Varices nightmare

New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/29/2008 8:45 AM (GMT -7)   
As many of you know my husband was told that his varices had improved from grade 2 to grade 1 and that there was no need to change his medication.  It was doing its job.  Evidentally this means nothing.  He was in the hospital from Sunday until Thursday afternoon.  He came home that day complaining of dizziness and fatigue.  He thought it was due to not eating right that day and asked us to help him lay down for a little while.  He said he would get checked out after he rested a little.  My son and his friend helped him to bed.  I gave him something to eat and then he complained of being nauseated.  I checked on him several times each time asking him to go to the hospital.  The last time I went down he said he was going to rest a little while longer and then go.  A couple minutes after I came back upstairs I heard a noise downstairs.  I looked down and my husband was at the bottom of the stairs.  His eyes were wide opened and fixed.  My husband's brother, my son and I all ran down.  While my son was calling 911 my husband's brother was screaming at him and rubbing his chest trying to get him to respond.  Finally he got him alert.  The ambulance came and said that he was stable enough to make it to SLU (which is about 55 minutes away).  We told them to take him there because that is where his hepatologist is.  The ambulance got one street over from my house, and he started vomiting blood.  They then rushed him to our local hospital.  He was given 3 units of blood and 2 units of plasma.  about 5 hours later he was stable enough to be transported to SLU.  SLU ran some tests and said that the bleeding had stopped on its own.  We found out later that when he got to the hospital his hemoglobin was at 3.  The nurse told us that in all of her 30 years of nursing she had never seen a person with a hemoglobin of 3 live to tell about it.  He is doing ok now.  We are all just so afraid of it happening again.  Since it has happened once the chances are great that it will happen again. They were going to do the TIPS procedure but with the holiday there was no one there to do it.  So, he was sent home with medication that is supposed to prevent it.  The doctors are supposed to call us next week to set up appointments.  When I told the doctor what we were told about the varices improving he said "As far as I know once they are grade 2 they are grade 2".  What does he mean, as far as he knows!  Isn't he the doctor. This has all been very scary for us.  We were caught off guard since in October we were told that the varices had improved. I thought we had awhile before we would have to worry about a bleed. 
 
Sorry this is so long, but I wanted everyone to know my story so maybe it can help someone in the future.  Don't let your loved one make the decision on when to go to the hospital.  Drag them kicking and screaming if you have to.  Dizziness, nausea and weakness can be a sign of internal bleeding.  I wish I had known that Sunday.
 
Please keep us in your prayers.  You are all in mine.  And thanks for being here.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/29/2008 9:23 AM (GMT -7)   

((((Butterfly)))), I know that you must have been scared out of your wits.  My husband never have a bleed but he did have his varices banded a couple of times.  I know that it was my worst fear for him to have a bleed.  

Thank you for sharing your story.........Liver disease takes so many different paths for each individual that I really don't think that most of the doctors know everything........including the Hepatologists.  Yes they are the most knowledgeable about it but there's probably a lot they don't know. 

I honestly believe that the people living with the disease have an inside advantage....but because we are not doctors .......the doctors tend not to take our word for it and blow us off sometimes.  I think that what the doctor told you, he actually meant that in his training or his experience that once grade 2 it does not inprove to grade 1.  But as everyone knows  this liver disease ride is full of surprises.  Each ride is different.  

Take care Butterfly and as always you and yours are continually in my thoughts and prayers..........


Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/29/2008 12:07 PM (GMT -7)   

Butterfly, how horrifying!  I'm sure you were beside yourself.  Refresh my memory:  Were his varices ever banded?  This is one area that I have thankfully not had to deal with, and don't know much about.  I hope they can do the TIPS procedure if that will prevent this happening again.

