Health

28 Jan. 2011
The appointment with Dr. Hennigan yesterday was disappointing, but not surprising.   During the last visit a urine sample was taken as Debbie had done a self-test that morning that showed up positive for an infection.  A couple days later we received a call from Dr. Hennigan’s office saying that she had a strep infection and they were calling in an antibiotic prescription. So, along with the entocort for Crohn’s Debbie began taking Keflex.  During this time there has been no change in the pain or fatique, although the night sweats stopped while she was on Keflex.  The past several nights, after completing the Keflex treatmen the sweats have returned.  So, in reviewing all of this Dr. Hennigan’s response is that we would have good reason to fire him as our doctor, as what has been recommended has not yet yielded results toward health and wholeness.  Having said that he went on to say that he is committed to getting to the bottom of this!  He still believes that this is Crohns and that for whatever reason her body is not responding to the Entocort.  He said that since the Entocort is apparently not doing anything that she should stop taking it.  His next step was to consult with Dr. Thomas, the gastroenterologist who did both the colonoscopy and the capsule endoscopy.  He immediately tried contacting him, without success, but then went on to have his office set up an appointment  for Debbie with him for Monday-the 31st.   It is not clear to us what the purpose of that may be, other than to have another doctor involved and considering possibilities.

During the appointment we raised the issue of going to a place like Mayo.  He said that would be his recommendation, if progress toward  a resolution can’t be achieved locally.  I take that to mean between him and Dr. Thomas.  I believe that he really doesn’t like to be defeated, but also knows that at a place like Mayo there is opportunity for specialists in various fields to sit together and discuss difficult cases together in search of answers.  He told us that his pride has taken some knocks over the years and again pointed out that although he scored in the 98th percentile in the Board exams in infectious disease  and is really good at that, he only scored in the 28th percentile in parasitology.  He asked if we had looked at the websites he recommended related to Crohns, which we had.  He stated that with the Internet and the information out there it is often the patient that teaches him or even comes up with the diagnosis.  We explained to him that we have been in contact from the beginning with a personal friend (Phil Fischer) at Mayo and that we have sent all the pertinent information from tests, etc. to him.  He asked if Phil had received the photos from the capsule endoscopy.  When we said no, he immediately made those available to us to send on to Phil.  As we were leaving he said that he would be glad to interact directly with Phil.    So,  we will go to see Dr. Thomas on Monday and see what he says and also see what recommendations Phil may have at this point.

The other thing that has happened this week relates to a recommendation from Scott Paulsen that we look into the possibility of Upper Cervical Care.  The concept is that our bodies are created to heal themselves.  This is nothing new to us. We have all seen it when we cut ourselves, or are injured in some other way.  The body reproduces cells and in fact every cell in the body is replaced within a 7 year period.  All we have to do is look at our skin flaking off and being replaced to know that cells are being replaced.   The principle of Upper Cervical Care is that if the C1 and  C2 vertebrae are out of alignment the result is that pressure is exerted on the nerve stem which inhibits the normal impulses between the brain and body (much like the effect of crimping a water hose inhibits the flow of water).  Our bodies naturally heal themselves when they are healthy and at “ease”, but if normal nerve impulse is suppressed wellness is affected and “dis-ease” sets in.  Debbie has had neck problems for years—since she was “launched” into the roof of the cab roof of our pickup back in the late 80’s, when I hit a gully in the road too fast on road to Rethy.  This resulted in severe pain at the time and headaches.  She got some relief back in the 90’s by seeing a chiropractor who gave her some exercises to follow.

