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Posted 6/6/2006 5:36 AM (GMT 0)
My husband is genotype 1 hep c.  He had a TIPS procedure done on April 11th (liver shunt) and upon hearing he was ok, my mom passed away 12 hours later.  I feel like my world is falling apart.  Then a month after that, my step daughter takes her infant daughter who has lived with us for 9 months and leaves to live in Kentucky without any proper good-bye.  My husband seems to be going downhill fast.  His treatments are due to start at most anytime.  Will life get harder or better?  I am an emotional wreck.  I had a complete breakdown 2 years ago and have recently recovered from being in a wheel chair myself.  I can finally walk and do things but its such a chore to do simple things.  I feel like I'll never pull out of this depression.  I've applied for SSDI and can't get an answer.  My doctors say my husband's treatments may make me even more depressed.  What do I do?
Posted 6/6/2006 7:10 AM (GMT 0)
Just take it one day at a time. You have certainly had your share of bad luck (and someone else's perhaps). You have to look after yourself first, so you can be there for others who need you.
I wouldn't think things can get any worse - but who knows.
Good luck. Take care
Marg.
Posted 6/6/2006 9:10 PM (GMT 0)
pm,
Im sorry to hear about all the trouble,,,,,,one suggestion I have is to contact your representative,,,they have a person in their office who does nothing but help ppl get their social security,,,so far they have been very helpful to us,and Ive heard others say they helped them too. I must say,the treatments are tough for some ppl,,,,,,my hubby is on interferon for hep b,,,,we find out in a lil over a week if its worked for him,though it cant be cured like hep c can,,,only minimized or put into remission-like state,,,I do know that life can give us all a heavy burden to carry,but also that just when ya think ya dont have any strength left,,,,that you must give up,,,,,somehow,you manage to find just a lil bit more strength,,and you keep pushing,,,,,,and you keep lookin for the good things about your life,,no matter how small they may seem,,,,and before you know it,,,,you reach a turn around,,i call it,,,where life turns around,and goes the other direction,,,,,becomes better again,,,,,and when that happens,,,,the bad times make the good times even better,so hang in there,,,,you DO have the strength to make it through this,,,and so does your hubby,,,,,,every time you think you cant do it,,,remember all the ppl who have no one,all the ppl who have no hope,,,,and you look closely at your own life and FIND good in it,,,,,,,then hold your head up and keep going,,,good luck and post when ya can and let us know how things are goin for us,, my prayers are with you
trish
Posted 6/6/2006 10:02 PM (GMT 0)
Pmsmay, you certainly have had a lot of heavy things to deal with lately. It could get worse before it gets better, as some people have a hard time with the side effects of hepatitis treatment. You can only take it one day at a time. I also would like to suggest a gratitude list. Write down all the things in your life that you are grateful for...even the little things. It's a great way to change your perspective and lessen depression. Also, do something nice for yourself--you deserve it!

Hugs,
Connie
Posted 6/7/2006 12:46 AM (GMT 0)
Thank you all for the wonderful thoughts. I will take it one day at a time....keep sending the good thoughts this way.
Posted 6/7/2006 10:36 AM (GMT 0)
hello pmsmay,

It sounds like it must get better and it will. For the treatment I'm going on #16 they seem to get better. Some side effects, but the meds that they have now are better. This forum has kept me goiing from before number 1 shot...:)

