I write this post still in amazement that we got a surprise transplant call at 3am on July 2, 2018 !! My faith in God being at work in the world is sealed! Also the faith and encouragement of the many posters on this website gave me courage to nurse John he’s past few weeks. We are at WeilCornell – NY Presbyterian, and they did an outstanding job. Dr. Benjamin Samstein and Dr. Watkins performed the surgery. We had only just signed an extended criteria agreement for a deceased donor two weeks before the call. Those of you living in region 9 know, there is a lot of competition out there. It turns out it made all the difference, an angel, 69 years old had died of a stroke and gave us the gift of life. I still get choked up just writing this.
We were diagnosed only last July, but John suffered seven sepsis – cholangitis infections which had him hospitalized for a week at a time. In fact we were in the hospital fighting another antibiotic resistant strain when we got the call. Overall John did beautifully during surgery, he did not need a transfusion, and did not need to be intubated, he was walking around the next day and his color was great. He was all set to be released one week after the surgery when his white blood cells started to surge upwards. They were at 25 five days ago and have just edged downward to 17 as of today. Doctors do not want to release him, until they can pinpoint the source. He has had an MRI, CAT scan, chest x-rays, blood cultures daily, all show the liver is working fine and no areas of abscess they could be causing the infection. My question is, has anyone encountered a similar situation post transplant? ALSO I would welcome ANY advice you may have for him going forward. Any topic welcome
My prayers, encouragement go to all of you waiting for transplant, it is a miracle and your day will come! For those who have received a gift of life, congratulations and continued health. He maketh me to lie down in green pastures and leadth me to still waters…
Dear RoseSharon,
We rejoice with you and your husband today at this miracle of the gift of life he has received. This is the beginning of a wonderful life for the both of you! I am so glad to hear this wonderful news. I’m sure we all could give you plenty of advice post-transplant, but today I just want to rejoice with you. Praying for a speedy recovery. We had to stay near the transplant hospital for a month after my transplant but it’s well worth it with all the labs and appointments that he will have to go to several times a week once he’s released.
Take care and do stay in touch. Thank God for this miracle of life!
I don’t have any advice or helpful answers for you, but I am so happy that your husband has received his new liver and pray that God will continue the healing process so all his numbers look good and he is released. God is good!
I am overjoyed for you and John, RoseSharron! I too felt strengthened and blessed beyond belief by the Lord following transplant - there’s no greater feeling! Praying for a speedy recovery and peace for the family that lost their loved one. Big Hugs,
Rose, I am so happy for you both. Getting up the next day is a great step (pun intended) in the right direction. That takes guts-even the new part.
Once you are home, be prepared for him to be pretty weak for a while. On my first day, we went to breakfast-could not eat it all and did not go the grocery store as planned. The worst thing about my recovery was the inability to get comfortable in sleeping. That caused rotten sleep pattern remedied by multiple naps.
His appetite will likely return slowly, but keep him hydrated and eating as much protein as he can. Protein drinks are good, but watch out for the sugar. I bypassed Ensure due to their high sugar content and went with Premier Protein, mixed 50/50 with milk.
Many thanks everyone!! We truly appreciate your encouragement and advice. Jeff we will try the protein shakes you mentioned. John came home July 21. He is 25 lbs lighter. We gathered around a table and used a team approach to fill the weekly pill box!! Sounded like a poker game. He is doing well, he has tired periods as you mentioned Jeff . Sleeping through the night for the most part. He is on a picc line for the high white blood cell count that’s been hanging around for past 10 days…zosyn 3x a day, self administered. We are hoping it drops out of sight , they are attributing it to infection, team still can’t pinpoint source. We have also been given magnesium due to a No I mowed and bloodwork. He is also an ultram for pain .lYesterday was our first follow up visit at Cornell NY Presbyterian. They did bloodwork and ordered MRI for next week. His liver functioning all show normal ranges thank God. He is really encouraged by this news… thinking positive and gratitude Gloria!!
Wondering how much people dined out in the weeks immediately following tx? Also how contained should public spaces be to avoid transmitting illness? A man in our support group said he didn’t go to synagogue for six months. What about grocery shopping and restaurants…So far we are just eating well done burgers and meat and french fries. Was told fresh vegetables may not be washed well enough.