Last week Debbie found a place on the Internet in Bentonville that does Upper Cervical Care.   She set up an appointment for Thursday.  The doctor, who is very clearly a believer,  met with her/us for over 2 hours explaining the concept and then starting with thermal imaging of her back and neck.  That revealed that her whole right side was out of balance and as he commented, “most likely due to some toxic activity in her body”.  He continued with a series of various tests, taking all kinds of body movement measurements and nerve responses, and then finally taking lots of xrays of her neck from various angles.  I was quite amazed when asked me if I saw anything unusual as he evaluating her legs and feet.  He was really checking the alignment and length of her legs.  Her right leg was about 3/8 of an inch shorter then the left one.  He explained this as a result of the tension in her right side with the muscles on that side being in stress and contracting–pulling her right side up.   As he suspected from the other tests and measurements, her neck is a mess!  He clearly pointed out two places in the xrays where she had trauma years ago—the one being between C1 and C2 and the other C4 and C5.  The xrays showed her neck alignment from the side as being straight rather than naturally curved, resulting in her head being pushed forward, C1, C2 and C4, C5 pushed up and to the right, and there being very little disc showing between the C4 and C5 vertebrae in particular.  Following the examination and testing, he sent us home with an appointment for yesterday afternoon. We arrived back at his office and began the consultation around 4:15, leaving around 6:30.   After carefully reviewing the xrays, doing another thermal scan of her neck (same as previous day scan), checking leg alignment (right leg  still 3/8” shorter) and going over his findings with us, he did two “adjustments” (C1 and C2) and then put her resting in another room in a relaxed atmosphere (classical music/low lighting) in a special lounge chair with neck support for about 1/2 an hour.  He then did another thermal image scan of her neck which was significantly improved and examined the alignment and length of her legs.  I was very surprised when her legs were equal in length.  The two “adjustments” of C1 and C2 relieved enough tension in her right side to produce that result .   He sent us home with instructions for her not to turn her neck, not to do strenuous activity,  not to sleep on her stomach for 48 hours, and to drink plenty of water. He warned that she may get some “different” sensations in her arms or elsewhere, feel like she got run over by a truck,  etc.,  She did wake up this morning feeling like she had been run over by a truck. He called this morning to see how she was doing. She is to go back on Monday for follow-up.

It is interesting that back in August the GP had a neurologist check Debbie because she had been experiencing some strange sensations in her arms and hands.   He didn’t find anything wrong neurologically but suspected the sensations related a neck related problem.  I said to Debbie on the way home last evening, “sure wish the health professionals (doctors, physical therapists, chiropractors, psychologists, etc.,) would work together and learn from each other”.

We are indeed “fearfully and wonderfully made”!

Steve 8 Jan. 2011

On the 30th Debbie had a capsule endoscopy.  We were told that the gastroenteroloigist would probably not read the images until Monday, the 3rd, and that his office would communicate the results to us and to the infectious disease doctor.  Dr. Hennigan’s (Infectious Disease) office contacted Debbie on Monday and set up an appointment for today to go over the results. We never did receive the results from the Diagnostic Clinic, but on Wednesday Dr. Hennigan’s office confirmed that they had received them and that he would go over them with us today.

When we arrived at his office this morning his nurse came out into the waiting room and said that they had not yet received the results.  Debbie responded by saying that the receptionist had told her Wednesday  that they had received them.  A little more checking by the nurse and the Capsule Endoscopy Report was found. Dr. Hennigan read it to us and then suggested next steps.   Here is the pertinent information—for those of you who are medically inclined. (We asked for a copy of the report.)

Procedure info & findings:

  1. Complete small bowel capsule endoscopy with excellent visualization.
  2. Small bowel images viewed on speed of 5-10.
  3. In the distal small bowel, probably ileum, there are a few small 1-2mm superficial erosions which are non specific in appearance.  Since the IBD serology and markers of inflammation were negative, I doubt this represents mild Crohn’s disease but I can’t be definite.  I would rate the enteritis here as mild.
  4. The villious architecture of the entire small bowel appears normal.
  5. No tumors or other lesions.


Summary & Recommendations:
1. Mild enteritis in the distal ileum which is non-specific in appearance.  In the absence of supporting antibodies or markers of inflammation, a diagnosis of Crohn’s disease cannot be made.  Infections, granulomatous disease, NSAIDs or idiopathic are other possibilities for this appearance.
2. One may consider courses of empiric antibiotics such as cipro and flagyl.  A trial of entocort 9mg daily for 4-6 weeks could also be tried empirically for Crohn’s disease.
3. Follow-up with Dr. Hennigan.

Putting all the symptoms, tests results, etc., together, (including enlarged lymph glands, fever, fatigue, mouth sores, consistent  intense pain in the ileum area)  Dr. Hennigan stated that he is inclined to believe that it is extra-intestinal Crohn’s disease that is causing Debbie the problems and has prescribed a treatment with entocort 9mg daily.  He wants to see Debbie in 3 weeks.  Although not stated, we believe it to see if the treatment is bringing relief.  Seems like a trial more than a firm diagnosis.  At this point we really don’t know what the implications of this is to our lives right now.

So…., we continue to pray and trust for healing, knowing that “He (Jesus) took our illnesses and bore our diseases”, (Matthew 8:17).

