“What seems to us as bitter trials are often blessings in disguise”

“What seems to us as bitter trials are often blessings in disguise” - Oscar Wilde

Day 113

What a wonderful visit I had with my new surgeon this morning! She was even better than I remembered!! The epitome of quiet strength, an excellent communicator and highly empathic. Perhaps this insurance fiasco has been a blessing in disguise. Although I'm not sold on their program all the way, I am 150% sold on her, and in reality she is the single most important member of the team, right?

We had a great discussion. Their statistics have improved. Here are the numbers for post-op complications:

• Leakage: <1%>
• Blood clots: <1%>
• Death: <1/500>
• Major complications: 3-6% vs. 10%
• Gallstones: 2-3% vs. 30% (she'll put me on medication for 6 months to try to prevent)

They've had 2% of their patients develop ulcers and less than 1% have blockages -- and she noted the blockages can be fixed laparoscopically.

As for my girth -- no worries. She said if I were male she'd feel differently, but my stomach is soft and I've lost more than enough weight so far to have her feel confident about this. She's also confident that we can do this all laparoscopically (although no guarantees of course). The last time she had to open someone up was several years ago and it was because her stomach was higher up than usual and she couldn't get the liver out of the way so had to partially open that patient up.

She also did a better job than the last surgeon evaluating me as an individual I think. She set the goal of getting me off of insulin, but said it's likely I'll be on oral meds forever because I've had the condition for so long. Same with blood pressure -- likely to always be on meds, but should be a lower dosage. Likely good bye to several others though. A nice dream!!

She also went on to say that there's a 97% chance that without the procedure I would be unable to sustain the weight loss and that it has nothing to do with willpower but rather hormones. A person that's 20 pounds overweight has different chemistry than someone like me -- the fat wants to protect itself at my level and yet with the surgery the chemistry is changed such that the hormonal balance changes to somewhat closer to a normal person's. Still not the same, so don't expect to ever be svelte, but do expect to be able to maintain a loss of at least half of my excess body weight. Not too bad I'd say!! And if I can exercise on top of that I should be able to do even better than that.

The final assessment is that I'm ready. She sees no need for more testing -- she felt the other surgeon was very thorough. I do have to spend $200 and take those darn classes. Oh well. She sees no reason why I shouldn't "pass" the "council" vote on Friday after which they'll submit the paperwork to my insurance company and schedule this thing -- with any luck for some time in September. That will lead to one more class for all of the patients that will have surgery in the next two weeks to get us ready for the big day and the first month thereafter.

Time off work will be 4-6 weeks -- perhaps 3 if I feel strong enough and/or work part time and/or from home. This is because I have such a short commute -- any longer and she'd stick to a minimum of 4 weeks. She recommends the full 4, so if I can "stand" it -- you know me -- I actually like working! -- perhaps I'll actually take the full 4 off. We'll see. It's too soon to think about that now.

John and I attended their support group last night. It was great to see so many post-op patients there! There were only a couple of pre-ops so we were able to ask lots of questions. One I asked was whether anyone had any ah-hahs after the procedure -- things they hadn't known or thought of but wished they had. Some interesting answers. One suggested not buying baby food -- it was awful. Puree my own. Good excuse for a new Vita Mixer! :) Another said don't do it the week before Thanksgiving -- the smells were awful for her. Another said she wasn't prepared for the emotional response she had when the reality that she'd never be eating the same set in. She got through it with the help of friends. I feel most fortunate knowing that I'll have all the help I'll need in you guys too!! Another said be ready to think differently about what you order in a restaurant -- not just the nutritional value, but the reheat value -- plan to eat that thing you order for 2 or 3 meals.

And the success stories were fun to hear too! One lady who was 3 months post op had just gotten back from Florida and not only did she fit in her airplane seat, but she didn't need a seat belt extender and she actually had 5" to spare on the regular seat belt! Another lady had just gotten back from a day at Disneyland where she went on all of the rides, fitting in her seat and having no problems securing the safety bars. Another more mature woman (one year post op) just rode on the Napa Wine train and was thrilled because she had no problem climbing in or out of the train. No wine, and she skipped the starches in her entree, but she ate her creme brulee. ;) One gentleman who was 5 years post op admitted he doesn't exercise "formally" but noted he's a lot more active overall than he was pre-op -- and he looked great. It was a good session overall -- and great having John's support there! :) 3 spouses attended which was nice.

“I do the very best I know how, the very best I can, and I mean to keep on doing so until the end”

“I do the very best I know how, the very best I can, and I mean to keep on doing so until the end” - Abraham Lincoln

Day 108

Kismet? I remembered the name of the gynecologist that helped me with my horrible ovary problem 12 years ago at 4:59 PM last night. I had really liked him, but he stopped taking HMO coverage shortly after the procedure back then so I had to leave him. This year we switched to an EPO (Exclusive Provider Organization -- kind of like a PPO, but although more restrictive, way lower out of pocket costs). Tried calling but of course the staff had already switched the phone over to their answering service.

I tried again this morning shortly after they opened, and although he wasn't in today his Nurse Practitioner (NP) was and had just had a 10:30 AM cancellation -- else I'd have to wait a few weeks. Thankfully I was successful today (for a change!) in my quest to keep Fridays meeting free to catch up on email and other work, so was able to jump on the opportunity to go see her.

She was great! I know computers are wonderful too since they help me earn a decent paycheck, and in this case they came through for me again as the office had automated patient records -- even those from 12 years ago -- so she knew my ancient history and I only had to update her on recent developments. The bad news is we only have a 50/50 chance of having gotten a good enough sample for the Pap smear as my anatomy's challenging to work with -- for once not because of my weight, but because of just plain old aging and how I'm built. She was so encouraging though!! We have to wait about a week for the results, (here we go again!), but if it wasn't good enough she'll make sure I can get into the doctor quickly and we'll figure out a plan B. I love her confidence -- she said (although I realize she has no real influence) that we won't let this stupid test be the one thing that gets in the way of moving forward. A woman after my own heart!! :)

My new PCP just called with the latest Lab results. Creatinine still normal, BUN still a little high and sodium almost normal (134 vs. range of 135 -146). Directions are to keep on keeping on -- continue eating per the plan, liberalizing salt slightly and sticking with the high protein diet.

I thumbed through the binder that I was provided with yesterday describing the Valley Care program and was pleasantly surprised to see all of the slides for the $200 class were printed and included. Of course I'm even more irritated because as suspected it is all duplicative, but at least I can read through it over this new week and take the test (have to pass with 80% -- worse than my PMP!) as soon as they accept me into the program officially (or as yesterday's RN would have put it "if" they accept me).

I forgot to post a couple of other new action item yesterday.

1. I have to contact my pharmacist and go through my meds with them to make sure the form is proper. I can't swallow anything over 10mm for the first few months. If they're too big and not cutable or crushable I have to contact my PCP and get the delivery mechanism revised.
2. I have to start practicing extending every meal's consumption time to 30 minutes -- even liquid ones. Apparently this is a guideline for all of us -- it takes 30 minutes for food to hit our stomachs and for us to know we're full.
   
3. I have to start practicing eating without an accompanying beverage and waiting for an hour to start drinking again. The new pouch will only hold 2 or 3 ounces of food at first so a) there's not enough room for food and water and b) you don't want to risk washing the food out and losing the sense of fullness or nutritive value it provides.
4. I have to start practicing chewing food to the consistency of applesauce -- any large particles are likely to cause a stricture -- not a good thing obviously.
   

Rules, rules, rules! I suspect my love of rules is going to change through this process. But hopefully I'll get a chance to find out in the not toooooooooo far distant future.

“The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.”

“The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.” - Arnold H. Glasgow

Day 107

I'm beginning to wonder if I am supposed to be learning a lesson about patience through this process. Smashing a few chickens sounds like more fun right now!!

It is so hard to move from a facility that I loved and trusted to a new one. And having to repeat some of the process is so frustrating!! I had a somewhat discouraging afternoon. I had such high hopes as the office administrator was great on the phone (and in person today)... but that was the only big highlight. I saw the RD first and clearly she has her spiel down pat -- and God forbid she miss a moment of it. She started off by acknowledging I probably learned all this already, but... and then launched in an hour telling me everything I already knew. $120 for that hour -- yikes. Had I not already been through 3 classes and paid for a one on one with a different RD (who by the way only charged $90) it might not have been so discouraging -- this RD was obviously knowledgeable and a clear communicator, but I have been.

