Going downhill fast, so scared!

Pancreatitis
#1

Hello my dear friends,

I am more scared now than I have ever been in all of my 36 years. I know that fear is one of the things we all live with everyday because of our CP. But when I was in my teens and all through my 20’s, I didn’t have fear about my pancreas.

Over the years I have been told by many doctors on numerous occasions the following: in 1978 when they found out I had necrotizing hemorrhagic pancreatitis (NHP) the doctor told my mother “I cleaned out as much infection and digestive juices I could. I then closed her up started her on IV fluids and antibiotics. You need to call anyone and everyone who loves her because she will not live throught the night”, the next morning he told my mother that “We don’t know why or how she got NHP but she will be a diabetic from now on”. Every doctor I have seen over the years had said something along these lines, “You must be mistaken about what you had as a child, no one lives through NHP”, I don’t feel comfortable about taking you on as a patient because you are so young and you will die, probably sooner than later, from your pancreas." I am assuming you are getting my drift and have had some of the same things happen to you. My mom always said that when it came to me and my health, “If you hear hoofbeats outside, it’s probably zebra’s.”

For many years i have always had “weird” medical things occur that most docs don’t know what it is or the tests don’t show how bad i feel. You know the ones…all your labs look OK or maybe slightly elevated, you should be doing this if you have that, you shouldn’t be this sick according to these tests and my personal favorite…have you been depressed, could you be pregnant, have you ever had a panic attack!!! After awhile you feel like you aren’s sick enough for these docs and nurses and at times wish (stupidly) that you were. I am now learning that to wish you were "sick " enough is folly.

I have been in the hospital 3 times in 2 months. Everytime I have gone in since June I have gotten worse each time. The June admission started to show some elevated liver ezymes, high SED and GSR and slightly elevated A&L (amylase and lipase). No other tests were done because my PCP and I thought this was probably just a routined flare-up that needed to be “put out”. I was in the hospital for 7 days.

Then 3 weeks later I am back in the hospital again with my PCP treating me. Now more of my labs are bad and she decides to do an abdominal series (CT w/contrast, small bowel follow though and upper GI). So now we find out that my labs are worse, the peristalasis (caterpillar movement of intestines that moves food to its eventual exit) is lowing down, there is a stricture (narrowing) in the duodenum (lowest part of the stomach where the ducts go in to ) and ulcers in the duodenum. I am treated in the hospital for 9 days and sent home. My PCP tells me at discharge that if I have another flare-up that she wants me to call my GI and let him determine if I should be admitted.

Three weeks go by and I am again going down the toilet. Mu GI does not do direct admits so I go to the ER where my doc has privileges. My GI is unable to come down to the ER himself so I get some jack*ss resident who I can barely understand. Before he comes to talk to me he looks over my lab results and I bet you can’t guess what he told me. With labs in hand and a 18 month old ERCP, he said that I do not have pancreatitis and the ERCP showed that I did not have chronic pancreatits. UUUUUUUUUUUUUGGGGGGGGGGGGHHHHHHHHH!!! I start telling him my past medical history, that his opinion doesn’t mean squat to me and he is more than welcome to take it up with my GI who diagnosed me. Needless to say he realized that he had gotten a tiger by the tail and knew better than to second guess or override my GI. The resident admitted me and I told me that my GI wanted to let my gut rest for a few days before he did another ERCP.

About the third day there, I had had enough of the nurses taking an hour to get me something for pain, decreasing my pain med without telling me, etc. I was sitting up in bed one afternoon waiting for something for pain and tears just started streaming down my face. I was so sick, angry, frustrated, afraid and quite honestly tired of fighting with the people who were supposed there to help me. I grabbed my pillow, shoved my face in it and started to scream, cry and tell God i hated him. Why was my life saved 29 years ago? For this!!! Constant pain, nausea, degredation by health care workers, the constant burden on my family…I could go on. To make matters worse, the ERCP showed that my psuedocyst was back and bigger, I had visible signs of scarring on the tail of my pancreas (that last ERCP showed no scarring) and my pancreatic duct had closed up again and I had to have another sphincterotomy as well as a temporary stent. The icing on the cake was what my GI told my husband and mother post ERCP. My GI gets the sickest CP patients from KY and the surrounding states. Over the years he has seen/treated about 4000 CP patients. He told my family that on a scale of 0-5 (0 is a nonscarred, noncystic pancreas and 5 is the worst he has ever seen) I was now a 2- or 3+. All this had happened in 18 months!!! What and the hell kind of shape am I going to be in 18 more months. I dream about being with my girls upon HS graduation, seeing them off to college, planning weddings, loving my grandbabies and traveling with my husband after we retire. Now i am afraid I will not make it long enough to see them graduate HS.

