I'm new here, got my transplant for my oldest daughter on Friday. Still feeling rough a lot of pain at site. Dr said he had to cut more then normal.
Still getting used to my new normal. Struggling with drinking the 3 liters of water I was told to drink. Not much of an appetite either.
Any tips or tricks to get things going would be greatly appreciated.
Dear Trident6656,
First of all...Congratulations on your Transplant! It sounds like, you are 'Doing' great 👍.
Yes you Will be Sore, for a time, are you on your Feet🐾 yet...you should/ need to be, by now really. Yes the Water 'Thing'...Yes Quite🙄.
The Sooner that you ARE up walking again, the better- the only 'Proviso' I offer, in your case, is 'Just Check', with the Doctors first- since they had to cut 'a little deeper'. Otherwise CAREFULLY start to walk around, taking as Much Time as you need....This Isn't a race! I found, that despite the Pain/ Dis-comfort, It felt 'Great' being back on my feet😄.
Slowly, Carefully, Purposefully and Deliberately is the 'Key', to your Recovery. If you don't feel 'Confident' then Ask, for some Support- either physically, or emotionally. SMALL Steps, really is, the way to go, you can take my word for this. I had a Transplant, in July 2013, so I am 'A Few Years' further, along The Journey. To begin with you DO 'Stop' at every Station and Signal however, as time goes by, you might get a few Green Lights.🎄 (Best I could 'Find'). Remember that the, Transplant team, are 'there' if you need ANY further 'Support', even if it is 'just' re-assurance.
A couple of days, after My Transplant the Catheter, inside my penis (where else) started to become less/ un- comfortable I called the Duty Doctor, in the middle of the night and,,,she didn't Mind at all. My own Doctors, the next morning, also said that I, had done, the Right 'Thing'. Far Better that I had Told them, than not. So don't be 'Shy', to ask, for guidance, if it doesn't FEEL right🤢.
As regards your appetite? You have had Major Surgery, under General Anaesthetic...what did you expect, less than a week on? If you look at the clock, or you own watch, what passes? that's right TIME...give yourself some! Let's get down to Bras Tacks, you have had an extra Organ ADDED into your body. Holes have been made in both Artery, and Vein- to pick up blood, an extra Opening has been made into your Bladder- to accommodate the extra Ureter...So give yourself Time, to recover, for Heaven's Sake!
Sorry, to be, apparently 'Telling You Off' Trident I Know that you don't Feel Great, right now. Perhaps I DO seem, a little, insensitive- It's just that I HAVE been through, all this, myself. So, please excuse, my Bluntness. I Honestly wish you well, I really do, Trident.
I'll finish, as I started....'You ARE Doing Great' Trident, I'm sure that you WILL be Fine. If you want to Contact Me again, please do, or you can PM me.
Kindest Wishes
AndrewT
Congratulations to the club you may not have wanted to join. I am eight months out and am finally getting my strength and energy back on a consistent basis. Now working out feeling good.
I was very impatient hoping to recover quickly. You have had major surgery and this will take time to heal. Try to walk as much as possible and drink plenty of water. I was told two to three liters per day.
It took me four months to begin to feel any sense of my old self and than another four months to feel really good. I am 64 and age does effect your recovery time.
Be patient keep in contact with your health team and do not be afraid to ask them questions if things come up and they probably will.
Again congratulations and hang in there
Congratulations! My mom is the same age as you. She had her transplant 2 months ago. As her daughter, what would you recommend I do for her to support her during this process? She is doing much better but has times when she seems very depressed and stares at things more than normal.
Now mom is working on balancing her glucose as she is diabetic. We are working on deciphering the best meals for her while helping her enjoy them, its a tricky task because she has 9 other siblings with various opinions.
Your input would be greatly appreciated!
Congratulations to your mother and she is lucky to have you. It is not easy. I cannot offer advice about glucose but my transplant team is concerned that my A1C is on the rise and slightly above normal. Beginning to exercise more rigorously.
As far as depression it is rough. I would not call myself depressed but I have my moments as we all do. Post transplant I was very emotional crying on and off not so much from happiness but from not feeling worthy of such a gift and overwhelmed by another persons selfless generosity. I had been seeing a therapist due to other life events that come in one’s 60’s. My therapist told me guilt or depression was quite normal in these types of medical situations. Instead of being thrilled with a new lease on life I felt anything but. Especially with everyone telling me how lucky I was to have this chance. I was already questioning what to do with my life since I was no longer working.
I am surrounded by a very caring and loving family which has helped a great deal. I am convinced the. medications play a significant role contributing to the exhaustion and the emotional roller coaster that yor mom may be experiencing. What helped was walking outside and in particular giving myself the room to accept my different moods and trying not to fight them. Sometimes easier said then done. I also realized as in all of life we go through phases and no phase lasts forever.
Your mother will get used to her medications, she should begin to feel a big difference, for the better, between three and four months.
One final thought as I have probably told you more than you ever wanted to hear. Your mother will experience this transplant in her own way on her own clock. Give her the room and be patient. Encourage her to speak about her feelings to someone and know many have come before her and have made it; she is not alone and most transplant patients root for and are supportive of new patients that receive transplants everyday around the globe. She is in very good company
Feel free to reach out any time
Thank you so much for sharing your experience. You made great points to think about as I support mom!
I understand, I was not able to drive that much. If I tried to drive too much I would throw up.
I was lucky as I had no pain but felt weak the first week. Each day will get better. Make sure you walk every day as you don’t want to get blood clots. I also did my breathing exercises. You will go through a lot of emotions in the coming months, just stay the course of getting well. Your transplant team is there for you, and if you have any concerns or questions please ask them. As for the water, I use the liter size, so that I can visibly see how much water I am drinking. Try working on 2 Liters and then trying to work up to three or even four. I try to drink water at least every hour, it doesn’t have to be a lot. I am now nine months post transplant and feel pretty normal. Your meds will probably change after your blood draws since the team is trying to figure out what is the right dosage. Don’t be alarmed, we’ve all gone through this. Enjoy your gift!
Hi and congratulations on your gift of life!
Plus: Mom walked a lot. She barely ate but had plenty of fluids to drink. Her care team at UC Davis has been a huge support to her and myself. UC Davis is an excellent hospital her in Northern California, we are forever thankful to them :). Mom shares everything with her Dr's, even if it is a simple question, I always empower her to speak as she only knows how she feels. She does not speak English but that is not a hindrance to get her needs met.
Minus: I see mom experiencing various emotions and her care team suggested that she speaks to anyone she trusts, ideally a therapist so she can express all that she is going through. Mom is not ready for professional help as her transplant was 2 months ago. All this to say, seek emotional support. Perhaps with this forum, friends and family who are willing to give you a listening ear.
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