Next an hour and a half with the RN that runs the program. A former bariatric patient herself, you'd think she'd be empathetic and helpful... not my impression of her at all I'm sorry to say. She didn't share the fact she'd been through the procedure until about an hour after I got there -- I would have sworn she had no clue about how it felt to be sitting on my side of her desk. Thankfully she blew through the "formal" presentation; however, then she spent seemingly forever reviewing my medical history and sharing all of their center's rules with me. OMG. She kept saying how hard it was to fast track anyone and threw up roadblocks all over the place. By the time she'd gotten through all of the clearances my prior surgeon had required she backed off a little and actually acknowledged how thorough the other program had been.

They're even more thorough though it seems. We'll see if the surgeon adds anything to the list, but right now these are my "new" prerequisites that have yet to be met:

1. "Prove" I've lost enough weight to date. Thankfully this was easy thanks to my wonderful endocrinologist's staff -- they faxed "proof" of my April weight over late this afternoon. The other facility had actually believed me.
2. Do some more bloodwork (sigh). Easy enough, but what a pain. Literally!
   
3. Start recording daily exercise.
4. Increase daily exercise. (OK, this one's fair, and hopefully with that darn wound healed now this won't be as hard as it was).
5. Meet with the surgeon as planned (thank Heaven!) next week and see what else she may require.
   
6. "Pass" the "council" vote for my suitability for the procedure next Friday. The "council" comprises the surgeon, the RD, the RN and the psychologist (at least I know I already passed the psych screening a couple of months ago).
7. Spend $200 to take their on line class (and pass the exam) to make sure I understand what I'm getting into. This is probably the single most annoying part. Like I haven't already been to 3 classes in Oakland (that were free by the way) and hadn't just sat through another 2.5 hours of lectures and hadn't already read several books and talked to several people who have had the procedure performed... And oh by the way, I can't give them my money an start on this unless (that word was used several times) I "pass" the "council" vote.
   
8. Get a Pap smear. This is likely the second worst roadblock -- every GYN in the area seems to be booked solid for a month. Tomorrow I'll try to recruit some help from my PCP and/or endocrinologist in recommending a colleague that they might help plead my case with. One can't help but wonder what the $(@% my cervix has to do with a gastric bypass though...
9. And the worst roadblock of all -- totally impossible in a short period of time and one of the main reason's I'm doing this in the first place -- lose 7" from my girth. Holy cow!! Might as well be 7' (and no, I'm not 7' in circumference yet!). NONE of the literature I've read anywhere has had a maximum girth requirement -- and of course this wasn't a requirement for the Oakland facility. My reaction to this elicited the only moment of semi-empathy she exhibited. She stated that "sometimes" the surgeon makes an exception if everything else is OK and your abdomen is "soft" enough. My widest girth point is below the point where most of the incisions are made on the charts and videos I've seen, and fairly soft IMHO, so hopefully the surgeon will "let me get by" with this. Sheesh.
   

And yes, I know I will get over this frustration and associated anger over the afternoon shortly, but smashing a few chickens really does sound good (at least in theory) right now... perhaps I'll do some mental smashing as I ride my recumbent bicycle for a while later tonight!! And record it!!!

..."the medical-care system is second to none in the world..."

“We Americans live in a nation where the medical-care system is second to none in the world, unless you count maybe 25 or 30 little scuzzball countries like Scotland that we could vaporize in seconds if we felt like it” - Dave Barry

Day 106

Good news on the surgeon front: her assistant called this morning to let me know that the surgeon is letting her "squeeze" me in as a "rescreen" vs. a new patient. She had me have the Oakland folks fax everything to her to plead my case for this and was successful. It's great working with people who know the system and are willing to help you navigate it, isn't it? :)

I'm retesting my kidney functions and sodium this afternoon (assuming I can make it out of the office by 4 PM as lab closes at 5). Fingers crossed!!

"The prompter the refusal, the less the disappointment"

"The prompter the refusal, the less the disappointment" - Publilius Syrus (Roman author, 1st century B.C.)

Day 105

The insurance company outright refused my surgery at Alta Bates/Summit. They said my "contract" allows me to go to one of two places in Northern California -- either Valley Care in Pleasanton or UCSF -- and the AB/S staff shared with me the news that the surgeon at UCSF just quit. Oh well, I guess it's good it only took them a day to let us know -- of course what I'm really wondering is why the AB/S staff didn't determine this back in May when the initially sought approval for me to have the procedure. My "contract" has been the same since 1/1/09.

And before you ask, yes, I asked if there was any possibility of an appeal. The answer was a very direct "no." It seems crazy to me -- the surgeon's covered and the hospital's cover, but even thought they're a certified Center of Excellence (COE) for Bariatric surgery, they're not explicitly called out as approved in my "contract." (big SIGH)

The only upside is that the surgeon that started the COE at Valley Care in Pleasanton is Mary Estakhri and I met her 12 years ago. She was an awesome surgeon then and likely is even better now. I had a fortunately benign breast tumor that she removed for me back then, doing such a great job that you can barely see the scar if you know where to look. Unfortunately her reputation precedes her and she's booked for new patient intake visits all the way until 9/16 -- 6 days after I was hoping to have the surgery. I spoke with her assistant and she is going to try to get me in earlier -- hopefully I will know tomorrow.

I have to see the VC COE nurse and nutritionist also before I can proceed. Thankfully there are openings to see them this Thursday afternoon so I will do so then. Hopefully those are the only repeats I’ll have to do. Best case scenario I think I can hope for now is October or November surgery again... I hope my original December target doesn't become reality.

I guess there is one more upside -- that is that this is so close to home -- no more trips to the big, bad city.

On a different couple of notes -- best news all day: I have been officially discharged from wound care treatment and am officially designated as healed. The skin is very tender and I'll have to be careful, but else-wise all is well.

I have officially survived one year with my employer now as of today too -- something in this economy that I can say I am very happy about. I am hopeful that things will continue to get better and all of us that want to work can do so.

"Be careful what you ask for because you just might get it."

"Be careful what you ask for because you just might get it." - Unknown

Day 104

I have a tentative surgery date: September 10. Woohoo (I think!)!!

Key dependency is insurance approval. The scheduler/coordinator noted my insurance provider is pretty good. Apparently they turn these around in about 5 working days and she is sending it today. So perhaps next week this will become un-tentative.

Wow. This is really exciting, but the reality of what I am planning has just become a little scarier too.

"All the knowledge I possess everyone can acquire, but my heart is all my own."

"All the knowledge I possess everyone can acquire, but my heart is all my own." - Johann Wolfgang von Goethe

Day 101

And my heart is "normal" -- woohoo!! I received cardiac clearance for the surgery yesterday -- conceivably, insurance company and surgery-suite availability notwithstanding, I may have this procedure performed in September. This was the last major milestone. What a relief!! The cardiologist's office sent the clearance letter to the surgeon's office yesterday, so with any luck at all this may be scheduled next week -- we will see.

I also received my blood lab results. Not awful, but not perfect. Creatinine at 0.91 in range of 0.6-1.1 -- perfect! The BUN (blood urea nitrogen) still high at 33 (range of 7-25). Not awful, like I said. A new anomaly showed up -- low sodium now. My PCP's prescription is so doctor-like, I love it, "Liberalize salt slightly." Never in my life did I think I'd hear a doctor tell me to increase my sodium intake!! It's great though. John made a wonderful high protein dinner last night with zucchini and peppers straight from his garden. I thoroughly enjoyed grinding a few sprinkles of some lovely sea salt on top of it!!!

So I will have to continue drinking water and peeing like crazy!! I am really enjoying the Smart Water a friend suggested -- it does taste wonderful. I found it on Amazon with free shipping so I don't have to haul those heavy cases home from the market. It's great having it delivered right to our front door.

Thanks to everyone who keeps providing me with such wonderful encouragement and support. Please continue to keep your fingers crossed and keep good thoughts coming my body's way for rapid scheduling now. It would be great to be able to be through some of the worst of the after-surgery re-learning to eat by the holidays. If it's not meant to be, it's not, but I sure can hope now! :)

"Sleep is like the unicorn - it is rumored to exist, but I doubt I will see any"

"Sleep is like the unicorn - it is rumored to exist, but I doubt I will see any"
— Anonymous

Day 98

I picked up my new demon bi-pap machine yesterday morning and started using it last night. I fear sleeping in bed is going to be as elusive as those unicorns I've always loved... if last night is any example.

I found it "OK" in my recliner. I experienced some useful sleep there... and then in the middle of the night I made my usual transition to the bed and it was all over. John was great, encouraging me and giving me some advice from his own original few nights, but unfortunately that didn't help. I struggled to calm down enough to breathe a little while lying on my back, but as soon as I rolled over (and I am a side-sleeper) I felt like I was suffocating.

I think I may pass on the attempt tonight in hopes that I can acclimate myself sufficiently in the recliner to the sensations of forced breathing through my nose in hopes of feeling a little more refreshed tomorrow morning. It's a darn good thing that I have motivation in the prospective surgery or I'd probably exercise the 30 day return option and keep on with my seeming inability to breathe properly while I sleep.

