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Posted 7/6/2006 2:33 PM (GMT 0)
Jennifer usually starts these but I thought Id do it this time to give her time to get caught up:)

Rick is doin well from the stents being put in and has one more to be put in on july 28th. He cant have his teeth pulled til sept 15 due to the stents ,so weve made an appt for the 15th so we can squeeze this in hopefully before something else happens. Hes NOT doin so well with treatments,,,,he seemed to be handling them better but now hes vomiting alot,his white blood count is extremely low,,,,,so low his heart drs office called about them but his gastro dr doesnt seem concerned,and isnt seein him til january. On top of all this,Rick is having dizzy spells,numbness on the left side of his head and faints sometimes. His heart dr refered him to a neurologist,but they wouldnt get him in til sept(what is this about waiting?????) ,the heart dr didnt want him to wait that long so sent him to have a catscan run wed,,we will find out today or tomorrow(friday) if they found anything,and if they do,a neurologist will be called in right away. Rick says"im goin to have all the ologists there are cept a gynocologist!!" lol  i told him honey,if ya start to need one of those,,maybe we should have a lil talk lol :hugs: all

 

Posted 7/6/2006 10:08 PM (GMT 0)
Trish, I would think the GI doc would be more concerned.  Does Rick have a hepatologist?  It's possible to reduce the dosage by half, in order to allow the white cells to build up again.

Well, the latest with me is that next week (I believe on the 13th...was sleeping when they called, but I'll get a schedule in the mail), I will go to the hospital for blood work, a CT scan with contrast, and a meeting with the interventional radiologist to ascertain what the TheraSphere accomplished, as far as the cancerous liver tumors.  I will also have a lot of questions, as I will have to make a decision as to when (or if) I will have the right hepatectomy.  I am in so much pain from my hip, that I really would like to get that surgery behind me, but I feel fairly sure that the liver surgery would have a shorter recovery time.  Also, it would have to be done within the next 3 months.

I'll report more after the CT scan and consult next week.

Connie

Posted 7/9/2006 3:55 AM (GMT 0)
Hi Everyone,

By George, it is July; I'm still trying to get through June.

I'm posting today because things are calmer than they have been the rest of the week. Gene seems more like himself today after days, if not weeks of not being quite right. His encephalopathy was worrying me, but it didn't seem to bother the nurse or home health aides. And I wasn't up to pointing out every subtle and not so subtle change to them. I assumed the diabetes was putting an additional strain on Gene's system.

The past few days were interesting for me. I reluctantly decided to try antidepressants; the doctor prescribed what he thought was the medication with fewest side effects and started me off at a non therapeutic level. The first day I was a zombie, dizzy and my stomach felt sick enough to be on chemotherapy. Well, never having had chemo, maybe I'm exaggerating, but it was worse than anything I experienced in my 68 years. I figured I would get used to the side effects so took my second dose the following day. What a mistake that was. The side effects came on faster and more severe. Additonally, I was crawling out of my skin and was unable to sleep at all that night.

The next thing I knew, I was scratching myself violently from itching. I reread the sheet that came with the prescription and realized I was having an allergic reaction. Fortunately, my breathing wasn't affected so I didn't need to go to the ER.

So much for antidepressants. My saddness and anticipatory grief is much more manageable than medications. As a friend suggested; let meditation be my medication.

Hey, today we actually got out for a little while and enjoyed hamburgers at the Ice Creamery. The Chaplain suggested to Gene that we have dates. If he's not up to going out, then just sitting on the deck sharing watermelon.

I hope everyone is having a good month.

Hugs,

Barb

Posted 7/9/2006 9:38 PM (GMT 0)
Barb, I'm so sorry you had that reaction!  May I ask what it was that you took?  I'm generally against antidepressants, but sometimes they are truly needed, even if short term.  My significant other is clinically depressed and it took months for his doctor to find something that didn't cause adverse side effects.  I take Paxil 25 mg at night, to aid sleep.  It's not a therapeutic dose for depression, but I don't notice any side effects from it.

Dates are a good idea.  I had one myself today.  We went out to lunch at a barbeque place.  I had not been out at all in over a month!!

Hugs,

Connie

Posted 7/9/2006 10:35 PM (GMT 0)
Hi Connie,

The doctor prescribed the generic for Celexa as he thought this was the medication with the fewest side effects. He didn't count on me. I will speak to the Doctor when he returns from vacation.

Yes, dates are wonderful. However Gene is exhausted today.

Barb

Posted 7/9/2006 10:45 PM (GMT 0)
barb,

   dont give up on antidepressents,,,there are so many to choose from and im sure there is one that wont cause the side affects.  I am on paxil for depression but 20 mg is too much for me,it makes me sleep too much,and 10mgs isnt enough,,,,,,i was on 12.5 mg but the pharmacy had billed workmens comp for it and it shouldve been billed to medicaid,,,now medicaid wont pay for the 12.5s because they are paxil CR. the 10 mgs at least helps me stay asleep once i get to sleep. im goin to talk to dr next time i go in about changin to something else.

good luck finding somethin that helps and doesnt hurt ya!!

 

Posted 7/11/2006 12:03 AM (GMT 0)

Hi Everyone, sorry I haven't posted lately, My daughters and granddaughter were visiting most of last week and the house was wild. I did enjoy them but, I am glad we have our home back. Nice and quiet! Mark has not been doing very well either. We just got back from the Dr., today and the Dr. is making arrangements to put Mark in the hospital for about 5 days, he is going to put a cath in Marks abdomin and drain the fluid off of Mark daily, hospitalized. His kidney's just are not working very well and he is trying to see if this will get them functioning more normally. He is just staying full of fluid, his weight is up to 203 lbs., his normal weight would be around 160 lbs. Other than that we are praying for the call to come for a new Liver.

Trish, we were first given a date with a 5 month wait for a hepatologist. Mark was hospitalized, a social worker was talking to me and I told her I had just about had it with the doctors not knowing how to treat Marks disease. I also told her I was not beyond, checking my husband into a hospital E.R., where they had a Liver transplant clinic. Well she went all out and got Mark transported to one via ambulance and with a hepatologist agreeing to take his case. Sometimes you have do or say what you must to get what you need. How did the CT scan go? Rick really does sound like he is having a hard time, I will keep you both in my prayers!

Connie, have you gotten your schedule for your appointments? I know it is going to be another busy month for you! My thoughts and prayers are with you! Please keep us posted!

Ma, so sorry you had a reation to the antidepressant, but sometimes you just need to keep an open mind, there are others out there that may that you can try! Hopefully they will find the one that is right for you! glad to hear Pa is doing better. The dates sound like a wonderful idea! Love you!

Love and Hugs,

Teresa

Posted 7/11/2006 8:30 AM (GMT 0)
Hi Teresa,

Glad you had a nice visit with your daughter and grandaughter. I'm sure the week went by too fast.

I'm sorry Mark is continuing to have problems. Having fluid drained over five days sounds like an unpleasant experience but if it gives him relief, then it's the way to go. I hope they can get Mark's kidney function to improve.

You are in my thoughts and prayers. I hope that call from the transplant team comes soon.

Have you heard from Sista? She's been quiet for awhile and I'm concerned. I know Tony was having gall stone problems. Give her my love.

Love you,

Ma

Trish,

I'm keeping an open mind regarding antidepressants but am beginning to think I'm too sensitive to handle any medication that has to be taken daily. I'll talk with my doctor when he returns from vacation. In the meantime meditation is my medication.

