Gwen's Husband, Neil & the doctors

[patsyfay]

Gwen,
I'm so sorry about what you're going through.  Having a daughter with medical problems living in CA, I'm very familiar with the process.  I pray that all those doctors will get their act together, remember the bottom line reason why they chose medicine as a profession (assuming that it was to help people and not to become a millionaire), and agree to help the patient in every way they can. We pray that Neil will be feeling good in no time.
Pat

[Gwennaford]

Oh, you're good, Pat.  Very insightful!  Thank you for good wishes

[Tori]

My prayers are with you both, Gwen, as well as praying for direction for the doctors.

[Saved4Life]

You and Neil are in my thoughts and prayers.

Love,
Doreen

[Gwennaford]

God Answers The Prayer Requests on this Thread

It turns out the Oncologist and Nephrologist ARE copying their notes and reports to each other.  And they welcome involvement of the primary care doctor and our LMHC (therapist).  We just have to made sure we have the appropriate releases on file.  It's a long story how it came about, but ALMIGHTY GOD definitely moved in this situation, doctors HEARD us and admitted Neil to the hospital to treat him for the horrible side effects of the oral chemotherapy drug he has been taking.  Probably too strong of a dose, considering his limited kidney function, so that's being adjusted.

The good news is, the two main tumor markers the doctors are following have improved by about 300%.    PRAISE HIS HOLY NAME !

I suspect the nurses were filtering information they transmitted to the doctors, because to be fair, they DO hear it over and over.  Neil's symptoms are common to most of the people who are on the same drug protocol.  But they weren't hearing me about the severity.  I had not been going with Neil to the oncologist's office, trusting him to relate accurate info to them.  Apparently he was glossing over the worst of it, trying to make himself look better than he really is.  Of course, they tend to believe him more than me, because he IS the patient.  Anyway, it took a few days, but I finally convinced them he needed to be seen again by telling them Neil had been throwing up for a week, had taken NO solid foods and had kept down NO fluids for three days.  In addition, he was too sick to dialyze for at least a week.  (I only exaggerated a little  )

They FINALLY brought him into the clinic & gave him IV fluids and antiemitics two days in a row.  I went with him the second day to make sure they heard the real story about how bad he gets at home.  Even then I had to demand that the doctor make time to see him on Friday, because I didn't want him to have some sort of traumatic event over the weekend that I'm not equipped to handle.

Praise God -- They worked him into the schedule and the head oncologist took time away from other patients to sit down in the room with Neil, Michelle and me for about 45 minutes.  He and his nurse-practitioner answered every one of my two pages of questions.  During that time they got an accurate picture of how sick Neil really is, because he wasn't able to maintain his happy-healthy-guy facade for that long of a stretch, and he just fell apart right in front of them -- similar to the way he acts at home most of the time.  Of course I don't want him to suffer, but I was SO HAPPY they got a chance to see the real deal and were finally paying attention.

Neil and I are currently enjoying a few days apart, destressing and recuperating from the last month. 

Please keep us in your prayers.  Love, Gwen

[niki]

gwen...glad the doctors are doing their job and that now they more information that can only help in their care of neil....PRAISE GOD..............niki

[patsyfay]

That's wonderful news, Gwen.  Seeing things first hand is so much more important than hearing it second or third hand.  Things should improve dramatically now.  Yes, Praise God!!

[Saved4Life]

Gwen,

Glad your voice was finally heard...doctors should take time to listen more...to the family and not just the patient because - just like Neil did - they want to be better, so they tend to put a more positive spin on things.

Vickie told me that she and Judi Zacher (do you remember her?) went to see Neil on Saturday at the hospital.  That was so sweet of them.  Vickie is such a peach!  I didn't know if you were there at the time or not, but wanted you to know that in case Neil forgot to tell you.

I am keeping you both in my prayers!

Love,
Doreen

[Gwennaford]

I had never actually met Judi Zacher.  I think she was receptionist in the City Hall annex after Polatty left, right?  Neil was in the field doing plumbing, gas & mechanical inspections so I didn't have any reason to go over there much after I started in the Clerk Dept.  I remember talking to her, though.  I first saw you over there once, sitting at a table in the break room with this really hot young guy I thought was your boyfriend.  I later learned it was your son, Chris!  I sat there I watched you talking with him and a couple other people.  I would have said hi if you had turned around, but you terrified me!  LOL -- It surprised me to find out you are actually very nice!

But back on topic -- That sweet peach showed up here unannounced on Saturday, and rang and knocked and sent the dog into unending hysterics until I FINALLY got out of bed, transferred into my wheelchair and, in my nightgown, answered the door.  I was trying my best to be nice, but I was like, "What are you thinking, girl, showing up here without calling ahead - don't you have my number?"  And she was like, "Yes, I have it, but we wanted to surprise Neil."  So, always the gracious hostess, I snapped, "Neil's in the hospital and I don't do surprises, I think it's really rude!"  I felt horrible because she truly is one of the kindest, gentlest (sp?) people alive.  To be fair to them, it WAS 3:30 in the afternoon.  So I apologized & tried to act nice, and explained that I hadn't slept at all the night before after getting Neil admitted to the hospital, and gave her the room #, etc.  But it was awkward for all of us.  Not one of my shining moments.  I should email her an apology.  Thanks for the reminder, D!

