Feeling sick no progress

[YSEBOI]

Mom was discharged from Mayo yesterday.  Still extremely ill, not eating, not drinking even small portions of water make her want to vomit.  I just feel like there is no relief in site for her... feel helpless

[zarmar]

Just a deeply felt shout-out to all the responders to this post. - hector, nan, nurse, hepc, et al.    You are so generous and supportive of the people who visit here looking for advice.  The days can be so dark with the unrelenting presence of the virus that wants to destroy our health and well-being.  You bring your light into this space and make a difference when you do.  Thank you.

[hepcandme]

Please do take care of yourself.

Your mom needs you but you can't bear this challenge completely on your own. It's debilitating for you not to have some time to recharge.

Your mother is very fortunate to have someone like you as her advocate

Sending good thoughts and best wishes to you both

[HectorSF]

Thank you Jo.
I try to read your comments whenever I can. I always enjoy your how you know how to focus on the practical issues at hand, and can explain some pretty complex things in a very clear manner that everyone can understand. Just knowing that someone else can understand our situation makes us not feel so alone in our medical issues and that by itself can bring comfort.Your understanding and practical steps as to how to move forward despite current temporary challenges have been a great help to many here. WIth your guidance and the help of others here, more people than ever are on their way to treating and now curing the HCV infection and preventing further damage to their health and lives.

While liver transplantation is a life-saving and life-changing miracle for us who needed one... it is always best to be, as healthy as you can, for as long as you can, and keep your own body parts if at all possible. For most people infected with hepatitis C, now and in the future, they will be able to stop the progression of their liver disease and not need a transplant. For those us who couldn't stop the underlying cause of your liver disease (hep C) and keep the liver we were born with we at least had the option of last resort...Liver Transplantation...which gives us every new day of life that we won't have had any other way. We all have a lot to be thankful for.

Keep up the good work!

Hector

[nan535]

I am almost four years into being my husband's caregiver. It has been a tough road for both of us.  Friends and family are supportive but at the end of the day, it falls on me.  Don't get me wrong - I wouldn't have it any other way but it is very stressful.  I have gained 20 pounds over these four years and suffer from heartburn.

Hector has given you the best advice. It is easy to burn out so make sure you take time out for yourself. Ask for help.

Nan

[nursehepc]

As always...you give great advice. I am certain the transplant center you work with treasures you! Jo

[nursehepc]

Recovery from CMV in transplant patients takes a long time. I am sure you have expressed your concerns with her Dr? I am so sorry.

Did her Dr/nurse provide you with a treatment plan at discharge? For example: Symptom treatment and nutritional support/continued movement (spending to much time in bed and not moving around carries with it risks that could cause more problems for your mom). When is the next visit to her Dr?

Feeling helpless is an awful feeling when a loved-one is involved. Jo

[HectorSF]

CMV infection in an immunosuppressed person is a very rough. It takes quite some time to fully recover from. The body has its own timetable to heal which usually is a lot slower than we would like it to be. If we fight the natural process we will only be frustrated as it will take as long as it will take. It will be a matter of slow recovery just as recovery was after the transplant surgery was. These are major, serious medical events an not something one bounces back from in a day or a week. It is going to take time from her body to recover. Luckily she is now out of the time of serious danger when CMV infection can be life-threatening to early post transplant immunosuppressed patients.

As with all things about liver transplant it is a waiting game. If there is one thing I have learned from this whole experience is that patience and taking it one step at a time (one day, one hour and sometimes even one minute at a time) is how we overcome our current challenges so we see better days of health and happiness ahead of us. It is important to keep your eye on the prize. An extended life beyond progressive deadly liver disease. For many of us life hasn't been this good in many years. We got sicker and sicker for many years before we ever got our transplants.

Unfortunately the road to health is commonly a bumpy one. Transplant is no fix and then we go back to what we were doing before we became sick as I am sure you know. I have met very few people of the hundreds of transplant patients I have known that have had a totally smooth ride post liver transplant. Transplant is for the rest of our lives. It is something we learn over time how to live with. The good. The bad. And the ugly. When times get challenging I try to think that no matter how tough it gets we are alive and that is always better than the alternative in my opinion. That thought helps me to get perspective at times when I get caught up in the latest drama whether is be a medical one or personal one. Being alive this minute because I was fortunate enough to get a liver transplant to me is worth all of the suffering I have gone through and will go through any day. I think each of us have to come to our own peace with our medical condition and their consequences as best we can in order to live life to its fullest.

Caregivers in some ways have a tougher job than we the patients do. At least we have some control over how we deal with our medical issues. The caregiver is as you say helpless ultimately. I am much more comfortable with my own health issues because I can choose what happens and how I deal with it, than when my friends are suffering with liver disease or cancer. I get that helpless feeling as well. I have come to realize that the best thing I can do is listen and try to be there for them with empathy, love and hope. With love and hope we can help others and help ourselves.

You must remember to take care of yourself, first. We see many caregivers at our transplant center who get burnt out taking on all of the caring for their loved one. If possible you should try to share your caregiving tasks with others. Ask for help if you need to. Others usually don't know how they can help. Think of simple practical things that they can help with. Even if it is just so you have time to do things for yourself. For any one person to be a caregiver is an impossible task. Please give yourself breaks. Us patients are a lot stronger than others think we are. We are not helpless. Sometimes we need just need our own space and time to be sick and miserable. It is part of it. Then when in time we gain the strength and are ready we can heal and rebuild ourselves mentally and physically. Being ill takes a lot of energy even if we are just lying in bed. The pain and suffering takes a lot out of us. It takes time to heal. Slow and steady wins the race.

Try to keep in mind this is all temporary. "A bump in the road" as we transplant patients say. I am not saying this isn't terribly stressful and frustrating but keep in mind that better days are ahead.  

Transplant is no bed of roses for anyone that has experienced it. But it is an opportunity at a second chance at life which few people ever get to do. Unfortunately suffering is a part of life and those who have gone through advanced liver disease or liver caner and needed life-saving transplants get more than their share sometimes.

Please take care of yourself and get others to help you help your mother. Take time for yourself. Do things you like doing. Take a walk. Go to a movie. Give yourself a break. The better you feel the more you can give and help your mother with her journey in her new life.

Be well.
Hector