Second opinion informative - Day 164

Today is Saturday, the 164th day after Jim's esophageal cancer surgery. It has been a mostly quiet day, except for the occasional beep of the heart monitor he is to wear for the next 29 days.

Yesterday - Friday, he had a second opinion appointment with Dr. Stephen Bailin, a cardiologist at UIHC. We like Dr. Bailin - he explains things so you understand what's going on and what isn't and he doesn't give you the impression whatever he says is what you should do. He listens to the patient and the family. He's going to be Jim's new cardiologist going forward. Good-bye Dr. Li.

We arrived 30 minutes early for our appointment. Weight and blood pressure were taken right away - 129 pounds fully clothed and BP was low.... 78/43. The EKG was normal.

We discussed not resuming the Coumadin - he has been off it since Oct. 1, when he was diagnosed with a bleeding ulcer that resulted in another 5-day stay in the hospital. The multiple periods of dizziness and lightheadedness in a given day have been absent. He was feeling better. There have been two brief moments of dizziness, however, in recent days - one was Oct. 18, the other Oct. 19. If there were others, Jim hasn't said.

It was determined even though he had one episode of a stroke (ischemic), he has not been in AFib since his June surgery for the bowel obstruction. It was decided he didn't need to be on Coumadin, just a baby aspirin.

We discussed an alternative medicine to the Flomax taken for the prostate. Flomax can cause low blood pressure / dizziness too. Even though he has been on the medicine for a long time, it may possibly be causing problems in his body now.  So the medicine Alfuzoin was considered as one less likely to cause hypotension. But we didn't end up going that route, at least not right now.

Another potential medicine is Midodrine which can raise blood pressure. Dr. Bailin asked if Jim had had an ultrasound. He did have an endoscopic ultrasound March 31. Apparently Jim has a congenital defect, with a flap-like opening in the wall of the heart. Usually this flap closes at birth, but there are some cases where it stays open. It appears Jim is one of those "cases."

Jim had his blood pressure taken laying down (84/49), sitting up (76/43) and standing (80/45). Then he had blood drawn for a cortisol stimulation test, which shows an excess or deficient amount of cortisol and how the adrenal glands are functioning. I'm not sure what his results mean. The preliminary numbers were 8.4. On Monday, Oct. 26, we found the final numbers to be 22.0 - elevated from the standard range.  By Friday, Oct. 30, we learned the numbers were not abnormal, so I'm guessing the adrenal glands are functioning just fine.

The doctor wants to try him on the Midodrine, the smallest dose of 2 1/2 mg 2 to 3 times a day - morning, noon and supper time. The round pills are very hard to cut in half, even with a pill splitter.

Also, Jim is to be on a heart monitor for 30 days to see how he is doing. Records will automatically transmit to UIHC. Whenever he has an episode (dizziness, lightheadedness, shortness of breath), he is is push the button on the monitor.

Interim Pastorate
Jim began serving as interim pastor at Wilton (Iowa) Baptist Church in October. We started traveling to the Wilton area Tuesday, Oct. 13, to visit church members. The next time was Wednesday, Oct. 21, and Jim went by himself. He did just fine driving to and from.

Sunday, Oct. 18, was Pastor Appreciation Day. All pastors who have ever served at Wilton Baptist were invited to a luncheon after worship. On this day, besides Jim and me, there was Mike and Ginny Roberts. Mike used to serve in the Cedar Rapids area, but now is in southeast Iowa as director of missions. Craig Horning, a former Cedar Rapidian and Immanuel member, who now lives in Deming, N.M., came with us. I had the afternoon off from work, so was able to enjoy more of the festivities.

Sunday, Oct. 25, Jim will preach from 1 Peter: 2:11-25 on "The Nitty-Gritty of Every Day."

Awana and Canning
Wednesdays are special - we take our grandson to Awana - Austin, who will be 4 in a few short weeks, is in Cubbies. He seems to enjoy the time there and is learning about Jesus.

