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hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/26/2008 5:54 PM (GMT -7)   
As some of you know, I am being followed for chronic active hep C and having post-op f/u for liver cancer that was successfully treated through chemoembolization, TheraSphere, and surgical excision of the right lobe of my liver last May through Mayo Clinic Jax.  Following that, I developed an incisional hernia in my midriff, and that was repaired in mid-Dec. '07.
 
Last Thurs., I went for results of my blood work and CT scan done the previous week.  The surgeon noticed right away that I had lost weight!  My blood work was perfect (for me.)  Actually, the best it's been in years, which tells me that what I'm doing diet-wise is working (lots of fruits and veggies, cooking soups and other nutritious meals.)  The scan did show a pocket of fluid in my midriff.  I didn't know if it was due to lack of muscle tone or what.  The doc said it's a post-op glitch and that he could suck it out, but that it could come back.  So we are giving it a couple of months to see if my body will absorb it.  Meanwhile, I guess I will get a body shaper to make my clothes look better, as it looks really weird with just this one area pooching out.  I was given the okay to do some mild toning exercises.  I was also discharged from the surgery service.  :-)
 
The hepatologist wants to get my genotype.  She said most people in the U.S. are a 1, which is more resistant to treatment than other types.  My viral load in Aug. was 500,000.  She will try to have the genotype drawn from the blood work that was just done.  Otherwise, I don't have to go back until May or June.  She also wants to do an upper endoscopy in June to check for varices, although neither of us think I have them.  I suppose she will wait for those things before getting serious about hep C treatment.
 
I just wanted you all to know that I'm doing well and was given the "okay" for my trip to NYC in April!  Hang in there everyone--miracles DO happen.
 
Hugs to all,
Connie

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 2/26/2008 7:47 PM (GMT -7)   
yeah yeah Oh Connie I am so happy for you. So good to hear good news . Have a fantastic time in New York. I am going to Washington in April so I'll be thinking of you on your trip. yeah yeah
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.


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 2/26/2008 8:40 PM (GMT -7)   
Hi Connie, It's good to hear from you. I am so glad that things are going so well for you. It is about time. I will be thinking of you while you are having a wonderful time in New York.
Butterflythree
 
There is always hope!


1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 2/27/2008 5:28 AM (GMT -7)   
Connie, this is great news! I am thrilled for you. I'll bet that you are already packing (I would be) VIEW IMAGE 
I am hoping to go to Greece in late March with my husband. He has business there and I can hardly wait. I have been there before and I loved it. I went to Egypt in October and that was fabulous too. Keep up the good work!!!! You deserve the rest and relaxation.
 Shelly
PS
 The fluid usually does reabsorb but if not then they can drain it. It may be a rather slow process to reabsorb.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/28/2008 3:50 AM (GMT -7)   
Connie

I am so thrilled to hear the great news from your doc. I am so proud of you that you are sticking to your diet. (I an having a hard time with that myself) I know you are excited about your trip, Have a wonderful time and enjoy all the concert. My 25th aniversary is coming up in June and am hopeful that we can get away and do something special.

Thanks for the updatem good news always makes me feel hopeful.

Lucy

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/28/2008 8:57 PM (GMT -7)   
Connie  Sounds like you are doing good.  That is such good news.  You will love NY  and Clay Aiken!!!!  When I was there I just wanted to watch the people.  They are so intersting.  Shelly I've been to Greece and its one of my favorite places.  I hate I missed riding the donkeys up the hill to the village.  You will have a great time.  I think its one of the most beautiful places in the world!!!  Pink Grandma,  I have a funny story about Wash DC.  My girlfriend and I drove there one summer to see the sights.  I told her to want the map so I wouldn't end up right in the middle of things!!!  I didn't know she coudn't read maps.  To make a long story short they were having a parade some streets were blocked off.  We drove in circles for two hours.  Finally got a delivery truck driver to get us out of there.  Have a great time you so deserve it.
 
JoAnn

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 2/28/2008 9:27 PM (GMT -7)   
JoAnn I am going to Washington State . I should have made that clearer.LOL But that was a funny story. Hope you have a great evening.
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 2/29/2008 12:09 AM (GMT -7)   
Thanks to all for the well wishes, and "have fun" to those also taking trips soon! JoAnn, I grew up in Manhattan and didn't leave until I was 33--so it will be like a homecoming to me. A lot has changed, though--though thank goodness the street layouts are the same, so I shouldn't get lost!

I LOVE Greek food and intend to have a dinner at my favorite Greek restaurant in NYC, which still happens to be there. They haven't even raised their prices much. I would love to go to Greece, but don't see it ever happening. My best friend was there this past Dec., and sent me some nice things from there.

PinkGrandma, I was wondering if it was Washington, D.C. or state...so you've answered that. That's quite a trip, too.

I've been busy picking out where I want to eat and planning what I will do in the time I'm there. (Thank goodness for the Internet!)

Wishes for everyone's good health,
Connie

1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 2/29/2008 6:07 AM (GMT -7)   

Connie, I am so happy for you. It will be great fun. BTW I am married to a Greek (born and raised until 1970's). I have learned to love the food too. We lived in Manhattan and went to alot of Greek resturants. Our favorite is in Astoria. Now we live in Florida and we have found a great Greek resturant in Ft Lauderdale. Yum Yum-love that food. I went to Greece in 2005 and we are going again (hopefully) around the 20th of March for about three weeks. My husband has business there so we are semi-planning the March trip. I just can't wait. Anyway, have fun.

 Hugs, Shelly


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/29/2008 4:42 PM (GMT -7)   

Pink Grandma  OH My I am from Washington State!!!   What a small world.  I was born in Eastern Wash.  Lived there until I was out of school.  Moved to Seattle area to live with my sister until I could convince my girlfriend to move there.  We got an apartment together and both worked in down town Seattle.  That is where I met my first husband.  My oldest daughter just moved back because her husband did not like it here in the south.  So three of the grand babies are gone.  They've only been gone two weeks and I miss them so much.  Also she is my rock.  She would come clean out my frig if I was staying at the hospital with Jerry for any length of time.  I miss her so much we try and talk on the phone alot but its just not the same.  I just know I'm going to miss so much with the grandkids.  They just grow up so fast.  I know you will have a good time.  I just talked to her today and the weather has been great.  Have a Starbucks for me!!!

 

JoAnn


wheredidigo
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Date Joined Mar 2006
Total Posts : 605
   Posted 3/6/2008 8:35 PM (GMT -7)   
Connie, so glad to hear things are going so well for you!! I know you will enjoy your much deserved vacation:) take care
I am not sure where I am going, but I sure know where I've been!
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/8/2008 10:32 AM (GMT -7)   
Hello Trish glad to see you posting. You have such a wealth of knowledge to share. Marg last posted the end of January. She's a busy lady these days.

JoAnn for some reason I missed your post below. My sister lives in SeaTac actually. Right under the flight path. Better her than me!
And I will definitely have a Starbucks for you. Can't go to Seattle and not have a Starbucks huh? I love Pikes market. In fact Seattle reminds me of San Francisco.

Take care ...........
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 3/8/2008 10:45 PM (GMT -7)   

Well, apparently the last blood drawn was no longer available for the genotype testing (I didn't think it would be), and the hepatologist doesn't want to wait until May to have it drawn again.  So I have to go to Mayo on Mon. for the blood work.  Hopefully, after that, I won't have to go again until May.

The problem with my midriff has gotten worse, not better, and I've been having some tummy upset and pain.  If I were not going to NY next month, I would go ahead and have the fluid drained.  However, I have a lot of things to do before leaving, and just don't feel I can spare the time.  Also, it may set me back in terms of energy, etc.

The weather has been so bad here lately (heavy rain, high winds, cold), that I have not been able to get out and try walking more.  Hopefully, it will improve soon.

Hugs to all,

Connie

ETA:  I received my recent medical records from Mayo and noticed that it was stated I have "hep C with cirrhosis stage."  It does not state what stage and I'm wondering why not?  The surgeon had just told me that it was mild.  I guess that's something I will have to take up with the hepatologist in May.

