He is listed.

Hi Everyone I have not been on for a few days I started a new post. Oscar has been in hospital for over a week now. So many things have happened. He is on dialysis since Tuesday, he has 2 ports, not sure what they are called, on each side of neck that were bleeding outrageously they did a CT scan and found a aneurysm, and put in a stint. I might be spelling wrong or not saying the correct terms but I am exhausted. He is on a ventilator due to the fact he had excessive bleeding in the neck area and it was becoming huge due to some swelling so Dr felt it was going to obstruct airway. Yesterday his blood pressure was low 70/40 but at night it had stabilized somewhat. Well this morning I signed papers for him to be listed on the transplant list. Of course I am happy/scared too many emotions. He is sedated and I am scared. His meld is in the upper 30's almost 40 the woman who called me said he would go way up there on the list but was not sure on his MELD score. I want to stay positive but what really really concerns me are his kidneys. How normal is it to be on dialysis before a transplant? Please any responses would be great help

He is on dialysis and the site where they put the central line and the line for the dialysis will not stop bleeding. They did some sort of angio and put in a stint yesterday to stop the bleeding but it has continued and now they are thinking of moving the ports. He is sedated and on a ventilator. I know he is very gravely sick and I ask for all of you to have him in your prayers. There was some tests that were not ran but I guess they are overlooking them at this point.

Just got back from the hospital and those two ports are still bleeding I have a feeling I will get a call later tonight. Liver doctor told me today his meld score is 36 and it had been up to 40, very high. I hope the bleeding gets controlled. They said he was up there on the list but there was some. I don't want to lose faith I know they are doing everything they can.

Good Morning

Oscar has been pretty bad this past week he is still in the hospital. The breathing tube is removed but he is very confused and sometimes just looks at you and does not respond. He wont say complete sentences just answers simple questions. Yesterday my sister in law said one of the kidney doctors mentioned to her that he had been removed from the waiting list. Would they not let me know if this were to happen? How can I find out if he is actually listed? I get to the hospital after work and I asked the nurse and she said yes he is listed. My sister sits with him during the day and I asked her to ask the liver doctors this morning. This really worries me since he is very sick and I hate the fact that now he has also developed a skin break down....it just breaks my heart. Could it be he is too sick to be listed. The dr also mentioned to my sister in law that his MELD had been over 40 at one point....I just do not understand!

Two of our posters are post transplant caregivers whose hubbies had serious kidney problems before and after transplants. Both doing well now I hope they pop in and share.

Best

Carol

Thanks guys for your responses. Yes, Connie the bleeding has stopped since Sunday thank God. He went back on dialysis yesterday for the first time since then. They said they were letting his body rest for a few days. The dr's do talk to me since, now we are married. We actually got married on March 30. We were planning on doing it later but under the circumstances we just decided to do it and hopefully be able to celebrate after everything settles. They have told me that if a liver comes up and they feel the kidneys have undergone too much damage they would do a kidney transplant as well.

Moniesol,
Please get a clear answer from the TP team on wether he is no longer listed or just not transplantable at this time. My husband went from a 26 MELD to 39 in less than a week due to kidney failure. He had really high Ammonia levels and was in a "Coma like state" when he arrived at the transplant hospital. Between the kidneys and the ammonia, he was on deaths door. After we were there a few days, I found out his MELD score was 39 by calculating it myself and when I approached the Dr's with that, they said he wasn't listed due to a kidney infection. I flipped of course and spoke to one of the assistants and they explained he is still listed just not transplantable until the infection clears up. There is such a fine line on how things are said and when your fighting for your loved ones life . . . it just gets crazy. Try to stay calm and ask alot of questions. My husband did get his transplant 2 weeks after we arrived. They were really concerned about his kidneys, but he was too sick for dialysis. Thye told me he may have to have a kidney TP down the road if they did not come back to life after the liver TP. His kidneys took a hard hit, but within a few weeks they were working fine. his transplant was a huge success. This man would not have lived another 2 weeks . . . keep a positive mnd and pray!! Alot!!

Debbie

After posting, I realized that what they may have done is inactivate him...not actually taken him off the list. I think your SIL may have interpreted it wrong. For instance, I was inactivated for about 10 days while fighting a viral infection in my lungs. Once it cleared, I was activated again and got a transplant a few days after that.

Keep the faith!

Hugs,
Connie

Moniesol, regarding the bed sore, ask if they have wound care nurses there. They will know all the tricks to get the bed sore healing. That's how I came to have a visiting wound care nurse at home to care for my open wounds from blisters that appeared, broke, and are very raw. I also have a large and painful hematoma on my rt. shin. I also see a wound care P.A. at Mayo every two weeks. She decides how to treat and for how long.

Oscar wouldn't be able to do a regular cardiac stress test right now, as it involves exercise or movement. With me, they had me lie on a table and pedal my feet to get up to a certain reading, but it sounds like he is too "out of it" to be able to follow instructions. Maybe they can come up with something else, but right now he wouldn't be able to have a transplant anyway. And it really doesn't sound like a good time to be doing a biopsy on his lungs, either.

Please keep us updated. Our thoughts are with you both that he will get past this crisis.

Hugs,
Connie

((Moniesol)),  I am so sorry to read about your husband's struggle.  I really feel for you.  I think that you need to maybe get a little rest to have a clear head as to what your next step should be.  It's a terrible place to be in for sure.  Did your husband and you have any discussions on his wants? If not if you were in his shoes what would you want? 

Just know that you have a lot of cyber friends thinking and praying for your husband and you. 

He does not have a living will. I did ask the Dr's to please let me know when we get to the point where nothing can be done. It's just so hard to see him with the tube once again and not responsive. When they removed the tube the first time he was very confused he knew who I was but was unable to have a conversation it was more yes and no answers. He did tell me before he got sick that he wanted dr's to try everything possible to keep him alive for a liver. Liver dr's want him to be free of active bleeding and it has been a couple of days. He did have rectal bleeding and they ran a scope and determined it was hemmoroids that were bleeding but for now it has stopped. I am just physically drained and I do not have a clear mind. I go everyday but I also must come to work, its just so hard.

Oscar has a huge family he is one of 13 children. His mom is in her late 80's and has gone to see him but because of her age and him being so sick they have not taken her again. He has one sister that has been there with me everyday! Two other sisters come off and on. One of my sisters which is not working goes during the day with my dad to sit with him. He is usually asleep but i hate for him to be alone. They told me yesterday he has pneumonia and I felt like a punch in the stomach. The ports in his neck are growing bacteria and they are suppose to change them out today. They will not move it just change the catheters, I hope he does not bleed much. He is still sleeping most of the time and does not obey commands.

Moniesol, I would certainly call on help from some of his family, and not just sitting by the bedside. One could maybe cook a few meals that could be individually frozen. Another could do a little housework. And another could give you respite for several hours. You simply cannot do everything.

Hugs,
Connie