Nothing's Easy!

Today we thought we had a quick & easy dental exam.   Not so!

Well, in truth, the exam itself was quick & easy.  However, the dentist is being thorough and not just signing off on Chris' transplant paperwork.   He gave Chris a special bacteria test.  This consisted of a mouthful of salty fluid which he swished in his mouth for a set period of time and then spit into a cup.  The cup will be sent to a lab for bacterial analysis.

We'll go back to the dentist next Friday and see how the test went.  Chris will also do a full cleaning at that time.  With luck, his bacteria levels will be normal and Dr. McRae can sign the form.

Coming Up:  The kidney doctor's office called this morning and said they're OK with the nuclear stress test, so Chris will go ahead and have that on Tuesday the 25th.

Emerging Issues

When I woke up this morning, Chris was on the phone with Doug (the transplant coordinator from U of Utah).   Doug had received the echo report from the cardiologist's office.  Doug said that due to Chris' valve issue, we'll need to have Dr. Undesser sign off on any kidney transplant surgery.

Dr. Undesser's office called and scheduled a nuclear stress test appointment for Tuesday the 25th.   I'm concerned, though, because this test typically includes the injection of radioactive substances.  Normally, this isn't a huge deal... but because Chris' low kidney function doesn't allow his body to eliminate foreign substances like other people's bodies do, I am afraid this test might be a problem from the kidney doctor's perspective.   I called and left a message for his nurse.

Application On Its Way

It's been over 20 years (did I just say that?!) since I sent out my college applications, but I remember that feeling.  The application has been sent, but the transcripts and letters of recommendation are pending.   Just like now!

The big form was completed over the weekend and mailed on Monday.   Tuesday we faxed a request to the cardiologist to send over the most recent echocardiogram report.   Chris has an appointment to do the dental exam on Friday morning here in Eagle.

We've done quite a bit of research/phone calls for the immunizations and we think we have that nailed down, too.  The nephrologist's office said that doing multiple immunizations at one time will not be problematic because of Chris' condition.  Walgreen's Website has a great function where you can see what immunizations are in stock at which store and then actually make an appointment to receive them.  Here's a link.  So handy!   And the Walgreen's with the shots IS in Humana's network.  (It's not our absolute closest Walgreen's, but it's within 5 miles.)

The Packet

The big packet from University of Utah came yesterday, and we filled out all the paperwork this afternoon.  It will go out via post-paid envelope tomorrow morning.

We have some phone calls to make tomorrow:
- Dentist:  Chris needs to have an exam and the dentist needs to fax back a form stating that he has no oral infections.  His last cleaning/exam was in January 2011, not within the 6th month period required by this checklist.
- Pharmacies:  Chris needs a battery of vaccinations.  (Some others we may not need to have, but they'll tell us if he's immune after he has a blood test in Utah.)  Also we'll need to look up which provider(s) are in Humana's network.  Then, we'll need to select a pharmacy that has the one-dose Tetanus in stock.
- Nephrologist's Office:  We need to find out if he can have vaccinations several at a time, given his condition.  How long in between shots or groups of shots?

Luckily, a few things on the checklist are either done or not applicable.   For example, he had an echocardiogram with Dr. Undesser within the last few months.  And, since he's male, he gets to skip the PAP smear and the HPV vaccination.

For now, we'll work on getting the tasks on the checklist completed.  The packet states that once the dental paperwork is in, we'll get scheduled for the pre-transplant clinic class.  These take place on Wednesdays in SLC.

Looks Like Utah!

Today we had our appointment with Dr. Mallea.   Chris had a bad day Monday and was feeling a lot better today.

Chris' weight is down EIGHT POUNDS since the appointment with Dr. Davidson just one week ago.  Amazing how much fluid/water goes away when you're watching sodium intake!

I was really frustrated because today our insurance provider said that neither Denver transplant center was on our insurance network.  UGH!  I had already made appointments with both of them, and cancelled one, and now I have to cancel the other.

Dr. Mallea suggested Utah, and said he has had good outcomes with them and they're easy to work with.  Easy?  Sounds nice!  :)   They're also closest to us (only 5.5 hour drive).   His office contacted them quickly, and now we're awaiting paperwork from University of Utah Transplant Center.  Guess what?   Our insurance says they're a YES.   Whew.