Rose,
Just to answer your questions regarding dining, etc. from my perspective. After a 6 night stay in the hospital I was released to the hotel we rented a few minutes from the hospital for the next 4 weeks. One of the first outings I had was to go to a barber shop. My dad drove me over and when we went in I explained to the barber that I had just had a liver transplant and would they please take extra precaution to thoroughly clean their clippers, combs, etc. before they started on me. They were very understanding and did so. --On a side note, once I returned home and even now 3 years later my regular barber always cleans his work area, thoroughly cleans his clippers, etc. every time before he begins. I have had no problems with any contamination in that regards. Regarding eating out, buffets of course are definitely something to avoid especially the first 3 to 6 months and even afterwards you must use caution. At the hotel they had a nice buffet breakfast every morning. My wife always got down there very early right when the breakfast bar opened and fixed me a plate and brought it back up to the room. After a week or so I ventured down and ate in the eating area of the lobby, and the person manning the buffet was very understanding and worked with us so that I didn’t get any food that had been touched on someones plate or by children. No issues. We ordered Papa John’s pizza a number of times, and did eat out but always ordering from the menu. One thing to keep in mind, for church dinners when everyone brings their food we worked it out so I was always at the front or very near the front of the line so I could get a plate before the children served themselves, etc. Of course any meats we always would take to a microwave and heat till it was steaming to prevent any bacteria issues. So far so good. Most any fast food restaurant like Chic-fil-A, McDonald’s, etc. you should have no problem. You do want to take sanitizing wipes and clean down the table good in places like that. Of course any fresh fruit or vegetables need to be washed before slicing, definitely no grapefruit juice, Sunny D, anything that has grapefruit as it interferes with the immune suppression medication.
I never avoided going to church after I finally came home from being out of town for that month near Duke. One thing the Pastor did do for us, he mentioned to everyone that I would not be shaking hands any longer and for the first few months I would slip in and out of service to avoid having to greet people up close. After awhile though I just used common sense. Now I will bump fists or hit elbows with the men and of course will give a hug. You just have to use precaution. And even now I’m in and out of the business community every day and there are times I’ll meet someone and shake their hands. I just use hand sanitizer once I get back to my car or wash them depending on where I am. Main thing is to keep them out of my mouth and eyes. Now the first few months post transplant when family and friends came to visit, the first thing they had to do was wash their hands or use the sanitizer I had out before I’d shake their hands, etc. And I told family/friends to not come if sick or with children who had runny noses, etc. The biggest issues I’ve had are bronchial infections once or twice a year. When that happens I go to my ENT and he gives me a couple of shots and then some inhalers to try and break up the gunk in my lungs. When my wife’s father was dying last year in the nursing home I was in and out of there for a week every day. Well wouldn’t you know it a flu bug was going around and I ended up with a bronchial infection that lasted 6 weeks. No need to go around with a mask on either as it’s a liver transplant not a lung. The biggest precaution is good handwashing practices and avoiding germs as best you can. Of course, no cat litter boxes and things like that. He doesn’t need to handle dirt in the ground, rose bush thorns, fish water, cat boxes, etc. without protective gloves on.
Well I could go on and on but hopefully this helps some. What a wonderful beginning with a clean bill of health. Isn’t it wonderful to look into his eyes and see only white and not the brown orangey look that liver disease gives.
Take care.
How can I thank you for your detailed and helpful advice on negotiaging these first few weeks. Bringing a new liver home is a little like a newborn in a way eh? yes I love looking into his eyes now. He always had a slightly cloudy-yellow cast to his and we noticed now they are whiter for sure. For our first few trips out we realized we needed hand sanitizer, wet wipes and a pain pill for bumpy roads. He is just 3.5 weeks out and still gets wiped out after a 30 min. car ride. Seems he has less energy than last week, but was told that was either the healing process exhausting him or the prograf + myfortic. Funny I had the same idea as your wife for buffet dining… I would go downstairs to the hospital cafeteria as soon as they put a new meal out and try to get to it right away. Still each bite he took made me so nervous, because the dietitian explicitly told us — no buffets! But he was literally getting the same food every day delivered to his room and needed a break… They assured me they never reheat food from other meals, which I never thought about until then. John is a college professor, and has decided to take the fall semester off. He feels it’s the best decision considering he is the chair and works a lot with advising students in his office. Too much risk, as you experienced in the nursing home. Not to mention the physical aspects of teaching, he writes a lot of long formulas on a blackboard. Of course this is difficult too because he loves his work.
We took a trip last night to a church that held a Novena to St Anne. The moon was full, we brought garden flowers and many many prayers of gratitude for our blessed donor.
yes I love looking into his eyes now. He always had a slightly cloudy-yellow cast to his and we noticed now they are whiter for sure. For our first few trips out we realized we needed hand sanitizer, wet wipes and a pain pill for bumpy roads. He is just 3.5 weeks out and still gets wiped out after a 30 min. car ride. Seems he has less energy than last week, but was told that was either the healing process exhausting him or the prograf + myfortic. Funny I had the same idea as your wife for buffet dining… I would go downstairs to the hospital cafeteria as soon as they put a new meal out and try to get to it right away. Still each bite he took made me so nervous, because the dietitian explicitly told us — no buffets! But he was literally getting the same food every day delivered to his room and needed a break… They assured me they never reheat food from other meals, which I never thought about until then. John is a college professor, and has decided to take the fall semester off. He feels it’s the best decision considering he is the chair and works a lot with advising students in his office. Too much risk, as you experienced in the nursing home. Not to mention the physical aspects of teaching, he writes a lot of long formulas on a blackboard. Of course this is difficult too because he loves his work.