My prayers are with you and your husband and family.  Be strong.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/29/2008 2:05 PM (GMT -7)   
Thanks Pink Grandma and Connie. It was horrible. I never want to see anything like that again. He has never had any of the varices banded. He had the endoscope done in October and was told that they had improved. The varices that ruptured are in his stomach. They are unable to band those. I'm not sure if they plan on banding the esophageal varices. That was never mentioned to us. The only thing they told us is that they wanted to do the TIPS procedure to relieve some of the pressure in his stomach. When I read the orders he was sent home with it said they would call us next week for appointments with the hepatologist and Endoscopy for EDG & banding. I am so confused. They did not do a very good job of explaining anything to us. A person was supposed to come in and explain the TIPS procedure while he was there but know one ever came. I think due to it being a holiday week alot of the doctors where gone and he was being cared for by interns. They really don't know much at all. One of them asked him everytime he came in the room if he was taking Lasix for heart failure. I thought, are you kidding me. That is such a popular drug prescribed to liver patients. That had me worried. I'll be glad when he goes in for the appointments. Right now I am so on edge. Everytime he calls my name or makes a noise I worry that something is wrong.

Thanks so much for keeping us in your prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/29/2008 2:52 PM (GMT -7)   

Butterfly, that IS confusing.  I would call his hepatologist on Mon. and find out what should be done...whether or not he needs the banding and if they are going to do the TIPS procedure.  Ask questions and make sure you understand everything.

Holidays and weekends are not good times to be in the hospital--especially long holidays like this weekend.  I had emergency surgery just before Christmas one year, after which my doctor was totally unreachable.  I have also been in the hospital during holidays several times--once from just before Christmas straight through until after Valentine's Day...missed them all.  Of course, sometimes it just can't be helped.  However, do try to get things sorted out next week before you go ahead and put your husband through things that may be unnecessary at this time.

Big hugs,
Connie

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 11/29/2008 2:53 PM (GMT -7)   
Hi butterfly, I'm so sorry to hear about your husband  but really appreciate your sharing with us.  Take care and keep us posted ok!
 
 
Judith

bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/29/2008 8:59 PM (GMT -7)   
Butterfly.... I am so sorry to hear about your husband and can't imagine how terrified you must have been and still are. Things always happen during the holidays when you can't reach anyone.
As far as Dr's are concerned, they (all of them are not on my best list right now) due to telling me one thing then another but is very trivial to your husbands condition. I wish I could be there to help but since I can't I am sending many prayers. Stay strong and try to get some rest.

Karen

okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 11/30/2008 9:02 PM (GMT -7)   
Butterfly
I've been there where you are now and it is petrifing.  We got up one day before Jerry's transplant and he vomitted once and there was a little blood and I asked him if he was ready to go to the hospital and he wanted to wait, well I went ahead and was getting ready when  he did it again and we had a large bowl of bright red blood, I called our local hospital where my sis works and they had a chopper ordered and was there shortly after we were and they flew him to the hospital in OKC, which saved his life.  We only had one more bleed and they said it was an ulcer on a banded varice.  They had banded six.  I still get scared when he gets sick and check it out.  Your family is my prayers, I know this is a very scary time.  Please try to take care of yourself.
Helen

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/1/2008 3:45 AM (GMT -7)   
Butterfly

I know that this must have been the most horrifying experience for you. Please keep us updated on your husband. Remember we are always here for you, My thoughts and prayers will continue to be with you and your family.

Lucy

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/1/2008 6:23 AM (GMT -7)   
Thank you to everyone for all you prayers. I am going back to work today and so nervous about leaving him. My son will be staying with him. He is doing pretty good, just weak and very little appetite. He has been having anxiety attacks and not able to sleep very well. He doesn't like for me to leave for very long, but I have no choice. I know that this may only be the beginning, so I have to work now and save my time off for trips to doctors, etc.
Butterflythree
 
There is always hope!


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 12/1/2008 9:34 PM (GMT -7)   
Butterfly,

I am SOOO sorry!! That must have been horrifying for you! I will continue to pray for clarity for the docs. Unfortunately, since this happened over a holiday weekend, you probaby were dealing with docs you normally would not have. Be pushy! I understand how nervous you are going back to work.....I say a little prayer everytime I walk out the door to go to work in the mornings....it is very scary. But, you are going to have to keep the faith and know he is being watched over. Yes, you are right, you need to work. If anything....to give you a "break".....I know that sounds silly but for me, work is what keeps my mind busy on other things so it does not go wandering about the "what if's" of this disease.