Post Edited (hep93) : 3/8/2008 10:58:38 PM (GMT-7)


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/9/2008 5:40 AM (GMT -7)   
Connie, I am curious about the fluid in your abdomen. If I remember correctly it occured after surgery didn't it? If that is correct then I would suspect that the fluid can be drained in the surgeons office on an outpatient visit. I had a fluid
collection build up after I had abdominal surgery too. It really hurt alot after a few days. It was drained in the Dr's office. It was really instant relief. The pressure of the fluid on my stomach and bowels was making me sick so I had it removed. They just numbed the area with xylocaine and drained it. I am not sure how much fluid you're talking about but medically it should be treated. Do you have any other symptoms? Fever, exhaustion, loss of appetite etc? Is it possible it could be infected? You have gone thru so much I just don't want to see you suffer needlessly. If it is fluid and it is not being absorbed but rather increasing in size and volume iy is a little concerning for me. Please Connie at least have the Dr check it. I know you're going to NY next month and I would really like you to feel great when you go-not with belly pain. Just a suggestion because I care about you.
 Hugs, Shelly

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/9/2008 6:26 AM (GMT -7)   
Connie

Sor sorry your blood work didn't come back as well as you expected and that you are still experiencing problems with fluid build up. If at all possible you should try and have something done with that before you go on your trip, you would probably be much more comfy with it gone. They did not tell me either what stage cirrosis i was in until I was at the doctor's office and I asked specifically. From what was explained to me the stage is somewhat determined by symptoms, blood work, your reports of how you are feeling, along with the biopsy. I am very sorry that you too are having to deal with this. Let us know how your appointment goes, will be keeping you in my thoughts and prayers.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2008 10:20 PM (GMT -7)   

Hi, Shelly.  Yes, it's a post-op reaction from the hernia surgery.  He said it could be drained, but may come back.  However, he also mentioned draining it and putting some Betadyne in there to try to keep it from coming back.  Since the med. records mentioned draining it and then placing a drain...I doubt this would be done outpatient...especially with my hx. of liver cancer and surgery.  I think he would be concerned with infection and would want it done in the strictly sterile surroundings of an OR.  However, it could be same-day, I believe.  We were going to wait and see if my body would absorb it, but that doesn't seem to be happening.  I have to be out every day this week, but will try to call and express my concerns.  I feel hungry and full at the same time, which is an odd feeling.  I also feel queasy at times.  It's a large POCKET of fluid.  There are no signs at all of infection.  And thank God the burn that I got from the hot coffee has healed up beautifully, and I don't believe I will even have a scar.  Thank you, Neosporin!!  yeah  

Lucy, it not that my blood work didn't come back well, it's that it couldn't be used for a specific test...so I went today to have it drawn again, specifically for the hep C genotype.  ;)  Actually, my last blood work was near-perfect, except for one slightly elevated liver enzyme.  My LFTs have never been sky high, nor has my alpha-fetoprotein (cancer marker), even when I had cancer.  But thank you for the good wishes.

Hugs,

Connie

 


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/11/2008 6:06 AM (GMT -7)   

Connie, do you think he would be willing to drain it with a syringe in the office first? It doesn't have to be in a sterile environment if he does that although the area where he would insert the needle is. I just thought that may at least be worth  try first. That is what they did with me anyway. They have very large syringes as you know.I was just hoping that they could drain it before you go and then you could really enjoy yourself on vacation. (A well deserved vacation too!) Let me know what they say OK?

 Hugs, Shelly 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/17/2008 7:26 PM (GMT -7)   

Shelly, the Mayo offices are only set up for consult and computer review of recent labs/scans, and they'll write Rxs.  There's an exam table, but other than that they have no equipment in the offices.  So I knew that wouldn't be an option, to have it drained that way...that it would most likely be in one of Interventional Radiology's sterile ORs, and that was confirmed today.  Mayo takes zero risks and has a standardized way of doing things.

Well, I got an appt. for this morning.  For some reason, I had terrible insomnia last night and only got 2 hours' sleep.  I wasn't as tired as I expected I'd be, though.  The news was not good.  sad    After exam, both the P.A. and surgeon felt that I have another hernia, as well as fluid.  I just can't seem to get a break!!  (I know I shouldn't complain...I'm cancer free, and that's a miracle...but I'm SO sick of having surgeries!)  Obviously, I can't have the repair done before going to NYC.  So it's back to looking for some type of body shaper.  The P.A. was going to set up a CT scan for me the week after I return.  However, on the way home I started thinking that maybe we should have the scan done this week, to know for sure.  When I got home, I put in a call to the P.A. and left a message to call me before she left the office today, but she never did.  I'm sure I'll hear from her tomorrow.  However, I'm thinking they must feel pretty sure that it IS a hernia not to have told me to have a scan right way.  This is SO disappointing. 

