Top of the List!!!

New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 9/24/2008 7:16 PM (GMT -7)   
First of all I want to tell you what a great site this has been for me...I have mostly been a silent reader on this site and have learned so much.  It has made me feel not quite so alone. 
1 week ago today my "boyfriend" was went to his primary care doctor as he was having a hard time breathing, he also had  had his weekly labs faxed to transplant hospital.  Between his PCP and his coordinator at hospital they wanted him admitted right away.  His labs showed that he was in kidney failure and his MELD jumped to a 28.  We have been there for  1 week and they have got his kidney problem pretty much under control but his MELD has jumped to 34, he is not allowed to leave hospital as they are looking for a match and say he will get the first one available.  I cant tell you how good we feel now that it is so close to happening. We both feel it wont be much longer. The funny thing is that he feels the best he has felt in months.  He actually has an appetite again ( my guess is that because of the kidney failure he had lost it).  Tonight is my first night away from hospital in a week and am home getting caught up on things at home, I am keeping phone close at hand and am waiting for the call.  We both know the road ahead will not be easy but are so excited that he/we gets a second chance. 
 
Jennifer

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/24/2008 8:14 PM (GMT -7)   

Jennifer,

First if all, I would like to "congratulate" you guys.....I know that sounds so weird, but in a way, it's like you have finally reached a goal at the end of a verry looooonnggg race!! When my husband was referred by his PCP to the transplant center we are near, and we went to evaluation, got accepted, etc....I was almost jumping for joy....mainly because we have been battling this for four years and finally feel like we are in a "direction" toward healing, if that makes sense!!! He was taken off the list temporarily, but we were told by our coordinator today that we can be re-listed....so high tailed it down to the hospital for bloodword so that hopefully by this time tomorrow will be back on the list....whew....got all that out!! Secondly, I wanted to tell you thank you for mentioning the kidney issues!! My husband has had alot of trouble breathing lately, went for a pulmonary work up (which is what got him off the list) and also a nephrologist......pulmonary is fine....nephrology says not bad enough to keep him from being transplanted, blah, blah blah....but, he still has trouble breathing from time to time and also has protein in the urine.....cannot help that the kidneys are finally being affected....he is also complaining alot of his back hurting, as well......I though maybe I was going crazy until I read your post about the trouble breathing, etc.....so, I find "comfort" in knowing that maybe I am not crazy after all...I also am a little worried about what his MELD will reveal, because oddly enough, the last several days we are having the best we wee have had in a very long time.I will pray for you guys, and pray that a donor becomes available VERY SOON!! You hang in there....try to get some rest so you can be able to take care of him, as well......

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/24/2008 10:23 PM (GMT -7)   
Jennifer, that's exciting news!  Thanks for sharing it with us. 
 
Good energy and hugs being sent your way,
 
Connie

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/25/2008 6:25 AM (GMT -7)   
Jennifer, I will be praying that Matt receives his transplant soon.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/25/2008 5:50 PM (GMT -7)   
Hello Jennifer and a BIG welcome to HealingWell. I know how exciting this is for you . Will be praying that your husband gets a transplant soon. Save up your energy......you're going to need some extra when he goes into surgery.

Lot's of thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 9/28/2008 12:06 AM (GMT -7)   
UPDATE:  It is 3:00 in morning...i am waiting to see my fiance...he got a liver!!! I know it will be a long road ahead...but we have crossed the biggest bridge.    Earlier to day I thought we would be leaving the hospital as his health started to improve...then we got the offer for the liver.  What a journey it has been.  Will update later...on my way to the ICU.  Operation took 8 hours.

jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 9/28/2008 12:07 AM (GMT -7)   
oh I forgot to tell you....he proposed to me a couple of days ago...we have so much to look forward to now.

okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 9/28/2008 6:33 AM (GMT -7)   

Jennifer

tongue tongue tongue Congratulations, that is the greatest news and has made my day.  Take care of yourself, you still have a long way to go, but know that is all a means to him getting better and you getting to get married and having a great life together. yeah yeah yeah

Helen


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/28/2008 8:04 AM (GMT -7)   
Jennifer, I am so happy for you. I will pray for a speedy recovery.
Butterflythree
 
