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.

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.