Jim often is tired. I can't imagine why sometimes - he has taken up the art of canning and has come to be pretty good at it, via instructions from the internet. On Oct. 14, he canned 4 pints of tomatoes and 2 pints of applesauce. On Tuesday, Oct. 20, while I did Gazette work at home for six hours, Jim made homemade vegetable beef soup and homemade bread. We delivered the homemade goodies, including applesauce, to Cathy's adopted mommy, Miss Anna, and had a nice visit.

Follow-up visit Nov. 11
Jim's 3-month follow-up visit with Dr. Parekh, his cancer surgeon, has been scheduled for Nov. 11. It may be his 3-month visit, but it's 6 months after surgery.

His next appointment with Dr. Bailin, his new cardiologist, is Jan. 15, 2016.
   

Questions - Day 153

We have more questions than answers re:  Jim's health care after three hospital stays and two surgeries.

Jim was released from UIHC at 4:45 p.m. Monday, Oct. 5, after a five-day stay for internal bleeding / bleeding ulcer.

In my readings,  I have found an ulcer is a hole generally in the stomach or small intestine, but can be anywhere in the gastrointestinal tract.  Jim's ulcer formed at the juncture of the esophagus (1-2 inches) and stomach, where he had his esohagectomy May 12.

His thoracic surgeon, Dr. Parekh, says the tissue is still new and fresh and not healed,  leaving it more susceptible to problems. His primary care physician, Dr. Butler, whom Jim saw Oct. 8,  says it's been 5 months ... it should be healed!

In our visit with Dr. Butler, he made these comments:
**Coumadin does not cause dizziness
**Coumadin does not cause bleeding. It can cause you to bleed more, but not to start
**You can have reflux from stomach back up even if you do not have heartburn, therefore, you should be on pantoprazole.
**An acid blocker could heal the ulcer
**Some other medicine Jim is on causes the dizziness, such as Flomax or Benedryl.

Our unanswered questions:
**Why did Jimmy have dizziness when on Coumadin (June - September), but since being off of it (Oct. 1), there is none?
**Why is dizziness listed as a side effect of taking coumadin if that is not so?
**Why has it been said coumadin can cause low blood pressure which can result in dizziness?
**Why hasn't the tissue area healed where the esophagus and stomach were sutured?
**Why is he on Pepcid, an acid blocker?
**Why is there no clear cut direction from more than one doctor re: pantoprazole?
**How do you know the ulcer is a result of acid ... is it not possible it is because of bacteria?
**What would an endoscopial ultrasound show? He had one in March before the cancer surgery.  He has had two endoscopies since Oct. 1. He is supposed to have an CATscan - is it not possible this would show ulcers or healing process?
**How do you determine normal readings for hemoglobin?  We've been told 10 is normal for Jim, yet before the May 12 surgery it was 13.5. After 2 pints of blood were given between Oct. 1-5, it remained stable at 8.8. The lowest reading was 6.8. Dr. Butler says 8.8 is still low, 10 is low.

On Oct. 8 visit with Butler, Jim's BP was 90/42, which is normal for him. Weight with clothes on was 133 pounds. No scale is the same.

The next appointment coming up is Oct. 23 when Jim sees a cardiologist for a second opinion at UIHC.


My writings:

Questions
So many
agreement
between
doctors
missing
Answers
not found
We listen
We read
Nothing consistent
What one says
is fact
another says
is not
Who are we
to believe?

Our minds
in a
quandry
confusion
and frustration
take hold
We are obsessed
with knowing
what is
true and correct

I remember
The Lord
said
He would be with us
He would bring us through it
He would guide us
not just part of the way
but every step
That means
even through
the complications
and in retrospect,
not just through Jim's cancer
and the various side effects
but even my own
health issues

No more
We have too much
Take it away
Take it away Lord
Yet God says
in His word
He will not give us more than we can handle
What does He know
What does He see

He is wirh us
He guides us
If we are close
closer to Him
We will hear
in the stillness
His Holy Spirit

The answers
we seek
we find
in the solace
of our Lord Jesus

He hears our prayers
He knows our concerns
He answers
but are we listening
did we hear His response
or are we unsure

Doctors do not agree
have not agreed
say this and that
and another

Jim has been off
the coumadin
12 days
There is no dizziness

Is this God's answer?