I went to the Lab today and had blood drawn for the kidney function retests and the tests the sleep doctor ordered (iron and B12). The tech was able to draw on her second attempt after digging around a little too long on my hand the first time. Ouch. I drank tons of fluids today (as I have been), so fingers crossed that the kidney function is good this time and I don't show any signs of dehydration.

I am looking forward to Thursday and my return to the cardiologist for the results of the stress test. This is the last major hurdle for my approvals, so keep your fingers crossed on this one too please!! :)

"A miracle drug is any drug that will do what the label says it will do."

"A miracle drug is any drug that will do what the label says it will do." ~Eric Hodgins

Day 94

Part 1: Drug-induced stress test

Ativan is not a miracle drug -- at least not for me. And if it did work, OMG -- I can not imagine how impossible it would have been to get through the drug-induced stress test and PET/CT scan!!

I dutifully took the little pill an hour before the procedure and kept repeating to myself "you are going to relax. This is no big deal. The stress inducer is not going to create a heart attack. The machine is not going to be claustrophobic..."

Oh well. I did survive, but with lots of help from good vibes from friends and a cool tech named Erik. And in spite of the less than cool tech Steve!

John and I walked into the facility -- the whole building was pretty impressive for the East Bay. It was in Walnut Creek/Pleasant Hill area and is a huge cancer research center. We found our suite and walked in and a reasonably competent person checked us in while Erik jovially greeted us. A few minute wait and then he came to get me to start this particular journey.

Lovely changing room with a very cushy recliner. Amazing. Reasonably attractive fake flowers and not-too-bad mass produced wall decor. A hospital gown that actually fit!! And he brought me a big cup of water (no doubt to aid in hydration for IV insertion) and told me to change, drink it all and meet him in "the room" with my empty cup.

"The room" had the scanner -- rather like an MRI. Long, narrow conveyor belt -- and Erik had be climb aboard. It was all I could do not to run out of there screaming... it was obvious this was not going to be the two four-foot square panels circulating around me taking pictures as the cardiologist described -- it was going to be a ride into a tomb.

Bolsters for head and knees were put in place -- thankfully, else I don't know how I would have been able to lay flat for half an hour on my back. Erik inserts the IV (getting it right the first time -- yay) and tells me all about what's going to happen. I let him know(many times I confess) that I really didn't want to be there and that the Ativan didn't do a damn thing for me. He cracked a bunch of jokes trying to help me relax. I ask him if my head really has to go into that great big machine and of course he admits it really does. He also promises to be in the room with me all the time he can (which was about 95% of the time and he did come through with that one!).

The first part of the scan is with the heart at rest -- so all he injected the first time was the tracer. We start the ride. I feel like a lamb going to the slaughter. And then my head goes into the machine and it stops. Yikes. I hear Erik's voice in my ears (great stereo inside the machine) telling me I'm doing great, blah, blah, blah... just a few more minutes. Thankfully before he started my "ride" he gave me a panic button to push and promised he'd pull me out if I couldn't handle it. I did believe he would -- I doubt Steve would have. He just wanted to get the job done and go home, you know the type.

I remembered Fern's trick and kept my eyes closed and tried to listen to the music -- Frank Sinatra. Finally the first part of the first half is done and the conveyor belt moves me further into the machine, taking my head back to the room and locking my torso in the machine. Again, I almost came unglued, but gold old Erik came back and joined my head at the back of the room. I joked about the music and said I wish I'd brought my own and he asked me what I wanted to listen to. Eric Clapton came to mind and sure enough he put Eric on the PA system!!

This part lasted about 10 minutes. Next came the scary part -- the drug to stress me. Erik warned me it would feel like a panic attack but promised it would only be for about 5 minutes. We'd spoken earlier about this also and he shared how much better this new drug was than the old protocol with adenosine. I truly don't think I'd have been able to handle that. He said it was insidious -- it took several minutes to start to affect you and then kept building and building up the stress affects and once they hit their peak they lasted about half an hour. The new protocol hit me within a minute of the injection. The worst part was breathing -- it felt like an asthma attack. Accompanied with a hot flash, some gas, and a little bit of a rapid heartbeat. Thankfully it lasted less than 5 minutes.

The conveyor pushed me back to the beginning and then repeated the same process as the at rest process. I tried to rock out to Eric as best I could. I opened my eyes when my head was in the machine and a disassociated me thought it was kind of cool in a space wars kind of way -- big white dome with lots of flashing lights including a series that counted down when the machine was going to move my head out and my torso in. I focused on that countdown to keep calm.

Finally it was all over. Yay. I get the results next week on Thursday. It was really hard to get up after lying flat that long - my back and my head hurt. The guys were obviously used to that as both were ready to help. Erik told me to have a diet pepsi if my headache didn't clear soon, so I broke my caffeine-fast of three months and had one about an hour later. It was like magic -- instant headache elimination.



Part 2 - Sleep Study Update

I met with the sleep doctor this afternoon. The data was fascinating. No question but that I don't know how to sleep -- right there on chart after chart. Someone without sleep apnea stops breathing 0-5 times per hour. I stop breathing almost 90 times per hour -- amazing!! I asked him how I could possibly be reasonably well rested and not display all of the symptoms of someone with such severe (his word) sleep apnea and he said that some people simply have the drive to sleep -- clearly I must be one of them. And I do love sleeping!!

I was afraid I might have a battle on my hands getting a bi-pap instead of a c-pap machine. As soon as I told him how I felt when I woke up coughing (rather like I was suffocating) he said he'd request the bi-pap. Yay. In case you're into the numbers on this thing, he noted that I didn't get into REM until the air flow was at 11. He suspects my optimal place will be 12. He ordered a smart machine for me -- one that measures how I'm doing and self adjusts throughout the night. He ordered a top setting of 14 to give the machine proper flexibility. Whatever that means, but it does seem to make sense. It has a card in it that I'll bring in when next I see him in September with data he can download. Cool. I love technology!!

The machine provider called this afternoon and I have an appointment Monday morning to pick it up. So Monday night will start the 6-week countdown to the earliest date I can have my surgery -- that would thus be September 21. Wow.

Hopefully I passed the stress test. After I see the cardiologist next week I'll call the surgeon's office and with any luck we can proceed to the next steps of final insurance authorization and truly schedule the surgery. The other little wrinkles are my kidneys -- I moved the retest to next week (Tuesday) so I could hydrate a little longer. I need to have a couple of other things tested too for the sleep doctor -- apparently my legs move while I sleep and that could be due to iron or B12 deficiencies so he wants to test those. My last couple of iron tests were a little low, so we'll see.

Amazingly enough, it seems that all of the pre-requisite procedures are all wrapping up finally. I can't help but wonder if a fork in the road will be presenting itself or if the path will continue on as it has so far. With any luck I'll know in another week or so.

"Reality is the leading cause of stress for those in touch with it."

"Reality is the leading cause of stress for those in touch with it." - Jane Wagner

Day 91

OK, so I'm a wimp. I freely admit it.

I received the patient instructions in the mail last night to prepare for my drug-induced cardiac stress test coming up on Thursday. OMG! It turns out that it's not a PET machine, it's a PET/CT machine (bigger and thus scarier to me). It goes on to read "Sedation is almost never needed (wanna bet); however, if you are extremely claustrophobic (and I am!) or tend to have difficulty remaining still (while lying flat on your back I do!), consult your doctor about the advisability of taking a tranquilizer before coming to the facility."

So you know who was on the phone to the doc's office first thing this morning groveling for drugs! It took a couple of hours, but the nurse finally called me back to let me know the good doctor has ordered some Atavin for me. I hope it works!!

Another instruction was to call the facility and let them know if I have asthma for further instructions. So I called and it turns out they want me to bring my rescue inhaler just in case. The med I take is non-steroidal so I can continue to take that before the procedure. While we were chatting I asked why the scheduled exam didn't refer to the adenosine the doctor ordered. Some good news here: they use regaenoson instead of adenosine. I did some research on that and this sounds like a good thing - equally good image results with fewer patient side affects of shorter duration. Can't beat that!

So, it sounds like I may actually be able to go forward with this procedure. I may be a wimp, but hopefully I'll at least be a more relaxed wimp now!! With any luck, the Atavin will have a memory wiping affect on me as well as the relaxation. I have never taken a tranquilizer, and reading about this one it notes that a potential side affect is short term memory loss. Apparently this is one of the drugs they can inject into you when you're undergoing anaesthesia to help forget the experience. Fingers crossed!! With a lot of good vibes from my friends, the joy of drugs in action and knowing the side affects will be shorter I think this just may be doable!!

"Never awake me when you have good news to announce..."