Take care
hugs
eileen
Posted 6/7/2006 7:40 PM (GMT 0)
Hello pmsmay, Sounds like you have really been though a lot over a short period of time. I know it's hard, but please be patient. Bad times will pass. Just always remember to enjoy your good times when you do have them.
How is your husband doing from the TIPS procedure? My husband almost had that done but they said that would be a last option for him because of the complications that can be involved.
Just remember to take one day at a time and pray. I do believe that prayers work.
I'll keep you and your husband in my daily thoughts and prayers. Stay strong!
Posted 6/8/2006 1:05 AM (GMT 0)
The first TIPS failed because they couldn't find a soft enough spot to go through. After a month, they did a computerized CAT and placed "springs" or markers in where they found good places to pass through. His body is now adjusting to having a regular blood flow through to the heart and not backing up into the stomach and spleen. It doesn't get filtered as well so there is more ammonia which is being corrected with medication. His "bloating" is better and the chance of a bleed out now are greatly reduced which opens the door for the treatments. We expect those will start as early as next month. It's hard right now, because with all this damp weather, he feels more achey and is more susceptible to bronchial infections. He sleeps so much. I feel lonely a lot, too much. I have to keep reminding myself that he'll be so much better soon. I just with that people that know him would understand that he can't be stressed out and needs to rest. We have a couple of friends (and even family) who don't seem to realize what this does to him. One friend accused me of being the one to put him on all these meds so I could control him. How crass is that! I personally can't stand the woman and finally told her off. It just pisses me off how some people act and react.
Posted 6/8/2006 2:57 AM (GMT 0)
pmsmay, people who have not gone through liver disease themselves, or as a caretaker, really have no understanding of how this affects the patient and family. I think the thing that hurt me most was friends laughing about my daily afternoon naps, as if it were a joke. For me, it was (and is) a necessity. Eventually, those you thought were friends just drift away because you cannot keep up with them. Sad, but true. That is why this site is so necessary for support and understanding, and just having a place to vent.

We are here for you!

Hugs,
Connie
Posted 6/8/2006 8:03 PM (GMT 0)
Hello pmsmay,
The bright side is that your husband has good progress so far with the procedure. It sounds like things are a little better than what they were. Robert has been through three banding procedures to help with varice bleeding and the medication that he is on. So far that is helping him. I know the docs did say that one of the complications would be higher ammonia levels. As long as your husband takes his meds, he should be fine. I know what you mean by feeling lonely, do you have children? I'm just wondering because we have a 7 year old daughter and when I get to feeling lonely and even when I'm not lonely, I do something fun with her. My Dad bought our daughter a pekingnese dog about 5 months ago, before that dog was a part of our family, my husband had nothing to look forward to during the day since I was gone to work and our daughter was in school. So once this dog was around, my husband has done a complete turn around. He takes the dog for a walk, he feeds and cares for him and gives him so much love. He tells me that he could tell him all his problems and the dog will understand. I can truly say that this dog has brought the best out of my husband. Maybe you guys can look into a small house pet and it might help. I never thought our dog would be such good therapy. It does work! I'm still wondering what happend to all our so called friends. They have all disappeared off the face of the planet I guess. Except for one couple friend of ours who are very dear to us. I have learned that family is the support you get in a crisis. Very few friends come around. Robert and I are each other's friends and that's all we need besides are family.
Take care and continue to come back to the forum for support, it sure helps even if you just read and don't post.
Posted 6/8/2006 10:43 PM (GMT 0)
Ironically, my ex-husband called last week and said that he suddenly couldn't keep our 14 year old dog anymore. (think the new girlfriend doesn't want him in their new house). I haven't had Dusty in my life for 7 years and was apprehensive as we had to give away our black lab (1-1/2 years old) because neither of us could handle her (over 80 lbs. ) Dusty is 60 lbs but very gentle and easy going and very obedient. He's really more my companion than Bob's as I take the dog everywhere when I go out and he loves to ride. I don't work as I am disabled also, so when I get frustrated, I just talk to Dusty now. We had our 9 month old grandchild since she was born until her mother decided that family was her major issue in life and took her to Kentucky near her(my step daughter) birth mother. It was such a slap in the face for us, because Bob was Skylah's grandpa and her father figure. We never even got to say goodbye. So Dusty is filling that void but not perfectly.
Today, they took Bob off of Prozac and are putting him on Zoloft to see if it will help his depression. Looks like we'll be a go for around the first of July to start treatments. Thank you all for the support.
Posted 6/8/2006 10:46 PM (GMT 0)
Shel, I loved your post! Animals are definitely good therapy. They not only give unconditional love, but also seem to sense when you are not feeling well. I have 2 cats, 16 and 16 1/2. They stayed right next to me in bed while I went through days of pain, no appetite, and sleeping 23 hours out of 24, following the chemoembolization. They actually took shifts! One of them was always with me, until I started to feel better. They have gotten me through many rough times over the years. Living alone, there are times I know I would be lonely without my cats, or prone to dwell too much on myself. I'm so glad that having the dog has helped Robert.

Hugs,
Connie
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