Coming Home - Day 146

One of us had a good night's sleep - and that would be me. Slept 6 1/2 hours through.

Of course that means Jim didn't have a good night's sleep, unless you count the time between 11 p.m. and 2 a.m. His roommate's IV started beeping at 2, and it took 20 minutes for anyone to come in and stop it. Then at 4, his nurse came in to get Jim's BP, which was 80/40. Decided that was too low, so they tried the other arm. Then they hooked him up to an IV, probably with salt in it to boost the numbers. IV was in for an hour, then it beeped. Then labs done. By that time it was 6 a.m.

But there was good news with the morning ....

**Hemoglobin remains normal at 8.8.

**He could have a full regular diet, starting with breakfast.

**He could cancel Oct. 23 2nd opinion appointment with cardiologist -- he would not resume taking Warfarin / Coumadin - and report would be (hopefully) sent to local cardiologist Dr. Li

**He  could come home early afternoon.

A few things on this list didn't quite happen as well as hoped.

One, we really need to keep the Oct. 23 appointment with UI cardiology, and
Two, early afternoon became early evening - we left UIHC at 4:45 p.m.

Differing opinions between doctors

We have heard a differing of opinions again between doctors. Can't seem to get everybody on the same page. So who do we listen to?

**One doctor said Jim should be off Coumadin, he should cancel the second opinion appointment with UI Cardiology.

**Zachary Smith, the gastro-intestinal doctor who has been treating him these past few days, said he is to be off aspirin and Coumadin until his appointment with his primary care physician (Dr. Todd Butler, Oct. 8), who is to make the determining decision.

Dr. Smith believed Jim should be on a blood thinner because of stroke in 2012 and because of being in Afib. He is under the mistaken belief that Jim has had multiple strokes, when he has had only one mini stroke.

He also thought Jim should be on omeprazole or pantoprazole because of acid reflux.

**Dr. Parekh, the surgeon, weighed in with his opinion.
I had called Joan, the thoracic coordinator, soon after visiting with Dr. Smith and asked her a couple of questions to speak to Dr. Parekh about:

1. What caused the ulcer? How did it form?
2. Why would omeprazole be prescribed when the cancer surgery did away with the need for it?

His answers --
The ulcer formed where it did - at the juncture of  the reattached esophagus and stomach (esophagectomy) - because the tissue is still new (4+ months), fresh and healing. The bleeding was brought on by the Coumadin. Symptoms from the loss of blood (which could have been revealing itself for some time since Jim has complained of dizziness for months) reared its head big time on Wednesday, Sept. 30, when shortness of breath, extreme dizziness, extreme tiredness and weaknesss and black stools were evident.

Dr. Parekh  reiterated what he indicated at the one-month clinic visit on July 1 - with the esophagectomy, there should be no heartburn or acid reflux problems. Taking omeprazole or pantoprazole will not change anything.

We are inclined to go along with his thinking. Why be prescribed medicine for a problem that was corrected in May? Jim did have acid reflux and Barrett's Esophagus, but he doesn't anymore.
He was put on Coumadin because he acquired Afib as a result of the May 12 surgery. By June 11, when he had the second surgery, Afib was no longer a problem, yet ....  Coumadin remains a problem.

The GI doctors want another endoscopy performed to see how the ulcer is healing.
When Jim has his 3-month check-up with Dr. Parekh, he also will need a CATscan.

Stable - Day 145

Jim called at 7:15 to wake me from an unrestful sleep. His BP was normal. Blood was drawn for the hemoglobin, but results weren't known until 8:50 a.m., when he called again. It is 8.5 - still good. It would appear the bleeding has been stopped. The doctors were in. He may be able to eat regular food - he is eager to have breakfast. Said apple juice just doesn't do much for his appetite... lol.

It's shortly after noon now - still on liquid diet. Didn't have anything for breakfast because nothing appealed to him. Did take a shower, and had some shortness of breath, which could be attributed to the fact he didn't haven't anything in his tummy. He'll order chicken broth for lunch. 