“Never awake me when you have good news to announce, because with good news nothing presses; but when you have bad news, arouse me immediately, for then there is not an instant to be lost.” - Napoleon Bonaparte

Day 89

I have good news and bad news to report from the sleep study. The good news is that I don't have to go back for a second night's torture. The bad news is that it's because I failed so abysmally there's absolutely no question but that I have severe sleep apnea and must start using a sleep machine. Wow. It's difficult to assimilate this on so many levels. One, hard to imagine I have had such crappy sleep benefits; another that even a sleeping pill didn't make it any better, another that I'm going to have to learn to sleep with a machine that makes me feel like I am suffocating and finally that this puts my surgery at least two months out now. Wow.

The tech was great - a guy named Al which is my father's nick-name. I arrived at the sleep center about 5 minutes early and not a car was in sight. I was all-a-jitter, not looking forward to the "experience" in the least. Per my instructions I rang the ominous after-hours bell, and out walks this very jovial man saying, "Hi, you must be Gail. I'm Al. Welcome." Clearly he's done this before. Anxiety level considers minimal abatement. We walk into the center. By day it's an outpatient surgery center, by night cavernous rooms with lots of scary equipment and empty hospital beds. "Oh great, I think... I'm going to have to do this darn thing in a surgical suite in a hospital bed."

He finally stops the tour and invites me to follow him into a room that although still rather clinical turned out to be not half-bad. Similar to John's sleep study experience of a couple years past there's a queen size murphy-bed made-up with a cheery yellow blanket and two amazingly fluffy looking pillows for a sleep center. And to my great delight a large black recliner that looks fairly squishy (and yes, I was able to convince him to let me sleep there so my shoulder survived the night admirably) and a nice-sized flat screen TV mounted to the wall. Anxiety abates slightly... and then I notice the seemingly endless pile of connectors neatly lined up on the bed awaiting attachment to various body parts. Ugh.

Al was cool though. He had me fill out a pre-sleep survey (as though I hadn't already filled out 100 pieces of paper prior to the evening) and change into my jammies and then came back and started the almost 90 minute process of hooking me up to all those wires. It probably could have been done in half the time but Al was chatty and I had warned him I was anxious so he was doing all he could to help me relax. About two-thirds of the way through the process his other "guest" for the evening arrived - an 18 year old man with his parents and older brother. Boy were they rowdy! I heard Dad telling his son all about the experience and not to worry after his brother pointed out the cart that had all of the ointments and tape prepped on it in anticipation of his hook-up session.

Al had told me earlier in my hook-up that the 18 year-old was coming. I told him that I was amazed someone so young was there and he said sadly he's had a number of 10 and 11 year-olds in the center. Typically they didn't have apnea - they couldn't sleep because of stress generally related to parents getting divorced. How very sad. I heard the 18 year-old's mom asking the tech to try to do a split-study for him because they were taking him to his college on Thursday for some early training and they didn't want him to come back. So now I'm envisioning there must have been an athlete in that room - an anonymous person who may someday be famous and I could have said I'd spent the night with him - except for that anonymity thing. Oh well, I guess the Enquirer article isn't an option after all.

Before the family arrived I also pleaded for a split study. Al explained the criteria for it to me in more detail than the doc had. He said that the only way he could do a split study was if it was clear in the first 3 hours of the evening that I had sleep apnea. If unclear, or if seemingly I didn't, then they'd have to do a two night procedure. He told me about the guy he'd had the night before that had a horrible time for the first hour of his sleep but finally fell into a good REM sleep with no breathing issues for the next few hours... and then back into the "bad" sleep pattern. By then it was too late to move him to the machine. I asked him to put me on it 3 hours in if it looked possible that I had any issues. He woke me up after 2 hours and said "I just couldn't stand to see you suffer any longer. You were literally gasping for air." No doubt at all about my condition. OK then. Bring it on.

I breathe through my mouth - a lot. I have for as long as I can remember. I've always had upper respiratory junk - allergies to everything in our environment, a little asthma, blah blah blah. Because I "admitted" this he had the "special" mask holder all prepped for me. I was very light weight - that's about the only good thing I could think of to say about it. It was fitted around my head and had a chin strap so that when you tried to breathe through your mouth it wouldn't fall off - also helped remind you to keep your mouth closed. This turned out to be a very good thing because with the mask in place and the air turned on if you do open your mouth you can't breathe at all. It was all I could do to keep myself calm and out of full panic mode when I had to cough - at one point I ripped the thing off when I did need to cough because I was sure I was going to suffocate. They only had a c-pap machine. John uses a bi-pap. I'm going to have to ask the doc about the latter because his seems a lot better. The c-pap blows air in and you have to exhale on your own. The bi-pap both blows air in and helps you exhale.

When he first put it on I was OK - not loving it, but OK. He had the air flow really low. As he increased the air flow I found it difficult to breathe. I wondered how on earth I was ever going to be able to go back to sleep. The mask itself is effectively a small piece of plastic fitted over your nose with holes the size of your nostrils and a protuberance that hovers over your lips - perhaps 1/4 of an inch away - hence the inability to breathe through your mouth. As soon as you do there's this feeling of almost like reverse air pressure sucking air out of you instead of putting it in. Very odd - add very scary. One of my phobias is fear of drowning - and it made me feel like that.

So good old Al reduced the air flow for me and I thought about beaches (no doubt with those lovely visuals I mentioned yesterday from one friend and in yesterday's comments from another). The sound of waves crashing on the shore in my mind overcame the sound of this thing pushing air into my nose. But then Al turned in evil, nefarious Al! As soon as I fell asleep he cranked that air flow up. Of course I didn't know this until I woke up coughing - no doubt that's why I ripped the mask off then.

He was a cool guy though. He came into the room right away. Turned the air flow back down and repositioned the mask. I was sure I'd never be able to fall back asleep (it was around 3 AM then), but did so within a few minutes. The evil, nefarious Al kicked the air flow back up high again and for the first time in the night I actually went into REM sleep. Amazing. Maybe I do need this damn thing after all! Of course the ever-wishing-to-be-in-denial part of me wants to blame it on total exhaustion after a night in the catacombs... but...

Around 5 AM after I came out of REM the good Al came back and released me from all of the medieval torture devices. He commented that he was going to encourage future victims, I mean patients, to try sleeping in the recliner because it worked so well -- they want you on your back and most of us are side-sleepers). I refused to admit it but I did wake up amazingly awake if that makes any sense. No grogginess at all, just suddenly awake. Another clue perhaps that perhaps I do need this thing.

I was home around 5:30 (it as a lot faster detaching the multitudinous devices that it was attaching them!!). After setting off the house alarm and reassuring the alarm company that we were OK (John had set the alarm to go off immediately upon an exterior door opening instead of the away delay) we both went back to sleep. I didn't get up until around 10 - about 4 hours later than my usual weekend wake-up time.

The only residual challenge to deal with this morning was my hair. Four of the connections of the EEG to my head were on my scalp. Al used a gross gooey, waxy product to attach them. He warned me last night that it wouldn't be fun to get out but that as long as I used the hottest water I could stand and no shampoo that I'd be OK. And once again Al came though for me. After figuring out how to bypass the shower's safety thermostat (I do love the new shower tower we put in with the remodel a couple of year's ago!) I spent about 20 minutes melting the gunk away. My hair still felt icky and then I spotted the clarifier my stylist had recommended a year ago when I had some product build-up on it so decided to give it a try. After two rinses with it I feel much better -- bless you Rene Furtier!! His products are outrageously expensive, but worth every penny at a crisis time like this. :)

OK then... this has to be more than enough gory details for anyone, even me, by now! Thank you kind friend for ploughing your way through this endless blog today. Once again, it's been very therapeutic for me to write my way through the angst and into acceptance. Thanks for all your support.

One last anxious milestone to deal with now - this coming Thursday's drug-induced stress-test and PET scan. Can't wait (for it to be over). I'll let you know how it goes! Please thing good, calming thoughts for me and send your positive vibes my way around 12:30 Thursday afternoon.

Counting French premiers or sheep?

Sleep is perverse as human nature,
Sleep is perverse as legislature....
So people who go to bed to sleep
Must count French premiers or sheep,
And people who ought to arise from bed
Yawn and go back to sleep instead.
~Ogden Nash, Read This Vibrant Exposé

Day 88

Well tonight's the big night... sleep study time. Shall I count French premiers or sheep? What a silly thought... thanks to Ogden for the giggle. And thanks to my friend (who shall remain un-named to protect the innocent) who sent this great sentiment to me this morning:

Don't have any dreams about any hot dudes or anything that would push your heart rate up and affect your breathing!!"