There is always hope!


jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 9/28/2008 11:30 AM (GMT -7)   
Wow what a ride this is....He has done so well...they say he is having the best recovery ever for a liver patient. They took out his breathing tube this morning and he wanted to walk. Never before have they had a liver patient up walking within 10 hours of the surgery. He is up in a chair and quite heavily sedated but wants no pain meds... Miracles do happen. We realize there is a rollercoaster ride ahead of us, but we are ready. They said he will be back on floor tonight or early tomorrow. Thanks for all of your prayers and support. Jennifer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/28/2008 12:04 PM (GMT -7)   
Jennifer, what fantastic news!  A liver and a proposal!  So glad to hear that your fiance is doing better than most post-transplant.  You still have a long road ahead, but for now--rejoice and celebrate!  And thanks for letting us know!  :-)
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/28/2008 7:30 PM (GMT -7)   
WoW!!!! What wonderful news on both fronts Jennifer. Congratulations on both. So glad his recovery is going so well.

Keep us posted when you can..........
yeah yeah

Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/28/2008 7:39 PM (GMT -7)   
WOW!!!!!! Jennifer!!! I am SOOOOO happy for you guys....for the new liver and the engagement!!! Congratulations!!! I am so happy to hear how WELL HE IS DOING!!! They say to expect them to be in ICU w/ breathing tubes and feeding tubes for a couple of days!! Will pray that his bloodwork is good, and he continues to shock and amaze the doctors!! God is good!!!

Mary

jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 9/28/2008 8:32 PM (GMT -7)   
Well its been 21 hrs since surgery ended....you wouldnt beleive the progress...he had breathing tubes out in 6 hours...he walked around the floor on icu...the nurses cant beleive how well he is doing...the feeding tube is still in and he is drinking fluids...he is still catheterized as well...he is actually watching football game right now....this is amazing...they are moving him in am to transplant floor...this is a first for them...the thoughts and prayers are paying off. The first ultra sound showed that the blood movement in and out of liver looks very good...The liver he recieved is an extended critea liver, the risk was slightly higher with it...I am so thankful that we took it. The crazy thing is that we thought we were going home from hospital as his numbers were getting so much better. Never give up hope. We are praying that his progress continues as we have a wedding to plan!!!!

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/29/2008 6:27 PM (GMT -7)   
WAAAAHHHH HOOOOOOO!!!! I am so happy he is doing so well.....this is so very encouraging! Thank you for sharing it with all of us!!! I have tears of joy as I read this....this is so exciting for you!! It is amazing how God works, isn't it??? You both have so much to look forward to with planning a wedding....and a wonderful life together!!

Congratulations....keep posting with the good news!!

Mary

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/29/2008 8:38 PM (GMT -7)   
I am so happy to hear that Matt is doing so well. Thank God for all that he does for us. I am so excited for both of you. I will keep praying.
Butterflythree
 
There is always hope!


jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 10/2/2008 7:15 PM (GMT -7)   
Thank you all so much for your well wishes!!! Things are progressing very well.   It has now been 5 days and they have taken all of drainage tubes out except the bile duct tube which he should have for about 3 months.  Did some say something about MOOD SWINGS, WOW!! This has to be about the biggest issue so far (for me anyways).   It was explained to me that the Prednisone was likely the cause and high levels of anti rejection drugs.  Can't wait til levels get sorted out!  It looks like we will be in for a few more days, then home to begin our new life post transplant.   I am sure there will be obstacles ahead, but we are ready to overcome them.    It is really weird, but I guess we never looked past getting the liver to recovery...our minds were so focused on just getting one.  
 
To those out there waiting...please don't give up hope...it will happen.  After spending some time in hospital and seeing alot of pre transplant patients we realized that we were not alone....there are alot of other people with similar symptoms.  Trust in your doctors, they know what to do and when. 
 
Cheers,
 
Jennifer

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/2/2008 8:05 PM (GMT -7)   
Jennifer....thank you for the encouraging updates!! We are in the pre-transplant phase, just waiting......my husband is pretty low on the list (his MELD is only 8), so we may be waiting a while.....and you ar right....there is something to look forward to after getting the liver...we, too, have been so focused on just getting on the list, and next getting a liver, I have not been able to wrap my brain about what the future could be like after a new liver, etc.....