One positive note, though, is that the transplant center, now located at St. Luke's Hospital, will be moving to Mayo's new on-campus hospital which opens April 12th.  So when I do have the hernia repair, it will be in a brand-new hospital with state-of-the art ORs and equipment.  From their handout, Achieving the Vision:

"...16 new operating rooms each measure about 700 sq. feet, much larger than average.  Most of the equipment is hung from the ceiling to free space and eliminate hazards in the operating rooms.

One of the most innovative aspects of the new hospital is the 'sterile core' in the surgery suite.  Instruments and surgery supplies are ordered and assembled in a central service supply area located directly beneath the operating rooms.  When ready, sterile supplies are transported via dedicated elevators directly to the operating room core.  Used supplies are covered and removed through a separate exit and sent down a different elevator."

"...nurses' work stations are located between every two patient rooms"...and patient rooms are only along one wall of extra-wide hallways.  Also, "each room is wired for use as an intensive care unit or typical patient room."  The rooms are each 350 sq. ft. and have sleeper sofas!

(Bolding above is mine.)

The surgeon said that he used a "natural" mesh and that it could have failed.  If so, he would have to place a prosthetic screen.  I only vaguely understand this.  Shelly, do you know what the mesh is made of that he placed originally?  He said there is a higher risk of infection with a prosthetic screen.

I was also unhappy that I've gained 2 lbs. in about 3 weeks.  eyes    I wasn't surprised, though, as I've been eating heavier meals and lots of nuts.  I have to rein in my diet before my weight starts climbing upward again.

I'll post more when I know more.

Hugs,

Connie

Post Edited (hep93) : 3/17/2008 8:29:27 PM (GMT-6)


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/17/2008 8:29 PM (GMT -7)   

Connie, I agree with you...if they thought anything other than hernia they would have gotten the CT scan right away. I would suspect that the syntetic mesh screen will work out fine. I can tell you that I had an artificial tendon put in my right hand at age 19. It was an 8 hour micro surgery proceedure which included various other repairs to my hand. After 8 weeks my body had destroyed the artificial tendon. They told me that I had an elevated acid count and it had eaten thru the tendon can you imagine that? Several years later I had an IUD placed for birth control which are plastic and again my body destroyed it! Go figure.

I'm glad that you went to the Dr though. At least now you know what you are dealing with and why you have pain/discomfort and the swelling. I don't know about you but I do better when I know what is going on. I think everything will work out fine. Have a blast in NYC and enjoy every minute of it.

 Hugs, Shelly


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/17/2008 11:25 PM (GMT -7)   

Shelly, thanks for answering.  I absolutely do better knowing what is going on.  That's a very strange thing about your tendon and IUD being eaten away by body acid.  I've been Googling "mesh screens for hernia repair" and there are quite a few.  However, I believe the type he used is a plant-based one that the body gradually absorbs within about a month.  So do you just not have a tendon in that hand, or did it have to be redone?  I had finger surgery once to release a boutonniere deformity, and they put me in a plaster cast up to my elbow for 6 weeks.  I'll bet they have better methods now.  That was around 1970.

Hugs,

Connie


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/18/2008 6:02 AM (GMT -7)   

Connie, after the tendon issue I had to have another surgery and they fused the finger. I had 5 surgeries total on my hand to try to repair it so I would have use of the finger but to no avail. Oh well, such is life I guess. I've gotten so accustomed to it I don't even think about it anymore. BTW I was in a cast for 16 weeks each. That was hard as I was so young and active. As for the mesh screen I really feel that it will work out OK for you. They are usually quite successful.

 


 Shelly
 
 When you fall I'll get you up and help you walk,when you can't walk I'll carry you, and   when I can no longer carry you I'll stay by your side.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/19/2008 7:51 AM (GMT -7)   

Hi, Shelly.  Sorry you have gone through so much with your finger!  Mine doesn't fully extend, but is quite usable.  Like you, it was so long ago that I don't even think about it and it works fine. 