That brought me an even bigger giggle! I shall try to remember both when sleep anxiety hits tonight! I still don't know how they can expect you to actually fall asleep hooked up to all that apparatus knowing you're under observation... I hope to heck that sleeping pill the doc gave me is a strong one!

Next Thursday I "get" to have the induced heart stress test with PET scan. Can't wait (not). John is taking some family sick time so he can join me and provide some moral support. I am truly blessed to have such a wonderful partner.

It will be nice to have both of these hurdles behind me - hopefully they're the last two major tests I need to get through before we can actually seek a surgery date. And even more hopefully I pass both of them so there are no impediments to having the surgery.

I am beginning to feel like I am going to float away from all of the liquids I am consuming. I will retest my blood either Wednesday or Thursday this week, depending on when I can break away from work for a few minutes. I expect next week to be crazy as we're reporting on our July results and kicking off 2010 planning and officially starting a swap in portfolios we are managing between a colleague and me. There won't be a lot of dull moments, that I am sure of.

Sweet dreams everyone...

"What greater gift than the love of a cat."

"What greater gift than the love of a cat." - Charles Dickens
(Today's quote is offered in memory of Susan and Tom's beloved Boots. He'll be missed.)


Day 84

Another see-saw kind of day on the journey...

Started off at the wound care center. Two of the three wounds are officially considered "healed" now - hallelujah!! He minimally debrided the third and commented that it's shrunk signifcantly - fairly good news. He is definitely on the AR side - nothing but "perfect" skin will do for him. I guess that's a good thing. I'm off the hook for two more weeks now before having to hike back to Walnut Creek to visit the center.

Received a call with mixed news from my new PCP. The creatinine level was in "normal" range - yay. The urea nitrogen was not - 30 vs. the normal of 7-25. Not too bad I suppose. Orders: continue with high protein diet for two more weeks and re-test, consuming more fluids along the way. OK then. I suspect I'll float away - please send me a lifeline if you see me in the middle of the Pacific, OK?

Received the call back from the GI specialist who confirmed the lab report was not in error, , but not to worry... 90% of us have hiatal hernias and unless they're a big problem we'll never know it. Interesting. "If" it bothers me, go on the low acid diet... and if not, don't worry. That was good news. I love my citrus, tomatoes and fresh crisp apples!! I realize I won't be able to tolerate any of those post-surgically for a while, so I really don't want to cut them out earlier than I have to. I must confess that I do feel a bit more motivated to avoid the temptation of those yummy pizzas now. I mentioned earlier that the wound care doctor did his fellowship with the same practice my surgeon is in I think. He always asks what's new in the journey and when I mentioned this to him he said it was no big deal - anything that looks out of whack will be repaired just as a matter of course by the surgeon performing the bariatric procedure. Seemingly they do this all the time. Gotta love it - one stop shopping! :)

“It's not denial. I'm just selective about the reality I accept.”

"It's not denial. I'm just selective about the reality I accept." - Bill Watterson, author of Calvin & Hobbes

Day 83

I like that: selective reality. I guess I've had a lot of that over the last decade or two. This journey keeps unveiling new issues I never even knew I had. The latest: a hiatal hernia. What a surprise that turned out to be. You may recall me noting earlier that the physician that performed my EGD said there were no issues with my esophagus, stomach or duodenum, and that worse-case-scenario was that I might have to take some antibiotics if any of the cultures he took turned out to show a bacterial infection. I received the final results Saturday (didn't read until last night) and guess what: no bacteria, but I have a hiatal hernia.

Recommendation: lose weight (ha!), continue any acid reducer medication for 3 months and then discontinue (I've been on that stuff for over a decade), and change diet -- no citrus, no mint, no caffeine (thankfully I'm off that already), no chocolate (ditto to the caffeine), no fatty or fried foods (ditto again), no garlic, no onions, no spicy foods. Yikes... what's left? And then it goes on to say avoid the following: peas, lentils, beans, many vegies (including artichokes, asparagus, broccoli, brussel sprouts (that's an easy one at least! -- I knew those couldn't possible be good for you anyway), cabbage, cauliflower, cucumbers, green peppers, radishes, raw potatoes), many fruits (apricots, bananas, melons, peaches, pears, prunes, raw apples), wheat and wheat bran, eggs, carbonated drinks, fruit drinks, beer, red wine, sugar and sugar substitutes, and if you're lactose intolerant (thankfully I am not), no milk or other dairy products. Sheesh!!

Anyway, suffice it to say this report was inconsistent with what the doctor told John and I after the procedure, so I called his office first thing this morning to see if there could be a potential mix-up. I should have predicted that he'd be out of town today, shouldn't I? Hopefully I'll hear back from him tomorrow. I think I'll be selective about the reality I accept to this until I talk to him.

In the meantime though, you know me, I did do some more research. Turns out that a lot of us are walking around with small hiatal hernias and they don't do anything about it unless they interfere with swallowing or breathing -- any good stuff like that. It's defined as a loose connection between the esophagus and the stomach with some of your stomach protruding into it. Can cause lots of nasty things like internal bleeding if severe... I have to believe if my selective reality is discounted tomorrow that it's not severe given how I feel.

I also called the surgeon's office to see if this could be a roadblock and was reassured by the coordinator telling me not to worry -- the surgeon will ask for a copy of the films and if it's a potential problem, and if I am elsewise cleared for the bypass, he'll just fix that while he's re-routing all of my plumbing. Fascinating.

In the meantime I read up more on the "PET Myocardial Perfusion Study / Adenosine Protocol" also. The good news is that as of 2004 there had only been two reported deaths from the procedure and both were with patients that had severe pre-existing heart issues. And as advertised, side affects (80% of the population experience, higher for women (another thing I should have predicted no doubt)) include a 30 minute long hot flash accompanied by nausea. Other things he failed to note as potential side affects are headache and chest pain. They administer the adenosine in a six minute infusion and assuming three minutes into it you're reasonably OK, then they add the radioisotope. I can hardly wait.

Speaking of waiting, I am going to have to hurry up and wait to see if my insurance company approves the PET study. I called the woman that coordinates insurance approvals for the cardiology group, and she hadn't even received the request from the doctor yet, even though I say him 4 days ago. The practice is huge -- lots of cardiologists working together, no doubt to afford all that expensive equipment they have -- and in 3 locations. The woman that does the insurance auths is in a different location and the courier runs between locations Wednesday nights. I let her know the doc noted on the request that he wants me to have it in the next 2 weeks. It remains to be seen whether she'll do anything about it before the courier shows up this Wednesday... I think perhaps I will not hold my breath! This is one case where denial would likely work against my psyche.

Back to the wound care doctor tomorrow. John said this morning my lower one looks great and the big upper one looks pretty good. I am hoping the doc doesn't feel the need to debride it again tomorrow... time will tell I suppose. Another place where I think I'll be selective about my reality until I have to be otherwise! ;)

Stretch your heart

"Today, see if you can stretch you heart and expand your love so that it touches not only those to whom you can give it easily, but also those who need it so much." -Daphne Rose Kingma

Day 81

Yesterday turned out to be OK, but a little less than fun. I am thankful that my boss is supportive of my working odd hours because I had to miss some normal working time in both the morning and the afternoon yesterday.

Morning found me back at the cardiologist's office, this time in one of the procedure rooms, having my echo cardiogram. A wee tad uncomfortable, but no biggie. When the tech started looking at my valves I asked her if that was the one that leaked (I've had a murmur since childhood), and she said no. It figures that it was the last one that she got to that turned out to be the leaky one. I asked her how big the leak was and she said "it doesn't leak... it spits." Oh joy -- not only is my heart sideways but it spits. There must be some kind of symbolism there, but heck if I can work it out!

Late afternoon found me losing my battle with the sleep doctor. Although I have very few potential sleep apnea symptoms he is insisting on a sleep study. At least he approved a split-study (meaning only one night instead of two under a sleep microscope), assuming I qualify with my initial readings that night. The big night will be 8/1 -- next Saturday. I am hoping I will pass as this will delay my surgery at least two months if it turns out I do have an issue since if I do I'll have to get a sleep machine of some sort and get used to it before the surgeon will work his magic. The procedure itself sounds odd. The prep instructions are simple -- no alcohol after noon that day (and since I have been off wine for 2.5 months now that's easy) and a shower before going -- no hair products, no body lotions. After I get there I am to change into my pj's and then they'll spend 45 minutes hooking me up to seemingly endless pieces of equipment!! There's a heart monitor, an oxygen monitor (the finger kind), a nose breathing monitor, an eyelid monitor and a brain monitor -- yikes. How the hell can anyone sleep with all that crap on, let alone knowing you are being filmed and observed? When I expressed my concern to the doc about this he said no worries... and proceeded to provide me with 2 sleeping pills -- one for that night and one for another, in case I don't qualify for a split study and have to return for a second night. The split study requires waking me up half way through the night and putting on a c-pap machine to see if that improves the quality of my sleep at all. John has one and it's saved our ability to sleep in one room. Although a bit Darth Vader-esque, it completely eliminates his snoring by rhythmically pushing air into his nose every time he is supposed to breathe. It makes a little white noise while it does so that I find quite soothing. That being said, I still don't want one!!! Not because I care about the Darth Vader image, but because I don't want another 2 month delay. You know me, I am the instant gratification queen.

