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Almost there!

I'm past the halfway point of my 3 month recovery. Everyday there's something new going on like a new ache or pain or an ache or pain of yesterday is gone. It's my energy level it fluctuates greatly. I'll start a small project get halfway through and become exhausted! Someone tell me this goes away with time?!?But th reason I'm writing is the donor letter. How do I express my respect for their grief of their loss while I'm expressing my gratitude for that same loss being my donor. I simply can't find the right words! I have started writing this letter so many times I lost count and each one sounds worse than the last.I know many of you have written letters, can you give me some advice so I don't sound,well, stupid and insensitive?

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  • Hi Jacque, I am just over two years after my liver transplant. It was very difficult for me after my transplant but it became better after all the initial problems were sorted out. Today I am enjoying great health. I even feel much better than before the liver transplant. I still goes for regular blood tests - every two weeks. My medication is the same for 9 months now and they are satisfied with all the parameters. I just wish you the best in your recovery and may you enjoy your new life. Take care !

    • thank you for your reply Willie.
      Question, when did you get the thumbs up to start exercising? My team keeps telling me to wait at least 3 months but I feel well enough to do Something! So today I took my dog for a walk around the block, I was out of breath when I got back but I felt an energy rush better than coffee! I don't u derstanding why a little physical activity would be a bad thing??
      I know to listen to my body and rest if I need too, but sitting around is just to depressing!
      I do have pain around my inscision, there's some bruising still and my lower belly is sore from the I smiling shots, did anything like this happen to you?
      I appreciate your taking the time to reply, have a blessed day!
      Js
      • Hi JS,
        It took me months to do things on my own. I had to learn to walk again. I just did not have the strength to do it. They only discharged me from the hospital when I was able to move up and down stairs and could walk with the help of a stroller. I think you are currently in a greater condition in comparison to me.
        Yes, exercise is important, just listen to your body. You know your body and you will know when you need some rest. Remember the operation is a big one and it takes time to heal completely. I can assure you this will become better, just take care and be patient. I will be happy to answer any questions.

        • Wilie thanks again for your reply! I totally agree with listening to my body, some days I'm a ball of energy and hate to take a break and I pay for it at bedtime when the exhaustion and pain sets in, then there are the days I do practically nothing and still feel the exhaustion and pain just not as bad. I realize the surgery was intense I think it's my family that doesn't quite get what I'm going through. They figure it's been a couple months and I should be able to do more and I hate disappointing them so I try and overdo it and pay for it. I learned a big lesson last weekend overdoing it And that was just a quick trip to the grocery store but by that night I was in some serious pain! It doesn't help that I also have arthritis in most of my joints and that can knock me off my feet if I irritate it!
          I have another question that I meant to ask my team but I have you here (thank you) what about caffeine, yeah or nay?
          • Dear Jacque, my name is Cornelia, Willie's wife. When he was so very sick, he nearly died. I thought that he will receive a liver and in no time he will be back on his feet, the "old" Willie with new strength and energy. As his care giver, it was such a shock for me when it dawned on me that he had to learn to walk again. I had to dress and feed him. It took some time for me to work through what was happening to us. We had to get used to our "new live". Now just over two years after his liver transplant, we have a "new normal". He is back to work and life is going on. Still, he had lost some of that strength and energy. He can not do what he has done before. His new life now is with much less activities. We do not commit to any activities on Saturdays as He needs a day to rest and do nothing to recoup after a week of work. I took over a lot of what he had done before. I pray that your family will realize that they should stand in the gab for you and carry some of your "load".

            • Hi Cornelia, thank you for sharing your husbands story with me, I'm so sorry he had such a bad experience with his transplant. I admire you as a caregiver because it's a tiring and endless job, I often wonder how my husband tolerates me! I have the wonder side effect of the steroid I'm on of incredible mood swings, one minute happy, then I'm in tears or angry as hell all for no particular reason! Of course I apologize as soon as I get over it and he says he knows it's not me it's the meds. Gotta love him for that! And he is wonderful helping me every day, he washes my hair, helps me cook meals or goes out to get them, he really does too much all while working 60-70 hours a week!
              My kids seem to think I should be able to do stuff like before the transplant and I have explained it to them many times it's just they're used to me being a certain way and when I can't do something they get their feelings hurt or get upset because they think they're hurting me! I want to do everything like before and I try but sometimes I gotta say NO!
              I've been saying NO quite a bit, to friends, extended family, groups I belong to etc. I don't apologize either! I'm in recovery get used to it, I'll let them know when I'm feeling up to a visit, a get together, a party, charity work or volunteering, but it will be when and what I want to do.mof course it's all Gods will, He gave this miracle and I'm going to do anything to jeopardize my new gift!
              How long did your husband stay in the ICU then the transplant floor? Did he have a nurse come to your home or was it all on you? Did he have a physical therapist, a nutritionist? I'm so happy to hear he's doing well now, just sorry to hear what he went through, the walking part was really something did they think it was because he was bedridden for so long?
              Again, thank you for you reply!
              Jacquie
              • Dear Jacquie,

                First, sorry that I reply only now. I will answer your questions and after that I will add a part of my dairy.

                You asked: How long did your husband stay in the ICU then the transplant floor? - 9 days in ICU, then from there, first transplant and after surgery to "Transplant ICU" for 29 days. He was 9 days in a coma.

                You asked: Did he have a nurse come to your home or was it all on you? - I took care of Willie. No nurse come to our home. Our family doctor come twice a week for blood control.

                You asked: Did he have a physical therapist, a nutritionist - No, non at all. There was a dispute between the medical insurance and the pension funds on who will pay for rehab. To this day Willie did not go for rehab. We prayed and God gave me wisdom to "help Willie with rehab".