I know this is really long and I apologize. Lisa gave me the courage to open myself up and be really honest with myself and others. I know that none of us have the “answers” when it comes to CP but we do have each other. I have tried to open up like this to family and friends about what i just wrote about and they get afraid that I might so something to myself or just flat out don’t get it. I KNOW that all of us have had similar experiences so I feel safe sharing my fears, anxieties, tears, and anger.

If anyone could share with me how they deal with this impending doom/death that loom around us, I would be so appreciative. Not all of us are at the same level of illness, pain etc. but we all have CP…as well as love and respect. Isn’t nice to share things with a person or group of people that will not judge you and share the burden with you. Priceless!

Much love to all,
Angela

#2
Dear Angela,
 
First of all it does help to share with others in the same situation.  I can assure you that my faith and belief in God is the only thing that has gotten me through.  I have been dealing with pancretitus now for over 15 years.  I have had the tail of my pancreaea  removed I have had honestly 20 + ERCP's and stints etc. 
 
I do have a great GI doctor and he has written a letter that I carry to the ER which states all of my conditions and how he wants me treated.  This has helped although it took 10 years to get something like this.  My last few visits to the ER moved a little quicker because they followed his directions.
 
A year and half ago I was in ICU on the vent for a month.  It did not look very good for me.  I did recover and during this very slow recovery I ask the LORD  WHY!!!!!!!!!!.  He reminded me that His ways we don't understand, but I will tell you HE does give peace that passes all understanding. 
 
I will be praying for you and your family for strenth to go through this terrible problem. 
  
Try to get your doctor to write a letter on Letter Head how he wants your case handled and see if that will help you not have to face the millions of questions.
 
Because of Him,
 
Becky
#3

Hi Angela,
I feel your pain and frustration and wish you did not have to go through this. What an endless cycle this disease is. It’s difficult as you know for Medical Professionals and others to really understand the daily pain, GI issues and fatigue that goes through this. I have been told that my pain is “nerves thinking they have pain”, my answer is “what about the nausea??”, I think to keep sanity, you need to believe what you are feeling is real, and do what you need to do for yourself. The key for Medical care is finding that right GI Physican, who specializes in Pancreas & ERCP’s such as you have had. In the past I had many that were done by Physicans who were not specialized in it, now my bile duct & panc duct have recurring scar tissue which is another reason I am here.
Know that there are others who understand and care about what is going on with you.
Your in my thoughts,
Liz

#4

angela,

I wanted you to know that I have been praying for you, Lisa and Anyse all week.

I agree with Becky. I wouldn’t be able to do this cp thing without the grace of God. I remember one time in the hospital being told something I didn’t want to hear. I cried out to God and later that afternoon He gave me great peace and let me know that He would be with me. He has been.

Now is the time to lean on Him. For the last year I have just envisioned myself crawling up on His lap and letting Him just love me.

I would like to share with you a verse that I cling to and believe.

Psalm 41:3 - The Lord will sustain him on his sickbed and restore him from his bed of illness.

Lord God, Bless Angela today with many blessings, give her doctors your wisdom. Allow them to hear your voice and to see her body as You see it. Help them Lord to know the treatment that Angela needs. Thank you Lord for the work that you will do in and through Angela and the doctors. In Jesus name. Amen

#5

Oh Angela My heart aches for you and all you have been through!!! But I want you to know that YOU have taken the first step! Opening up and letting it out, Lisa and Durga have both helped me a great deal. They have both said open up, let it out. I did do this and oh how much better i felt, I do get scared just like our friends here on careplace this is normal, as you know! But you really took a big bite out of your frustration. I couldn’t of worded this any better, you are a beautiful person, strong, faithful, and a strong believer in wellness

I believe that with all of our prayers and writing will get you through this terrible time. I do sometime get down on myself thinking what a burden i am, but remember it’s our family (GOD,husband,children) that understand the best, they don’t know how to express themselves as we do here, but ya know i have learned that they are just as scarred as we are. Thank You for taking the time to share your feelings with us, and I will continue to Pray for you…

Lots of Love, and Hugs
Mrs Barb

#6

Hi, Angela–

Wow… I sure wish I could do more to be there for you right now. I can really relate, though.