The P.A. and I played phone tag since Mon. afternoon, but she finally reached me this morning.  I told her I'd already gotten the answer to my question, though--that I felt sure it IS a hernia.  She said she made an appt. for labs and a CT scan on April 22nd, and a f/u visit on the 23rd.  That's when they will set the surgery date.  I feel rather stupid now, not realizing myself that it was/is a hernia!  eyes   As I told the P.A., though, I really don't know a lot about them.  She said they didn't feel I'm at risk for strangulation since the belly button is not involved.  I'm SO sick of being cut on, but I'm going to focus on the fact that I will be one of the first to use the brand-new hospital and what a great experience that will be, although I'll probably only be inpatient for 2 days (they actually let me stay as long as I want, until I feel up to going home...knowing that I live alone.)  :-)   So I'm off this morning to Beall's to find a body shaper garment and a new bra.  They're having a sale, plus today and tomorrow are Senior Days with an extra 15% off everything in the store!  Hopefully, I'll find something that will work.

Hugs,

Connie

ETA:  03/20, Thurs.  Beall's had no body shapers at the store.  I did get a couple of things that were on sale.  I tried Beall's Outlet today and came up empty.  So I'll have to get to Sears one day next week.  I have a GYN appt. on Mon.  I'm just going to rest tomorrow and do some cooking on Sat. and Sun.  I think my neighbor will be coming over for Easter dinner.

Post Edited (hep93) : 3/20/2008 9:50:07 PM (GMT-6)


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/21/2008 12:25 AM (GMT -7)   
Connie, A quick question? Have you been examined to see if the portion of your liver that was left, has begun to regenerate. Thanks, june

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/21/2008 3:36 PM (GMT -7)   

June, they removed the entire lobe...there was nothing left to regenerate and they don't expect it to.  However, the left lobe of my liver, even prior to the surgery, had grown to the size of the right lobe and obviously was/is taking on the work of the missing portion.  My labs have been great--near perfect (one LFT was a little higher than normal.)  So I'm doing well as far as my liver function--just have to take care of the hernia and try to prevent it from happening a third time.  ;)

Hugs,

Connie



lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/22/2008 3:46 AM (GMT -7)   
Connie: April is just around the corner. It takes a while to get everthing in order for a trip . Hope you have a great time . Take it all in and enjoy . The Dr. and appointments will still be there when you come back. My son had a hernia opperation when he was only a few weeks old. They had to do it as soom as possible because when he cried it would pop out and they were afraid it would become estrangulated. And there is no way you can keep a baby from crying. On the other had my dad had one for several years before he had his repared and he used to do heavy lifting labor type work.
My last trip was to Mayo Clinic last week. They called and told me it was time for labs and cat scan. So I was going to make arrangements here. But they called back and told me that I would have to go back to see the hepatologist in April which ment we still had to get it done before the 18th. We couldn't even make flight plans on such short notice. Pheonix is a seven hour drive. Theres no way I can help drive I get to sleepy in the car on long distences but my husband said he would. The three appointment were scheduled for the 12th of March so we left around 10:00 from here arived went to our motel was to late to be able to eat since I had to fast. So my husband had fruit and I had water. My lab work was'nt till 10:30 then my cat scan was at 11:30 so by then I was starving. So we at at the cafeteria. My husband ordered a hamburger and got a piece of luttice from the salad bar. The cashier was really rude and told him he should have put it on a seperate plate so they could have weighed it. (A PIECE OF LUTTICE) . There I stood with a huge plate of salad I almost grabbed it and put it on my plate. Anyway he reported her for her rudeness. Did'nt get to see the hepatologyst he was in surgery. Saw his assistant who went over a few things. My labs look really good They had actually had improved in all areas except the ammonia which I was told was probaby because of the long fast short bathroom stops and a bit of elevelated gllucos. Which wouldnt surprise me if I were pre diabetic.(eveyone except my younger brother has it) my MELD score has not changed it started at 10 went to 9 and is still at 9. After that appointment we headed f;or home got home around 3am. Now I have been spending time trying to get copies of the cat scan I know I wont be able to understand it all but my computer friends may,
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