"...with a little help from my friends"

Day 79

Saw the dietician Friday and she has some great ideas to modify the diet pre- and post-surgery if needed. I have been back on the high protein diet for a week and so retested my blood today. Saw the cardiologist today too. He had another EKG done while I was there and noted it looked pretty good but my heart may be lying a little sideways in my chest... don't laugh now!! There are no issues with that. He's ordering a new echocardiogram (performing tomorrow morning) and a cardiac PET scan -- can't wait for that -- he said it'll take about an hour and you have to lie flat without moving the entire time. Ugh. First half hour is a straight scan. Second half hour is after they inject you with a radioisotope and another drug -- effectively to intentionally stress your heart -- he likened the experience to a 30 minute hot flash without relief accompanied by nausea... sounds like too much fun. Need to get insurance company approval for that so hopefully that won't slow things down too much. Tomorrow afternoon meeting sleep study doctor. The thrills just keep on thrilling!

Saturday I accompanied John for a lovely evening with our favorite casual wine tasting group, the Pompous Twits. The event was at the home of some wonderful friends on their terrific backyard patio. They were so thoughtful -- knowing of my "sitting challenge" they had a special chair with a lovely padded cushion waiting for just me. I would never have gone had it not been for the encouragement from two dear friends who were in the non-drinking section with me. It was nice visiting with everyone, but I confess really hard to pass up the home-made barbeque-grilled pizza and a really decadent looking dark chocolate cake dripping with dark gooey chocolate icing... but I managed to do so somehow. One of my friends brought her own dinner, as did I, so I didn't feel quite so much like an alien.

Weighed in Tuesday evening -- down 48 pounds now! I hope I can stay on this diet. I imagine I'll hear the results from today's blood work next Monday... fingers crossed. Maybe it was worth passing up that pizza and chocolate cake after all. Naw. ;)

Wound pain finally negligible... woohoo. Looking like we're on the path to true healing now. Fingers crossed on that too! The newest wound did break open again when I spent all day Tuesday in awful conference room chairs -- I guess I need to still be careful where I sit.

I don't know where I'd be today without all of the help and support from my friends. You have been awesome. It's great to receive all of your words of encouragement and I truly appreciate those of you who've helped to pick me up when I was feeling particularly down. This experience is definitely producing a see-saw of emotions!!

Thank you.

"Oh I get by with a little help from my friends
Mm going to try with a little help from my friends
Oh I get high with a little help from my friends
Yes I get by with a little help from my friends
With a little help from my friends" - Lennon/McCartney

"Getting to know you, getting to know all about you. "

"Getting to know you, getting to know all about you." - Oscar Hammerstein

Day 72

Thanks to my (wonderful) endocrinologist, I just might have a wonderful new PCP!!! I had my initial visit with her today and what a breath of fresh air! She may just have given me the very best new patient visit I've ever had with any MD short of the gynecological oncologist I met in 1987 (he will be hard to ever top). We spent an hour together. During the visit she called my (wonderful) endocrinologist to consult with him since he knows me and my history pretty well. He wasn't available so she left him a message.

Results from initial visit: a referral to a real cardiologist for real cardiac clearance (vs. the cardio in a traveling box I had been scheduled for at the old PCP's office yesterday -- I'm so glad I canceled it). I'll be seeing him next week. She spent more than an hour with me. Performed an EKG. Looked at my wounds. Thoroughly reviewed my last two sets of labs with me. Concurred that she feels I am a good candidate for the surgery. Gave me a lab slip to test the kidney functions again in a week. Told me what to ask the nutritionist about tomorrow. Gave me some tips to try to help with the leg pain I've been having. Had a real dialogue -- give and take -- trying to get to know me. Yay!!

The old PCP finally called me yesterday to report on the lab results from last Friday -- the same ones my endo was copied on and he had called me Monday. The ordering physician often receives the results a day earlier from the lab than anyone that's copied... so why did he call me two days later than my endo, especially since he knew how upset I was by the first set of tests? Wouldn't you think a doctor would at least have his staff call to let someone in distress know that there was good news? I am so glad that I don't have to see him again!!

The (I am hoping will be wonderful) new PCP just called to share the discussion she had with my endo. Follow up -- and the same day no less! :) It is a wonderful thing. I may just have that primary care partner that I have been hoping for now.

“In these matters the only certainty is that nothing is certain.”

“In these matters the only certainty is that nothing is certain.” – Pliny the Elder

Day 70

Hooray. The re-test results are in and tah-dah: no kidney function problems noted! And who do you think I got the results from? My PCP who ordered the tests? Pshaw. Of course not. My (wonderful) endocrinologist had his office call as soon as he read the copy he received to let me know. Yippee!

Since last I wrote I’ve seen a couple of other docs. All have re-validated the quest for this surgery. It’s great to see the medical community in consistent agreement with something for a change!

I saw my wound specialist last Tuesday morning. He opened both wounds again – ouch. Warned me that he’s giving them another month and if not better he’ll excise all the tissue and sew me up. Ugh. He decided to add some new meds and cover the wounds up this time. I saw him again this morning and he only opened them a little today – thinks now we’re on the home stretch and both are finally responding. Culture came back with strep and staph… yikes. Treating with silver now – yes, the element! Amazing. Talked about the kidney test results. I mentioned before that he did his fellowship in bariatric surgery I think… he said the surgeon’s nuts. Advised me that if the surgeon won’t do it to let him know and he’ll find me someone who will… yay!

I saw my endo last Tuesday afternoon. Shared with him the PCP saga of the day before. He gave me a card of a new PCP who I’m going to meet this Thursday morning – yay! Can’t wait! I called and canceled the physical and echo-cardiogram that were scheduled for tomorrow with the old PCP – I can’t wait to work with someone new! Am hoping she’ll have a different sleep center recommendation – more to come on that. My endo said the only criticism anyone’s ever had of the new PCP is that she tends to get very involved with her patients and cares about their health… wow. What a delight that could be after this old guy!! And back to the surgeon – my endo echoed the PCP and the wound specialist. He said the surgeon’s nuts. If he won’t do the surgery, my endo will call him personally and tell him why he should! Yay!!

Saw the GI specialist for the EGD consult last week and was able to schedule the procedure and have it performed yesterday. Talked about the surgery and again, validation. Yay!!! EGD turned out to be no big deal, other than the RN that shot my systolic blood pressure (bp) number up to 190!! – I have a little bit of a sore throat today, but other than that no side affects. Back to that RN – OMG – if you ever have an EGD, you need better knowledge of the procedure going in than I had if you have an RN like her. Here I am on the gurney, can’t move more than a couple of inches… IV on my left hand, bp cuff on my right arm, oxygen blowing in my nose held onto my head with loops around my ears, and 4 connectors to the heart monitor. The anesthesiologist and I exchanging notes so he can take me under and bring me back… and then with no warning or explanation the nurse shoves this thing in my mouth and wraps it around my head and tightens it up so it can’t move – and mind you it looks like something out of an S&M shop (and like John’s mom, I’m into M&M’s, not S&M) – and I can’t talk and I go into a lovely panic wondering what else are they going to do to me pre-anesthesia. The anesthesiologist notes my bp and asks me what’s wrong. Like I can answer? He has the RN remove the mouth piece and finally gets it when I explain. He goes on to explain they have to put it in before they put me under else they can’t do procedure as jaw will clench once I’m under. I’m cool now – I “get it” once explained. He realizes it was too late so says “We don’t need to put it on until just before I add the happy juice to your IV – would that be better?” Duh!! Way better! He timed it great then – stuck the needle in the IV and told the nurse to put it on and that’s the last I remember – thankfully. Saw the GI guy afterwards and he reported no anatomical anomalies – no ulcers – no reason he can’t clear me for the surgery. Yay!! Took a couple of cultures – said I might have a bacterial infection and he might have to put me on some antibiotics but that’s very normal and not to worry. Double yay again! Another deliverable from the checklist signed off.

So what’s left? Still need by dietician consult, cardiac clearance and sleep study. I’m thinking the cardiac clearance will be easy with the new PCP. Dietician and sleep study a little more challenging. There are no providers for either in my new insurance network – amazing. Spoke with insurance company last week and thankfully they said they’d approve out-of-network exceptions. Got the letters Friday and they weren’t properly filled out (didn’t note approved providers or procedures) so asked for new ones yesterday… hopefully they’ll be here soon. Have dietician scheduled for this Friday and initial consult with sleep center next week. Spoke with billing person at sleep center and she said I need that letter – $5K to have a sleep study conducted. That seems outrageous to me – hence the above note that I want to check with the new PCP to see if she recommends someone else. This sleep center says you have to go back three times! John’s study (at a different center) was all done in the one night – and they selected the device he’s still using today right then and there.

Speaking of insurance, wow. We truly don’t appreciate it enough! We’ve been in an HMO for years so haven’t seen any of our bills other than hospital stays. Now we’re seeing them all. And I don’t know how anyone could be expected to have good medical care without at least the rates that the insurance company negotiates – if not the actual coverage. One example that still has me stunned is my first visit to the wound center – total clinic bill (excluding MD billed separately) $1,400! I pay $20 and insurance company is having clinic write off $500 per their contract!! Holy guacamole!!!

So my biggest learning from last week? Pliny the Elder summed it up: “In these matters the only certainty is that nothing is certain.” It seems it wasn’t certain that my kidneys were messed up and my surgery no longer viable. It seems that bills are just bills until the insurance company decrees what you’ll pay. I’m still not there – but it’s definitely not hopeless.

Wish me luck with the new PCP and the insurance company this week!! In the meantime, thanks for your continuing support… just knowing you’re here with me is a wonderful thing!!

Believe in yourself

"It's so important to believe in yourself. Believe that you can do it, under any circumstances. Because if you believe you can, then you really will. That believe keeps you searching for the answers, and then pretty soon you get it." - Wally Amos

Day 63

My belief system in general has been challenged today. I was close to devastated during the noon hour when my surgeon called me and pronounced that due to the kidney function test results I'm no longer a candidate for the gastric bypass. Holy crap! Here I FINALLY get myself into this mode and on the path and he pulls the rug right out from underneath me.

Not to worry though... you are still eligible for either a sleeve gastrectomy or a lap band. They don't work as well, but they're better than nothing. And the insurance company may not cover either of those options because the former is still considered somewhat experimental -- look up costs and they're $20-25K! OMG! Thank God for good friends at work else I don't know how I would have been able to make it through the rest of the afternoon. You guys are great.

But I get ahead of myself. Shortly after 8 AM this morning my PCP's assistant calls and asks me to make an appointment to come in today so we can "take care of everything all at once today." This makes me worry since the PCP's been so unresponsive. Surely he must have finally looked at the Lab results and decided that yes, I am having a problem and he'd better attend to my medical needs. Or so I thought at the time. Imagine the further panic I feel when the surgeon calls around 4 hours later and tells me he can't perform the procedure. This was followed by a call from his RN who says the dietitian will call me Wednesday and probably put me on a renal diet. OMG - are my kidneys going to fail today? Trying to be rational and realizing if it were that bad my endo would have sent me to the hospital Friday instead of referring me back to my PCP, but having a hard time rationalizing.

Finally 4 PM rolls around and I see the PCP. I like the way John refers to him -- he says he's so blaise about everything he would probably just casually in passing mention you had a terminal illness but not to worry... sheesh. In any case he comes in, looks at my labs and says he still doesn't see what the big fuss is. The numbers aren't that bad. What is wrong with the endo and the surgeon? I look at the labs -- the ones he ordered, vs. the ones the surgeon ordered, vs. the ones the endo ordered. And you know, maybe he is right! While out of the normal range, they're not all that far out of the normal range and there is variation on the same tests performed 3 different times (due to overlapping orders).

So here it is Monday evening and now I'm wondering who should I believe? The PCP calmly says if this surgeon won't do the procedure we'll just find another that will -- he's had a patient with congestive heart failure that the procedure was performed on because of the overall health benefits. And who says if the high protein diet is the cause that they can't modify my post-op diet, and even if they can't, there's no reason to think I'd go into kidney failure as a result of a slightly elevated creatinine level. So there. Neaner neaner neaner.

So who to trust? I see my endo tomorrow so will certainly discuss with him. I have a lot of confidence in him and appreciate his conservatism and caring attitude. I'm also done with this PCP, very done. Have to live with him this month, but will definitely move on to someone I have more confidence in, even if he is telling me what I want to hear today. But I have gone from feeling somewhat hopeless at noon to hopeful once again.

And I know you're dying to ask about the referrals... you know me, so you know I left with them, but OMG, what a pain to get them! The PCP starts down the path of, "Well, if this guy won't do the procedure (even though I think he's an idiot) then maybe we should just wait. He's way too conservative. I've known other surgeons that haven't asked for all this stuff." I jump in and tell him I've done a ton of research and these are standard protocols. He stops arguing and starts producing finally. I have the prelim visit scheduled now for my EGD on Wednesday, a call into the local dietitian to schedule a consult, am waiting for a call from the local sleep center to schedule a sleep study and an appointment for an echo cardiogram next Wednesday. Yay. Progress at last! And it only took a mere 12 days. Can I say "sheesh" again?

And yes, I'm redoing my labs again this Friday. Just the kidney function stuff. The PCP said to drink tons of water and he's willing to bet I'll be back to normal. If I am, then we'll try the high protein diet again and retest again. Fingers crossed.

So at the end of the day, who should I believe in? Myself. Wally's got it right. I have been living with this body longer than anyone else. I've never had kidney problems before. If I have them now I guess I'll have to figure out how to deal with them, but I really don't feel like I have a problem with them, you know? And if I do, I'll keep searching for answers and with a lot of help from my support network we'll figure this thing out, right? RIGHT!

"Our job is not to straighten each other out, but to help each other up."

Day 62

"Our job is not to straighten each other out, but to help each other up." - Neva Cole

Who's Neva Cole? I have no idea... but I surely am blessed to have so many friends that think like her... thanks to all of you who responded to my first blog entry with such wonderful, caring words of support. I know I'm going to need a lot of help on this journey, and I feel very lucky to know deep in my heart that you are all out there ready to help me up as I need it.

One of the questions the shrink asked me during the pre-op psych eval was, "Who is your support team?" This was followed by, "Who will be your saboteurs?" I am still humbled by the thought that a number of people come to mind in response to the first question (John being number one on the list of course!) and only a couple in response to the second.


PCP saga continued...

It's definitely time to get a new Primary Care Physician (PCP). He finally called me back Friday night and started the conversation by chastising me for bugging him on a holiday, only lightly backing down when I asked him if he heard me state in my first message that I was doing so because my endo directed me to do so because he was concerned. Then he went into a tirade about specialists only wanting to take care of the health issues related to their specialty rather than the whole person... sheesh. After 10 minutes of useless blathering he finally said, yeah, you had better do what you've already been told to do and "I'll call you back Monday afternoon after I return to my office." When I asked him again whether I should stop the diuretic I'm on in the meantime he paused and said "I guess it won't hurt -- you won't blow up over the weekend." Such great words of encouragement... I wish I were still in an HMO so I could complain to someone about him. Unfortunately, I need him too much this month so will deal with him as best I can until August 1 and then switch PCPs.

Suffice it to say no status changes on the checklist from Friday. Who would have thought your own PCP might be one of your saboteurs? I never did!

"Do, or do not. There is no 'try.'"

Day 60

Introduction

Fear not: today's entry is catching up on the last 60 days so is very long... I promise later entries will be more concise!)

What am earth am I doing here, starting a blog? Who cares about my journey? Maybe no one else in the world but me. But here I am... taking a leap into cyberspace -- wondering if I've set my privacy settings properly so no one can see this unless I let them... and then wondering who cares if anyone does see this? I've been thinking about this for a while -- weighing the pros and cons of a hand-written journal vs. one on the Internet. Cyberspace won.

What is this? I think this blog is going to be about my journey to a new physical being -- a stronger, healthier body. I wonder if it's going to get any deeper than that? I have spent a lot of energy shutting myself away from others -- is this just a way of building a window into the walls around me, or is it a way of opening a door so I can come out and others can come in?


"Do, or do not. There is no 'try.'" - Yoda, Jedi Master

Master Yoda's words of wisdom sum up the realization I've finally come to about my physical self. I can't "try" to be healthy anymore; I have to "do." After lots of soul searching I finally acknowledge that the first thing I have to do is lose weight -- and in a way that ensures I can sustain the loss.

After lots of research, I've decided the only way I can do this successfully is to completely change my physical self. And the only way I think I can be successful at this this time, once and for all, is with a Roux-en-Y gastric bypass.


