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Posted 3/1/2009 10:23 PM (GMT 0)

Penney

What a story.  You have been through so much.  I am watching Jerry's kidneys really close.  Also his GI Dr.  We now take blood work every two weeks.  He has also starting taking shots to increase red blood cells.  He was getting transfusions every two weeks.  That was another nightmare.  He had to have three iron treaments before they could start the shots. 

I'm trying hard to have your outlook.  I take care of all the bills (encluding medical)  I pretty much take care of EVERYTHING. Except for the business.  Jerry does go to work evey day.  We took a recliner from home and had it put in his office so he could sleep.  His secy is really helpful.  He usually doesn't even make it to the recliner.  He just falls a sleep at his desk.  Makes it hard to manage a business when your as sick as he is.  He really tries thought.  Especially when the economy is so horrible.  We were right in the middle of building another home when Jerry got really sick.  I did most of it by computer from a hospital room.  Its amazing what a person can do when they have to.  It didn't get built the way we wanted but I could have cared less.  Its just a house. 

This MELD score thing is just amazing.  I speak to someone every few weeks from NY.  Her MELD score is 23.  She lives alone.  I feel so bad for her.  She has had breast cancer and has Heb C dut to a blood transfusion from a tubal pregnancy.  Can you immagine.  And to top all that off she had a live transplant 5 yrs ago.  She went in to rejection 2 weeks after that transfusion.  She gives me so much strength.  There are stories like that everywhere.  What a family I have met through all of this.  Keep in touch.

JoAnn

Posted 3/1/2009 11:13 PM (GMT 0)

JoAnn,

Just remind yourself that God doesn't put more on us than we can handle and that which does not kill us makes us stronger.  There is always someone out there worse off than ourselves. 

I take it Jerry has his own business.  It's a struggle to keep a business afloat these days much less without a serious medical condition.  He must be pretty tough.  I already know you are tough, whether or not you are willing to admit it.  tongue

I'm so sorry your friend is by herself and dealing with ESLD.  Sounds like she has been through many, many disappointments in her life.  But no matter how bad it gets, we should always seek out and be thankful for our blessings. 

There are no guarantees in this fight.  But know that we are behind you all the way!

Love ya,

Penny

Posted 3/2/2009 12:12 AM (GMT 0)

Thank you Penney

I'm in the middle of one of my minnie meld down but will be fine.  I sure would feel better if I knew that John was OK. Please keep all that good news coming.

Jo Ann

Posted 3/2/2009 12:53 AM (GMT 0)
Jo Ann

I'm not sure what to say, but just hang in there, girl. Melt downs are probably as necessary in all of this as keeping our sense of humor.

Joan
Posted 3/6/2009 10:56 AM (GMT 0)

Hello all.

 

Harvey drove the car this week for the first time in nearly a year and it really made him feel good.  

 

We visited the transplant clinic yesterday and were told his enzymes are near perfect.  No change in meds.  He is up to 148 lbs and his color looks great.  They don't want to adjust his blood pressure meds just yet.  His blood pressure improves when he is up and about.  They want to give him a little more time to adjust to the medication.  The doctor wants him to have his blood work done in the lab every week, but not to come back to the clinic for 2 weeks. 

 

We stopped in to visit the nurses on the 7th floor.  Harvey didn’t think they would remember him.  I told him not to worry about that (we were there for weeks).  From the moment we got off the elevator, he was treated like a celebrity.  He didn’t realize how involved the nurses were in our fight to get him a liver. They were pushing the doctors to help him as often as I was.  Everyone, from the nurses to the cleaning crews, rallied around him and we had a great visit.  They were so impressed with his recovery.  He was just eating it up.  I noticed a little more pep in his step on the way back to the parking garage.  tongue  

 

While in the hospital, they discovered a nodule on his thyroid.  He has an appointment next Wednesday with a specialist to follow-up on that.  He has an outstanding appointment with his cardiologist next Friday.  Then he goes to see the neurologist on the 24th to follow-up on his head injury from last October.

 

I’ve gotta get ready to go to work.  Take care.  I’ll touch base with you soon.

 

God bless you.

