I was released from the hospital after my transplant on 5/17/22. All of my appointments with the transplant team have been either video appointments or telephone appointments.
My only in person appointment was the stent removal, but I don't count that.
Does it seem weird that they have never laid hands on my abdomen after the surgery? Would you worry?
Are you worried?Might seem a silly question but..
I thought it was weird, because when I was evaluated in March of this year, they told me I would have to drive 2 hours to the hospital for my dr appts 2-3 times/week, but I haven't had one.
I'm not super worried. Some days I am and some days I am not.
My nerves are still waking up and I get pain if I walk too fast. I had no pain walking for about 2 weeks, but now I'm starting to hurt again when I walk. Not Norco pain, but I have started taking Tylenol again. if I don't take it when I walk, I have to take it to go to sleep at night.
I got a kidney pancreas transplant, so I have a seam in the middle, a new kidney on the lower left, and a new pancreas in the lower right (where it hurts when I walk). They ask me about my pain when I push in certain locations. The problem is I don't know if I am pressing an organ or intestines.
Also, I have started gaining weight. I have low blood pressure, so they told me to eat 3000+ mg of sodium every day and either a banana or an orange (for potassium), and drink 4L to 6L of liquid/day, so I wonder if the weight is water weight or fat. I am also supposed to consume 60-90g of protein/day, so I am never hungry.
I gained 15 lbs in the last 3 weeks and they aren't worried, but I am (went from 140 to 155), and have bought some new clothes to walk in, because I have grown 2 pants sizes. In the video chat, they only see my chart and my face and tell me that my tests all look good, so keep doing exactly what I am doing.
They tell me not to worry about my weight or change my diet until I hit 6 months. Will I be 200 lbs by then?
That policy is in place likely to protect newest patients since clinical setting increases the risk of catching COVID. That being said, if you would like them to examine your wound healing you should feel free to request an in person appointment.
I do think that is weird (even with Covid increasing). I would think your PCP could at least look at your incision and have “eyes” on you, so you don’t have to drive 2 hours to a busy hospital. Definitely reach out to your transplant team with your concerns. If possible, I’d put it in writing.Good Luck and Congratulations!
My wife had her transplant 1 year ago. She was seen every 4 weeks or so by the Post Transplant team all thru the pandemic. We found that each consultant said opposite things about drinking water so in the end my wife just used common sense. Listen to what the docs say, be prepared to ask why, study your blood test results and use some judgement. Do query any blood test readings that are out of range (and weight) to test what the Docs are thinking.
Yes I do think that it is a little weird I am 18 months out post transplant for the first couple of months I was going up to see my transplant team every week. I think that if you are concerned that you need to call your transplant team and request an in person visit. I also have to drive two hours into my transplant team and Charlston South Carolina, but it is worth it to me, you have to be an advocate for yourself!! Good luck and blessings to you! 🙏
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