Top of the List!!!

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......

Jennifer, I will be praying that Matt receives his transplant soon.

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.

Jennifer

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.

Helen

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

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..........


Thoughts and prayers.

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!!!!

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.

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

  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.

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!!!

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.