bob Finelli. Evidently, there is a significant improvement in the patient's outcome and risk of complications once they pass this benchmark number (I can't remember now what it was), and he had. He had only done a handful of actual Cushing's, but again, he had the pituitary experience. One thing we discovered, lots of docs want the experience of doing this surgery because it's interesting and rare. For us, it wound up to be such a huge blessing to be home, since going to VA with 3 kids (one 6 months old and refusing to take a bottle) was not going to be easy. The down side of staying was that the ICU nurses had NO idea of what to do with him for the 5 nights he was there, since he didn't have much but an IV and nose packing, but the endocrinologist wanted to watch him closely in the unit for diabetes insipidus, (which he developed anyway since his pituitary never started to work). Now, ICU nurses are wonderful (don't get me wrong here!!), but they are not used to patients like Todd, since most of their patients can't really control anything of their own accord since they are usually more or less unconscious. Todd, however, had definite ideas about his care and wanted me to come help him with bathing and things, and ICU visiting hours are limited, so I had to come to a point of, I guess meekness (not my thing!) would be the right word to choose, in order that they would let me visit the time with him that HE needed, not the normal ICU visiting hours that are posted-10 minutes 3 times a day or something like that (which again is what most of the patients there need, just not this one :-). I just had to keep my mouth shut except for really urgent things and let them call the shots, even though his nurses had barely heard of Cushing's, which was frustrating, since we'd been studying it for 4-5 months... God had His hand on me to be more patient in that situation than I could have been on my own! I think this one nurse, it really bothered her that I stayed with him and it was mostly her call/control issue, again, health care isn't all it's cracked up to be. HE wanted me there so I wanted to be there and I had to play the game. Anyyway.......
That goes back to the uniqueness of all this, we had to get used to the word 'rare.' When Todd went in to his endocrinologist for the 1st time, he said to him "I think I've got Cushing's" and the Dr said "OH NO, you don't want that, let's rule everything else out first!" so his diagnosis took several months longer because of that. Later, his endo described Todd to another doc as "this is my patient who diagnosed himself."
Todd's pituitary never came back so he's on full pituitary replacement of the hormones ADH, cortisol, thyroid and testosterone.
For more real-life experience on each-
--DDAVP to replace ADH-antidiuretic hormone (this keeps you from peeing out all your fluids--another way to say that is to prevent diabetes insipidus)
--cortisol--you need some, esp for stressful events or injury, just not as much as Cushing's patients make :-)
--thyroid--once he got to a good level of this, finally started getting some energy
--testosterone--aside from the obvious, this also has a significant effect on muscle tone and thus energy also
The balance of all these seems to be the key. Todd has gotten pretty good at being able to tell if he's running a little high or low on one or the other, but it took time, probably the 1st year. Because your body normally fluctuates on these, sometimes (this is what we were told anyway, and it has proven true to him) you might need just a bit more or less...like he carries extra cortisol with him and we have some IM in case of injury and he might need more... he's had some slight fluctuations over time that he has had to accomodate. He still sometimes wants to take just very minimal just to check on his pituitary too! But they say it's not very likely after 6 months. He used to take the DDAVP 6 days and stay off the 7th, so he would drink tons and have to go like crazy that day...not a good day for a road trip!! Now, he takes that one about midnight and it starts wearing off about 7 the next evening (so he goes a lot between 7 and 12)...that worked out to be the best time for him since he's in sales and is in the car a lot during the day. That's probably the most annoying one, but he says it's allll worth it for how much better he feels. UPDATE (04) he takes that as he needs it now, since it is nasal, the doses seem to vary and sometimes wear off early. His Dr told him to adjust as needed, and he's so SLIM now, we know he's not retaining any fluid! So we don't have to wait on him all evening any more :-)
We were hopeful that his pituitary would start up again after surgery, and in the 6 months while waiting for it to crank up they kept him on really low doses of all the hormones, so once they decided it wasn't coming back, they put him on better doses and he felt muuuuuchh better. So he was still kind of weak for those 6 months, but still much better than pre-surgery. Now, he has only occasional fluctuations where he thinks one thing or another needs adjusting. It's sort of a nuisance, but it's not bad at all, not compared to pre-surgery. 2 different endos told us that on total replacement we shouldn't be able to have more kids, but I am pleased to tell you that on Dec 1st, 2001, we found out I was pregnant with our much longed for fourth boy, Liam!
There is so much that is not really understood about this disease and it was frustrating for me to stand sort of idly by in many instances when there was not really one person looking out for ALL of Todd. We had the endo to balance the hormones, the ENT to get the neurosurgeon to the gland and then of course the neurosurgeon. Plus, the hospital ( I understand lots are going to this system) doesn't allow the patient's primary doctor to come in and round on him...they have office hours to take care of, etc, etc, so we got this complete joker of a team of doctors that a different one would come in and look at him each day...after glancing over his chart, he'd make it in for oh, about 10 minutes, and that was supposed to be the one person who was kind of putting everything together. As a result, after the surgery he developed bronchitis (from the unit), and after he got home (I think 5 nights in the unit, 1 on the floor) he developed a spinal fluid leak from the coughing. So that's why he went back in for the 2nd surgery on the 25th, to repair the leak. But, again, that, of all the possible complications, was a pretty easy one to get fixed.
Another one of the lessons we learned from such a journey is that I guess is if something doesn't seem right, you HAVE to look out for yourself. As an RN, I never quite realized how hard that is to put into practice, because you just want to relax after the surgery, and let the "experts" take care of everything. Just a big reminder to me that we are ALL human and all very fallible, and it's hard to remember that no one but God is in control.
Links to Cushing's Sites
Cushing's support group