Up and down - Day 144

Jim called at 7:30 a.m. His phone kept cutting out, so we didn't have a very clear connection. He called 3 times to finish one call.

He said another blood draw was taken a couple hours after the transfusion was complete - that must have been around midnight. At that time it was 9.2. But when it was checked again a few hours later, it was back down to 7.  Based on those readings, there is internal bleeding somewhere - we need to figure out where and stop it.

He is waiting for doctors to come in.

My thoughts:

Do not do
the natural thing
Do not
let your feelings
define you

Trust in the Lord
He who will lift you up
up above
the difficulties
you fight to conquer

Be thankful
for what you have
for where you are

Follow His lead
Do not run ahead
He gives us
what we can handle - not more,
although we tend to disagree,
- and not less
He knows what we can do
with His guidance

It is His guidance
we need to rely on,
not our own
We will falter
every time
if we look
to ourselves
for the answer

"His blood will purify our consciences from useless rituals, so that we serve the living God." ~ Hebrews 9:14b

Is it perhaps uselessness
on our part
when we do
what we think we must

Perhaps God is trying to show us
something different
and we just don't see it

He gives us rest
He instructs us to rest

We think we have no time
We have much to accomplish

So He brings about
a situation

God wants us to recuperate
to rest
to look to Him
and not everywhere else

He gives us opportunities
to serve,
but not to go overboard

Look to Him
Seek Him
with your questions
and wait for His answers

Don't fall down
and fail to look up!
(c) Cathy Orrick Luders


It's 10 a.m. and Jim called. Hemoglobin just checked again and is now 8.8. A good sign. He is to be moved to a regular room and have something to eat. Hemoglobin will continue to be checked throughout the day. If it is stable, we are moving in the right direction.

1:05 p.m. - Jim has been moved to a regular room - he is on the 6th floor - Room 6058 - Bed 1. Phone number is (319) 353-9711. If you visit, take Elevator D.

Jim called at 4:15 p.m. He was having jello and lemon ice, which made him cold, so he had more blankets piled on. He's planning on having chicken broth for supper. He said the doctors want to see how he tolerates food - liquid, soft and regular diet, and of course, he has to have a regular bowel movement. There have been no further checks of hemoglobin throughout the day because there are no signs indicating it necessary. He has had no shortness of breath and for the first time since forever, was able to stand without dizziness.  He said they may do a hemoglobin re-check yet today or tomorrow and they may do another scope.  It appears the bleeding was a result of the ulcer and nowhere else. The doctors are looking at a likely Monday release date. Hallalujah!

I made it down to see him by 7:40 p.m. It was a busy day workwise and after work, had lots of calls on the landline and the cell phone from folks who wanted to know how things were going. His BP was checked shortly after 8 and it was 106/57. He continues to be able to get up without dizziness. The hemoglobin will be rechecked in the morning. He is looking forward to going home on Monday. Pray that is God's plan as well as ours.

Waiting Game - Day 143

Jim didn't sleep well. He couldn't receive anything to help him sleep, had a headache (was given a Tylenol suppository for that) and numerous folk coming in and out throughout the early morning hours.  He called me at 7. Of course I didn't sleep well either. Took 2 hours to update yesterday's blog post and then when I went to bed, woke intermittently. Even in sleep, we do better together.

His hemoglobin continues to go up. His blood pressure was down some - 88/40. Doctors came and went and discussed the endoscopy, but no exact time was given for the procedure to move forward.

At one point I called the unit and asked if the procedure was underway, but the unit clerk I talked with, wasn't very helpful. He couldn't answer my question, couldn't find a nurse and couldn't patch me through to Jim. Geeze!

At 11:15 a.m., Jim called. Procedure remains yet to happen.

At 2:05 p.m., Jim called again. If it wasn't for him calling me, I do believe I would know nothing. He had the procedure - around noon or therafter.  He was groggy. I called back to the unit desk and talked to a nurse (not his though), who said another endoscopy followed right after Jim's. She assured me the doctor would call me when they were done with the second patient.

