September 24, 2010
Friday
NAMC 4-N: Dr. Sankar popped in at 7:30 am to report that my overnight calcium level is back up to 8.2 so I can check out this morning. He wants to see me in his office next week, where we will do another calcium level check. He is happy that things seem to be going well with my calcium. He is going to the nurses station to write up discharge notes and I'm outa here!
Afternoon: Home again. Not going in to the office this afternoon. Back to work on Monday. Today is rest and taking lots of Calcium... 500's 4 times a day. Bernadette cautions me not to take them with anything with phosphorous cause it'll bind with the calcium and escort it right out the other end. Only useful to keep my level up when taken without food.
9/24/10
9/23/10
407) Check out day?
September 23, 2010
Thursday
NAMC 4-N: Dr. Sankar stopped in early this morning and shared that he thinks the calcium level is slowing and beginning to level off. As we discussed before it dropped from 10.3 to 10 to 8.4 and then to 8.2 where it was at last reading. He anticipates it will level and I should be able to check out of here early evening today. Nurse Barbara was in here while he reports and will be reporting back on how I am doing, plus there is more blood work to check the calcium level today.
A few minutes later, Dr. Lewis stopped by to see me and I told him about Sankar's report. He sounded happy about that and left. Then Bernadette came by and we discussed the whole thing about taking more calcium, levels, being careful to not go from hyper parathyroidism to hypo parathyroidism, etc.
Throughout all this I was also nibbling at my breakfast and trying to slip into the day... wanting to take a shower and get back to finishing grading papers for the class.
I'll be adding to this post as the day goes on...
Later: 1:30 pm... Barbara the Nurse runs in to tell me my morning calcium level: 8.2 again... it has stayed the same as last one... so maybe it is leveling... Barbara will call Doc Sankar and see what he thinks.
Thursday
NAMC 4-N: Dr. Sankar stopped in early this morning and shared that he thinks the calcium level is slowing and beginning to level off. As we discussed before it dropped from 10.3 to 10 to 8.4 and then to 8.2 where it was at last reading. He anticipates it will level and I should be able to check out of here early evening today. Nurse Barbara was in here while he reports and will be reporting back on how I am doing, plus there is more blood work to check the calcium level today.
A few minutes later, Dr. Lewis stopped by to see me and I told him about Sankar's report. He sounded happy about that and left. Then Bernadette came by and we discussed the whole thing about taking more calcium, levels, being careful to not go from hyper parathyroidism to hypo parathyroidism, etc.
Throughout all this I was also nibbling at my breakfast and trying to slip into the day... wanting to take a shower and get back to finishing grading papers for the class.
I'll be adding to this post as the day goes on...
Later: 1:30 pm... Barbara the Nurse runs in to tell me my morning calcium level: 8.2 again... it has stayed the same as last one... so maybe it is leveling... Barbara will call Doc Sankar and see what he thinks.
Later: 6:00 pm... Barbara the Nurse came in just before leaving for the day and said that my latest blood work from this afternoon shows my calcium level is down to 7.4! DAMN! Dr. Sankar hasn't called but we know that this lower level means I stay another night. Nurse Barbara won't be working tomorrow so we said our goodbyes with a hug. She is one fine nurse!
A few minutes later Lizzie and Shayna came to visit and stayed til about 9 watching the new season shows on TV. Next blood work is at 3 am. Nurse Fe checked in and we discussed the situation and she gave me meds and calcium and my stomach shot and we're off to another evening. At least there is good TV tonight. And, I have all the time in world to continue grading my papers. Onward thru the fog!
9/22/10
406) Calcium Dips
September 22, 2010
Wednesday
NAMC: Up by 6 am cause lots of poking and testing here. I started playing on the Mac Dr. Lewis pops in about 8 and reports that my Calcium looks good and I may be able to check out today. WOW. Bernadette pops in an hour or two later and asks if Dr. Sankar embedded a piece of my parathyroid in me somewhere and my completely confused expression told her I had no idea what she was talking about. She says, "sometimes they put a little piece of it back in you somewhere to get the extra hormone out and back into your system." Weird!
