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Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/21/2007 9:01 PM (GMT -7)   
Everyone I thought that I would start a new thread so that everyone can check in with an update on how they or their loved one is doing. I'll go first.
As everyone knows my husband past away last April of Liver Cancer due to Hep C and cirrohsis. I have really had and uphill struggle with it. But the good news is that I am near the top of the hill. So pretty soon it will be a downhill struggle which will be a heck of a lot easier to get through. And alot of it has to do with all of you. So please accept my sincere thanks for all the "healingwell" help that you have given to me. I am healing well. Good name for this forum huh? Now it's someone else's turn. Thoughts and prayers to all.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 10/22/2007 7:03 AM (GMT -7)   

 

Pink Grandma,

I am happy to hear that you are starting to see a light at the end of the tunnel.  You have had a very hard time and still have been so supportive to everyone else.  My update is as you probably know I was diagnosed with AIH over a year ago.  I am doing fine my liver levels have been normal now for over 4 months and I am still on the 20mg of prednisone.  I will be having another liver biopsy the first week of December and if the inflammmation is gone they will begin to slowly wean me off the prednisone.  Hopefully, it will be successful and I can get off this awful medicine.  for anyone who is interested during the liver biopsy I was given Benzodiazepine and felt no pain or remember nothing it only lasts a few minutes and no drug hangover and you are awake.  My doctor also instructed the hospital to give me this drug during this biopsy.  It is also given by another name called Midazolam but believe me it is great no pain or discomfort at all.

Jerry1  


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/22/2007 4:35 PM (GMT -7)   
Pink Grandma, I am glad to hear that things are getting easier for you. You have been a lot of help to me since I started coming here. I think of you often and hope that you are spending a lot of time with those grandkids. I will be seeing my grandson more often. My son will being coming over on Tuesdays and Thursdays while his fiance is at college. I am very much looking forward to it. My husband says hello. He came in while I was typing this post and asked who you were. He has been doing better for the past couple weeks. My prayers are with you also.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/22/2007 11:01 PM (GMT -7)   
Hi, Pink Grandma! Thanks for being so uplifting and offering support and info to those who need it.

I was just going to start an UPDATE thread, but will do it here. I went through blood work, a PET scan with IV contrast, and a CT with oral and IV contrast last week. I saw the surgery P.A. today and THERE IS NO CANCER SHOWN anywhere. (For those here who are new, I developed inoperable liver cancer due to hep C, but received cancer treatment to shrink the tumor; then had the rt. lobe of liver excised. Two months later, I developed a hiatal hernia.) The surgeon is out of town this week, so I couldn't find out about the hernia repair, but the P.A. said she would discuss with him on Mon. and for me to call her on Tues. However, she did say that he is booked up for surgery until December. In which case, I may as well wait until Jan. As far as the hep C treatment, they all think I should do that before hernia repair. I disagree, as the treatment will go on for about a year if I'm responding. The hernia is giving me all kinds of problems, aside from being very unattractive. Recovery from hernia repair should only be a few months. My blood work was good, including the liver panel. Liver enzymes were elevated, but not much.

Considering that I was initially given a death sentence, it's a miracle that I'm still here. My advice to those here with liver disease, would be to seek out the very best medical care available to you--and stop doing anything that is bad for your liver.

God bless,
Connie

Shel
Regular Member


Date Joined Apr 2006
Total Posts : 122
   Posted 10/23/2007 8:08 AM (GMT -7)   
Hello Pink Grandma, I'm glad to know that things are getting better for you each day. I don't have a chance to come to the forum as often I would like to, but thank you for your kind words and keeping up with everyone while you are going through some tuff times yourself. Things will continue to get better.

Since I posted an update about a week ago, Robert still continues to do well. He continues to have swelling in his feet and feel a little run down, but other than that, he's doing great. He'll be headed to his docs at the Mayo Clinic for his 6 month testing and screenings in early November, so we hope all goes well with that. He continues to remain on the transplant list. So we just wait and see what happens. We take each day as it comes and continue to have faith in god.

Connie, Since I've joined the forum, I know you have had your share of ups and downs with your illness. Continue to remain strong and keep you faith, things will work out for you. Take care and you'll be in my thoughts and prayers.