The ICU Fellow (I have no clue as to what his name is, other than I can't pronounce it), who did the procedure, called at 2:30 p.m. He said the ulcer is not currently active, but it may rebleed. To help prevent rebleeding, they put 2 clips in. Jim will stay in the MICU today and possibly tomorrow - he will be monitored for signs of possible rebleeding - the symtoms he had earlier - low hemoglobin, black stool. Also will monitor his blood pressure. If he remains stable, he may be able to return home early part of next week. If his hemoglobin drops again, another endoscopy will be done and go from there.

We request prayers for the hemoglobin to continue to increase and no black stool or any other telltale sign of rebleeding going on. We pray there will be no more complications, that Jim be on the mend toward complete healing, strengthened in body and soul.

At 3:30 p.m., nurse practitioner Dana Fowler called and gave me more complete information re: the procedure. She said the doctor clamped the blood vessel with 2 clips to prevent the ulcer from rebleeding. Jim will be watched for 48 hours, will remain in MICU today, and probably will be moved out on Saturday. His hemoglobin at last check was 8.2 and normal for Jim is 10. She said he was doing well. The hemoglobin will be checked again at 4 p.m.

Learned at 5:15 p.m. Jim's hemoglobin had dropped to 6. He will be given another unit of blood and have hemoglobin redrawn. They are not sure the 6.0 figure is correct. If the second draw still shows low, it is possible he will go to interventional radiology to determine where else the bleed may be. When talking to his sister the nurse, she thought perhaps the scope didn't show enough detail.

I arrived at Jim's bedside at 6:45 p.m. He had just started receiving another pint (unit) of blood - it takes 3 hours, so around 10 (which is what it is now that I'm back home), the transfusion should be completed. Two different labs were actually taken of his hemoglobin around 6 p.m. - one was 6.8 and the other, 7.1. Lower than the 8.2 taken earlier, but certainly not as low as the 6.0 taken at 4 p.m. Around 11 p.m., his hemoglobin will be checked again. Jim called at 10:30 p.m. to tell me the hemoglobin was checked a little while ago in a different vein and numbers remain low - at 6.8. It should have been up, given he had just received new blood. Doctor was in, suggesting Jim may need more units of blood. Hemoglobin will be checked again at 4 a.m. Saturday, if not sooner. If still low or lower, he will be heading to interventional radiology to see where another bleed may be.

It would be good if there is no new bleed and that hemoglobin numbers go up and stay up. He may be able to start a liquid diet on Saturday. His blood pressure has remained stable, in the 90s.

I lucked out with free parking in the ramp tonight. The ATM was down and since I didn't have $3 in cash to pay, I got free parking. How nice.

On the Hilltop / In the Valley - Day 142

After our weekend in Northeast Missouri, Jim returned to Wilton Baptist Sept. 20. He is going through the book of I Peter. His message was "Be All That You Can be" from I Peter 1: 10-16.

On Tuesday, Sept. 22, Jim visited his lone hospice client in Central City, and the following night, took grandson Austin to Awana / Cubbies while we went to Bible Study / prayer.

Friday, Sept. 25, dizziness and lightheadedness were still a constant, although he did mow the back and front yard, with rest and lunch inbetween.

Sunday, Sept. 27, Jim's message to the fine folk of Wilton Baptist was "The Precious Blood of Christ" from 1 Peter 1: 17-25. A business meeting was held following the service and among items discussed / considered was asking Jim to be interim.

Monday and Tuesday, Sept. 28-29, were days off for me and busy for both of us. On the 28th, a hot, sunny day, we drove to Central City so Jim could visit with his hospice client and I could take his wife to a doctor's appointment in Marion. Later in the day we picked up the Cooks - Christina, Austin and James - Austin played for awhile at the playground at Noelridge Park and then all of us went to the Farmers Market. We came away with a huge head of cabbage, zucchini, white sweet corn, plus Christina bought six pumpkins. On the 29th, it was rainy and much cooler. Jim complained of his legs feeling weak, but thought perhaps it was just the weather. We drove up to Waterloo to visit Paulette Titus and get some tomatoes, red and green delicious apples, a hubbard squash and a few peppers - mostly for us, but also to share with the Cooks. We also had a good visit with Jim's aunt Effie. We stopped at Family Christian and Jim purchased a NKJV that he thought he would preach from at WBC.  Then he drove home. He was only normal tired. And we saw the movie "War Room" too.

On Wednesday, Sept. 30, everything changed. Jim complained of shortness of breath. Just getting up from a sitting position, he was worn out. His dizziness was more extreme, as was his weakness and tiredness. He commented he had black stools. (He said they started on Monday; he was telling me about them today.) He was cold, so we turned the furnace on in the afternoon. I didn't go into the office, deciding it was better to work from home. We thought it was a 24-hour bug. He slept throughout the afternoon. We went to Awana that night, taking Austin. Many commented Jim looked pale. Pastor Dan annointed us with oil and prayed for both of us. When we got home, we took his blood pressure, which was normal. His pulse was high, just below 100. We thought perhaps he was in AFIB.

Today, Thursday, Oct. 1 - we got up at 6 a.m., decided we would go to the ER at St. Luke's Hospital.
We got there around 7:15 a.m. Did labs, an EKG - he was not in AFIB. After the doctor heard all the symtoms - the black stool was apparently a telltale sign - it appeared he had a bleed and it was thought to probably be an ulcer. His hemoglobin (red cell count) was low - 7.5 and that had dropped 3 points just in a short time. The need for a blood transfusion was a definite posibility. He had lost weight - with clothes, 128.5 pounds. The doctor said he would discontinue taking warfarin/coumadin as that puts him at high risk for bleeding.

I left to go home shortly after 9 a.m., since I had to work. When I next talked to Jim, it was almost 11 a.m. He was on fifth floor in the Critical Care Unit and was getting plasma. I learned from Jim's sister, Dianne, the RN, that plasma reverses the INR, which has to do with coumadin. (Later, after he was admitted to UIHC, I was told his INR had been 3.9.)

After receiving the plasma, Jim received a pint of B- blood (we have the same blood type) and then the endoscopy was done right in his room at St. Luke's. The nurse called at 12:30 p.m. and I talked to the surgeon. He said there was a big ulcer at the juncture of the stomach and esophagus where he had had the cancer surgery in May. It was currently not bleeding. He said the ulcer was not a result of the May surgery, but a complication, and he prefers to refer Jim to UIHC and Dr. Parekh, the doctor who performed the original surgery.

At 2:50 p.m., Jim was transferred to UIHC via ambulance. He arrived around 4 p.m.and by 4:25 p.m. was situated on the Medical ICU unit, 5th Floor East, Bed 5. The MICU does not have room numbers, but bed numbers. This location is only temporary. But for now, if you want to talk to him, call (319) 356-3441 and ask for him or Bed 5. It is a private room with a view (but not of Kinnick Stadium)!

I arrived shortly after 6 p.m. Jim will have another endoscopy in the morning to see what the ulcer is doing, to determine further steps. It is possible nothing will be done and they'll let the ulcer heal on its own. Jim's hemoglobin is up - from 7.5 to 7.7, a good sign, although still low. I learned his weight (with just a gown on) is even lower - 125 pounds! It took him so long to add weight, and how he's lost 8 more pounds. He is to have his hemoglobin checked again at midnight.

Tomorrow I believe Jim also will talk to a cardiologist about staying off of the warfarin. He was to have a second opinion visit Oct. 23.

It is also possible Jim may be released on Saturday. But I'm not going to hold my breath there. We've heard that line before.

I will be working again tomorrow from home so it will be evening before I will get up or down to see him. I'll update blog, Facebook or send an email as I'm able.

I've made countless calls today, and had many return them. Pastor Dan came by this morning and called late this afternoon. We are being prayed for all over the country, including in Tanzania. We appreciate the sentiments that God heal Jim without surgery. We appreciate every prayer lifted up on his and our behalf. I read to Jim an email received from Lorraine Kappmeyer - the line we aim to try and remember is "Every setback is a setup for a comeback!" God has this covered. We should never forget.