The rest of the morning goes by expectedly: Eunice the Nursing student from ACC comes in to take my BP, temp, and pulse a few times... and is attended by her instructor, Sherry, Cheryl, Ashley, or some other similar name. I have confused it several times already... Barbara comes by to say "HI", gets me some Nursing station coffee to supplement the food service coffee.
I must say though, the food at this place is the best hospital food I have ever had! My over easy egg, hash browns, and bacon this morning were wonderful. My lunch of a vegetarian quesadilla filled with zucchini, grilled onions, and peppers and here-made pinto beans was also really tasty. I think I may have written about the food here when I got my tra
nsplant too. Lizzie comes over from the school and joins me for lunch, and eats my salad (which I really ordered for her anyway). She's off back over there for a meeting from 3 til 5. If I stay tonite, Shayna wants to come up to see me.
Later: So, finally, at about 2, Dr. Sankar pops in after surgeries and reports that all is going well: my calcium is dropping just he thought and he believes it'll drop a bit more before starting to rally. He also told me about a reading I hadn't heard about. It started at 10.3, then dropped to 10 and last time dropped again to 8.4. He anticipates another drop and then maybe it'll start going up again. He is doubling my calcium intake to rush the whole process along.
I called Liz with the news and post it here for the rest of you arm chair physicians.
Wednesday
NAMC: Up by 6 am cause lots of poking and testing here. I started playing on the Mac Dr. Lewis pops in about 8 and reports that my Calcium looks good and I may be able to check out today. WOW. Bernadette pops in an hour or two later and asks if Dr. Sankar embedded a piece of my parathyroid in me somewhere and my completely confused expression told her I had no idea what she was talking about. She says, "sometimes they put a little piece of it back in you somewhere to get the extra hormone out and back into your system." Weird!
The rest of the morning goes by expectedly: Eunice the Nursing student from ACC comes in to take my BP, temp, and pulse a few times... and is attended by her instructor, Sherry, Cheryl, Ashley, or some other similar name. I have confused it several times already... Barbara comes by to say "HI", gets me some Nursing station coffee to supplement the food service coffee.
I must say though, the food at this place is the best hospital food I have ever had! My over easy egg, hash browns, and bacon this morning were wonderful. My lunch of a vegetarian quesadilla filled with zucchini, grilled onions, and peppers and here-made pinto beans was also really tasty. I think I may have written about the food here when I got my tra
nsplant too. Lizzie comes over from the school and joins me for lunch, and eats my salad (which I really ordered for her anyway). She's off back over there for a meeting from 3 til 5. If I stay tonite, Shayna wants to come up to see me.Later: So, finally, at about 2, Dr. Sankar pops in after surgeries and reports that all is going well: my calcium is dropping just he thought and he believes it'll drop a bit more before starting to rally. He also told me about a reading I hadn't heard about. It started at 10.3, then dropped to 10 and last time dropped again to 8.4. He anticipates another drop and then maybe it'll start going up again. He is doubling my calcium intake to rush the whole process along.
I called Liz with the news and post it here for the rest of you arm chair physicians.
9/21/10
405) Parathyroidectomy
September 21, 2010
Tuesday
NAMC ~ 7:05 PM: so, here we are again, getting signed in and preped for another surgery. These beginning notes were taken by Lizzie while I acted as the "patient". Now, if I can only read her notes! We are in the ambulatory surgery wing with our first nurse, Jay. He is giving us the lowdown on what all we can expect, when it should occur and setting my first IV feed. Quite a while later, it seems, my anesthesiologist, Dr. Lima enters and we discuss my knock out drugs... in this instance a "general anesthetic". She promised to take good care of me and Ilda the Nurse (2) and I talked for a good while, while Liz kept calling Shayna unsuccessfully 13 rimes to get her up for school. Finally, she was able to reach her with a TEXT message!
