Wednesday, October 21 - Endocrinologist Appointment

I've been seeing my Endocrinologist every four to six weeks to check my vitamin D level, calcium level, and parathyroid hormone level (PHT). Everything was going well up to this appointment. I had my blood drawn the day before so that it would be read for my appointment. She said that my vitamin D and calcium levels were okay, but my PHT level was high again. That was quite a shock to me! I asked what it was and she said 86.3. Since I didn't know how high that was I asked what the normal range was and she then told me it was anywhere from 17 to 70. I figured okay... it's a little on the high side, but I can deal with this. Then I asked what it was when I was there four weeks ago and she said 23. Okay... I was thinking that it was crazy to have jumped sooooooo high in only a month's time! She said that it may have been a mistake at the lab, but I really wasn't going to get my hopes up. I was fighting back tears as I thought to myself, "What freakin' timing... If my calcium and vitamin D levels go haywire then I will have to have ANOTHER parathyroidectomy WITH A FREAKIN' NEWBORN!" I held it together as long as I could. We talked for a minute and she said that I needed to come back in two weeks to have my blood work done again. I made it out the front door and just burst into tears. One more thing to have on my plate. As if I'm not dealing with enough physical problems right now. We'll just have to wait and see what happens I guess. Hmmmmmmmmmmmm........

30 Going On 13... Yeah... I Said It Right...

Tuesday, February 10th, 2009

Bird's Eye View of the Hospital in Iowa City.

Today Mandy and I ventured down to Iowa City for many different reasons... the first being that I had my post operation check up with my surgeon. Following that... lunch... OF COURSE... and then wedding gown shopping and looking for wedding rings for Matt. We had such a fun day together! Mandy picked me up at around 8:30 in the morning and we were off to U.I.H.C. It takes about an hour and 15 minutes to get down there, but then it took forever to find a parking spot!




So... I checked in and was sent back to the lab for blood work (3 vials) and then down to the radiology department for some x-rays. The first one was of my lower leg bones from my ankle to my knee and the second was of my femur, from my knee to my hip. They took the x-rays of my right leg, which I thought was odd since my left leg hurt more, but I'm sure they know what they are doing! :o) My left hip was hurting especially today which made walking around the hospital a bit tiresome... especially since I didn't get out my sweet wheels (walker)!!! You know... I didn't want to make Mandy jealous since she didn't have one to scoot around the joint with!!! :o)


After my x-rays were done, I went back up to where I checked in and waited for a few minutes to see Dr. Lal, my endocrine surgeon. If ANYONE reading this ever needs surgery for your parathyroid, thyroid, etc... I would HIGHLY suggest this woman! I can't believe all that she has done for me during this whole ordeal. I even told her that my mom and I were impressed that she actually called me to see how I was doing after my surgery. Usually... when I have surgery I never see that person again! She replied that her job wasn't over with surgery. I was very touched that she would call and she even called my pharmacy to straighten some medication questions out! Now that is what I call EXCELLENT service! It really means alot when you can feel that someone truly cares about your health and wellbeing. If you are reading this... THANK YOU!




After a bit, I was called back to see Dr. Lal and she explained a few things to me. She said that my parathyroid hormone level was 94 and while that was a tad high (65 is the high end of "normal") she wasn't too worried. When I first went in to Covenant hospital, it was over 1,ooo!!! Before my surgery in Iowa City, it was 911 and right after my surgery it was 10... yes... ten. So... she said that it's a good sign that it was higher because that means that my remaining two parathyroids are "waking up" since my massive one was pretty much taking over everything!

I also recieved a sheet of paper "Surgical Pathology Examination" and my diagnosis was as follows:

A. Parathyroid, right lower, parathyroidectomy: Hypercellular parathyroid tissue (2.83 grams), consistent with parathyroid adenoma. (Dr. Lal said that hypercellular means that 50% of my large parathyroid was fat cells and that the other 50% was parathyroid cells. It was 2830 mg which was smaller than a plum. Normal is about 50 mg which is about the size of a small grain of rice or about 4 millimeters! It was VERY large in comparison!)

B. Parathyroid, right upper, parathyroidectomy: Benign parathyroid tissue (0.22 grams). (This one was also larger than normal, being 220 mg... normal is 50...)

History
30 year old female presented with calcium 19 and PTH 1000. Severe vitamin D deficiency...

And then there was some other stuff that I didn't understand on there. Anyways... she explained what the important things were and I just love that she takes the time to explain it all to me in a way that I can understand!

Close up of my sweet neckmeat... you can see the stitches on each end in a loop.