 

Penny

Posted 3/6/2009 7:19 PM (GMT 0)
Penny,

There are GOOD people everywhere, I believe! Loved the story of the hospital visit. We probably don't know how much we affect others, but we do. From your posts, I know I would have been rooting for you guys too!

Joan
Posted 3/7/2009 12:21 AM (GMT 0)

Penny you had tears rolling down my eyes from your last post.   Tears of joy.  

Thoughts and prayers..........

Posted 3/7/2009 2:59 AM (GMT 0)

Penny

I am so glad to keep hearing your good news.  It is amazing how the hospital staff on the transplant floors are just like a second family to you, they were so good to us, on the floor and in the ICU.  We would go up when we had appointments and or just see them in the lobby somewhere and they had hugs and just treated us like family.(We were there quite a bit)  I'll never forget when Jerry was on lifesupport and my family and I don't even know who was all in the waiting room and one of our favorite nurses , who checked on us all the time, came by and before she left my son and her was sing Rodney Carrington songs, I knew we were in trouble then.  They were the greatest team on that floor.  Keep up the good work and the good news.

Helen

Posted 3/8/2009 2:24 AM (GMT 0)

Penny

I bet Harvey felt so good to be able to drive.  We had our visit to Vanderbilt.  I lost Jerry in the hospital for 3 hrs  Now I really know his mental status isn't good.  The day after we got home he almost fell over just walking through the kitchen.  I had signed up to get his blood results on line so I went to the computer immediately.  His creatinine is 1.57 so I knew is was getting dehydrated.  His new MELD is 14.  More interesting is his Sodium is 129.  It was either that or the dehydration that caused him to be tipsy.  Vanderbilt called and told me if his sodium remains under 130 for two weeks his MELD will automatically go to a 22!  I am adjusting his diuretics depending on how he acts.  I can tell when he is getting dehydrated.  I had to take him off the Bumex for two days.  He is now starting to perk up.  He had sodium problems last year a lot that is one of the reasons he was in the hospital so much.  So I guess just wait and see.  I hope he doesn't have to go back to the hospital because they just hydrate him and send him home.  His MELD goes down and we strat all over again.  Now that I'm positive he is not mentally good I'm trying to micro manage the business.  Its amazing what a person can do when they have to.  I've also managed to catch a bug so I'm got to lay around for a day and feed Jerry milk shakes.  They say he needs some calories.  I hope you are resting also.

JoAnn

Posted 3/11/2009 10:47 PM (GMT 0)

 

Thanks so much everyone. 

 

We visited the Endocrinologist today regarding Harvey’s nodule (solid mass) on his thyroid gland (in the throat).  It is 1.7 cm in diameter.  The doctor wants to do a fine needle biopsy to rule out cancer.  We have this scheduled for Thursday, March 26th.   I’m not too concerned about this.  95% of nodules on the thyroid are benign.  The doctor said it is a good thing he is not taking any steroids.  This could complicate the thyroid nodule.

 

Harvey continues to walk daily and is gaining a little weight (he’s up to 149 lbs).  He is only putting on about 1 lb a week, but I’m sure he is better off putting the weight on slowly.  He continues to check his blood glucose and has never gone over 150.  So far, he hasn’t had to take any insulin since he’s been home.  turn  

 

His blood pressure is so erratic (this is from the ProGraf.  In the morning it is high and in the middle of the day it is low, then in the evening it is high again.  I hope he will adjust to the meds soon. Otherwise, he is doing very well.  His wound is very shallow now but I must continue to pack it until it is closed.  So far, he has no infections, just side effects from the medications.

 

He does lab work tomorrow and goes to his cardiologist on Friday.  This should be a fun visit.  The cardiologist is quite a character and is always surprised to see Harvey.  He expected him to die from the liver disease a long time ago.  We don’t find this offensive because we know he is being sincere and tried to support Harvey while we were visiting Shand’s.  He’s been fighting right along with us.  It was his cardiac group that approved Harvey for the transplant at FL Hospital.  I can’t wait to see the look on his face when he sees Harvey now.   tongue  

 

That’s all for now.  Gotta get back to work-related issues.  I have a long way to go in catching up on everything.

 

Love ya,

 

Penny

Posted 3/12/2009 2:32 AM (GMT 0)

Penny, I used to do a lot of endocrinology transcription and you are right--most thyroid nodules are benign. 