Ilda rolled me down through the halls... and as a rider on the gurney, mostly we notice the hall walls and ceilings going by... and into the O.R.,where I first see Dr. Sankar. He is smiling his usual self and I quickly ask my two questions which I have been concentrating on remembering since we arrived: 1) can I get a room up on 4 North, the kidney floor? Sure. And (2); can I see / have the overgrown parathyroid? No. Its just a little brown peanut. We have to send it to biopsy... he reports. Okay.
Dr. Lima brings over my ultra-seal disposable face mask and gently places it over my nose and mouth and before I can say, "Winken, Blinken, and Nod" I'm off in the ozone and then I hear lovely Lizzie's voice saying something like, "Jack... here's your meds... time to take your meds..." and she holds them up to my lips, one at a time, in a little paper catsup cup. This is a very complicated process over and over and over again, for drowsy dopey me. I think I said something like, "Hooray. I am still alive and on the planet...", maybe. I was very sleepy and immediately went back off to dream-land. This part of operations is definitely my favorite part: in and out of consciousness with not a care in the world, cept of course knowing I am still IN the world. Liz notes in her notes that the time is 9:30 am.
So it goes... off and on and on and off for some unknown length of time, Liz is gone and left me with "sweet blond" (<-- Liz's notes) Nurse Valerie (#3) who is very sweet (and I don't use "sweet" hardly EVER). Every time I come up the stairs to consciousness she is there, telling me I did good and all is well, etc. I find out much later that the reason I dreamed of Liz bringing me my meds was that she WAS doing so... she had gone to the car to get them... and been allowed into recovery cause none of the staff can handle "outside meds" cause they are "unauthorized" and may be laced with poison or some such thing. Finally, at 11:30 I am mostly awake and it is time to be rolling on up to 4-N. Valerie kisses me goodbye, gently on the cheek, hugs Liz and sends us away to new nurses and adventures in hosptaland. (So far, Nurse Valerie is my favorite, as you can probably guess.)
We arrive to find Nurse Barbara and Cowgirl Sabrina who I recognize from my last stay on 4-N, a year and a half ago now. They see lots of patients but it only takes a few minutes to remind them who we are. Both of them are like "the best" and we are immediately kidding and teasing and making a fun time here on 4-N.
Bernadette stops by and we talk meds and tell her the surgery evidently went well. She has touched base with Sankar and relays his message of success and Liz tells about her brief talk with him just after he finished the operation. I can tell Lizzie is relieved. She and I set in to making this room our room, getting out the lap top and spreading our junk around in a homey way. They bring me "clear liquids" and I get my first coffee of the day (2 big styro-cups) along with orange jello, mushroom soup (clearly not clear), iced tea, apple juice, milk (clear?), and banana pudding. I drink coffee and pump Liz for all the answers about what happened while I was in La La Land.
She has already called my Dad, her Mom, John & Katie, Kim, Shayna, and Jen. We talk about how happy we are, how good life is, de tails of the day, etc. etc. while the nurses come in and out and measure all my bodily fluids and measurable signals of health. I find I have to stay in bed today and pee in the jar. I'll wait to poop til tomorrow, thank you.
Then, another meal comes! Its dinner! Two fajitas, beans straight up, ice T, a salad with French dressing, and more banana pudding, yum yum... Liz gets one of the fajitas and the iced tea and I gobble down the rest after we have talked and talked and watched the ABC Evening News. The she leaves to go home to Shayna.
Nurse Reba takes the floor after Barb and I don't recall yet much about this shift. I didn't get to see "The Good Wife", so I watched "Parenthood" which was pretty lame tonight. I busied myself writing the Ode to Liz, two paragraphs below...
The over-night crew comes on and it is Nurse Lissy, who remembers the thank you letter I sent when I left after the transplant, and which hung up in the Nurse's lounge for many months. This tidbit makes me feel very good that they so graciously accept my accolades last time.
+><+><+><+><+><+><+><+><+><+><+><+><+><+
Somewhere in the beginning of tonight's post, I wrote:
"I STARTED THIS POST AND THEN, ALL OF A SUDDEN AN OLD TUNE POPPED INTO MY HEAD... and I dedicate it to my BFF, main squeeze, love of my life... Lizzie!"
Here I am again...back in that same old place again,
seeing all those friends again... lyin' here dreaming of you.
You stayed here with me again... and sent in the light again,
and gave me my meds again... as I woke up to you.
Yeah, I'm back on 4N again, resting in my room again,
and flirting with those nurses again... jest like an old fool.
I'm missing you here again... even tho you just left; when?
Here I am - can't find my pen...even tho you findin' it ain't cool.
Hope you're smiling now on the couch in the den, knowing that YOU are the comedienne
and that I'll take a taxi in the pouring rain ...cause I'm always comin' home to you!
l'm always comin' home again... laughing all the weigh is what I intend
and back to my old self again... and waiting 'n' wanting to make fondyou.9/14/10
404) THIS WEEK IS National PKD Week!
September 14, 2010
Tuesday
This is National PKD Awareness Week!
"What's that?" you say? Its the week where we PKD People let the world know more about our disease! Visit the PKD Website now to find out more.
Unfortunately, Austin is NOT having a PKD Walk for the Cure this year, because the interest in our local chapter has fizzled. There is one, however in San Antonio
Saturday, September 25, 201o
Check it out! Donate! Go and Walk!
Later: Liz and I met with Dr. Sankar, a young, curly headed Indian with a quick smile and a completely American voice. He got to the office after we had been waiting for 20 minutes, which allowed me to read two of my student's first papers on their theory of change.
Dr. Sankar rushed in, apologizing for being late by saying he just got out of surgery. He again explained how the lower right parathyroid gland has enlarged and the others are asleep and we'll clip that one out and the others should wake up and start doing their jobs. The operarion takes about 1 and a half hours from start to finish, will be done early in the morning and then I'll "hang out" in the hospital for a few days (maybe up to 4 or 5) while they pump me up with calcium til my sleeping glands take over the job. It is impossible to tell how long that'll take and he wants me in the hospital through that process.
So, all we have to do now is decide WHEN I'll go in. After some discussion about when is best for Liz, best for me, etc., we decided that I'll go in next Tuesday morning at 5 am.
Tuesday
This is National PKD Awareness Week!
"What's that?" you say? Its the week where we PKD People let the world know more about our disease! Visit the PKD Website now to find out more.
Unfortunately, Austin is NOT having a PKD Walk for the Cure this year, because the interest in our local chapter has fizzled. There is one, however in San Antonio
Saturday, September 25, 201o
Check it out! Donate! Go and Walk!
Later: Liz and I met with Dr. Sankar, a young, curly headed Indian with a quick smile and a completely American voice. He got to the office after we had been waiting for 20 minutes, which allowed me to read two of my student's first papers on their theory of change.
Dr. Sankar rushed in, apologizing for being late by saying he just got out of surgery. He again explained how the lower right parathyroid gland has enlarged and the others are asleep and we'll clip that one out and the others should wake up and start doing their jobs. The operarion takes about 1 and a half hours from start to finish, will be done early in the morning and then I'll "hang out" in the hospital for a few days (maybe up to 4 or 5) while they pump me up with calcium til my sleeping glands take over the job. It is impossible to tell how long that'll take and he wants me in the hospital through that process.
So, all we have to do now is decide WHEN I'll go in. After some discussion about when is best for Liz, best for me, etc., we decided that I'll go in next Tuesday morning at 5 am.
9/10/10
403) NKF Email on "bundling" dialysis services
September 10, 2010
Friday
I received this email today and want to share with all readers:
If you or your loved one have chronic kidney disease or are on dialysis, you are not alone. For information and support from other people like you, join the National Kidney Foundation's Patient and Family Council at http://www.kidney.org/patients/pfc/index.cfm
Friday
I received this email today and want to share with all readers:
Dear NKF Patient and Family Council Members:
By now, many of you have heard about the Centers for Medicare and Medicaid Services (CMS) new rules for payment and delivery of dialysis, which were announced in July, 2010. To help you and your families better understand these new rules, which are often referred to as "bundling" of dialysis services, and how they may affect you, the National Kidney Foundation had developed a "question and answer" resource. This information is available to you on the NKF's "Kidney Drug Coverage" website at: www.kidneydrugcoverage.org/BundlingQnA.html. Please read through it and feel free to discuss with your families, other patients and with your healthcare team at your dialysis center. We will continue to provide you with "patient-friendly" information about this subject as it becomes available.