I’ve had “weird” medical stuff my whole life, too. As a pediatric patient, and though the years (I’m heading to 44 years) I’ve always had the things that were easily misdiagnosed and misunderstood, and after years (the longest and most important dx took almost 30 years!) always got figured out. It’s always been the stuff the docs would say they heard/read about ‘once in med school.’ I sure understand how frustrating it is when docs don’t get it and then assume it’s something it’s not. Gosh-- it’s both strange and reassuring to hear someone else who’s life’s been like that, too.

It’s also humorous (?not) that you also go by the “hear hoofbeats, think zebras” thing. It’s the motto for my underlying primary diagnoses (I have about 40 official conditions that have been confirmed-- many of which would be disabling to most people if they had just one)-- and it totally overwhelms the medical folks who interact with me or have the ‘opportunity’ to treat me. I’ve even skimmed back my allergy list and medical list when I go to new docs so they won’t freak out or make assumptions that are just way off base. ( I even have zebras on my wallpaper! Most people don’t get the zebra thing… It’s both good and bad that you obviously do.)

I was only able to work for about 10 years-- not all full time-- after my degrees… so I totally admire your work and ability to have done so much with what you deal with. I actually started in nursing and started pre-med (before ADA) when I had my spinal injury and changed to social work. I loved the field, but it was a great decision to move on to more dynamic work and start the public speaking and writing. It’s been an awesome experience-- and continues to be. I just wish I could do it full-time!

I will also share that my gastroparesis is very severe-- bad enough that I’ve also lost consciousness from this before… in addition to the CP LOC’s. Gosh-- I guess I never realized just how much we had in common. All bad stuff, but wow… nonetheless. It again makes me wonder how much of the CP stuff we all have in common-- and how much of that the docs just never considered could be contributing factors. They sure don’t get how the labs and MRCPs, etc. can be totally normal and you can still be having a bad flare. And most of my CP hospital experiences (16 admission in the past 1-1/2 years approx. with 15 “surgeries”)-- were not positive. I was always right where it sounds like you’ve been: Struggling for proper pain management and trying to be understood, etc. I didn’t get “proper” treatment or care until I ended up on an oncology unit-- the care there has been awesome-- They get the CP, they get the pain management, they get the Mediport/central access… basically all the problems I fought with elsewhere (surprisingly, mostly at Hopkins)-- was taken care of and I could just focus on getting better. Now I do anything possible to stay at home-- until it’s literally life-threatening… because at least I can manage stuff the best I can and avoid all the problems and exhaustion that can come with a CP admission. It’s terrible. And I can’t see ever, ever having another ERCP (had about 6 in the past year or so with several sphincterotomies, etc.-- and a clear dx of CP based on visual findings)-- it’s always left me with worse pancreatitis and now the docs think all the ERCPs might be what led to the acute becoming CP. Yikes. And, a “duh” for the bright docs who never considered that one.

As for why you were saved… that’s obvious to me. You’re a super-wonderful, strong woman with so much to offer. While your life has obviously been very challenging, I always believe there’s a reason some of us get those challenges while others skate through life without any idea of what others deal with. For me, I work to “make sense” of everything bad that happens in my life by finding something positive to make of it. I’ve always found that if you look hard enough, and never ever give up, you’ll find it. You’ve obviously been a great part of a caring field professionally-- and I don’t think occupational choices are an accident. I really do admire you-- and again, wish I could do more. As I sit here with an Actiq twirling and wishing there was better relief, all I can do is relate and share and hope that something in that will help somehow.

You’re very special and I hope you know that. Please do everything you can to hang in there-- I’m confident that you’ll make it through this and everything else that comes your way. You’ve been a great example of that so far-- and while it definitely gets scarier the more it happens and the more you hear that from the docs (I lost track of how many times this past year I was told I “could have died”)-- there’s another day ahead and you just have to get there every day.

I’m there in any way I can be-- And of course, sending love and hugs and friendship and hope. Please keep us posted on how you’re doing–

Lisa

#7

Hi Lisa,
I live near Angela, and we see the same gastro. I was reading your post, and am interested in how you got into public speaking. My major is in English and I put an emphasis on Public Speaking by taking every class available. I went into other work that didn’t involve any speaking whatsoever, but now that I have been down with CP for 12 years I need a way to make some money when I am able to work. Can you please give me some pointers???