The journey begins

This trip "officially" started several months ago with a visit to the endocrinologist (a wonderful man I might add). My weight had reached an all new high, exceeding a milestone I never wanted to have within my reach, let alone exceed. My blood sugar control was barely hanging on and I'm sitting there blithely thinking, "Guess I'll have to start upping my insulin doses again," when he pronounces I'm at the maximum dose he considers safe and removes the option. Bubble burst. I swore I had been "trying" to lose weight -- but I wasn't "doing" it. The increase from my prior quarter's weight was so great he thought perhaps I had a new condition to add to my seemingly endless list of chronic health issues. I eagerly embraced the thought and was sincerely disappointed when the test results came back negative. How crazy is that? To actually hope there was a problem!!

I have had doctors throwing weight loss surgery at me as a suggestion for years. I started listening to the thought a couple of years ago. The above endo visit put me over the edge -- time to "do."

So, my darling John and I went to a seminar about the procedure on Cinco de Mayo. We joked about having great Mexican food afterwards on the way to the seminar. We weren't joking by the time it ended. The surgeon was great -- concisely described the procedural options for weight loss surgery in good layman's terms -- concisely described the rewards and concisely described the risks. Death. Yikes. That's a term I understand at some level but really don't want to become intimately involved with yet, you know? That's what I'm here to postpone. The inevitability is inescapable, but I feel like my time's not quite up, yet.

We are given a bunch of hand-outs including a health bio and a checklist. I filled out the bio and sent it back the next day and then started the long hurry up and wait process they warned us of.

I'm going to start counting this journey looking at May 5 as day 1. That makes today day 60. They told us that "if we qualify" for surgery to plan for it to be 3-6 months out.


The checklist (my interpretation) - including status

1. See a shrink - get a sign off that you are not going to commit suicide when you have to totally change your relationship with food and learn how to eat all over again as an infant would learn. And oh by the way, no carbs. No alcohol. No alcohol? Not even an occasional glass of wine? No alcohol for 18-24 months after the procedure and then if you can tolerate it know you'll be a cheap drunk and 1/2 a glass of wine may well put you under the table. (Do I believe? Not at first! Denial!! Investigate and learn it's true. My sister-in-law had roux-en-y several years ago and can't handle a single glass of wine -- she can do one beer. Woohoo... and we used to be the margarita sisters! What a difference a little re-routing of the plumbing can make). No carbs? Yeah. Not for 18-24 months. Did you ever think about the fact that rice expands in your stomach as it's digesting? I never did... and lord only knows after going through all of this to bypass some 95+ percent of your tummy, you certainly don't want to expand the size of your new "pouch" as they refer to what remains useful. And then when you add carbs back later only allowed in extreme moderation -- better to try not to add back! Status: done.
2. See a nutritionist - notes above - need to learn how to eat all over again. Status: see today's frustrations below.
   
3. Lose 10% of your weight - you've got to be kidding. That's why I'm having the surgery! Then learn that the first thing in your body that loses size when you lose weight is your liver. Your liver has to be small enough for them to use retractors on through some of the 6 abdominal incisions you're going to have with your surgery to hold out of the way so they can get to your stomach and intestines for bypassing. If it's too big, you have to have open surgery greatly increasing risks and recovery time. Yeah, lose 10% of your weight. Status: done, but see today's frustrations below for caveat.
   
4. Get a cardiac clearance from your PCP (primary care physician). Status: see today's frustrations below.
5. Get a sleep study done. Status: see today's frustrations below.
6. Have a million blood tests performed Status: done, but see today's frustrations below for caveat
7. Have doppler ultrasounds of your carotid artery and your leg veins done. This one was a little of a surprise. That was until I found out the surgeon's had a couple of patients lately that had post surgical blood clots that almost killed them. As a matter of practice they give you blood thinners with the surgery, but if you have problems in these areas they need to know ahead of time. Makes really good sense to me now! Back to that I'm not quite ready to die yet thing we were talking about above. Status: done, pending results.
8. Have an EGD done - don't I sound cool throwing around these medical acronyms now? This one is short for esophagogastroduodenoscopy. No wonder they've shortened that! eMedicine describes this as "a procedure during which a small flexible endoscope is introduced through the mouth (or with smaller caliber endoscopes, through the nose) and advanced through the pharynx, esophagus, stomach, and duodenum." Thinking about it it makes sense... most of your stomach is getting stapled off and cut away so they have to make sure that it and your duodenum are healthy because there will be no easy way to see them ever again. Status: see today's frustrations below.
9. Start exercising. I almost forgot about putting this on the list -- Freudian slip? For me this is and probably always will be the hardest thing. Now that I've lost 38 pounds (as of last week) I can walk about 100 steps without wheezing (I was down to about 10). And they want me walking 12,000 a day! OMG!! When Scott and I were in our best condition walking around the lake at the Lab regularly we killed ourselves to get to 10,000 in a day -- and that took months -- and I was a good 50-75 pounds lighter than I am now -- and I didn't have the ridiculous wounds that just won't seem to heal that I have now. Whah whah whah... Thankfully they won't prevent the surgery if you don't get to this before then, but it remains the goal before and then daily after surgery. Status: see today's frustrations below.

Today's frustrations

My longest standing frustration is with my PCP. I am ready to scream!! John and I saw my surgeon for the first pre-op visit last Wednesday morning (9 days ago). Since my surgeon's in Oakland and I hate going to the big city, he provided a couple of letters and a checklist to share with my PCP requesting I obtain referrals to local resources for items 2, 4, 5 and 8 above. I faxed all with a letter from me to my PCP that same morning. I called to confirm it was received and legible. I've been calling every day since for the referrals and am continually told the doctor's busy -- sorry -- the staff's doing all they can. Argh! My PCP's been one of the doctors that's encouraged me to follow this path, and now he's putting up major roadblocks. I have a physical on the books with him for the week after next. I am also seeing my (wonderful) endocrinologist next Tuesday. I am hopeful that he'll help with some of the referrals if I don't have them by then, and if worse comes to worse the PCP will have to help me when I'm in his office face to face in a couple of weeks, but this is ridiculous... and it gets worse.

Bringing me to my newest frustration -- the good news and the bad news. Remember those millions of blood tests I mentioned in 6 above? Well there were also some urine tests. Three docs ordered things -- my PCP, my endo and my surgeon. My endo called this morning (yes, as soon as I heard his voice I was worried, wondering why he was calling me on a holiday at 9 AM). He proceeded to share the great news that my A1C test came back at 6.5 (hip hip hooray -- down from 7.0 last quarter -- and you want this number under 7 if you're a diabetic). And then the reason for the call. My kidney function tests came back not so good. Protein in the urine. High potassium. Uh oh. He's immediately withdrawn two of the meds that I'm on. Directed me to call my PCP and suggested I also call my surgeon and let them know that he's faxing over the lab results he received and wanted my PCP to fax to him the urinalysis results that the PCP should have that he didn't. So at about 9:15 this morning I left a message for my PCP telling him all this and asking him to call me -- and now 8 hours later no call. Argh. I called the surgeon's office and left a message a few minutes later and his RN called back within the hour to have me stop my current pre-op diet. She was great -- very reassuring. Said that since I've never had kidney problems before they should bounce back. And oh by the way if you're taking any diuretics you should ask your PCP if you should stop. So I just left him another message. I am not holding my breath waiting for him to call back...

Final frustration of the day: these ridiculous wounds that refuse to heal! Given how much pain they have me in, it really speaks to my the frustration level I have with my PCP -- that this is subordinate to that on the list. I've been seeing a wound specialist for the last week and a half and his treatment seems to be helping from a visual aspect (or so John tells me -- they're in my groin area so impossible for me to see well) but the pain aspect ain't so great. It hurts to sit forward -- the only chair I'm comfortable in is a recliner in a semi-reclined position. The last 3-4 weeks at work have been miserable. One day I got out of my car in tears -- I couldn't even handle the short drive to work. It seems crazy, doesn't it? If I weren't feeling it I wouldn't believe it either... It hurts to walk too so checklist item 9 above isn't making a lot of positive progress.


Successes of the day

OK, let's end with some good things!!

• They've finally fixed the wheel in "Vampire Wars" on Facebook! :) Who could ask for anything more?!
  
• I've started reading the fifth book in the Black Dagger Brotherhood series and it looks to be another good one (thanks Belinda for turning me on to these -- I hope Puerto Vallarta was grand!).
• John has been enjoying his day puttering around in the cellar rediscovering wine treasures long since forgotten.
  
• The upside of changing my diet is that I had real food for lunch (chicken vegie soup) instead of a protein shake for the first time in around a month.
  
• It's a beautiful day -- didn't get quite as hot as predicted. Great breeze right now -- gotta love living in a canyon.
  
• I started a blog! How wonderfully cathartic it has been to finally share some of this experience.
  

Thanks to my family and friends for your support on this journey. Farewell for now... /gailz