Casey Greenwood LMSW
Patient Services Director
National Kidney Foundation
30 E. 33rd St.
New York, NY 10016
Ph: 212-889-2210 ext. 144
Fax: 212-689-9261
If you or your loved one have chronic kidney disease or are on dialysis, you are not alone. For information and support from other people like you, join the National Kidney Foundation's Patient and Family Council at http://www.kidney.org/patients/pfc/index.cfm
9/9/10
402) Hyper-Parathyroid Consult Results
September 9, 2010
Thursday
Several evenings ago, Bernadette called to report that both my virus tests were negative, so I do not have Epstein-Barr or the other unnamed virus that are frequent in post transplant folks. Good news, we all agree.
This morning Liz and I went to meet with Dr. Paul Moore to find out the results of his analysis of my hyper-parathyroid tests (click 'hyper-thyroid' for complete info on this disease & see post # 400). His nurse, Nancy, came in and weighed me and got my BP (180 lbs! 140/60 BP). Dr. Moore came in, introduced himself to Liz, and began his review of my testing, giving me the tests results and explaining what they mean. Liz scooted over so she could see to.
First, the results of the blood work on the Lab Report, as follows:
PTH Intact ~ [Normal = 12 - 88]. Mine is 226 pg/mt. <-- "Way too high." Since I am taking synthroid, I should cut back on that... "take one less per week".
TSH ~ [Normal = 0.44 - 4.37]. Mine is "too Low" at 0.11 uIU/ML <-- I have no idea what these numbers and letters mean.
Calcium ~ [Normal = 8.7 - 10.0]. Mine is too high at 11.2 mg/dl.
Dr. Moore explained what these all mean. My left right parathyroid "...is way over producing calcium... sucking it outa my bones..." which has caused the other parathyroid glands to "...go to sleep..." and lay dormant. The over calcium production is not being corrected by my Sensipar.
On the second sheet, the Imaging Report (gamma camera) the lower right side lobe is enlarged... Dr. Moore poked me gently right there to show us where the lobe is. Both this scan and the ultrasound (third page) show that this lobe is enlarged and has "increased persistent activity", meaning it is working too hard.
All of this suggests a surgery to take the overworking lobe out. According to Dr. Moore, taking it out should "... awaken the other lobes to start functioning normally." (<-- I hope). I asked Dr. Moore about what the symptoms of what these tests would be and he replied, "the textbook answer would be this would lead to fatigue, stomach upset, and raised BP". AHA!! I got dem things these days!
So, here is the plan. These reports and Dr. Moore's recommendations sent to Dr. Lewis and Dr. Krienke. We stabilize the parathyroid by lowering the synthroid, Dr. Lewis refers me to one of his group of surgeons he works with, and we schedule surgery. One week after surgery, Dr. Moore wants lab work and wants to see me again.
Lizzie and I left Dr. Moore's and picked up Shayna to go to Rosh Hashanah services. We are happy to have an answer to this ongoing parathyroid issue, and it seems, from Dr. Moore's work that it will be much simpler than it would've been if all the lobes were outa whack! Also, me thinks, it is better than finding out I have Epstein-Barr.
So we end up celebrating the new year at services, and then head over to Cari & Stuart's for our New Year's luncheon. L'shanah tovah everyone!
Thursday
Several evenings ago, Bernadette called to report that both my virus tests were negative, so I do not have Epstein-Barr or the other unnamed virus that are frequent in post transplant folks. Good news, we all agree.
