| Author |
Message |
HopeSeeker
Member
Username: Hopeseeker
Post Number: 1
Registered: 07-2009
| | Posted on Monday, July 27, 2009 - 09:50 pm: | 
|
My husband "cactus" helped me get on this site and i am ever so grateful. sometimes it feels like i am alone in this trying to take it day by day. people try to listen or understand, but it's hard on them and harder for me to open up about how i feel as it changes from minute to minute. thank you soooo much and i look forward to exchanging conversations and ideas with whoever is in need like i am. |
Hostess Rise'
Board Administrator
Username: Risa
Post Number: 9875
Registered: 05-2003
| | Posted on Tuesday, July 28, 2009 - 05:02 am: |
|
Welcome Hope Seeker. I am so glad that you joined us. Please give us time to get to know the many members here. Read a little here and there and you will see how quickly you will learn the ropes. We are not alone.
The more you post your messages in this category, others will follow and respond.
|
Christena's Dad
Member
Username: Christenas_dad
Post Number: 319
Registered: 01-2009
| | Posted on Tuesday, July 28, 2009 - 09:51 am: |
|
Good morning, HopeSeeker, and welcome aboard.
This is the perfect place to seek comfort, information, camaraderie or just somewhere to vent. The beauty of the internet is that we can sometimes use it to anonymously get off our chests those things that trouble us most. Think of it as your place to walk into the woods and shout at the top of your lungs, if that's what you need. And also rely on those like yourself and your husband who are going through, or who have gone through, similar life experiences.
Illness and the transplant process can be very overwhelming. And while friends and family attempt to be compassionate, they cannot know what it actually feels like to walk in your shoes. Many people here have walked the walk and they will be able to assist you in many ways as your family continues on its journey.
I'm glad you found this wonderful site and I hope you visit us often.
But mostly, I hope you and cactus have a great day!
Christenas Dad
Father of Double Lung Recipient at St. Louis Childrens Hospital June 2005
Kentucky, USA
Christenas Journey is at www.christenasjourney.com |
|
HopeSeeker
Member
Username: Hopeseeker
Post Number: 2
Registered: 07-2009
| | Posted on Tuesday, July 28, 2009 - 04:11 pm: |
|
Thank you so much for the response. It is a comfort to know there are others who know how you are feeling and what you may be dealing with. I try to keep my fears and concerns to myself as "cactus" reads me so well and I don't want him emotionally hurt more than he is. He is a proud man who up until last march 08 had not been sick or seen a doctor since he was 18. Then literally overnight our world came crashing down. See, i am disabled as well. my wrists both are fused together and he was there for me all the way. so I must stay strong for him, his mother, his father, and others who lean on me for support. His mom calls me the "bull mastiff" because when something seems too difficult, somehow(i know how!!! my creator!) gets me through it. but sometime i have to go out to our barn and lean on one of our horses for support. They don't judge me or worry about me or try to bring me up. they just let me be me! But with this link, i can at least have human contact with others like me!!! thanks for listening-hopeseeker
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
Becky
Member
Username: Rebekkaann
Post Number: 22
Registered: 09-2003
| | Posted on Tuesday, July 28, 2009 - 07:09 pm: |
|
My husband's family was no support, I was so grateful for my family & sites like this. Hope you find what you're looking for. Feel free to ask anything I may help with. My husband is 7 years post K/P Transplant.
Becky |
HopeSeeker
Member
Username: Hopeseeker
Post Number: 3
Registered: 07-2009
| | Posted on Friday, July 31, 2009 - 06:13 pm: |
|
Can anyone give me some insight as to what i might could expect after my husband receives his new liver and comes home? I know what doctors say, but i would really like "real" world experience. I deal better with fact than fiction so anything would be of help. thanks in advance for any input-hopeseeker
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
HopeSeeker
Member
Username: Hopeseeker
Post Number: 4
Registered: 07-2009
| | Posted on Friday, July 31, 2009 - 06:17 pm: |
|
HopeSeeker is my Indian name. Got the hope part 18 years ago. People i know always came to me with problems and said i gave them "the hope they were seeking!" now here i am seeking! how poetic!
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
Becky
Member
Username: Rebekkaann
Post Number: 25
Registered: 09-2003
| | Posted on Tuesday, August 04, 2009 - 07:03 pm: |
|
My husband had a Kidney/pancreas transplant but some things that we noticed are:
Very impatient with people/kids - he would snap at the neices/nephews over stupid things, which he had never done before (the meds had a lot to do with this, once they tapered down so did that).
Full body twitches - this would wake me more than him, but a first it was something we worried about, also went away once the meds were lowered.
Bored stiff - all the "projects" he had planned to do while recovering just didn't work. Some had to do with restrictions from his doctors, other because he just didn't have the energy.
Blurry vision - this was something he'd been used to for awhile, but it did worsen for the first month or two & then they got better.
Remembering to take his pills & a given time - we got him a watch with 3 alarms to help out with this still. It is so easy to forget, especially when you start feeling better. Our kids are 2 year old & they know that when the alarm goes off it's time for daddy to take his meds.
It's been awhile since I've thought of these things, so please ask if I don't answer what you're looking for. I'll try to remember a few more things that we experienced those first few months (they were the hardest). |
HopeSeeker
Member
Username: Hopeseeker
Post Number: 6
Registered: 07-2009
| | Posted on Friday, August 07, 2009 - 09:46 pm: |
|
tthanks becky, that is some alot of what i am looking for, i just want to do my best to help my husband through this. Unfortunately just a while ago i got nosey and looked up something somehow explaining what to expect right after surgury in ICU. Made be a bit weak but i composed myself when he came in from his walk. talking about all the hoses and tubes and wires and so forth. but anything and any input is appreciated. thank you
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
Deb
Member
Username: Deb
Post Number: 715
Registered: 06-2003
| | Posted on Monday, August 10, 2009 - 10:11 pm: |
|
Hopeseeker, first I just want to say, "Welcome." Just by reading your post you are a very strong person and tend to help whomever you can whenever they are seeking you for help. There is nothing wrong for you to seek as well.
You mention, that you go out to the barn for support from the animals. I do the same thing with mine except I have no horses here. Animals can sense fear, and troublesome as well as happiness. I also now come here for support, to vent and to even get a laugh. We all know laughter is the best medicine. Hang in there and just bounce around on board. You two will get through this with your support and family and friends like here. This forum to me is another family to me.
Vent, Cry and Smile, we are here for you and your family 
Kidney transplant 6/22/2002
lildeb |
|
Becky
Member
Username: Rebekkaann
Post Number: 28
Registered: 09-2003
| | Posted on Tuesday, August 11, 2009 - 12:30 pm: |
|
Best advise I can think of is don't hide all your fears from your husband. I did that at first & he would constantly say things that made me feel worse. Once I opened up a little more, we were able to get through the wait a little better. No longer how long the wait, it feels like forever.
We waited 5 weeks for the transplant "call" & 3 1/2 years for the adoption "call", both felt like a lifetime & I'm so grateful for both now.
Hang in there. |
HopeSeeker
Member
Username: Hopeseeker
Post Number: 7
Registered: 07-2009
| | Posted on Tuesday, August 11, 2009 - 03:03 pm: |
|
Thank you so much for the responses. Today is a rough day for me, want to cry, scream, curl up in my bed and just lay there watching SpongeBob!!!!! I am fighting it tho. I am having a VERY difficult time expressing to my husband all of what I am thinking or feeling. I don't want to make him feel worse. My function is to be strong for him. but I wonder if he has a clue of what I am going through. And that makes me feel selfish. It is just always been assumed that I "can handle it" whatever may come up. NOT!!!! Inside i feel like a hurricaine just turning and swirling. Heck at this point today Hurricaine Andrew didn't have squat on me! But tomorrow is another day and then we go back for for his 3 month CT scan to let us know what is going on with the cancer. So I will "Pull up my boot straps and hang on. Again thanks for the help.
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
HopeSeeker
Member
Username: Hopeseeker
Post Number: 9
Registered: 07-2009
| | Posted on Friday, August 21, 2009 - 09:38 pm: |
|
Got good news and so-so news-ct scan showed no new lesions, anywhere and my husbands hep c numbers have gone from 600,000 march one year ago-440,000 five weeks ago to 7050 one week ago! They say if he doesn't get a liver in the next 6 weeks then the hep c will probably be gone. Case worker said she had never seen that as he had been on treatment for only past 4 weeks! However, his MELD went up to 25. his spirits are a little better since they put him on Lexapro, and he is now on Procrit. I am hanging in there holding onto any good, large or small! Now, does anyone have advice on how to deal with overlealous family members? thanks for any and all help.
caregiver of husband pre-transplant liver
"I walk the Red Road!"
|
|
Hostess Rise'
Board Administrator
Username: Risa
Post Number: 10142
Registered: 05-2003
| | Posted on Saturday, August 22, 2009 - 12:01 pm: |
|
Hi Hope Seeker
Glad to hear you are pulling your emotions together. Do you find writing helpful? Can you put all your thoughts down on paper or type them out and file them away?
I am not sure I understand your post. sounds like your husband is winning the battle over help C. What is the so so news?
Tell me about your family members? Do they say things to annoy you on purpose or do you think they genuinely care about you both?
Without any info, it is hard to help.
We are always around here to answer your questions and provide support.
Take time to take some deep relaxing breaths. You deserve it!
|
Becky
Member
Username: Rebekkaann
Post Number: 29
Registered: 09-2003
| | Posted on Monday, August 24, 2009 - 11:58 am: |
|
Sorry not really able to help with the family issues, we had the opposite where they just didn't seem to care. It's hard for others who have no experience to know how to deal with those dealing with the issues at hand.
We saw this with the transplant, cancer & adoption. It's just hard to explain your fears to someone who doesn't have a clue (just because they have nothing to compare it to).
Best advise is to try to be patient, they mean well.
caregiver
husband k/p transplant 07/2002 |
|
Hostess Rise'
Board Administrator
Username: Risa
Post Number: 10159
Registered: 05-2003
| | Posted on Monday, August 24, 2009 - 05:38 pm: |
|
Hi Becky
I agree with you. Not everyone will understand. Many people have their own crosses to bear in life and some will be able to relate on some level.
|