Hugs,

Barb

Posted 7/11/2006 12:18 PM (GMT 0)
ricks catscan came back normal,thankfully!!! but now we gotta find out whats causing the problem,we were told it still may be a neuro problem,but at least its not a tumor or bleeding on the brain. he had the flu last weekend,which normally ppl are over in a couple of days but his lasted 5 or better, due to his low resistance. then i had it again for one day,monday,,,but i threw up some blood,,,,so i am goin to make an appt to go to dr thurs,when rick has his appt. he had an appt friday but was too sick to go to the dr(doesnt make sense huh?) teresa,i feel for ya with waiting on the transplant,,,,,,i will probably be in your shoes some day soon enough..and i remember the waiting for my brothers kidney/pancreas transplant. the call came at 1am in the morning and we had to drive to ohio state for it......what a long night that was but my brother is now doin GREATTTTTTT,,,,,,he is blind and his girlfriend is too but his kidneys function great and hes able to eat normally for the first time since he was 4 yrs old(when he was diagnosed with diabetes) they live alone and take care of themselves for the most part. hes happier then hes ever been in his life,,,,,a story of a real hero with a good ending,,,so keep ya head held high and ya shoulders back and know ya will make it through all this,with hopefully a great outcome:)
barb,,i need to do meditation,,,,maybe it would help me out,,but it seems like there is always something goin on around here. oh btw,,,my son and his gf moved in with us on top of everything else,,,,,shes preggo and they were in a bad living arrangement,,,,so i gave them 2mths to GET OUT lol. told them that by the time school starts again,i want my house back,,,,,,cause its not fair to the 2 i still have living at home to be put out once school is back in. mind you,we only have a 2 bedroom apt,,,,,,we have lots of storage space,,,including a huge attic,,,,,but me and ricks bedroom is in the living room and with 2 extra ppl,we have NO privacy,,,my son walt whos still at home is in Tx with my mom for the next 3 weeks so that helps with the sleepin arrangements some for now,,,,,i thought i would go crazy with them here but so far,they have been a big help to me,,so again,things turn out the way they are supposed to :)
take care everyone
Posted 7/12/2006 6:12 AM (GMT 0)

Hi Everyone, Well Marks doctor called today, and told us his lab results were worse and that he wanted Mark to be admitted to the hospital today! The creatine was much higher, the renal function is pretty bad right now. They have stopped all diuretics, for now. Mark is having blood cultures done to confirm he is infection free, then in the morning he will go to radiology and have a pigtail cath put in via fluoroscope. They are going to pull fluid off of him at intervals with albumin replacement for 5 days. They are hoping that the renal function will come back. I was doing fine earlier, but I am now feeling the after effects from my day of stress. I guess I need to get to bed, so I can handle whatever tomorrow brings. Thanks for listening. Hope everyone is doing okay!

Hugs and Prayers,

Teresa

Posted 7/12/2006 4:34 PM (GMT 0)
Hi Teresa,

I hope you had a good nights rest and feel ready to tackle whatever the day brings. Even superwoman cannot function under continual stress without sleep.

I'm sorry I couldn't speak longer last evening. I had been trying to connect with the hospice on-call social worker for 2 days. I'll be around all day today if you want to talk.

Hugs and prayers,

Ma

Posted 7/12/2006 11:14 PM (GMT 0)

Well, Marks procedure went well today. They took off 5 liters of fluid, so it gave him a little relief. The Renal function is still down. He is in decent spirits. Michael and I are home for the night. I do appreciate the support that all of you give me. Ma thanks for being there for me! Trish hope all is going well for you and Rick, hope the flu bug stays away! Connie hope all is well with you.