Butterflythree, I'm glad your husband is doing better, be strong and keep the faith.

Jerry1, I'm glad to know about the medication for the biopsy. Should my husband, I will ask the doc about the medication you mentioned, thanks for sharing. I'm glad you're doing well and things have been normal for you. Take care of yourself and be strong.
*Hugs, Thoughts, and Prayers*
   *Shel in New Mexico, USA*
 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/23/2007 7:13 PM (GMT -7)   
Connie, I am so glad to hear that you came back cancer free. I have been thinking about you and wondering if you got the results of the tests. I think you must have a guardian angel watching over you. I will pray that you have the hernia surgery soon, for a quick recovery, and that the hep C treatment works for you. You are diffinently a very strong person. I am so glad to have met you here.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/23/2007 9:21 PM (GMT -7)   

Shel and Butterfly, thank you for your kind words.  I have to laugh when people say I'm strong.  I don't feel that way...I just do what I need to do.  I'm a tough ole broad, and a stubborn one, too.  I do have a lot of faith in God.  I have lived several lifetimes...all the stuff I've been through in my life.  I always come through okay.  God has brought me too far to drop me now.  I still have work to do in this life.   ;)

Bless you all,

Connie


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/24/2007 3:35 PM (GMT -7)   
Hello All, I have no clue, how each and everyone one of you do it? My son is the sick one and I feel run down already, and were just getting started on this ride! I have finally got these hospitals to start sending me all the medical reports!(At which I was told could only be obtained by Dr's. request.) Once I told the story about my son and everything they are happy to help! Nov. 1st we have to go back to SSI and refile. So far are apt. is still Dec.7th at Shands for ultrasound. I also had a customer come into my shop and her husband works for Hospice, she told me that if I submit my son's records to Hospice and tell them Dr's. are saying he needs a transplant Hospice will automatically get him approved for SSI and get him on a transplant list right away, something about Hospice has changed their policies! So guess I'll have the phone growing out of my other ear tomarrow to find out.I will let everyone know how that turns out! Will is doing fine! He say's I worry enough for all of us so he doesn't have to! He's been doing his research too and he is scared! Mostly of the unknown! He's a fighter and we both know he'll pull threw this one too! Okay All I will update more often if I can ! You are all in our prayers and thoughts daily! Thank you for letting me share my wooooooos!!!
LOVES,HUGGS AND SMOOCHES!!!
TONI eyes

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/24/2007 3:43 PM (GMT -7)   
Connie, Yes you still have work to do! I need someone to listen to my whining. You wouldn't believe how much it helps knowing you are here.

Toni, Hang in there. I know how you feel. I also feel run down at times. I will pray that Will gets approved for SSI and gets his transplant.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/24/2007 11:13 PM (GMT -7)   
Thanks, Butterfly. (When my daughter was a toddler, she called them flutterbys! LOL) It helps me to be here. Not a lot of people know about my hep C. They just know I had liver cancer. My reason for not disclosing my hep C status is that the next question is "How did you get it?" I got it through shared needles in the 60s, when I did IV drugs for 18 mos. I have lied a couple of times and said I don't know how I got it. I didn't feel comfortable lying like that, so I just don't disclose the hep C most of the time. It's difficult now to imagine going through all that I have without anyone at all to talk to who truly understands. So bless you all for being here.

Hugs,
Connie

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/25/2007 4:16 AM (GMT -7)   
Hi everyone

Pink Grandma , glad that you are seeing the other side of the hill now you deserve this time for you. I also want to thank you for takin over te monitoring of the forum. I can't think of anyone better to do have filled the job.

Connie, You certqinly are a strong woman that is winning an amazing race. I personally understand why you would not want to share your diagnosis with just anyone. The "heoatitis" word in general scares people. Just keep being yourself. I think sometimes that is the purpose.

moms will, Your son sounds like such a wonderful man, with a great sense of humor. That will certainly help all of you on the road you have started. Good luck with getting his SSI hopefully there won't be any complications.

Jerry Butterfly and Shel, glad thing are doing better in all your homes.