Karen

#8

Angela,

I go where you are now so many times. I have been hspitalized 5 times since Jan 1, not to mention about 4 or 5 emergency room visits that were also the same old crap from the ininformed and unprepared.

My quest for life became grater when I finally took the regns of my own health care and decided that I was going to be my wn best advocate, read more and more about CP (I have chronic necrotizing pancreatitis and KNOW how you feel all too well), try to help others (even if they did not like my answer) and make the best of my life only one day, hour or even minute at a time. Humor has helped me through and I also, ironically, made plans to end my life when I know that I will be going to a nursing home for the “long good-bye.” From all of this, I have become empowered and more positive about my illness and my own self worth in a world that does not share what I consider to be “worth.”

My Master’s thesis was centered on an idea that “One must love life more than its meaning.” We have to create our own with what time we have. I have to face my own death as I have deteriorated quite a bit over the last three years or so. Now, I am bedridden. I can’t walk to the kitchen in my own home. All I know is our Master bedroom and the bathroom in it. I accept that and make my world larger by studying and learning every day. The mind is a great refuge as well as a place from which our lives may swell with ideas to share with those who will hear us and spend time with us.

I just hope that something that I have said will give you some succor and an idea of what you can do to make things better for you because only you can do that and no one can do it for you.

My love is with you. I know and live your fear as well. I hope that you can rise above it for you will be stronger within at least.

Anyse

#9

Hi, Anyse–

It’s good to see you back around. I don’t know if you got the message that I had misplaced your phone number in the hospital-- I’m really sorry about that.

Angela-- I sure hope you’re getting through all this okay and please know that I’m thinking about you all the time.

I’m hoping this connection will work-- trying to catch up with everyone from a remote location that bombed last time!

Take good care and many hugs!!

Lisa

#10

Hi My dear friend Angela,

I just read your note about how you are feeling with the diagnosis, treatments, how scared you are that you won’t be there for your daughters’ HS graduation. I want to tell you one thing I thought same way when I was continuously in the hospitals without finding out what’s going on and what’s going to be my future with my kids, whether I’m going to be there or not etc. I was so scared when my baby was so small and was wondering why did I gave birth to my little girl if I cannot take care of her or be there for her when she needs me. I don’t want to regret about my decision of having my little girl. So, I decided to ask all the questions that were bothering me.

I did ask the doctors who were treating me how long am I going to live and whether I’m going to make it or not. First the doctor was shocked but then he said, ‘there are still lot of options and we haven’t looked at them. We are trying to send you to a bigger hospital where more modern equipment is there which can find out what’s going on. Once we find out what’s going on we can decide what to do.’ Then I said, ‘what if it is too late?’ ‘We hope it is not too late and be able to do something before anything happens.’ he said.

They have sent me to the Jeffersons hospital in Philadelphia where they did Symphecterectomy and when it didn’t work out they did Puestow procedure, where they opened up the pancreatic duct and sewed it to the intestines. During the surgery the surgeon found a big stone obstructing the duct and she removed that too. She also found that my gall bladder is totally damaged with so many stones in it. Just before the surgery also they did a test to see whether there are any stones in the gall bladder but the test didn’t show anything. I read recently this kind of things happening to other friends in Care Place. When the doctor said, Symphecterectomy didn’t work out and I have to go for surgery I was so panicked, scared, frightened and was looking for anyone to share my fear. But no one was available. The nurse was a very nice person but she was busy with other patients and she said, I wish I can sit down and talk with you but unfortunately I’m very busy today. If you want I can give you Ativan through I.V maybe that will calm you down a little bit. That’s what she did. I brought my chair out and sat down because I felt like the room is getting congested and is going to eat me away. When we get panicked every single thing scares us. Then I saw an Indian doctor and asked my nurse whether he can spend few minutes to talk with me. And he did, I put all my fears in front of him and he said, if it is Puestow procedure there is nothing to be worried, this surgery will take away all the pain and problems you are having. At that moment he looked like a savior. Then my close friend from Nevada called to see how am I doing then I had chance to talk clearly with her. She took all the time to explain and give positive thinking towards the idea of surgery. It’s not a bad idea at all. Everyday so many people are having surgeries and are getting better and with every surgery you have risks but they rarely happen. So, you need to relax. It took so much effort from different people to calm me down. I asked my close friend who used to take care of my baby to come and visit along with my husband who brings the baby. She came and we talked then she took the baby home to give some time to discuss with my husband.