You hang in there.....I will pray that they get something done soon. You take care of you, too!!

Mer

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/6/2008 10:58 AM (GMT -7)   
My husband goes to the doctor Monday for consultation regarding the TIPS procedure. We have started a list of questions to ask the doctor. He has been doing better the past couple of days. The anxiety attacks haven't been as severe or as often, and his appetite is alot better. He is still having trouble sleeping. I will keep you all updated.

Thanks so much for all of your thoughts and prayers. You are all in mine.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted Yesterday 6:28 PM (GMT -7)   
Well, we didn't get any of our questions answered. I don't even know why they said it was going to be a consultation. The PA didn't know much about the procedure. She just said he needed to have it done and that we may be needing to talk about the transplant list in the near future. She expects the MELD score to drop after the procedure, and then he wouldn't need to be listed for awhile. We don't know anything more now than we did when he was released from the hospital. They are going to contact us with the appointment time for the TIPS. My husband told them to set it up for the earliest date possible. He just wants to get it over with. I have done some research on my own, so I know a little about the procedure. It just would have been nice if someone would have sat down with him and explained it a little.
Butterflythree
 
There is always hope!


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted Yesterday 9:34 PM (GMT -7)   

Butterfly-

 

I know all this is SOOO frustrating!! I wanted to encourage you to "stomp your feet"!!! Your husband (and you) have the right to make sure any procedure or treatment you are receiving is explained to you very thoroughly!! And, if you are not satisfied with the answers you are getting....keep calling someone until you get the answers you are satisfied with. Call the chief of medicine at the hospital if you need to! I think I read on another thread that there may be another medical center in your area where there is a transplant team?? Pray about possibly transferring there. My husband's MELD was only a 6 when he was listed.....so I don't understand why they are telling you that his MELD has to be "higher" in order to get even evaluated. He's had varices trouble, which is definitely all the more reason he needs to be seen by a transplant team! I will pray that the right doctor will come in your path to give you answers....and peace!!!

Hang in there.....

 

Mer

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted Yesterday 11:09 PM (GMT -7)   

Butterfly

I agree with mer. We are right in the middle of verices nightmare.  My husband has had so many blood transfusions they are getting ready to do a scope on him again to see if they can see anything.  His HCT was down to a 23.  He got two units of blood today and needs more.  Also he has started swelling again.  They talked about doing a TIPS on him last year and decided against it.  I was really glad they did becasue it makes it hard to control the amonia.  I don't understand why you can not be listed either.  What difference does the MELD score make when it comes to getting listed.  The MELD is to determine where on the list he is.  You need to seriously consider going to another hospital.  There should be a whole team discussing this whole thing with you.  Are you seeing a liver specialist>  I sure hope so.  You will end up doing what your husband wants in the end.  I wanted to change at one point but my husband didn't.  They get so tired and burnt out.  As you know we do also.  Just try and get some strength and keep fighting.  We have to do it for them becasue they do get so tired. 

JoAnn

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted Today 7:22 AM (GMT -7)   
Mer & JoAnn, Thanks for your advice. He is seeing a liver specialist. He is supposed to be one of the top in the nation. I guess that is why it is so hard to see him. My husband said he only sees him when it is time for biopsies. I thought that he would at least see him after the bleeding incident. They have been telling us since my husband was first diagnosed with cirrhosis that his MELD would have to be 15 or higher and stay there for awhile before he gets listed. I guess that is just one of the rules at that hospital. They did say that the bleed has given him more reason to be listed. I also have been afraid of the TIPS procedure, but have been told that the encephalopathy is easily controlled with medication. Also, he has know choice. Since the bleed was so severe they expect that it will happen again if he doesn't have the procedure.

I will continue to pray for both of your husbands. I really hate that they are going through all that they are. I HATE this disease.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted Today 5:05 PM (GMT -7)   
 
Butterfly
Ditto on this desease.  It sucks big time.  We are now getting close to two years.  And I don't mean just knowing for two years.  I mean TWO years of living off and on in a hospital.  TWO years of STRESS.  TWO years of living on the edge.  TWO years of not know if the love of my life was going to make it another day.   Today back to the hospital for more blood work.  Tomorrow back to the hospital for Albumin, Para, and on and on.  Then The next day back to the hospital for more blood.  Then I'm sure back on Friday for MORE blood.  Can't over load his system.  So only TWO units a day.  And on and on and on.  I hate this disease too.  Well, I haven't been to the ER for a while that will probably be next.  Sorry for rambling.
 
JoAnn

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted Today 9:06 PM (GMT -7)   
JoAnn and Butterfly-

I, too, despise this disease!! I saw a little glimpse of my hubby a couple of weeks ago, and it breaks my heart that I only see that every once in a while. My hubby was diagnosed with HepC and cirrhoses 4 years ago, and it has been a 4 year roller coaster ride...with the last two being the WORST!! This last year, I think we have averaged being in the hospital or ER at least once a month or everry six weeks at the most. And, now he has a paralysed vocal cord and we have no clue what the cause of that is....so.....more tests. As exhausing as it is for me (I work full time, take care of him and am mommy to our 4 year old), I cannot imagine the toll it is taking on him.......he is getting so tired and I have noticed a big change in him the last few weeks....almost like he's somewhere else. I cannot put my finger on it, it's not like when his ammonia is up....just like he's somwhere else. I sometimes wonder if he's ready to quit the fight.

You two hang in there!! Try to get out and enjoy this holiday season.....with all that is going on, we do have so much to be grateful for!!


Mer

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted Today 9:45 PM (GMT -7)   

Mer

I feel so bad complaining.  I do not have to work and my children are grown.  Every time I think I have it so bad there is always someone worse. I know what your talking about in the hospital or ER.  It was like that all last year for me.  I hope you have some releif soon.  I know what you mean about your husband.  One day I looked at my husband and said I miss you so much.  He said I'm right here but only physically.  He's not himself and I want my husband back so bad.  Some days he will tell me how sorry he is that he is causing me so much stress and he will make it up to me when he gets his liver.  He even told me the other night he will take care of me forever when he gets better.  He's such a sweetheart!!!!  Hang in there Mer I will pray for your family

JoAnn


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/10/2008 11:49 PM (GMT -7)   
Hello everyone, I finally have some time to catch up on posts...... wow I am seeing all the difficulty everyone is having this past month and wonder how we all survive each day. Since Doug came home even sicker than he was and now with a broken knee i just want to run outside and scream " HOW MUCH MORE AND HOW MUCH LONGER CAN THIS CONTINUE" , right now we are both physically and emotionally drained. The poor guy has gone from almost total renal failure, 2 episodes of SBP a meld score over 30, having 26 litres of acites removed and breaking his knee and all this in 3.5 weeks...... now his meld is 16 he is limited in mobility and totally exhausted. I now have total recovery from my wrist surgery.... thats good.
The one thing we need to remember as a caregiver and patient. Your Doctors have many patients you have one, demand the answers and care you deserve do not let them forget you are a warm blooded human that needs the time and courtesy of knowledge. It is your RIGHT!! I know there are some DR's who cringe when they see me...... but guess what I dont live with them I live with Doug and his ESLD. We live the disease everyday, I know Doug picks on me sometimes and swears MINE are BIGGER then theirs (U know what I mean) but he loves when I jump right in with both feet.
Sue
When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/11/2008 9:50 AM (GMT -7)   
Here, here, Sue, You said it so well. I total agree with your comments on doctors and being aggressive when needed.

I am sorry that you have been through so much this past few months....I know it's been rough. Have you been able to sneak a little time for yourself lately???

JoAnn, Mer and Butterfly, you friends are an inspiration to me and I am sure to a lot of others....

As always...........thoughts and prayers to all.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/11/2008 7:37 PM (GMT -7)   

Ok

I have a question for all of you.  This damm disease.  Jerry started gaining weight probably the day after Thanksgiving.  He went from 175 (which he has maintained from several months.) to 202 lbs on Monday.  He was miserable.  Yesterday we went to the hospital for a Para after being there every day this week for either blood work or transfusions!  Do you know how much they got???  A wopping 1 & 1/2 liters!!!  Yes, I'm serious.  It wasn't even worth the trip.  He woke up this morning to both legs swollen twice the size!!  I even made him sleep in his socks!!!!  Why couldn't they get more fluid.  WE go back to Vanderbilt on the 18th to do a scope.  They want to see where he's loosing so much blood.  When he had the Para's all last year up to JUly of this year they would always get 6 to 10 liters.  Is this the beginning of the end???  His legs are seeping fluid also.  I'm thinking the time has come.  His MELD is a wopping 12!  Then there is the rotten economy!  He's had to make some major decisions now what to shut down who to lay off!!!  YUP what next.  Can anyone shed some light on this fluid thing.  I asked the ultra sound tech and he said that is all they could get!!!  I'm stumped.  Anyone heard from John.  I miss him.

 

JoAnn


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/11/2008 8:53 PM (GMT -7)   
JoAnn, I have Seen Doug gain 7lbs overnight with a total of 30lbs in a week and they only get 2-5 litres. This is the story, after having constant issues with fluid it starts to saturate in small pockets of fat and tissue, it will deposit itself in the legs, groin even in areas in the rib area. They can only tap fluid in an area that they can safely get at hence the small amounts. If at all possible have him get his legs up fairly high when sleeping to redistribute the fluid, we were also told if to much gets in the groin area to prop his butt up when sleeping. Please do not panic over this as it does happen, you really have to pay attention to his lungs and any wheezing. Use an aloe lotion on his legs to help his skins elasticity. This really is not that uncommon..... believe me I ask all kinds of questions about this stuff. I will gladly double check info with the DR's tomorrow and write back again Friday evening.
Sue
When I started counting my blessings my whole world turned around.


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 12/11/2008 9:05 PM (GMT -7)   

Hello everyone,  I am glad I'm not the only one and sorry I'm not the only one right now living in a nightmare.  Jerry is really going downhill fast.  For those who don't know, he had a liver transplant in 10/07 and was slowly recoving when we found out in May he has Liver cancer which has spread to his spine and who knows at this point. I know he has at least one fracture in his C-Spine and I think he has fractured another one and possibly his right hip.  He is in so much pain all the time and is sick so much that he has no quality of life, he lays on the couch and watchs tv all the time.  Wears a 100 mcg Fentanyl Pain Patch and takes oxycodone all the time.  I pray that he last thru Christmas, but sometimes feel selfish for wanting him to suffer that much longer.  He won't go to the doctor anymore, I want to take him to the ER tonite, but he won't go.  All I want to do is cry.  I don't know how much more suffering he can handle.  This is getting harder everyday.  I'm trying to stay strong for him and the kids (all adults thankfully), but it is not that easy anymore.  He doesn't want hospise yet.  Does anyone know if insurance will continue to pay for anti-rejection medicine when someone goes on hospice?  I heard medicare won't, so I wonder about insurance.  I'm sorry to vent like this, but I swear I'm about to go crazy.  The only bright spots right now are the 2 new grandsons and the other grandchildren.  Please take care all and I'll keep you in my prayers as always.

Helen


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/11/2008 9:50 PM (GMT -7)   

Helen

I wish there was something I could say to help you.  I am SO SORRY>  I personally think you need to talk to the Dr. about hospice.  You just can't do this alone.  He needs strong pain meds or something.  Maybe even a hospital stay.  Its just too hard on you alone.  Let the adult children help if they want to you need some rest.  I agree about those grand babies.  We have 11 and they are so fun. Somtimes if only for a moment they make all the pain go away.  Maybe they are doing that for Jerry.   You are in my prayers.

 

JoAnn

New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, December 09, 2016 4:43 AM (GMT -7)
There are a total of 2,735,236 posts in 301,285 threads.
View Active Threads


Who's Online
This forum has 151390 registered members. Please welcome our newest member, Clauddfin.
261 Guest(s), 8 Registered Member(s) are currently online.  Details
George_, SpecialLady, Loutucky, getting by, Dan Embrey, Southern Comfort, Traveler, ljimd


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer