What is Happening Now

I have edited this from its earlier form to give my daughter more privacy. Dear Friends, For the last four days I have been encouraged by looking at this blog and seeing that many people have stopped to read it. Seeing the someone has looked here for help uplifts me.

It seems like readership increased as I sat in the ER with my daughter and my husband. My husband and I took her to the best place we knew of: Loma Linda University Medical Center. She was assessed in the emergency room. (You can schedule an appointment online to get into the ER there. I recommend it. Strongly.) She was referred to their facility nearby that is run by Loma Linda, and admitted. A young relative of mine had been there a few years ago, and says the staff will treat her well there.

Please pray for Kay and for us. Pray for wisdom, for healing. Pray the doctors will talk to us about what is going on. Kay is a very young adult, and I am waiting to see if the doctor has consent to talk to us. Pray for me when a 20-year-old staff member speaks to me like I'm not supposed to hear anything about my daughter. Her Dad and I brought her in, and are paying for her treatment with the insurance we earned by years of work. When we brought her in, the staff wanted to talk to us, because Kay wasn't much help.

For comfort, I turned to Philippians chapter 3. I used to read Philippians daily when I first was diagnosed with cancer. I remember when I prayed in 2007 that God could take my health, my daughter or my father to keep me in His perfect will. This is one way of losing my daughter.

"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith,..."

Philippians 3: 8-9 New American Standard

Welchol works on Diarrhea

Hi,


This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.

Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.

In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.

I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.

It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!

The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.

Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.

UPDATE 12/17/11

I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.

Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon

New Data

I got the results back from my blood tests done in February. My Gastrin is 38, which is normal. My Chromogranin A is 1.0!

Yipee! Thank you, Father!

A Trip to the Emergency Room

Hello,

My visit to the emergency room two days ago had nothing to do with carcinoid cancer. However, the carcinoid did influence my blood pressure.

I had an accident on Sunday when I fell and struck my head. The back of my head was cut on the corner of a stool, and my scalp was bleeding. I was surrounded by friends, so they did all the right things; calling 911, applying direct pressure, making sure I stayed conscious, etc. I had no intention of becoming unconscious and my mind was clear the whole time. My pastor told me the next day that I was running on adrenaline while I was lying there telling the EMTs my medications and how to spell them.

As usual, my blood pressure went up because of the trauma and the stress. I guess it got close to 195/100. When I was in the hospital, I could see it was 183/78 which is not really unusual for me in a situation like that. I told the ER nurse that the accident caused the carcinoid tumor to pour chemicals into my bloodstream that raised my blood pressure, but I don't think she understood. I was well taken care of and released quickly.

In the middle of the night when I was too uncomfortable to sleep, I began to think about how to tell medical experts about carcinoid crisis. They don't think of it happening in an accident--they don't seem to even know about it--but one of us can die because of it. About 4AM I was deciding to create a 5x8 laminated card for the doctor and the nurse that would give them some quick facts about carcinoid crisis and a website they can look at in time of need.

I did decide to get a Medic Alert bracelet so I don't have to recite all my afflictions and medications after a bonk on the head. I have also decided to ask people to read the medications back to me. I got asked the same question by three people who had not been conked on the head, and all the ER doctor really cared about was did I take the medication Plavix. The paramedic had written down all the drugs I had told him back at the house. Why didn't anybody read it back to me to help me remember?

Let's see if I can remember to do that next time.

Thank you for your prayers. I have 6 staples in my scalp and they should be removed about February 15.

God bless,
Sharon