She also took out my stitches and told me that I should moisturize and massage my neck to help reduce the puffiness of the scar tissue underneath my surgical site. Also, I need to remember to use sunscreen on it as well. Interesting side note: It takes about 2 years for a scar to heal after surgery.

Dr. Thomas O'Dorisio - Endocrine Specialist,

Me - Freak of Nature,

Dr. Geeta Lal - Endocrine Surgeon

I also finally got to meet the other endocrine doctor, Dr. O'Dorisio. He was so funny! He told Mandy and I that he had on his Jerry Garcia tie and that the name of it was, "Creme de Menthe Hangover". He was so nice and funny! He told me that he was really worried about me that night that I was starting to cramp up due to my hypocalcemia! It's crazy how everyone tells you how worried they were about you after the fact... I guess people don't want to cause alarm in an already scary situation! Anyways... they were great and even let me take a picture with them! Yes... I'm a dork... I know this. :o)


***Soooooo... I go back down on Tuesday, February 24th for my bone density scan (DEXA) and to meet with Dr. O again on the Endocrine Floor.


After my meeting with them, we traveled by elevator to 2RCE where I almost got my arm ripped out of the socket trying to hold the elevator door open... with NO LUCK. I had to quickly reclaim my arm before it was gone forever! So... we went back to where I was admitted the first time to see Perla, my great nurse, but unfortunately she wasn't there. I did get to see Meghan and Robin, some other nurses and aides that helped me as well. They were ALL so fantastic! I miss them!

"Unlock Your Inner Chimp"

Then... we went to the gift shop and bought some fun key chain thingys called "MonKEYS... Unlock Your Inner Chimp". I thought I'd give them to all my close friends, because we all need to unlock our inner chimps! I kept the orange one for myself since Jaren does that same face lately! :o) I was parched at that time and Mandy said, "I have enough change to blow up the world", which was the funniest thing that I heard up to that point! After that we got in line to buy some Sprite or... "Spree-tay" as we called it. Mandy said to the cashier, "We'd like these... unless they are like 4 dollars a piece... then they'd be called Spree-tay..." like Tar-jhay... :o) We were just crazy! Too many laughs!! I'm from... IO-WHAT?! Yeah... I can't even remember what THAT ONE was about! Everything ended in "WHAT?!" We are such nutty fools, I tell ya! That's how I like my friends... nutty and chimplike... just like me! I seriously felt like I was in Jr. High again! I was 30 going on 13!


Sooooo... we leave the hospital and head to Walgreens where I purchase a short sleeve shirt to change into since it was "GORGE" outside! (Yeah... I changed in the car on the way back to Cedar Rapids while Mandy was driving down the highway... ah... the good ol' wild child days were back again... if only for a brief moment...) I got some more calcium, some watercolor kits for the kids and some delish Cashew Roca... oh my gosh... heavenly to my tastebuds!

Bread Pudding... BEFORE...

Bread Pudding... AFTER...

"Look, Ma... I'm a Whirling Dervish!"

We finally get to Cedar Rapids and eat at Biaggi's Italian Ristorante... I don't know if that's the whole name or not... but man... it was DELISH! Mandy ordered Butternut Squash Ravioli with walnuts and I ordered their special, Rigatoni De La Nona which was crispy eggplant and basil on a bed of Rigatoni pasta topped with marinara sauce and mozzarella cheese chunks throughout. YUMTASTIC! WOW! It was excellent! (Too bad I left it in Mandy's car... ARGH!!) Then... for dessert... we split White Chocolate Bread Pudding and I even licked the plate afterwards... (only because we were like the only people in there AND... I just got off the crazy train!) "My food baby is crowning"... yet another hysterical moment of our crazy outing! We are both certifiable... I think... ;o) Our waitress had a good laugh chatting with us and witnessing our crazy antics! As we left... we sang... "The hills are alive.... with the sound of music... Ah... ah... ah... aaaaaaaaahhhh..." while I twirled around in the parking lot. Yes... flashbacks to Jr. High... :o)

Moving right along...

Next stop... Crazy Town... no no no... David's Bridal... *cue cheesy commercial ditty* "You'll Love David's Bridal..." We looked through some dresses, but didn't have much luck as they were all pretty much strapless. Not a modest one among them... BLECH! Don't get me wrong... the ladies there were really wonderful about trying to find dresses that were simple, yet elegant and tried to find some with a tad more coverage. Not everyone wants their goodies hanging out for all the world to see!!! It's kind of frustrating... but anywho... we came home and looked online for some dresses that actually had sleeves on them and found some GORGEOUS options! Yay!!! After that we looked at a jewelry store so Mandy could get some ideas on what to buy for Matt's ring and found a few that she liked! I'd post the photos, but I don't want to spoil the surprise IF she chooses one from that bunch! :o)

Close up of Mandy's GORGEOUS ring from Matt... It's just breathtaking... I LOVE IT!