You'll have to tell us what the cardiologist's response to Harvey is on Friday!  smilewinkgrin    I ran into the radiology oncologist one day at Mayo and he was so happily surprised to see me looking well.  He had done my chemoembolization and the TheraSphere treatment on me to shrink the liver cancer prior to the surgery.  I know it must be gratifying to the docs to see success stories, particularly if they had a small part in them. 

Posted 3/13/2009 9:49 PM (GMT 0)

Hello all,

 

I hope this finds you well.  Harvey and I saw the cardiologist this morning.  It was quite comical.  He didn’t realize Harvey had a transplant because the last time he saw him he weighed 166 lbs.  Today, he weighs 150 lbs.  He said hello to Harvey then sat down at his PC as he always does expecting to get the low-down from me (Harvey was always so confused).  He was reading over his notes (out loud) that he had from last year.  He said, “Shand’s turned you down for a transplant, that’s a darn shame.  Where are we now with this?”   shakehead  

 

He looked up at me and saw me grinning from ear to ear.  He said, “Wait a minute, you look happy.  What’s going on?”  I told him Harvey had the transplant on January 21st!  He couldn’t contain himself.  He nearly knocked his chair over when he jumped up and turned to give Harvey a bear hug!  He congratulated Harvey and told him that I deserve a metal!  He really appreciates the caregivers.  He did quite a happy dance for us!

  yeah  

 

He said, “You know, I should have realized you got a transplant because you didn’t look like a walking carrot!”  

turn  

 

Penny

Posted 3/13/2009 10:39 PM (GMT 0)
What a great reaction from the doc, Penny!  :-)
Posted 3/14/2009 1:13 AM (GMT 0)

 

More good news!

 

We saw the Neurologist as well (they had a cancellation and squeezed us in).  He reviewed Harvey’s CT scan then examined him.  He determined precisely where the numbness and tingling originates.  He determined that this was the result of a nerve in the face that was healing since the fractures around his orbital socket.  He showed us a graphic of the nerve and we are convinced he hit the nail on the head.  No need for a follow-up visit with him unless the sensation becomes more unusual or painful. 

 

It’s been a busy day.  I started off at work for a brief meeting with my team, then off to the cardiologist.  Then off to the neurologist.  Then back to work.  Then to the pharmacy only to find out they only had a few ProGraf in stock, then to another Walgreens to pick it up the rest then . . . .  shocked   

 

Our Grandson is here with us and we are loving every minute of it. smilewinkgrin   He makes everything worthwhile.

 

Penny

Posted 3/14/2009 1:50 AM (GMT 0)

Penney

Isn't life wonderful.  You packed it all in in ONE day.  It feels so good doesn't it when ALL the news is good.  Its about time you had this GOOD stuff come your way.  And man that Grand son just made your good day better. 

JoAnn

Posted 3/14/2009 3:48 AM (GMT 0)
Penny,

I haven't been on in ages, too much going on, but I am sooo happy your husband got a liver! Congratulations! I am really sorry about your brother-in-law. Hope your sister is doing ok. Something similar has happened to us but in our case, it was my father-in-law dying and my husband's health declining. I feel so happy for you and your family. Thanks for posting and keeping us up-to-date!
Posted 3/14/2009 1:26 PM (GMT 0)

 

Thank you JoAnn.  I can only wish everyone the same joy. 

 

And Jen, I posted back to you under your topic and hope you feel my sincerity.  I think about you and everyone else on this forum more than anyone knows.

 

May God bless you and keep you all.

 

Penny

Posted 3/16/2009 3:45 AM (GMT 0)

 

Good night all.

 

We just returned from the Cape.  We took my sister-in-law over to watch the space shuttle launch.  It was great, but it took us hours to get home. 

 

Hope all is well with you.

 

Penny

 

Posted 3/19/2009 11:27 PM (GMT 0)

Hello everyone,

 

Hope you are hanging in there.  We had an uneventful visit at the transplant center today.  However, we got a call this evening to change multiple meds.  Harvey’s white blood cell count has dropped and they want him to start taking Neupogen shots.  Of course, they called it in to Walgreens who does not have it in stock.  I can’t get my hands on it until noon tomorrow.  They also reduced his ProGraf.  They advised him not to take it tonight or in the morning.  Until further notice, they only want him to take 2mg twice a day.  The Myfortic was reduced in half and he needs to take Endocort 3 times daily.  His ursodiol was reduced from three 300mg capsules a day down to once a day.