About the doctors finally hearing us -- all bets are off when you go into the hospital.  That great oncologist who spent so much time listening to us doesn't treat patients in the hospital he sent us to ! ! !  So he sent in an associate who has never seen Neil ! ! !    EVERYONE involved in his hospital care acts like they just landed on this planet anew every single day.  They wander in like a calf looking at a new gate* and it starts all over again.  Just like "Groundhog Day."


*of all Pastor Ken's expressions, this is my fave.

[robnveronica]

Hey Gwen...not that they shouldn't have a clue who he is or why he's there, but .... on their behalf...the docs not only are treating patients in their private practices, but are usually traveling to at least 3-5 hospitals and seeing about 10-20 patients at each of those. Around here you're lucky if you get to actually ask them a question (they only are in long enough to ask "how are you today", barely wait for a response and then out the door to the next one!) These docs get most of their information from our computerized charting. Labs, x-ray, other doc's consults, and if by chance a nurse or therapist is around and recalls that they needed to get a question answered by that particular doc maybe they get info from us as well.
I know you weren't asking or looking for reasons that they "Look like a calf at a new gate" but thought I'd share some inside info. from someone who works in a hospital setting.

[Gwennaford]

You're right, Veronica.  It's not fair to lump them all together just because a few are ambivalent about going the extra mile.  Most of the hospital staff, especially the nurses are super fantastic, filled with patience and grace.  I know I wouldn't be able to do half as well.  But wouldn't you think that a patient dying from the side effects of chemotherapy, who was admitted on Friday, would have received a oncology consult before TUESDAY   His nephrologist is there every single day, sometimes twice a day.  I asked him if he ever goes home, and he just smiled & shook his head, "No."  I understand he's a rare angel who seems to love Neil.  Maybe not so rare, because there are many like him, but none of them can treat the adverse side effects of this particular type of chemo.  Did I mention his oncologist was SHOCKED that Neil was so bad.  His nurses had been filtering out everything I told them and brushed me off like I was just being a hysterical, overreacting wife with nothing better to do than to second-guess the way they do their work. 

I KNOW it's normal (if you can call your body starving itself to death normal) to have nausea and vomiting.  I KNOW they don't like to force patients to eat.  I KNOW you can go without food much longer than you can go without fluids.  But this is a man who has not consumed a TOTAL of 1,000 calories in a 2-week span.  He was given IV fluids & antiemetics in the oncologists office, but he didn't get his first dose of limodal (sp? - antidiarrhea med) until Sunday night.  He's gone through 25 pairs of underwear since Friday night. 

I know that at a certain point your body starts consuming your internal organs.  Your potassium gets so out of whack that your heart can no longer beat and it stops.  He hadn't kept down a single drop of fluid in 4 days.  He had diarrhea six times a day for a week.  He had open, running sores on his hands and feet, and I couldn't get anyone to listen to me.  EVERYONE just kept saying, well, that's normal.  I've seen it a thousand times.  I'm sorry, I think that's wrong.

I think his regular IV chemo nurse felt bad about what was happening to Neil because today after I begged her to get a doctor in to see him, she ran around and, luckily, found his regular doctor and the on-call doctor talking to each other.  #1 brought #2 up to speed, so hopefully, #2 will see Neil tomorrow during rounds.  I plan to be there when she comes and I PROMISE to be on my very best behavior.  I just want to make sure Neil doesn't try to white-wash his symptoms again so she gets accurate info about what he's been going through. 

Our hospitals don't have computerized charting yet, but many of the doctors are getting it in their offices.  It's going to be great.  I don't know how anyone can understand all of those hieroglyphics in the hand-written charts.  It became obvious to me today that not everyone CAN understand them because the right hand never seemed to know what the left hand was doing.  Even with computerization, the info is only as good as the attention span of the person entering the data.  I read some of his chart yesterday because the nurses leave them lying open out in the hallways so anyone passing by can see them.  The 4-hospital system has his records in their database.  The person who input his discharge info from his last hospitalization listed all his discontinued meds and they came out as DRUG ALLERGIES on the new chart.

I'm sorry.  I know I'm ranting.  My head is swimming.  I'm torn between 1) Beginning a crusade to right all wrongs and avenge the sick and weak and correct all injustices; or 2) Shutting up & going home to take care of my husband the best I can.  I must remember to continue thanking GOD that HE is still on His throne.  He is still in control and not me.  He knows the end from the beginning.  HE will fight for me...I need only to be still.