We all get scared, frightened and worried about our kids and the procedures and surgeries scare the hell of out of us.I know it is hard for you to not to go to the hospital where you feel comfortable. The new hospital if it is a big hospital or University hospital it is hard to get attention like in the small hospital. When they transferred me to Jeffersons for few days I missed everyone from the other hospital who came to say bye to me. But then I thought I’m here for the treatment and if they are busy that’s because of not enough nursing staff. I can’t expect the place to be like the small hospital. Every hospital is different, every doctor is different and the nurses are different etc. We have to concentrate on our treatment and what is the purpose of our stay there etc.

Life is full of adjustments and compromises. If we need to survive we have to adjust according to the conditions and environment of the hospital.

THE MOST IMPORTANT THING THAT YOU NEED TO HAVE IS ‘YOU’RE WILLING TO BE THERE FOR YOUR KIDS HS GRADUATION, TO SEE THEM SETTLE DOWN IN GOOD CAREERS, GET MARRIED, TO PLAY WITH THE GRANDCHILDREN.’ ALL THESE THINGS WILL BE POSSIBLE IF YOU BELIEVE THAT IT IS POSSIBLE. “WHERE THERE IS A WILL THERE IS A WAY.” *IF YOU STRONGLY WANT TO BE THERE FOR YOUR KIDS YOU HAVE TO MAKE THAT DECISION BY TELLING YOURSELF, *‘NO MATTER WHAT I HAVE TO GO THROUGH TO GET BETTER I’M WILLING TO DO SO THAT I’LL BE THERE FOR MY KIDS’.

When Whipple did not work out completely, it worked partially for me, the doctors said, I have become Idiopathic Chronic Pancreatitis patient, that means the pain is going to be there through out my life, I have to depend on J-tube feedings for living, you have to depend on high doses of pain medication for survival, IT HIT ME SO HARD! I wanted to run away and kill myself and hated myself for becoming like this, even though it’s not my fault. At that moment all those feelings are natural for me.

I was upset for a while then slowly found something to occupy myself and then I found out that if I’m busy I’m not worrying too much about pain. That was a great thing for me to find out.Then I started to make myself as much busy as possible. Now I have confidence that I’m going to be there for my kids graduations, to see their careers, get married, play with their grandchildren etc.

*It all depends on how we take things Angela! * _You are a very compassionate, loving and a very strong person. _ Whatever you are going through now are the natural feelings. You are allowed to feel like that. _ But after some time you have to look into things what can be done, what are the options, how am I going to deal with all these things etc. _ I know dear, you must be thinking that it is very easy said, than done. I know. BUT EVEN THOUGH IT IS HARD TRYING, IT IS WORTH TRYING BECAUSE LIFE IS WORTH LIVING MY DEAR FRIEND!

I’M SURE EVERYTHING IS GOING TO BE ALRIGHT AND YOU ARE GOING TO BE THERE
TO PLAY WITH YOUR GRANDCHILDREN.

Look at me I thought I’ll never be able to go to my country and see all the people but I worked hard and made it happen. I took care of myself and the attacks at home with the break through medications for almost 8 months so that the doctors will get confidence that I can travel by managing the pain. Whenever I used to bring the topic they used to say, ‘why don’t you ask your parents visit you?’ We did that too. But I can’t ask everyone to come here to visit me. That can be possible only if we visit. Where there is Will there is a way darling.

Please start thinking positively. Even though we all are CP patients we are all different people with different problems. You need to educate yourself about the problems you are facing and look into the options of what can be done and discuss with your GI doctor and think positively that everything is going to be alright dear.

I love you and you are a very strong person and I know you can do it, dear friend. I look up to you because you are such a nice person and give such good advises to help people.

Hope you don’t mind me writing all this. I just want to start thinking POSITIVELY otherwise it’s going to be hard for you and for your family. You have a wonderful husband who supports you, loves you, understands you, great kids who love you more than anything in the world. You have to get strong for them and for yourself because we all need you dear friend.

Lots of love and many hugs.
Durga.