14 December 2010

The “bucket full of blood” taken at Debbie’s last appointment did not reveal any reason for the pain, fevers, and fatigue that Debbie continues to experience.  The doctor apologized for not having pursued Debbie’s case more proactively over the past two weeks since her appointment.  We received a report  that we forwarded to him from Dr. Moses of the “appendectomy” surgery that he performed in Kampala in May 2009.  The doctor here has been in contact with Dr. Moses and still wants to get more information from the pathology of the nodes that were taken at that time.  He stated that this is a tough case and is determined “to get to the bottom of it”.   He had a copy of the CT Scan and invited us into his office to look at that with him, which was an interesting exercise.  He admittedly does not know how to read a CT Scan and is going to review it together with a radiologist friend of his.  We asked him specifically what the “appendix” that showed up in the scan report was all about?  I think he will try and follow that up with his radiology friend.  He believes that the problem is an inflammatory bowel disease of some sort.  He has a couple of ideas that he would like to try—one of them being a procedure insurance companies generally don’t accept.  He was going to speak with our insurance company about that to see if they would agree to it.  We were told to contact him Thursday if we had not yet heard from him, to see where things stand.  “So…don’t hesitate to bug me. I would rather be bugged than neglect my patients.”  So… where does this leave us?—Don’t know!!!!!   As a brother said just this morning in relation to healing–”we aggressively wait”!  We see God high and strong! We see what he has done!  We gaze at God! We say what God has done and is doing!  We tell God what is going on!  We listen! We trust God and God alone!  (see 2 Chronicles 20).

December 2010

1 December 2010

Debbie went to see the infectious disease doctor yesterday.  He introduced himself and  began by saying, “I am really good at infectious diseases, but not very good at parasitology.  So, let’s begin by hearing your story from the beginning. I will get to the bottom of this!” It was clear that he had reviewed Deb’s growing file and as he listened he determined that there were some additional pieces of information that he needed to have access to.   The file he received did not include the CT Scan and he wanted to know where the biopsies of the nodes that were taken during the “appendectomy” in Uganda were sent. He went as far as to have his office immediately try to contact the International Hospital in Kampala, as he wants to be able to contact the lab that the nodes were sent to, as there is significant information gleaned in doing a biopsy of even a “benign” node that  could point to the cause of the problem.  He definitely believes that what is going on today is related to what was going on prior to the “appendectomy” surgery 18 months ago in Kampala.
Debbie says the list of possible causes including TB, brucellosis, schisto.., pancreatic function, etc.,..  was very long and that the related lab tests required a “bucket full of blood”.   So where does that leave us?  WAITING!  She has another appointment on the 14th of December and in the meantime we wait—-to hear if any of the lab tests has shown a possible cause for the increasing pain, fever and fatigue.

“Uncle” Don and “Aunt” Alene Dix arrived here shortly after Debbie got back from the doctor’s office yesterday afternoon. They drove down from Wheaton “to deliver some mail and the CIDA project files” that they brought back from our house in Entebbe last week.  The “purple” file is in our hands!  Try, Try and Try again.  Et voila!…. Success!  Mom Nokes and Grandma got back from Thanksgiving in Texas just in time to host them, with us, at her house for the night.  We had a great visit that covered a lot of different topics related to both ministry and family.  They left this afternoon to spend the night in St. Louis with their daughter Debbie and her family.   And now, Debbie is resting!

Nov. 13, 2010

Debbie had the colonoscopy this afternoon.  She is pretty wiped out but has eaten and will be fine after a good sleep tonight.  The doctor came and spoke to both of us following the procedure and gave us a printed copy of the colonoscopy report.  Debbie doesn’t remember any of that! She doesn’t even remember getting dressed and my helping her walk out!  He found nothing abnormal and stated that her colon is in good condition.  He definitely ruled out Crohns disease and agreed with Dr. Moses (Ugandan surgeon) that her appendix had been removed at some point. He suggested that an exploratory surgery in the area of the pain may be in order to find out what is going on and commented that it would be tolerated well.  He thinks it is probably adhesions that are causing the pain.  It doesn’t seem to me like that by itself would account for all that is going on—the pain,  low grade fevers, and fatigue.  She had a low-grade fever going into the procedure this afternoon-99.3.

So,  we have confirmed that she does not have Crohns and that she does not have an appendix.  We still don’t know what is the cause of the pain, fevers and fatigue!  As I mentioned in the last update she has an appointment with an infectious disease doctor on the 29th.  It would sure be nice if we could get some answers as to what is going on before then!  Let’s pray together to that end.  Phil Fischer has received the reports from the previous scans, etc.   He is in Bukavu, DRCongo this week with a couple of colleagues and was hoping that he could find a computer to review those files on with them.