On that note, I'm going to go be still in my bed.  Love to all of you who know & care about us.  To the newbies who don't know us yet... I really am MUCH crazier than it seems from these posts. 

[glow=red,2,300]IN GOD WE TRUST[/glow]

Love, Gwen

[patsyfay]

Gwen,
I so admire your strength.  Going through all of this with the patience and grace you show is incredible. I pray that Neil will improve 100% and that you and he can get back to some semblance of normal very soon.  Praying for you.
Pat

[Forever Young]

I just want to say that we all need to make sure our loved ones information is correct.  When my Mom went to this new doctor, I KNEW I had to go with her.  I was her first visit and they were inputting all her information into the computer.  My eyes kept being drawn to the screen for some reason.  Finally I saw that her age was listed as 41....great!  Except my Mom will be 88 next month.....SO......what is going on here.  The doctor kept asking her questions and he would look at us strangely when she answered some of them.  It took me a bit to figure out why.

Well, the person whose name was on the computer screen was ALSO a new patient that day...and also FEMALE....and also had the same initials...SH.  However, they were being seen by him for two different symptoms!  Mom had an abnormal blood protein reading...but the doctor did a breast exam on Mom.  Strange, huh!  Well, I think when I told him the THIRD (3) time that Mom's information was on the screen with someone elses name, I think he got the picture finally!  I assume the other SH was there because they found an abnormality in a mammogram!  See what a mix-up that could have been.  WE NEED TO ALWAYS BE ON OUR TOES...and KEEP OUR EYES OPEN!!!

Mom is allergic to alot of meds.  I can see where this could possibly have been TWO law suits for this doctor and his staff had it not been caught.  He knows that I am watching them!  Sorry, but he is so right....YES, I am watching them....she is my MOM!

Just had to put my two cents worth in this morning.  Praying for you and yours.

                       


Jeanne

[Saved4Life]

Hey, Gwen,

Vickie mentioned that you were "sort of upset" that they just dropped by...LOL...I, like you, do not like folks to just drop in without calling first...we're alike in that regard!!

I am so surprised to hear you say..."didn't know you were nice"  about me!!  Gosh, do I give that impression to others, I have to wonder??!!  I sure hope not...but it goes to show you, you can't always judge a book by it's cover!!

I am so sorry Neil is in such a dark place right now...and how hard it is on you and yours.  I will keep you all lifted up in prayer.

On a happier note...this is my 3rd official LDL day...and I am having to squash some bad habits...eating just because I want to, not because I am hungry.  But, so far so good!

Have a BLESSED Day!

Love,
D

[Gwennaford]

D -- Well, we probably didn't have any business being in bed in the middle of the afternoon.  But I just had to catch up, you know??

Nah - not to worry.  That was 20 years ago.  We were ALL much different people then. 

Thanks SO MUCH for added prayers.  They are needed.

YAY on 3rd LDL day.  I hope you love it!

Love, Gwen

[LovinLDL]

Gwen,

I just caught up on this post and will be praying.

The Lord has used all your posts...encouragement, frankness, new recipes, etc. to encourage me today.  He has taken away some of my fears and brought peace...sort of saying "If Gwen can go through that with such grace...you can face the couple of weeks I have for you.". In the next few weeks my mom is getting married (after divorcing my dad after 45 years less than a year ago) and my Grandmother (who lived with our family for two years) will likely go home to heaven.  Thank you!...for sharing your testimony and fighting for your dh.  It helped me today...I'm getting out of bed, wiping away the tears and going to go care for my little ones (and not so little ones) in His strength through your encouragement.

Trusting Jesus,
Julie

[niki]

He has taken away some of my fears and brought peace...sort of saying "If Gwen can go through that with such grace...you can face the couple of weeks I have for you.".

  i feel the same way in my life, julie......i did the same thing you did......everything gwen is going through makes my problems look small....the Lord WILL see you through, julie....just hold on to the Lord AND to those little ones(they're a LOT of comfort in a storm)...God bless you and your family....love,niki

[patsyfay]

Julie,
He takes you by the hand and gently leads you...never leaving you alone even for the space of a breath.  Just lean into Him and He's there.  Like Jacob said, He's the God "who is there."  There is no place you will go where He has not been there waiting. He is good and kind and never gives us anything that He won't help us through.  May He bless you (and Gwen) through this shadowy valley.
Pat

[Gwennaford]

AWWW -- thanks for all the encouragement.  You are all so precious to me.  snif    Thank you.

I sometimes get mad at myself for moping, when other people have problems so much worse than MINE!  ha ha

People like Doreen encourage me.  She has survived horrendous health problems through God's strength and grace. 

WE are a great community.  I still thank God every single day that Roger chose to be obedient to HIS assignment and share this wonderful program with hurting people.

[glow=red,2,300]IN GOD WE TRUST[/glow]