Hugs and Prayers,

Teresa

Posted 7/13/2006 6:02 AM (GMT 0)
teresa,im glad the procedure went well for mark,,,,you must be a little relieved,,,,,keeping an upbeat spirit is the key to recovering and healing
ok here goes,i dont have much time on the pc as i am afraid somethin might happen at the hospital and they wont be able to reach me ..............
rick had the most wonderful day yesterday(tues),,,,,,,,he even cooked supper for everyone,,,and was so proud,he wanted to take some to his brother in law who is also his best friend,,,,,,,,he was so back to his normal self,,,laughing,joking,,,,,god how good it was to see ,,,,,,,,i felt my spirits lifting so much as i watched him actually enjoy life again,,,,,,,,,,when we got back from his brother in laws,,,,,,rick was laughing and so happy,,,,,i said man i love this rick,,,,what has brought on the change in attiitude??? he replied,i dont know,its like a dream come true i feel so good,,,,,,,,,,,i hope im not goin to die tomorrow! and he laughed,,,,,,,then went to take a shower...he returned from the shower,,,,,and was all wet,and i thought,,,,why didnt he dry off,then he said trish,i have had two nitro tabs and my chest is still killin me,,,,,,,,,he headed for the bathroom to puke,and told me to get him another one,,,,,,,i helped him up off the floor as he told me,,,,,,call 911,,,,,,i did right away,,squad came fast,,,,,gave him morphine,more nitro,oxygen,and aspirin,,,,,and off to the ER we went,,,,my daughter goin with me in the car,,,,when we got to ER,the nurses were all in the cubicle hookin rick up to monitors n such,,,,so me and brianna just took a seat outside the curtain and waited,,,as soon as the crowd around him died down,i slipped into the room with only one nurse left in there,,,told rick i loved him and he was goin to be ok,,,,,motioned brianna to come in for a sec,,,as soon as she reached the foot of his bed,rick looked at me and said,i need to puke,,the nurse said right there is somethin to puke in,pointing to a very small little thing,,,,,i said noooooooo he needs a trashcan,and turned around to grab it,,,,when i turned around,,,,,ricks arms locked in a weird position,his eyes rolled back in his head,and he coded,,,,,,,,,,gone,,,,,,,,my daughter turned to get out,,,,i screamed,,,,GET IN HERE NOWWWWW,,,,,,,,,RIGHT NOW MOVE MOVE MOVE,,,,,as i got out of the way of incoming help,,,,,,they called in heart dr and went in to see what was goin on with his heart,,,,,his stent collapsed that he had put in just a couple weeks ago,not clogged,COLLAPSED,,,,,,,,,,,,they put another one in to try to open up the artery temporarily,,,,,and cracked the artery,,,he is goin to have to have open heart surgery now,but his blood levels are so bad,,,,,,,very low platelets,.,,,,,,,,that they have to wait 4 or 5 days to do it,,,,,,,so hes in intensive care til they can do it,,,,,,i was told later he wouldnt have made it through by pass last night,if they couldnt have got the stent in temporarily,,,,,i wandered the halls of the hospital last night,,,,watchin ppl in the ER,,,,,,and then would shoot back up to listen to rick breathe at his bedside,,,,,,,,,i didnt sleep at all,and did alot of thinkin,,,,,worryin about how to take care of him when he gets home,and what if he doesnt come home,,,,,,please yall,,,,,,take hold of ya spouses and hug them so tight,,tell ya kids how much you love them and appreciate them,,,,,,i am so scared,,,,,,,i have never in my life felt so helpless,then when i looked at his face and the life had gone out of him,i am haunted by that look every time i shut my eyes,,,,sorry to lay all this on yall but i cant let this out with my kids and i feel like im goin crazy,,,,,,,,,gotta go in case any calls from hospital,,,please take care of yourselves and your families,,love each other like theres no tomorrow,,,,cause there might not be,,,,keep us in your prayers and ill check back in when i can,,,,,,:hugs:
Posted 7/13/2006 5:29 PM (GMT 0)
Oh Dear Trish,

I am at a loss for words. It is in God's hands now. What a bittersweet post. That Rick had his best day and was his old sself before this happened is a tribute to how God works and how we do know what lies ahead. Whatever the outcome; you have the treasured moments; a precious gift.

And yes, we must live every moment as though there will not be a next. Sometimes I get wrapped up in frustration and fear and lose track of this.

Know we are there with you and for you and Rick. Reach out and feel the love surrounding you.

Hugs,

Barb

Posted 7/14/2006 2:56 AM (GMT 0)
 

Hello Trish!

 

I am so sorry to hear of the bad news about Rick!! I want you to know you are in my thoughts and prayers!!

We are all here for you! Please know that we care about you and your family!!

 

Hugs with Love!

Posted 7/14/2006 3:04 AM (GMT 0)
Hello Everyone,

 

Tony has been having trouble with his gallbladder. They checked him and his stones are not in his bile duc. They are in the neck of the gallbladder. So no need to worry. They said that his plalete count has gotten worse and his liver enzymes are worse! He has been getting sick to his stomach and going # 2 alot.

 

He has been awarded SS, It took only 4 months month for them to decide. He will receive his first check in September. Why the four month waiting period I don't know. He will have to wait 2 years for medicare to kick in. Why I don't know that one either. It just doesn't make sense to me. My Cigna runs out in Sept 30th. So we are checking around for the best possible Inc. We are between a rock and a hard place. But I believe and have enough faith in the Good Lord that he will work it out!

 

I am working alot and even gonna work some more here in about 2 weeks.

I think about you folks often and also I pray for you as well!!

I don't get on the pc much. I have been having so much trouble since my job change with my back. I have the ddd, djd, buldging disk and osteoarthritus. I know that is a minor thing compared to some but I have to have help with it and when I get off of work and come home. All I wanna do is rest on a heating pad!

 

Special Hugs with Love to All!!!

 

Posted 7/14/2006 9:42 PM (GMT 0)
Trish, message for you in the prayer thread.