As for me the last several months have been much better health wise( at least feeling better and more "normal") than I have in the past several years. I had my first normal liver levels last June. Am hopeful when I go to the doc next week that these last ones were too. Work continues to be a stressor, but at this time in my life I can do nothing to change much of htat. My oldest son who is twenty is attending college and finally declared a major -biomedical! Maybe he will find a cure for this horrid disease.

My thoughts and prayers will continue to be will each of you.


Lucy

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/25/2007 9:37 AM (GMT -7)   

Connie,  I was reading where you said Dr's. told you, you had Mono or Hep.! My ? is what role does "Mono" play and is that a sign as My 17yr.old daughter was sick last week with Mono and severe kidney infection! Should I be concerned with her having Hep also? The whole family has been checked and vaccinated But, what is the chance I have 2 children with this disease? Oh, please tell me I am now overreacting!!!!

Toni


Ranger
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/25/2007 2:51 PM (GMT -7)   
Hello everyone, I have been reading the forum from time to time to learn what I can from you who have been here and through so much. I am glad that many of you are doing well. I went to the transplant center Friday and was told that I was one of only two in the state with B blood type and to keep my bag packed. I have been listed since the 2nd of Oct. and am really pretty scared, but also excited that there is something that can be done. I have told my wife about this site so she will have somewhere to come when she has questions. We are really just starting the journey, and I am very lucky to have her to be with me at this time. I feel like I can't do enough for her now before things get harder for her. I guess I can be paying forward now for a little of what she will be doing for me later. Glad ya'll are here, thanks for listening. I will continue to read and learn as much as possible, and keep everyone of you in my prayers. Later, Ranger
   Ranger


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/25/2007 4:29 PM (GMT -7)   
Connie, I understand what you mean about not liking to explain the hep C. My husband did not like people to know either. He is the youngest out of five brothers and three sisters. They all shared needles when he was pretty young. They also had tatoo parties and shared the same needle. He usually tells people that he got it from the tatoo parties. Four out of the five brothers and one out of the three sisters have hep C. One oldest brother passed away a few years ago from cirrhosis. Another suffers from advanced cirrhosis now. The brother closest to my husbands age keeps putting off getting his biopsy. I keep telling him he needs to have it done. My father-in-law passed away from liver cancer in his early 60's. They found it too late to help. I also had an uncle pass away from cirrhosis caused from alcoholism when he was 36 years old. Still I had no idea of all the things hep C and cirrhosis can do.

Lucy, I am glad you have been feeling better. I will pray that your last labs come back ok. That is a great major your son has chosen.

Toni, Mono and hepatitis both attack the liver. My sister just had mono a couple months ago. I hope your son is doing well.

Ranger, You are lucky to have such a supportive wife, and it sounds like you let her know that she is appreciated.

You are all in my prayers.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/25/2007 8:01 PM (GMT -7)   
Hello everyone, I know that what each of you are going through is about one of the hardest things that most people will ever go through. I just want you all to know how great you all are. Any of the diseases that affect the liver are about as yucky as it gets. If you have the disease please take care of yourself and follow the doctors orders. If you are a caregiver don't forget to take care of your self too. The whole journey of these diseases as each of you know is long and extremely hard but if we all stick together we can make it a little easier to bear. That's what this site is all about people helping people. If we have any lurkers out there please join us. Just take that first step and post. I myself lurked for a few weeks first. I was scared. Don't know why but I was. It's not just all the information that is being passed back and forth but it's the comradery also. Everyone has been there and done that so we understand. Hope everyone is doing well. My thoughts and prayers are with all of you great people.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/25/2007 8:49 PM (GMT -7)   
Pink Grandma, I hope you are taking care of yourself as well. You are in my thoughts and prayers.
Butterflythree


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/26/2007 7:28 AM (GMT -7)   
Well, Toni, Butterfly has answered your question correctly. My symptoms at the time of fatigue and elevated liver enzymes could have been mono, but the test showed it was hep C. I also had contracted hep B, but I had the antibodies for that...meaning that my immune system had knocked it out, and I cannot get it again or pass it on to anyone.

Ranger, welcome to the forum!

Connie
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