I'm a care giver

Replies to This Discussion

Permalink Reply by Richard J Wadzinski Jr on November 12, 2009 at 1:03pm

Please get in touch with the tx coordinator, your social worker or some one you can take aside and sit with that will listen to you and guide you through this, I was unfortunate to have been gassed in the 1st Gulf War and had no warning when the poop hit the fan, I went in a coma for a month ,expired was brought back and had 27 hr emerg liver transplant, Praise the Lord our God I am here, there was a donor that matched me at the time of need and saved me. As far as all those numbers, I became a medic after flying for the USAFD for 20 years, I was taught 1 important thing, NUMBERS ARE A TOOL- TREAT THE PATIENT, if folks could keep that golden rule life would be so much easier for everyone involved.
So please calm down and pray and keep the faith and work with the folks best to inform you and guide you through this rough and rocky path. Thank you for being there to take care of your spouse, its a tough time he needs you, even though he may not be able to tell you, just try and tell him I love you, hug him, and do what yuou can to make him comfortable, and please by all means get some alone time for yourself, do things for you, and get some one to help you. Will keep you in a prayer, God Bless you mam, take care, feel free to write back. Richard

▶ Reply to This

Permalink Reply by Cheryl on November 13, 2009 at 1:37pm

You aren't crazy! I had a liver transplant in May of 2008. My meld was close to 40. It is a tough road for both of y"all. It say you are from NV- I hope near a city. Some of the hospitals have support groups- caregivers and people waiting are allowed to attend. At least you could find people like yourself. It is very overwhelming. You have a right to have have time for you!

▶ Reply to This

Permalink Reply by Kathleen on November 13, 2009 at 5:12pm

H iLinda. My husband has been on the transplant list for 2 years now and has maintained a MELD of 12 over that time. Along the way, he of course developed complications such as esophageal varices and a bowel obstruction. We have gotten 2 calls since being on the list and neither have worked out. I understand how hard it is seeing your husband take tons of pills a day and struggle to get out of bed in the morning from being so tired. My husband & I have been together for 15 years and are in our 30's and have a 2 year old son....so I definitely can relate to your stress and worry. We cannot deny that being scared is a part of what this process is...both before and after the transplant. You just have to have faith and believe that things will work out. In the meantime, getting the support you need is really important whether it be from a close friend or a professional. I understand that this situation makes you feel out of control and you just don't know what to expect from day to day. What you can rely on is the support of caring people. For a long time, I didn't share my husband's medical problems with people in fear of what they would think (the worse reaction being pity) and I have found over the last few years that it is comforting to share your story because you find youself having a bigger and stronger support system then before. That is a wonderful gift and it will help you through this process. Good luck to you and your husband. You are in my thoughts & prayers.

▶ Reply to This

Permalink Reply by Julian on November 13, 2009 at 5:46pm

i have been where you are and my husband was on the waiting list for a liver for 16 months, he got hie liver transplant 2 1/2 yrs ago, now his kidneys are getting worse. his creatine level has been gong up in the past few months , up to 7.0, his dr suggests dialysis soon, we are in the proces of getting his evaluation to see if i can donate a kideny to him .

it is very tough to see the one you love be in pain and wait and wait , it tugs at us as caregivers, i have started a webpage to share my our story.

http://www.caringbridge.org/visit/julianguzman

take a look, if you need to write ask any questions, anything i can do to help , just email me:

mssara1962@yahoo.com

i wish i knew about this site back then,

please as hard as it is , be patient as he is going thru alot as we know, and sometimes as the caregiver, we get inpatient, as i have before but i have to stop to think and try to understand him, pray and be there for him he needs you so much .

i pray for you and him for things to get better and for him to get better

take care

talk to him, talk to you rsocial worker, and esp your coordinator, i had the most wonderful coordinator, and she taugh me so much , i now know how to read his labs myself, and if i remember he meld was at 20 at the time of tx, patiently waiting for 16 mths, they todl him it was the perfect match and he has not had a problem at all related to his liver, and we recently heard form our donro family a few months ago and plan on meeting them in feb 2010. we are all soo excited.

▶ Reply to This

Permalink Reply by Beth Hartshorn on November 13, 2009 at 6:40pm

Hi Linda
My name is Beth. My husband Rick got his Liver Transplant on December 13, 2008.He waited for 4 years on the transplant list with a meld of 16. I can completely relate to what you are talking about. It's so frustrating to see how sick they are and when they do their labs, they are only showing a meld of 16. When the number doesn't characterize how sick they are. We were told the same thing it well go up. Rick was pretty much bed-ridden for 4 years. He would get up to go to the bathroom and Dr. appt. but the rest of the time he spent in bed, sleeping. I do know that once the kidneys start to fail from being on lasix and from the bad liver,the meld well go up.This time last year, he turned completely yellow. His Billirubin and Creatine were very high. His score went to a 28. That's when he was number 1 on the list. Then it went real fast and we finally got the call for a Liver.
Linda, it's very hard on the care giver and the family through out all the waiting and watching your loved one be so sick. try to get as much rest as you can. I well be praying for you and your husband.Please stay in touch. Just know that it well get better. Take care Beth

▶ Reply to This

Permalink Reply by Linda J Perkowski on November 14, 2009 at 4:37pm

Thank you all so much for your reply's. I haven't figured out how to reply to each one. I am electronically challenged. Richard, thank you for your Service and your words and prayers. Cheryl, I live in a small town and he will be getting his surgery in California. If you remember how you progression went from 16 to 40 I would love to hear that, if you feel like sharing. Kathleen, God Bless you and your husband, I hope he gets a new Liver soon. Jullian I willl check out the website, and hope for the best with your husband. Beth, Thank you. Was your husband on 16 meld for 4 years...I don't think I can take that. My husband suffers so much, just exactly like you described. It's nice to know that someone else actually does get it. It's hard to find support because it's been so long. I don't want to worry my three sons about me too. Just being able to read stories here has already helped me so mc. Thank you all and I will pray for you all.

▶ Reply to This

Permalink Reply by Richard J Wadzinski Jr on November 15, 2009 at 2:27pm

Linda,
Thank youy for finding kind words of expression to send back, I hope this note finds you well and feeling a little better. Keep the Faith , and you know where to find your tx cafe freinds here. God Bless you and all of us, may the Lord send you strength and comfort to get through this time in life.1 day at a time, make sure you get some of your own time to yourself, be it 15 min or an hour, find time to take a short walk, or something you like to do. Take care, will be in touch here on the Cafe network.
Richard

▶ Reply to This