                You asked: the walking part was really something did they think it was because he was bedridden for so long?

                The doctors said that Willie nearly died 3 times. The first time (April 5th 2015) when he choked in his blood and they had to resuscitate him. Secondly (April 6th 2015) the next day, they said that they will take him off live support if they did not receive a liver. (Afterwards the doctor said Willie was already "one foot in heaven"). April 7th 2015 they received a liver and he had his first transplant. Third time (April 11th 2015) after the first liver failed. Thank God, they received a second liver. With the first transplant he had 4 surgeries in about 36 hours (see below). The doctors said that Willie had a mental disorder because of the trauma caused by the two liver transplants and everything before and during his illness. I believe that his condition was caused by a couple of things. He was bedridden for a long time (71 days in hospital), he was close to death and that weakened his body and his mental state, and he was 9 days in a coma.

                Part of my dairy.

                March 30th 2015 Willie began to struggle with breathing as all the water built up in his body pressed on his lungs and he was transferred to ICU. 

                April 4th 2015. Willie did not know me anymore. I spoke to him but he was too tired to speak to me. 

                April 5th 2015. The doctor told me that we nearly lost Willie the night before as his nose started to bleed and he was lying on his back as he choked in his blood. They resuscitated him. They induced a coma, blocked his nose and inserted a tube through his mouth to help him breath. 

                April 7th 2015 Willie received his first liver and after surgery, he went to "Transplant ICU".

                As from April 7th 2015 until April 10th 2015 Willie was critical and we received good news as well as bad news from the doctors. At first it seemed like the liver started to function but then the new liver also failed. Friday morning April 10th 2015 the doctors told me that Willie was back on the transplant list because the liver failed. 

                I kept praying Psalm 41 "The Lord will preserve Willie and keep Willie alive until his new liver arrives. The Lord will strengthen Willie and sustain him on his sickbed in Jesus Name".

                That evening the doctor called me from the hospital and said that they received a second liver and Willie would go in for a second liver transplant on Saturday April 11th 2015. 

                Saturday afternoon after the second transplant the doctor called me and said that Willie had a better chance to survive.

                April 13th 2015 the doctors took the dialysis off and reduced the medication, slowly started bringing Willie out of the coma.

                April 14th 2015 they took Willie off the life support for his lungs, his kidneys functioned on its own, they stopped the medication and Willie came out of the coma. Willie started talking to me, slowly but clearly.

                April 16th 2015 Willie had a brain scan that showed that there was no bleeding or any brain damage after the coma.

                April 17th 2015 Willie started eating. He spoke to me but his mind was not clear, and the doctors said that he had a mental disorder. 

                April 20th  2015 the doctors told me that Willie's physical condition is above expected, but his emotional condition is so bad that he would have to stay in hospital for at lease 6 months and that he could not handle the trauma caused by the two liver transplants and everything before and during his illness. 

                I searched for scripture and God gave me Isaiah 58:8 which I prayed over Willie - "Then your light shall break forth like the morning, your healing shall spring forth speedily and your righteousness shall go before you. The glory of the Lord shall be your rear guard". I requested that everyone pray this with me over Willie for a speedily recovery of his emotional condition. God answered our prayers!

                God showed me that we had to pray for Willie's soul wounds caused by the trauma related to the surgeries and illness before and during the beginning of his recovery. I searched the Scriptures for verses I could pray over Willie for the healing of his soul wounds. Then I led Willie in prayers of repentance for any sins in his life and after that I led him in making statements from the scriptures to call healing over his soul wounds. God has healed Willie's soul wounds and he came home May 19th 2015, only one month later, and he did not have to stay in a mental hospital for 6 mounts.

                April 23rd 2015 I saw the surgeon and he told me that Willie is recovering according to their expectation. He said we should be patient with the trauma side of Willie's recovery. He told me that Willie had 5 operations, but I only knew about four. He then said that it was the first transplant, the operation in which he removed the packaging, the operation to bypass the blood flow to the spleen and the bypass with the artificial vain at three the next morning (4 surgeries in about 36 hours) and the second transplant 5 days later.

                May 5th 2015 Willie was transferred from ICU to a normal ward and the doctors said that if everything goes well, Willie can go home by the end of May 2015. 

                May 6th 2015 Willie took his first two steps and going home became a reality. 

                May 19th 2015, 12 days before the end of May 2015, Willie came home.

                • Thank you so much for sharing Williws story with me!
                  It's amazing for him to even be alive today, but obviously God wasn't done with him yet, he still had a plan for him and he wasn't going to let someone He needed slip away! I'm hoping that was Gods plan for me at age 60. He still has things for me to do in His powerful name, and as I get stronger I feel more and more ready to do as He asks. I'm waiting on His timing and His will so I'll know which direction to go.
                  You and Willie have been richly blessed not only to have each other but the blessings of health! I can't wait to hear how God uses Willie! It will be miraculous!
                  Jacquie
          • Hi JS,

            I can understand the whole situation what you are going through. All of us who went through this. People tend to think that we will be ok the next day but it takes time to recover fully. The doctors felt it will take me a year to recover fully but I surprised them and started to work part time 6 months after my operation. It was only 3 days a week and then it gradually increased and 9 months after my operation I was back full time at work. It all depends on yourself. The people around you also need to know it takes time for you to recover fully.

            Regarding Caffeine - For the first year after my operation I did not drink any caffiene. Then I gradually started again but I have cut back on it and drink only one cup in a day.

  • Hi Jacque, so happy for you. Of course you know to always stay in close communication with your team. Tell them everything . I'm 9.75 months out. I went through the same aches and pains, low energy. Your body is in healing mode , it will take time... sounds like your doing well though. I had a hard time writing also . I think 6 mos. was my turning point. Take care Jacque be patient.
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