I am so happy to hear Matt is doing well.....not sure, but in my mind, I am thinking maybe the effects of the meds will level out and maybe the mood swings will not be so bad!! His body has been through ALOT!!!

Keep up posted......very encouraged to hear your news, and thank you for sharing!

Mary

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/2/2008 9:06 PM (GMT -7)   
Jennifer, I am glad to hear that Matt's recovery is still going well. You keep up that positive attitude. It is very encouraging. You are both still in my thoughts and prayers.
Butterflythree
 
There is always hope!


jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 10/5/2008 7:43 PM (GMT -7)   
yeah   yeah yeah yeah Good news today...they are letting us go home on Tuesday...that will be 9 days post operation...We are both ready.  Results of blood tests indicate that "B/F", (i mean fiance), and his new liver are getting along very well.  We couldnt be happier.  We realize that the critical rejection period is the first 3 months, but we have been well informed on the signs, so we will be aware of any changes.  They also do labs twice a week for awhile and will notice any changes.  They moved us into a private room for the last few days here...its so nice. Every member in the transplant team has worked so hard here to help make this as positive experience as possible.  Mood has definately improved over the last couple of days...what a releif...There is definately light at the end of this tunnel...
 
After seeing varying degrees of recovery here...i realize determination is key to fast healing....mind over matter.  We realize we have been given a gift and will cherish it forever.
 
For those still waiting...hang in, it will happen...do what the doctors say.   A Dr once said, "hang in there...you have to get worse, before you can get better". It  didnt make sense to us when he first said it...Now we get it. idea

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/5/2008 9:23 PM (GMT -7)   

That is such wonderful news!   :-)   We hear so much bad news here, it lifts everyone's spirits to know that things can go well and have a (so far) happy outcome!  I wasn't aware that a bile tube stays in that long.  Is this standard?

Please continue to post and let us know how the "home recovery" is going, once you get there. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/6/2008 2:40 PM (GMT -7)   
Jennifer,

I am so happy to hear this news!!! Your updates have been very encouraging, and I really appreciate them!! I will continue to pray for his recovery period....especially over the next 3 months, because they are so crucial. You guys hang in there....enjoy planning that wedding!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/6/2008 7:54 PM (GMT -7)   
yeah yeah yeah Happy dance time Jennifer........Have a wonder new life with your fiance...........thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


jvargo
New Member


Date Joined Aug 2008
Total Posts : 13
   Posted 10/7/2008 3:38 PM (GMT -7)   
Yippeee!!! We are out of the hospital...had a wonderful "non hospital food" lunch and are at a hotel for a couple of days..We live 3 hrs from transplant hospital and are staying close by as we have appts the next couple of days. Looking forward to sleeping in our own beds, but this is close. This has been amazing, still hard to beleive it has happened. We have been given a second chance and are going to make the most of it. If anyone has any questions, i would love to try to give some answers regarding the transplant process as it is still fresh in my head. Thanks again for support everyone.

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 10/7/2008 8:57 PM (GMT -7)   

Jennifer

Thank you so much for keeping us informed on your fiance's transplant.  My husband is on the list and we also live 3 hrs from the hospital.  His MELD was 17 and 18 for about 8 months now is a 13.  There have been times when I didn't think he was going to make it.  They now have his fluid problem under better control and he's feeling better (probably due to 2 blood trunsfusions in the last week.)  Pleae keep us posted about his condition as it give us all so much hope.  Also what do you mean by and "extended critea" liver? 

 

JoAnn

New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, December 08, 2016 11:30 AM (GMT -7)
There are a total of 2,734,783 posts in 301,247 threads.
View Active Threads


Who's Online
This forum has 151353 registered members. Please welcome our newest member, cxyalsnt.
372 Guest(s), 16 Registered Member(s) are currently online.  Details
Dc28, tickcheckguy, astroman, Scaredy Cat, 1000Daisies, Paxton, ks1905, FamilyGuy, Madcat25, Mustard Seed, Poppie, aloha234, Myself 09, Tall Allen, julymorning, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer