Bert's update

[Guest guest]

Hi all,

I wanted to let you know what has been up with me since I disappeared from

the group around September of 2004. I tend to be really verbose so I will

try to be concise but forgive me if I ramble. ;-)

As some of you who remember me know, my story starts in November of 1999

with an attack of gallstone pancreatitis. I received probably bad advice to

not have my gallbladder removed at that point because of statistical

probablity of not having another attack for decades. Of course, I had

another attack, a bad one, in Feb. of 2000. In all likelihood I passed a

large stone then which damaged my ducts. From Feb. 2000 to April 2003 I had

15 attacks of acute pancreatitis requiring hospitalization. In March of 2002

I was measure to have very high sphincter of oddi pressures and underwent a

stenting that relieved my problem temporarily. When the attacks resumed they

were much more frequent and much more damaging. To fix this, I underwent a

total pancreatectomy/splenectomy and auto islet cell transplant in May 2003.

My pancreas was in worse shape then expected, the surgery lasted 12.5 hours

and ultimately far fewer islet cells were able to be transplanted. Thus I am

insulin dependant. The intractable pain continued on up until October of

2004 at which time it started to modify and become less intense and less

pervasive in my life. The pain issue changed from contsant pain to

occassional flare ups of pain the feel like the beginning of an attack of

pancreatitis. The pain is bad during a flare up, worse than my " old " chronic

pain was but like I said it isn't constant so I can go weeks between pain

attacks. This has led me to get off of the duragesic patches. Now I just

have a small supply of oxycodone and dilaudid pills, oxy for a normal pain

flare up, and dilaudid for the real bad ones which luckily are less

frequent.

My blood sugar issues have grown worse. I believe some of my transplanted

cells have hibernated or died and it may even be possible that I have begun

to develop resistance to insulin so that I have a blend of type I and type

II diabetes. I take 50 units of lantus at bedtime, and 8 units of humalog

with each meal and snack plus a sliding scale if my sugars are 150 or

higher. Even with this much insulin I can on a moments notice go very

hyperglyecimic making my diabetes very hard to manage. I may end up on a

pump but even if I do if things continue as is I will have to readujst the

pump a lot almost making the pump a clumbsy choice. It is frustrating.

Because of poorly controlled diabetes, the pain flare ups, and relatively

frequent bouts of nauseau and vomiting I have not been able to return to

work. Because I was so hopeful things would improve, because I am so

reticent to accept assistance, because I have been made almost emotionally

paralyzed by all of this, and just some real bad advice and choices I have

made I have only 4 weeks ago applied for SSI and SSA disability. I have used

up my COBRA coverage, all my savings and my wife's savings, and she only

recently returned to work having quit to care for me. We are indigent now

and we had to make the tough decision to move to where my family lives in

No. Carolina leaving Cincinnati where my surgery was done and where I had

good doctors to care for me.

Now that I am broke I am seeing personally how poorly the welfare, social

services, social security, medical systems and assistance for the needy and

desperately ill really is. It is a big mess. And even though I am highly

educated I get very confused going through all the application processes and

so forth. I beleive they are designed to make people avoid using the

services by frustrating them terribly. And they are very slow in coming.

As a result of being so broke and non-insured I went through a period of a

little more than a month without Creon or any kind of pancreatitic enzymes.

I was starving to death as food just went straight through, nutrients not

absorbed. I lost 25 lbs in a month and I was alreayd rather thin. I am so

very grateful that my county's health department has an extraordinary

pharmacy department that proactively went out and secured assitance for me

so I could get my meds free. Solvay Pharms. the makers of Creon20 approved

me for a year supply free. I have regained the weight and bit more so I am

very thrilled about that.

Life post-pancreatectomy has been tough on me because my diabetes is so

weird and out of control, the pain has been a big issue (pain meds help a

lot but then I am mentally useless, so a double edged sword). I badly want

to return to work but am ensure if I have the stamina and could have a

diabetic crisis at any time. And if I managed to get a job (people do not

like to hire people who have a large gap between their last job and the

present time) if it isn't a good paying job it really isn't worth because of

the potential loss of so much medical assistance that I could never afford

to pay out of pocket. I do not even know if I will be approved and I

understand often times you get denied the first time just because that is

how the system work. And time is so critical that playing these games and

jumping through these hoops is just horrible. Because of this, because of

the burden and drain I feel I am on the system and on my family and friends,

I sometimes have to deal with suicidal thoughts though I am not depressed,

and am very happy to be alive. But it just gets tough as you all know.

If I can get medical insurance assistance, good doctors, and good proactive

care I believe I could return to work, and live a rather full life. But

since the medical systems in the US are so messed up it doesn't seem likely.

Without medicaid/medicare and some financial assistance I will not be able

to improve enough to get the care I need to get strong enough to get back

out in the work force and pay my own way. What a mess. And I do not even

want to go into my medical bills. They are amazing. I have many visits to

the ER due to diabetic complications, pain, and so forth. Again without the

necessary assistance I have nothing to do but to what for a flare up, get

sick, and go the ER. A terrible cycle.

Though this is all negative stuff to be sharing, I can say that even though

my TP was not picture perfect it did save my life, it did improve the pain

issue. But it brought on me terribly out of control diabetes. Diabetes is

not something to play with. That is just a risk of the surgery. A risk that

lessens everytime the surgery is performed as the doctors fine tune the

procedure. One day it may be a minor risk but today it is a very significant

risk.

I hope all of you are doing well, well for you, and enjoying time without

pain and illness. That is my wish for you all. It is good to be back to the

group. I will do my best to chime in when I can.

Peace and Blessings,

Bert

--

" What we do in life echoes in eternity. "

Maximus Decimus Meridius

" Every facet, every department of your mind is to be programmed by you and

unless you assume your rightful responsibility and begin to program your own

mind, the world will program it for you. "

attributed to Lilly

[Guest guest]

Dear Bert,

Very glad to have you back after such big while. I remember you've answerd my

question exceptionally and that was of very much help.

See you around dude, and wish you have better days ahead.

Rupesh Parajuli

Nepal Chapter

Pancreatitis Association International (PAI)

Post Box No: 13946, Kathmandu, Nepal

Tel: 977-1-4479627, Fax: 977-1-4476878/4460560

Mobile: 977-9851078750

rupesh_parajuli@...

www.pancassociation.org

---------------------------------

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[Guest guest]

Dear Bert,

You've been much missed by those of us " older " members who were here

when you were first recovering from your surgery. I cannot tell you

how sorry I am to see what has happened with your health situation

since we last heard from you, it's a devastating blow to hear that

your diabetes has become so brittle and that you are still having to

deal with pain issues, as well.

I, (we), have thought of you often and can now understand why you were

away from the group for so many months. I know you had many positive

plans about returning to work and getting your life back in order, and

can see where these ongoing health issues have interceded with your

plans. You should try not to blame yourself for making poor

decisions, as you said you did, or say that you were at fault for any

choices that were made in dealing with your medical problems. At the

time, I'm sure that each choice you made was well thought out and was

the best, and only, choice, that you could have been made at the time

regarding your emotional health and personal life. You only did what

you could do at the time, and it's no fault of yours that your body

developed the conditions which now make your life so difficult. You

need to stop pointing the finger at yourself, or anyone else, for that

matter, and accept that whatever choices were made, they were done in

good intent and with the belief that improvement would be the outcome.

Sometimes we make what other's see as the wrong choice, when it is, in

fact, the " right " choice for our own personal emotional stability.

It's very difficult for some people who have such a strong personal

drive to succeed to accept assistance when others " say " they should,

and making those choices at the wrong time can be such a damaging

emotional setback that it actually hinders any forward improvement.

I hope that now you're able to put that behind you and look forward

with a clear conscience, and that you are not in an environment where

you are constantly reminded of past choices, or surrounded by people

who have to keep telling you what you did wrong. You need to be with

people who are supportive and care about your future only, not what

has happened in the past.

I know you believe that with the right care and circumstances that you

could get back to work successfully, but I'm glad that you have

applied for SSDI in the meantime. Getting it now doesn't mean that

you've thrown in the towel, Bert, but having that additional income to

put into the budget would give you the financial stability to

concentrate on getting well enough to return to work in the future.

It's kinda hard to try to even find a job when you're ill and can't

depend upon your health stability from day to day. And the system

does offer vocational rehab programs that could possibly be beneficial

for you when you are trying to get back into the work force. You were

talking about the problems of having that gap on your work record when

trying to get new employment, but I think employers understand the

gaps when they're presented with a prospective employee who's sent to

them from vocational rehab. It shows that despite a medical setback,

that the person's determined to work again and is making the necessary

steps to do so.

Have you employed an attorney yet to help you with your SSDI

application? Most people say that for the first application process

an attorney is not really needed, and that most people don't engage an

attorney until they receive that first denial. If you don't have an

attorney, I would strongly recommend that you get one if you should

receive a denial this first time. While I personally think it would

be total ignorance and stupidity that you would be turned down on your

first application, having been through the whole process myself,

sadly, it wouldn't surprise me at all if you were. If so, please

consider hiring an attorney who specializes in national SSDI

disability cases only. I'd recommend that you hire someone who does

nothing else but Social Security Disablity cases, so that he/she has

the expertise and time to devote to your case and jump through all the

hoops that the system throws at you in their attempts to discourage

appeals. If you need any recommendations, I'd be happy to furnish you

with the name of the Washington, DC firm that represented me when I

finally won my appeal last January.

Is your application being processed through N.C. or Ohio? Some states

are faster in their processing than others are, and my only hope is

that you applied in one that is speedier than S.C. has been!! I

applied in May and didn't receive the first denial until August, and

then it took a year and a half to get to court, and now it's been

another 5 months since my approval, still without the first check or

documentation of the approval!! (sigh)

Please let us know if there is anything we can do to help you, Bert.

You've been a good friend to many of us in the past and I want you to

know that we are here for you now. If there's anything we can do,

just holler!! You've been through some horrible experiences.......and

while we can't change what's happened to you, we can support you now

the best we can....and offer our shoulders to lean on, our ears to

vent to, or our hearts to understand.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.

[Guest guest]

Bert,

welcome back, though I'm so sorry that you are having such a hard time

with your diabetes. I hope over time that you can get it into some

control, though that can be hard if you are brittle, which it sounds

like you are. You might want to talk with Heidi as I know hers is also

brittle and she might be able to give you some pointers on how to deal

with it.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.