Anyways... THANK YOU, MANDISA for such a wonderful day of chatting and crazy times! I will truly miss our girly dates when you move!!! We'll have to just plan some girly WEEKENDS in order to hang out now! :o)

LOW LEVEL ALERT!

So... I've been getting my blood drawn weekly, sometimes twice a week, since my parathyroid surgery. I had it taken earlier this week and Dr. Lal called and said that my Calcium AND Vitamin D levels were low (you need one to absorb the other). SO... I went back today to get my blood checked and my CALCIUM, VITAMIN D, MAGNESIUM AND PHOSPHOROUS levels were ALL low... AGAIN!!!!!!! I just want to scream! I just got one changed from a liquid to a pill form AND picked up ANOTHER form of Vitamin D to take. Here is what I take on a daily basis...

Calcium Citrate (3 large horse pills/4 times daily)

Calcium Carbonate (4 tums/as needed 4 times daily)

Ibuprofen (1 pill/as needed every 6 hours)

Hydromorphone (1/2 pills/as needed every 4 hours) GONE

Magnesium Oxide (1 pill/3 times daily)

Calcitriol (1.5 ml/twice daily) OR (3 pills/twice daily)(Vitamin D)

Easy Lax (1 pill/twice daily)

Senna (1 pill/twice daily)

Vitamin D (1 pill daily)

Citalopram (1 pill daily)

Omeprazole (1 pill daily)

Ergocalciferol (1 pill/Every Wednesday)(Vitamin D)

K-Phos (3 large horse pills/3 times daily) NOT NEEDED as of yesterday... who knows now, I might have to start taking them again!!! AGH!

So... as you can tell... I have a large amount of medicines in my body on a daily basis! Since Dr. Lal (my surgeon) is out of state, Dr. Ordificio? is supposed to call me and tell me what to do now. I'll keep you posted...

"WHAT THE HEZZBOLLAH IS WRONG WITH ME?!?"

Those of you that know me intimately, know that I've felt crappy on and off for the past couple of years. I've dubbed myself a hypochondriac of sorts, but believed the ailments to be true due to the pain and discomfort I have been in. I've frequently made the following statements to family, friends and indifferent aquaintences...

"What is wrong with me?"

"I feel like I'm falling apart!"

"I'm 30 years old and I feel like I'm 90!"

You get the picture. Finally... FINALLY I have been vindicated. I am NOT a hypochondriac! I'm a perfectly abnormal freak of nature who's been dealing with hyperparathyroidism for the last several years or so. I've had so many different things wrong with me that it seemed impossible to find the culprit. It was a rather large parathyroid that was reeking havoc in my body these many years!

**Normally people have 4 parathyroid glands that are the size of a grain of rice... one of mine was the size of a plum!

**My calcium level (the blood test that proved it all) was 19.4... normal is around 8. My surgeon said that was the highest she's ever seen, as well as the endocrine specialist at Covenant Hospital.

**My vitamin D level should have been around 30 and was a 7! She also said that was unheard of for a patient my age! I need vitamin D in order to absorb calcium!

On with the story...

As I'm recovering from Heel Spur Surgery, I'm feeling nauseus, vomiting (wretching) and feeling lightheaded. (Go figure I also got my period at this time as well... I know... you're jealous) I figured the first week it was a side effect of my pain meds as the doctor had warned me of before. Week two... I ended the pain meds... but my pain did not end. Saturday, January 3rd was when it all came to a head. I was home alone (Ed was working and Ed's parent's had the children while I was recovering) and all of the sudden I had a horrible pain in my gut! I thought I had to use the restroom so I went there and sat for a bit (constipation is also a side effect of the pain meds). I was doubled over in pain when a hot flash came over my body and so I took off my shirt and eased myself down to the cool hardwood floor of the hallway. I felt horrible! It was about 6:30 in the evening and I was in such pain that I called my mom to take me to the ER. It was freezing rain so my mom called the ambulance to take me. I hobbled out the door to the stretcher and into my first ambulance ever. One of the guys was a jerk and rolled his eyes when relaying my ailments to the nurse in the ER. Anyways... my mom was there when I was crapping my pants (well on the portable crapper they bring in) and throwing up at the same time... yes... she was gagging and so I told her, in between my wretching fits of a mossy green bile substance, to leave the room... that I was sorry she couldn't handle it in there. Yuck... who could! Soooooo... they poke me and get some blood and discover... that I'm weird. I have an EXTREMELY HIGH CALCIUM LEVEL in my blood. So, they admit me to Covenant where I have an EKG, get poked and proded all night long, have a horrible potassium drip burning through my veins, have high blood pressure, a CT scan, an X-ray of my chest and an ultrasound of my neck. Sound fun yet???

I saw several doctors from the Family Practice Center, none of which was my real and I have to say CRAPPY doctor, that came in and pretty much told me the same thing as the previous one had just told me. Anyways... I really liked Dr. Munns. She was the one that came in on Sunday and said that they found out what was wrong with me. She said that it was my parathyroid whose function it is to regulate the calcium in my body. For some reason my calcium was being leeched from my bones into my blood stream and reeking havoc in all parts of my body. (During these past few weeks my bones have begun to hurt like HELL!)

I had a Fine Needle Aspiration with Ultrasound on my neck to rule out cancer. It looked like there was a large tumor on one of the parathyroids and two nodules on my thyroid. The FNA at Covenant was only done on one of the nodules which was not cancerous. I knew that I had to have a parathyroidectomy and chose to have it done in Iowa City with a doctor who specializes in those kinds of surgeries. Since it's close to many arteries, nerves and my vocal chords, I wanted someone who knew what they were doing! Dr. Lal was going to be my surgeon.

I was at Covenant from Saturday, January 3rd to Thursday, January 8th and on Thursday evening was transferred to Iowa City to the UIHC (University of Iowa Hospitals and Clinics) via an ambulance... again. I almost peed myself in the ambulance and was getting ready to go in a bedpan when the driver said we'd be there in 12 miles if I could hold it... I did, but suffered a severely stretched out bladder I must say!! :o) I was admitted here in the epilepsy unit since that was where there was an open bed! The nurses were all fantastic there! I was poked dozens and dozens of times for blood and IV's leaving many bruises and bloody spots behind. NOT HAPPINESS. My calcium was high, so they pushed liquids through me to get it out of my system... my magnesium, phosphorous, potassium was all low. If my levels got too low, I would go into cardiac arrest. My nurse, Perla, said today that she was really worried about me! I had more thyroid scans, x-rays, ultrasounds and lab work done. My kidney function was below normal and I was just a mess! My bones hurt SO BAD that it hurt to walk, just to sit in bed hurt... to exist hurt!!! It's hard to describe bone pain, but WOW... not good and medicine didn't even touch it! My bones in my toes hurt, my wrists, elbows and knees... I could go on and on. Things are starting to get better. My calcium depletion was the reason for it. It was like I was suffering with short term osteoporosis. So... I was having many things go through my IV and taking many different pills as well as getting two heparin shots in my belly everyday to prevent blood clots! It seemed like everyday someone would tell me that I had something else wrong with me! On Monday I had another Biopsy (FNA) with Ultrasound done on my neck. This one was WAY more painful and left me big and bruised! He numbed me up first, which hurt, and then had six 5 - 6 inch needles that he would take individually and poke them into my neck, tap on them til they went down and then would wiggle them around and eventually pull them back out! "NEEDLE IN THE NECKMEAT!!!" WOW... the third one really hurt so he numbed me up again for three more. I was in pain for a whole week after that! Nothing was cancerous, but they did say that I probably did have Hashimoto's Disease as the biopsy showed at Covenant. Even though I have it, my thyroid function is fine for now, but I may have to be on medicines in the future for it for the rest of my life. Then... my potassium level was low AGAIN and they put the IV in me and I cryed for an hour and a half. For some reason my veins couldn't take it anymore! I broke down and called my friend to ask her for someone to come and give me a blessing. About a half hour later, two priesthood holders who work here at the hospital came and gave me a blessing (a special prayer). When they left, the nurses came in and turned it off. Such relief! It turns out that I can take it orally instead. It tasted like really salty homemade playdough! Much better than being in horrific pain for long periods of time, I must say!

Soooooooo... my levels were fine and I was prescribed several medicines to keep my levels stable between now and my scheduled surgery on January 22, 2009. I was released from UIHC on Wednesday, January 14th, stayed in a hotel with my mom and traveled home to Waterloo in the morning. We counted over 20 cars in the ditches due to ice storms and blizzard conditions that have been happening in our area these past few weeks. On our way home, I stopped by my doctors office (lab) to get poked even more times... I'm a glutton for punishment! I needed to stop there to have my levels checked every few days to make sure that I was good to go for surgery the following week.