This morning Liz and I went to meet with Dr. Paul Moore to find out the results of his analysis of my hyper-parathyroid tests (click 'hyper-thyroid' for complete info on this disease & see post # 400). His nurse, Nancy, came in and weighed me and got my BP (180 lbs! 140/60 BP). Dr. Moore came in, introduced himself to Liz, and began his review of my testing, giving me the tests results and explaining what they mean. Liz scooted over so she could see to.
First, the results of the blood work on the Lab Report, as follows:
PTH Intact ~ [Normal = 12 - 88]. Mine is 226 pg/mt. <-- "Way too high." Since I am taking synthroid, I should cut back on that... "take one less per week".
TSH ~ [Normal = 0.44 - 4.37]. Mine is "too Low" at 0.11 uIU/ML <-- I have no idea what these numbers and letters mean.
Calcium ~ [Normal = 8.7 - 10.0]. Mine is too high at 11.2 mg/dl.
Dr. Moore explained what these all mean. My left right parathyroid "...is way over producing calcium... sucking it outa my bones..." which has caused the other parathyroid glands to "...go to sleep..." and lay dormant. The over calcium production is not being corrected by my Sensipar.
On the second sheet, the Imaging Report (gamma camera) the lower right side lobe is enlarged... Dr. Moore poked me gently right there to show us where the lobe is. Both this scan and the ultrasound (third page) show that this lobe is enlarged and has "increased persistent activity", meaning it is working too hard.
All of this suggests a surgery to take the overworking lobe out. According to Dr. Moore, taking it out should "... awaken the other lobes to start functioning normally." (<-- I hope). I asked Dr. Moore about what the symptoms of what these tests would be and he replied, "the textbook answer would be this would lead to fatigue, stomach upset, and raised BP". AHA!! I got dem things these days!
So, here is the plan. These reports and Dr. Moore's recommendations sent to Dr. Lewis and Dr. Krienke. We stabilize the parathyroid by lowering the synthroid, Dr. Lewis refers me to one of his group of surgeons he works with, and we schedule surgery. One week after surgery, Dr. Moore wants lab work and wants to see me again.
Lizzie and I left Dr. Moore's and picked up Shayna to go to Rosh Hashanah services. We are happy to have an answer to this ongoing parathyroid issue, and it seems, from Dr. Moore's work that it will be much simpler than it would've been if all the lobes were outa whack! Also, me thinks, it is better than finding out I have Epstein-Barr.
So we end up celebrating the new year at services, and then head over to Cari & Stuart's for our New Year's luncheon. L'shanah tovah everyone!
9/3/10
401) Colonoscopy Consult
August 31, 2010
Tuesday
Today I met with Dr. Poreddy to discuss need for another colonoscopy. Amy, the nurse informs me that the last time I was there was EXACTLY ONE YEAR AGO TODAY! Weird! That time I was here for "slow emptying stomach" which I remember as "indigestion" and got some prilosec (see Post 379 for details). So we discuss my current situation, tests that Dr. Moore is doing, and my history of colonoscopies with Dr. Hanschen. When Poreddy hears how long it has been since my last colonoscopy, he immediately says, "Oh, you need one now..." and that's the end of this consult.
Dr Poreddy mentioned that he requested Hanschen's records and hasn't received them... so I volunteered to call and see what I can do to get them. Onwards thru the fog!
Tuesday
Today I met with Dr. Poreddy to discuss need for another colonoscopy. Amy, the nurse informs me that the last time I was there was EXACTLY ONE YEAR AGO TODAY! Weird! That time I was here for "slow emptying stomach" which I remember as "indigestion" and got some prilosec (see Post 379 for details). So we discuss my current situation, tests that Dr. Moore is doing, and my history of colonoscopies with Dr. Hanschen. When Poreddy hears how long it has been since my last colonoscopy, he immediately says, "Oh, you need one now..." and that's the end of this consult.
Dr Poreddy mentioned that he requested Hanschen's records and hasn't received them... so I volunteered to call and see what I can do to get them. Onwards thru the fog!
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