 

The also advised him to resume wearing his mask in public.  Two weeks ago, they told him he could stop wearing it.  Oh well, three steps forward and two steps back.  I’m keeping a watchful eye on him for any signs of active infection.

 

Take care of yourselves.  I’ll check in when I can.

 

Penny

Posted 3/27/2009 2:01 AM (GMT 0)

Hello everyone,

 

Harvey had his thyroid biopsy today.  It was uncomfortable for him, but he is fine.  He had his labs done this morning and the transplant team called to ensure he takes his Neupogen shot tonight (once a week).  I guess his white blood cell count is still down.  Harvey spoke with them while I was at work.  No changes in his meds.

 

Harvey is not feeling too well.  He may have strained himself yesterday trying to dig a tent and inflatable mattress out of the motorhome for my daughter.  He has been having pain on his right side.  Still no temperature and no signs of infection, so I'm just remaining vigilant at this time.

 

I hope all is well with you.  It seems like I'm talking to myself lately. 

 

Take care,

 

Penny

Posted 3/27/2009 6:37 AM (GMT 0)

Hi, Penny!  I'm here.  I hope that Harvey didn't hurt himself.  You know, it takes a lot longer to heal on the inside than it does on the outside.  He needs to be careful.  Of course, I'm sure you've told him that.

Why did he have a thyroid biopsy?  Nodules on his thyroid?

JoAnn, how are YOU doing?


Posted 3/28/2009 2:12 AM (GMT 0)
Oh, Penny!! Poor Harvey! Sounds like he is just anxious to do things for himself and probably though nothing about trying to do something that in his mind seems "simple".....but, on the other hand, that's a good sign that he's wanting to try. What a balance!

I am praying for his white counts to go back up. How is he handling the Neupogen shots?? Hope the biopsy results come back clear!

Hang in there, and have a great visit with your daughter!

Mer
Posted 4/5/2009 5:14 PM (GMT 0)

 

Hello everyone,

 

I hope this finds you well.  The neupogen shots have been suspended.  His white blood cell count is 3.3.  We don’t have the results back from the thyroid biopsy yet (Harvey had a 1.7 cm nodule on the right side of his thyroid).  We have an appointment on April 16th to learn whether or not it is benign. 

 

We saw the transplant team on Thursday.  Harvey has a small hernia.  They did an abdominal CT scan as well as a pelvic CT scan.  It will be Monday before they have any results from the scans.  He’s been in pain for the last 10 days, but he is starting to feel somewhat better.  Hopefully he won’t require surgery for the hernia.

 

He’s lost his appetite and also 6 pounds.  Getting him to eat is a real chore.  But this too seems to be improving with time.

 

That’s all for now.  You are in my heart and in my prayers.

 

Penny

 

Posted 4/6/2009 2:55 AM (GMT 0)

Pscwife,

Just read ALL your posts.  What a journey its been for you (and your hubby) God bless you both.  It made me happy and sad at the same time.  My dad has liver cancer and they say he's too old for a transplant (72), he also has other medical conditions that interfere, so they say.  He's had the chemo and radiation (neither did the trick) and now it's in God's hands.  He lives in another state so sometimes I feel so helpless, I'd like to move to Florida just to make him see more doctors but he wants to leave it in God's hands, I want to scream...

Posted 4/6/2009 3:20 AM (GMT 0)

Hi, Cat, and welcome to the forum.  I am so sorry your dad has liver cancer.  I am a survivor myself...nearly 2 yrs. now since my surgery.  I just turned 66.  Aside from hep C (which caused the cancer), I didn't have any other medical  problems.  Now I'm starting to have a few, but nothing serious yet.

I'm in FL myself and go to Mayo.  Where is your dad being treated?  I know you will find a lot of support here.  Would you mind starting a new topic to introduce yourself and your situation?  (Just click on New Topic instead of Reply.)  That way people are less likely to miss your post.

Penny, prayers for a good biopsy report.

Hugs,

Connie


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