After we go to Utah for the initial meetings, which we think will be mid-November, then we'll get a list of tests for Chris to complete.  After Chris completes his tests AND after the tests have been evaluated and approved by the folks in Utah, then we'll get a list of necessary tests off to his mom (and hopefully, donor) -- which she can work on in Florida.

We did go to Chris' kidney doctor today and went over his meds.   Chris will do blood lab tests in about 2 weeks and go back to the kidney doctor in 2 weeks after that.   (11/16)

Kidney Seriousness

Today we had the big "come to Jesus" meeting with Dr. Mallea.  I had hoped this day would never come and, although I knew it would someday I really wasn't ready for it to be today.

I had been thinking of Chris' kidney health in terms of his percentage of function.   It had been 27% for years and years.   So today the first thing I asked Dr. Mallea is what the percentage is now.   He did the calculation and came up with 9-13%.   *ACK!*   No wonder he hasn't been feeling good!

Dr. Mallea had us both sit down and he really talked to us about getting the catheter put in for dialysis.   Chris REALLY doesn't want to go this route, but Dr. Mallea is making it sound necessary.   See, if the time comes when Chris needs emergency dialysis, it'll be too late to put in the catheter in his abdomen.   They'll have to do one in his chest, and Chris will have to do the blood dialysis instead of the abdomen fluid dialysis -- which is problematic because of his heart condition.

I'm nervous about Chris' gamble.   If he ends up with the blood dialysis thing and gets an infection, he may no longer be a candidate for a transplant.

We did schedule an appointment with Dr. Davidson for a 2nd opinion on 10/4.   I personally doubt we'll hear anything different this visit, but who knows?   Maybe there's some other treatment out there that we haven't tried.

Jeans!

Chris' echo and his visit with the Cardiologist was just fine. They called later to say that everything was normal, and added "for you". They were pleased that he had lost so much weight.

Yesterday, we went to the mall... armed with a gift card and a few items to exchange. Chris found two belts (not stretchy!), a dress-up shirt for a wedding we're attending in May, and a pair of jeans. Size 38/29. Jeans are a significant purchase because he hasn't worn them for 15+ years. His balance due after the gift card was applied? Eleven cents. Thanks, Mel!

Weight right now is 201.

Updates

Dr. Koble's office called Monday to follow up on Digit's eye. It's certainly better than Tuesday when Chris took her to The Cat Doctor, but she's still winking and is clearly still irritated. (Chris has taken to calling her Babe-raham Winkin'. Nice.) We picked up new medicine {Erythromycin ointment} for her yesterday and are administering it 3x/day.

Speaking of phone calls from the doctor's office, Chris heard from Valerie late last week. Apparently, upon further examination of his labs, Chris is leeching Calcium. I think it may just be that he's no longer drinking 3 gallons of milk per week. But Valerie thinks he needs a prescription-strength calcium supplement. So yesterday we picked up Calcitriol 0.25 mcg capsules which he'll take every other day. Hopefully this will help.

I did call the cardiologist today for the echo appointment. The receptionist saw Chris' chart but it didn't say he needed an echo.... just a doctor visit. So she'll call me back and we'll figure that out too.

Edited to Add: Glad I asked her to check because he DOES need the echo. That's scheduled for Tuesday, April 21st at 9am with a follow-up with Dr. U at 10am. [I seriously wonder what happens with patients who don't have someone keeping track of everything like this.]

Doctor Days

We see lots of medical professionals, and this week's no different!!

First, Chris took Digit to The Cat Doctor this morning. Her eye was bothering her. We got an eyewash solution last night at the drugstore, but it turned out to be more than just a little irritating thing in her eye... it was an eye infection. So we've now got medicine to apply to her eyeball three times a day for the next 7 days.

Digit was sneezing a bit, so her bedding is in the washing machine now... this time with dye-free and fragrance-free detergent. (I thought I was doing her a favor by adding extra pretty-smelling fabric softener, but it turns out she may not have liked it so much.) Sorry, Widge!

Chris is nearly 100 pounds lighter than the last time we went to see our vet, Dr. Koble. I'm sure it was cool for Chris to have someone be so amazed by his weight loss. I bet it'll be similar when he sees Dr. Undesser (as soon as I call to make the appointment... note to self!).

Then Chris saw Valerie @ Idaho Nephrology this afternoon. She scared us six weeks ago with her poster and questions, but today was different. Chris' labs were EXACTLY the same as the last visit, which means his kidney function is very stable. But his these labs have been nearly identical since mid-2001. So, while we are armed with some information now about dialysis & transplantation, the stated goal is to not have the kidneys deteriorate further. His blood pressure was a little high at the beginning of the appointment, but taken later it was well under the 130/80 point. (This 130/80 point is where we need to keep his BP -- if it isn't done with diet/hydration/exercise/relaxation, it'll have to be done with medication.) Oh, and he was at 211 today. This is 10 pounds less than his weigh-in only 6 weeks ago!

His next follow-up is in late June, this time with Dr. Mallea. And the week after that is his 1-year follow-up with Dr. Oakley. Still need to call Dr. Undesser, though, for the annual echo & heart stuff.

Speaking of doctors... we're taking the CR-V to the car doctor tomorrow for a water pump, timing belt and oil change. I'll probably stop by Pep Boys for an air filter and then over to Les Schwab for a tire rotation and pressure check early next week. Whew!

Kidney Meeting

So this afternoon was the much-anticipated kidney meeting at the DaVita location in Boise. There was a video (which Chris & I watched alone in a room... and during which I got up and changed the calendar on the wall) and then a technician came in and read us a printed-out PowerPoint presentation.

Basically, there are choices with pros and cons to each. We probably would have done better by just reading the Wikipedia articles on Peritoneal Dialysis and Hemodialysis. We asked a few questions (like whether the length of each treatment varies on a patient's size and how one goes about preparing for a transplant), but they weren't answered. She did give responses, but not any sort of answer specifically related to the question asked.

After the sales pitch, we went to St. Luke's for Chris' labs. We'll be back on the 17th with Valerie's interpretation. Oh yes, and it's time to call and schedule an annual echocardiogram & cardiologist appointment! :)

New Clothes (and Pizza!)

Chris doesn't eat much in the way of carbs anymore, but there were some he just couldn't resist. There's a terrific pizza place nearby that has something called "Your Day". When it's Your Day, you get to come in and make your own pizza with any toppings you want... and it's free. Chris took me when it was My Day and on March 4th, it was His Day. I tried to get the turkey hat on My Day, but it was already taken. Chris got lucky and wore the turkey hat, as you can see. From what you know about Chris, it should be no surprise that his pizza was full of meat, cheese, and meat. He even skipped the mushrooms so this would be an all-animal pizza. Good grief.

Frank was his assistant in the pizza-making venture... and he introduced Chris to their oven (called Dante) and all the other pizza equipment. Even the vat of flour had a name. Frank was hilarious and very well-cast.


Then for his monthly (eight months!) post-op picture, here he is! He's all decked out in new button-down shirt and slacks that fit nicely. He got a 2nd shirt today, too. Thanks to Mom, who sent the gift card! He spent only about half of it today and I'm sure he'll find more nice clothes there soon.


We've got our meeting with the kidneyfolk on Thursday the 12th along with bloodwork and then a follow-up with the doctors on the 17th. It's a busy 2 weeks coming up!

7 Months Post-Op

I find this picture of Chris to be rather amazing. Last summer, this shirt languished in his closet because it was too small. Now it's too big! He's down to 220.

He needs new pants and at least one new belt. Things are falling down. He's almost done weeding out his super-sized clothing from the closet. Thanks, Mel, for the shirts from Penney's! He wears those almost every day now. We're planning a big yard sale in the spring, and 4XL men's clothing will definitely be up for grabs!

We did finally hear from the dialysis place today as a follow-up to our appointment on February 4th (read about it here). They only do these meetings on certain Thursdays at 2:00. (We hope they're more flexible about other things!) We're scheduled for the 12th of March.

His next kidney doctor appointment is March 17th, and he has to have labs done a few days prior to that. We save some time and take him on Thursday after the meeting if we're up for it. In the meantime, he's supposed to be checking his blood pressure at various times during the day and keeping a log. And keeping hydrated. And all the other things on the list.

One important thing on his list is not to get sick -- so much so that he even has to take antibiotics when he gets his teeth cleaned {which reminds me...}. By midday today, I wasn't feeling so hot. I really hope I'm not coming down with something.

Nephrology News

We met with a new Kidney specialist today. Chris had been weighed (221... woohoo!) and had his blood pressure checked by the nurse. Normal range. No problem. Typical rubber-stamped follow-up. We thought.

Then she came in, toting a big poster. Stages of Chronic Kidney Disease (CKD) and Renal Failure. Grrrreeaaaattttt. Chris is in the middle of stage 4. She started talking fast. Are you itching? Are you nauseous? How's your energy level? You're anemic. Your bones are losing calcium because your kidneys aren't making enough Erythropoietin. You'll need injections. You've got some edema here in your legs. Keep checking your blood pressure. Let's take it now. 130/70, we need to watch that. Do you take iron? You'll need more Vitamin D. There's a presentation on options for dialysis vs. transplantation. Their office will call you. We may have to medicate for blood pressure. Check it often. Let's do blood work. Come back in 6 weeks. We should check for Phosphorus.

(Seriously, checking his blood pressure in the middle of all that? It was probably 180/100 by the end there! I know mine was.)

We interjected a few questions we thought might be helpful. Can he eat more protein in an attempt to counteract the anemia? No. He's taking Calcium with Vitamin D already, will that work? No, not a high enough concentration. He's got an iron supplement in his bariatric vitamins. He'll need more.

I left the office deflated. I thought losing all this weight and being off the medications was a terrific thing. He was finally going to be OK... like before all this craziness. And now he's not. I haven't cried yet. I think I'm still in shock. Feeling lethargic, defeated, frustrated, sad.

So my plan is to get as much rest as I can tonight (come to mama, Klonopin!) and try to hop back on the horse tomorrow.

New Year, New Guy

Here's a before-and-after comparison of Chris on the 10th of July 2008 and on the 10th of January 2009, just six short months later.

In the old picture, he's wearing a 4XL t-shirt. In the new picture, he's wearing a new XL shirt his sister-in-law Kristine brought him from the Denver area. {She originally brought an XXL, but it was too big!} Also notice that it's tucked in!

His 6-month surgical follow-up appointment was a success and everything looks good. They did recommend a change in vitamins but, since we just purchased a 3-month supply, he will be switching at the beginning of April. His weight right now is 227, which is 80+ pounds less than his pre-op appointment weight.

I'd say that's pretty ROSSOME!

December Pic

Check it out! He's down to 233 at the time of this photo. That's right -- down SEVENTY FIVE pounds from his pre-op appointment. Isn't that great!?

My sister Kris was in town last weekend and brought Chris some Broncos items. The 2X t-shirt was too big! Granted, it was a giant 2X, but it was too big! More progress!

His monthly bloodwork results have been great, too. So good, in fact, that we don't need to continue with the testing at this time.

Coming up, Chris has his 6-month follow-up appointment scheduled for the beginning of January. Then his annual cardiologist visit is usually in April.

November 10 Pic

He went to the Cardiologist last week and all seems well. His blood pressure was below the 150 (for the high number) point. He said if it's consistently above 150, it's back to the medications.... so we'll continue to monitor it.

He's switched up his workout routine and isn't spending much time in the water nowadays. It's too darn cold! Instead, he's doing weights and interval training on an exercise bike.

Next up is Thanksgiving, his favorite day of the year. We're having guests, as usual. He's a great host and a wonderful cook!

October Progress

Chris worked very hard this month and he has lost even more weight! Actually, this photo was taken on the 10th, so he's half-way to another photo.

At the beginning of October, he hit the 250 mark and he was treated to an hour-long massage. Got rid of lots of toxins!

Bloodwork is still being checked every month. He's watching fluids (getting enough to maintain hydration) and off medications. Monday or Tuesday will bring a blood pressure check to make sure he doesn't need to return to any of his medications.

We'll be back with another photo next month! :)

Another Picture

Here's Chris' third picture on the 10th. He's down to 259 -- which is 49 pounds lost since his pre-op appointment. I know when he hits 250 he's going to be asking for a massage or a tattoo or a motorcycle. It seems that Dusty decided, once again, that he wanted to be part of the action. He loves his Daddy. Digit is a Daddy's girl, too.


We got the bloodwork back on Chris from the appointment in August, and he was doing better with the hydration. Dr. Mallea has ordered monthly bloodwork for a while to see how/if things stabilize.

We're waiting on a shipment of special bariatric chewable vitamins and hope those arrive soon. (Although I think Chris is looking more forward to the carb-free/sugar-free pancake mix & syrup. Aren't you, honey?) In the meantime, he'd better be taking his Flintstones chewables.

We did hit a new milestone today. Are you sitting down? A container of milk EXPIRED in our fridge -- and a half gallon, nonetheless! This has not happened for the nearly 11 years Chris and I have cohabitated. It blows my mind. He used to be a 3-gallon-a-week drinker.

So far, it doesn't seem that he's found himself intolerant of any foods he has tried. Salad went OK and he's eating beef, too. My friend from Grangeville said she planned to bring some venison and/or elk in October and he's chomping at the bit to try that too. He'll have to wrestle it from my dad. I hope they can share. :)

Progress

We had an appointment with Dr. Mallea on Thursday. It was a good meeting, but there was some concern about Chris' hydration levels. He has been instructed to drink more and then have some follow-up bloodwork done this coming week.

We're both still adjusting to this new life. Chris is on the go every single day... fishing, swimming, taking water aerobics classes. If someone would have told me in February that in six months Chris would be exercising at the Y sometimes TWICE in one day -- or that he'd be waking before dawn to go to fishing and be back in bed before my alarm rang -- I would have shook my head in disbelief. I would have to ask "Do you know him?"

I felt very overloaded this week. We had a big weekend event at work coming up and I have so many things going on... my brain went on vacation without me. That happens. Rarely. It happens to me when I'm on overload. I did laundry on Thursday night specifically so I could wear my red shirt to work. While putting the washed clothes into the dryer, I didn't see my red shirt. It was on the bed. *growl* At least doing another load of laundry isn't such a terrible consequence. It does, however, make me ever-so-thankful that the intersection was clear when I ran that red light during one of these mental disconnects.

Chris & I decided to take his picture every month on the 10th to show his progress on a consistent basis. I leave you now with his 10-day post op picture and today's.

Like a fish to water

I've recently changed up my exercise program. I now try and ride the recumbent bike at the IAC 5 days a week in the morning (I'm up to 35 minutes on level 2), then in the evening I go to the YMCA and swim in the lap pool for 30-60 minutes. Ok, I can't really call it swimming per say but I thrash with my arms, legs and sometimes both at the same time to get one from one end of the pool to the other (25 yards). I must be doing some work because it tired me out. I never really learned how to swim because the summer I was supposed to learn, I burned my face pretty bad in a fireworks "experiment" and I couldn't go into the pool for 2 weeks. Its hard work and because of my heart I have to take frequent breaks, but its good exercise and the Y has the nicest pools around.

In other news, I went "off the reservation" so to speak regarding my blood pressure medications, I'm currently only taking the attenolol at night and have been doing this for about a week now. Today the blood pressure machine at wal-mart said I was running 105/55, and thats without being on them for a week. Hopefully when we go to the doctor next week he won't yell at me too much, but my dizzy spells have been reduced to mere mild annoyances instead of falling over.

Sadly I'm having a new problem with insomnia. I have RLS (Restless leg syndrome) I run marathons at night in the bed, and its very hard to fall asleep when your legs wanna get up and walk to alaska even if the rest of you is bone tired. I was taking Requip for this, but my new stomach is super sensitive to this medication and within a few minutes of taking it I get some pretty violent dry heaves and nausea. That can't be good for my new intestinal arrangement. As a bonus when you stop taking requip, studies have shown your RLS gets worse. I'm gonna ask my doctor about a more stomach friendly medicine or possibly a sleeping pill prescription.

The other night I was up until 5 AM unable to sleep, I tried several different things. Eventually I ended up walking in circles from my front door to my back door for 25 minutes. For the first ten minutes the cats (Dusty and Digit) just watched me walk back and forth like I had gone insane. However, pretty soon Dusty was running the route I was walking and he did so for about 15 minutes, he slept better than I did I think.

In more swimming news I took Kim to the Y with me yesterday as a guest and we spent a couple hours in the pool, it was nice to be there with someone else. We are trying to get her signed up and get her dad signed up also. They have a bunch of free classes for Y members and I am looking at the water aerobics as some fun kind of exercise. I must admit at first I was nervous about taking my big white belly to the Y for swimming fearing they might try to harpoon me or shove me back into the pool whenever I got out, but hey, the Y is filled with people just like me. Now my attitude is yeah, I'm a fat guy in a pool, (though rapidly shrinking) what ya gonna do about it?

The scale says 277, which means my 2 week stall at 280 may finally be over, still not sure where the weight is dropping from.