NOT SO FAST...

Deja vu people... what do you suppose happened that following Saturday evening when I was home alone again. You guessed it... the same symptoms only THIS time I was tingling all over my face, lips, hands, arms, feet and up my legs. My hands started to cramp as well as my mouth. My lips were pursed and I was having trouble speaking properly. I knew that the tingling was from LOW CALCIUM from before. I felt this way after they pumped the calcium out of me. Now I was experiencing hypocalcemia. So... I called my brother Chad to take me to the ER. I called the number I had for Iowa City first and she said to call the ambulance and go to my local ER. Back to Covenant again. Good Night... I hadn't even unpacked my suitcase yet, so Chad drove behind the ambulance to the ER and met me there. Ed showed up a little while later. (Thanks Dan...) Anyways... I was nervous because I felt that if my calcium level is THIS LOW... are my other levels low... could I have a heart attack?!? I was pretty scared at this point. I knew that my calcium level may come back "normal", but for me... "normal" is low since I've been used to the high levels for so long. Anyways... after several hours... from 10 pm Saturday night to 5 am Sunday morning I laid in the ER until the doctor had a "pow wow" with the doctors in Iowa City. He came in and said that all of my levels were low and that I was going by ambulance to Iowa City. So... here I go again in the ambulance down to IC. This time my blood pressure was REALLY low and so I had to have another IV shoved into me during the very bumpy ambulance ride. I was pretty scared this time. I went straight to the ER there and they said that my levels were looking good again. So... they asked if I had a ride home and I was like... "WHAT?" So I called mom at 8 am and her and Chad came and picked me up. I stayed at her house since she didn't want me to be alone again. She was pretty ticked that I wasn't admitted and so was I. So... Ed got the kids and brought them to mom's in the afternoon. It was the first time I saw all of them in such a long time. I really missed seeing them! Jaren seemed to have grown so much! He even had more teeth coming in this time! Such sweet kids... I hope they don't forget me! So... Ollie and Eden spent the night with my mom and Chad and Jaren came home with us at about 8 pm. I hopped into the tub to soak my painful bones in hot water only to have Ed bring me the phone... it was my surgeon! She was pretty miffed that no one had called her to say that I had been in Iowa City in the ER. She said that she would have admitted me! She also said that there was a new doctor that didn't know about my history and that is why they let me go. Sooooo... she and Dr. Wilson were trying to call me all day long. She told me to go ahead and come back down tomorrow (MLK Jr. Day).

BACK IN IOWA CITY...

So... Ed let me sleep until 10 am and then off we went to UIHC AGAIN. Now I was in the surgical unit and being prepped for surgery. Usually the calcuim level drops AFTER the surgery. In my case it dropped BEFORE surgery. We needed to get it back up to a "normal" level for me so I was choking down antacids like they were going out of style! BUT... Dr. Lal told me on Sunday... my Vitamin D level was extremely low... therefore I wasn't absorbing any of the calcium I was putting into my body... triggering my tingling feeling and cramping muscles that drove me to the ER and landing me in the I.C. ER!!! CRAZINESS!!! SO... she told me to come down as a precautionary measure to pump me up with a calcium drip and move my surgery to Tuesday instead of Thursday, just to get the blasted thing out of me! So... Mom was here, Ed, my wonderful husband was here and my grandparents came up as well. Surgery was at around 2:30 pm on Tuesday, January 20th. I went in with 4 parathyroid glands and came out with 2 and a large exit wound to my neck... which really hurts. It's about 2 inches long and in the middle of my neck. I've been on pain meds, which really don't help a whole lot, but oh well... what can I do about it! This morning Dr. French came in during rounds and told me about the size of the ginormous parathyroid that was removed. I couldn't believe that something that large was in my neck and I didn't know it! Evidentally it was fairly mushy so it was easily hidden. Now... I'm sitting here in bed... at 11:30 pm... typing for all of you fine folks who have taken the time to read about my crazy month of pain and frustration... At least I'm on the healing side now! In about a month I'll feel like a brand new person... or so they say!

Thank you so much for all of the prayers and well wishes that you've all said on my behalf! I could still use them on this crazy road to recovery... who knows how long that will end up being. Hopefully soon!!! Thanks to ALL of my doctors and nurses, friends, family and acquaintances during this time! I also recieved some beautiful bouquets that brightened up my otherwise dreary days! Thank you, Thank you, Thank you! I love you all!!!! ***"Where's my award... it's like a thank you speech at an award's show... wait... don't take the microphone down into the floor and turn on the music... I'm not done yet..."***