My hip dislocated Mon. night while I was sleeping. This was the 4th time since Sept. (I have bilateral hip replacements for those who don't know, and a revision of the left one, which keeps dislocating.) I went to the ER and they admitted me, and took me to OR for reduction at 12:30 AM. They kept me overnight. I got home Tues. afternoon and Tues. night the same thing happened again. Repeat of Mon. night, except that this time I had an MRI of chest and abdomen (was to have been done Thurs., anyway, to find out how much cancer is left in liver.) Also had 4 x-rays, 2 rounds of blood work, etc., etc. I was worn out, as I had really not had more than 5 hours' sleep since Mon. night. I was in terrible hip pain in the MRI machine, and later found out that the hip was not completely back in the socket. Also learned that I really have no socket left. That is gone, and so is most of the pelvis on that side. Ortho hip specialist said I would need a cage and bone procedure, but there is only 50/50 chance it will work. If it doesn't, he will have to remove my left pelvis completely. Said I would still be able to walk with a walker. Obviously, I will have to try to have it fixed first. Major, major surgery with lots of PT and long recovery. That hip will never be "right." Anyway, I am forgoing further treatment for my hep C or liver cancer right now. The interventional radiologist said I'd had a remarkably positive response to treatment. Now all my energy will go towards becoming mobile. I still have Hep C and will continue to visit this forum, though maybe not to post as much. Thank you for being here for me, and I hope my experience and words have helped some of you.

Connie
Posted 7/14/2006 11:40 PM (GMT 0)
Bless you Connie,

You are in my thoughts and prayers as you go through your surgery and therapy. Mobility is very important. I'm glad you have had positive results with treatment and can put the hep B and cancer on the back burner.

Hugs,

Barb

Posted 7/15/2006 4:18 AM (GMT 0)
Thank you, Barb. Just to be accurate, it's Hep C that I have. ;)

Hugs,
C.
Posted 7/16/2006 2:47 AM (GMT 0)
connie,i just had time to read ya post,and im so sorry to hear ,,,,i hope ya find some good ppl to help ya when your rehabilitating,,,,and pray you will have great results
Posted 7/16/2006 6:36 AM (GMT 0)

Thank you, Trish.  Get some rest and keep us posted on Rick.

God bless,

Connie

Posted 7/18/2006 6:46 AM (GMT 0)
Hello all,

Glad to catch up with everyone - thinking of all of you and sending you good thoughts:)

It is quiet for me - my Dad is pretty stable - lots of bumps in the road comming up so I'm just tightening my seatbelt and pray we get through it. He seems to have the sundown effect going on - great in the a.m. and by the evening he is forgetting and not making sense - his legs are swelling on and off but no need to visit the Dr. Just trying not to worry and enjoy the summer.

Praying that everyone has a great day tomorrow:)

Patty
Posted 7/18/2006 4:13 PM (GMT 0)
I had a call from the interventional radiology nurse yesterday, regarding my MRI. She said that the cancer is mostly dead (praise God!) However, the doc is still
wanting me to have the right lobe of the liver removed, and wants me to meet
with the surgeon. I told the nurse that I am happy with my results thus far, even if
it just bought me some time, but that I am not going to have that surgery now (maybe never) as I have to focus on my hip and getting that surgery done ASAP.
She said my blood work was fine. I forgot to ask specifically about the liver
panel or alfa fetoprotein.

I'll post when I know more.

Hugs,
Connie
Posted 7/19/2006 1:02 AM (GMT 0)

Hi all, Mark was discharged from the hospital yesterday afternoon. His renal function is a little better. His weight is down considerably. They took the pigtail cath out from his abdomin a few hours before discharge and had trouble with fluid just pouring out of the cath site. They sent him home with supplies for dressing it, they say it could leak for awhile. (sigh) I have dressed it a few times already. He see's the hep doc next Monday.

Connie, sorry to hear about your hip problems! I know it is a very hard decision to make! Both are serious problems! My prayers continue for you.

Dona, hope you some relieve with the back and Tony' gallbladder straighten's out some.

Patty, sorry to hear about the Sundowner's.

Love, hugs and prayer's,

Teresa

Posted 7/20/2006 4:33 AM (GMT 0)
Teresa, glad to hear that Mark was discharged. Here's hoping he continues to improve.

Hugs,
Connie
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