For you medical people, here are some of the comments in the report:   “Careful visualization of the colon was performed as the colonoscope was withdrawn…The procedure was not difficult. The quality of the preparation was excellent….Normal mucosa was noted in the terminal ileum, cecum, ascending colon, transverse colon, descending colon, sigmoid colon and rectum….No appendiceal orifice seen suggesting previous appy. No evidence of Crohns. Pain suggestive of adhesions.”

Nov. 4, 2010

Last week, following the visits and tests done by the urologist’s office which ruled out anything related to Debbie’s urological functions as being the source of the pain, fever and fatigue we were sent back to the GP (Dr. Youmans) here in Siloam Springs.   When we contacted his office we were told that he wanted to see the report from the urologist’s office before seeing Debbie.   The urologist’s office told us when we left there last Tuesday that they would send the report to Dr. Youmans.  We also requested that they send a copy of that report to Phil Fischer and Debbie was also able to get the scans from the hospital and hopefully the full report finally sent to Phil. We are finding that it takes a lot more prodding and persistence on our part than we ever expected to keep things moving, even at what seems a snails pace. Debbie has gone in person several times to Dr. Youman’s office to see what is happening with appointments and to try and get records sent.  There have also been numerous phone calls.  We have also requested the records and a report from the “appendectomy” done in Kampala in which no appendix was found. Thanks to Lyn and Chris for following that up!

Tuesday Dr. Youman’s office finally called saying that he was referring Debbie to a doctor in Fayetteville for a colonoscopy and to an infectious disease doctor in Fayetteville.  Yesterday the infectious disease doctor’s office called with an appointment for the 29th of Nov (that’s  3 1/2 weeks away!).   This morning we received a call setting up the colonoscopy for Friday, the 12th.   So….we wait…and try to do that patiently! (no pun intended!)

Oct. 27, 2010

Went with Debbie to see the urologist’s PA yesterday.  The results of the IVP test show ruled out a problem related to Deb’s kidneys.  The medication  (Cystx) that they had given her  to calm her bladder down had helped and her urine test yesterday was “clear”.  The PA is a really nice lady and genuinely felt bad that they didn’t have answers as to what is causing the pain, fevers, and fatigue.  She had actually gone back and taken a look at the CT scan and the rest of the file and told us that those show the pancreas is dilated and there are fatty deposits in the liver and cysts, but they wouldn’t normally be the cause for Deb’s symptoms. That’s the first we had heard that! She said there was matter left in the bowel even after the “cleaning out” and asked if Deb’s GP had considered a colonoscopy.  He has not mentioned it, but the ‘surgeon’ he referred us to and who ordered the upper GI and small intestine test had suggested that as a possibility, but wanted to start with the upper GI.  The PA said there was nothing more they could do and that we needed to go back to the GP.  She told us she would send the results of the test to him.  So, we continue the “hunt and peck” process to try and determine what is the cause.  We are in contact with Phil Fischer. He has requested electronic copies of the imaging, which we will try and get the urologist’s PA to send to him.  Debbie also contacted eDocAmerica which Phil Byler had suggested and is linked with our insurance.  The reply of the doctor there suggested checking out the gall bladder and asked if an ultrasound had been done.  So…….???
Was reminded this morning in 2 Corinthians 4 that “we walk by faith and not by sight”, and that “the things which are seen are transient, but the things which are unseen are eternal”.   May we see the eternal in all of this!  Sometimes that is hard to do.

Oct. 9, 2010

As we had not heard concerning an appointment with urologist, I made Debbie call Dr. Youman’s office a little after noon today.  She left a message for Crystal (his nurse) saying that we had heard nothing from Dr. Wilson’s office (urologist).  Debbie went to town this afternoon to register us for JBU homecoming and some other things.  While she was out Crystal called looking for her. I asked if I could take a message for her.  The message was that she had contacted Dr. Wilson’s office and after looking at the various test results saw no reason for seeing Debbie.  So, Crystal said that she had done a referral to another urologists office in Fayetteville and that they would be contacting us about an appointment.

Well, to say the least this is all very disappointing and discouraging.  Father gave me/us Romans 15:13  yesterday. “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”  We just aren’t sure what to do with the info received today.  Debbie has said she thinks the problem is  linked with her kidneys.  We will see if we hear from this second urologist on Monday and if not….????

Sept 22, 2010

Debbie went to see the doctor yesterday.  He is sending her to see an urologist—not sure when that will happen!  He contacted the urologist who wanted a CT scan done before he sees her.  The clinic was able to get her into the hospital for the CT yesterday. She drank a couple bottles of barium over a 2 hour period and then had the scan done.  The results of that will go to the doctor and then we will see what the next step is.