This and That and Talk - My Transplant

@rosemarya Thank you. My pancreas is in fine shape. I was quite concerned the first day of the increased steroid load because it bumped my sugars above my normal and I became fearful of failure of the transplant. Thankfully that resolved within 24 hours and my sugars are steadily down to around 100 with a few up to no more than 114. I know that is a stringent goal, but I am comfortable with it. I am not panicking when it goes higher, but it sure gets my attention. I realize I am oversensitive after decades of rollercoaster 40-over 300 blood sugars.
My kidney tests are better than when I was admitted because there is a load off with treatment of the bladder infection. I can now be confident that this will not progress to a kidney infection and give me increased kidney damage. My eGFR has gone from 24 to 29 in just a few days. That relieves another stressor.
I am going home with better test results than I have had for months and so grateful for the wonderful workings of God and man to make such things possible.
I always remember that more than one life has been sacraficed for me to be here and I feel responsible to use my time wisely.
Blessings for your health journey as well.

@contentandwell thank you for your response. Regarding ambulance rides, we have a freeze/thaw situation every winter that destroys our streets, so this time of the year they are very rough either with cracks/potholes or ice/slush buildup. Ambulances pick up and magnify every bump, so both rides last Thursday were quite rough, so much so that it took up to 4 tries over one stretch to get a blood pressure reading. The longest land ambulance ride I have been on was over 300 miles that takes 5 hours by car. It took significantly more time in the ambulance. Thankfully they sedated me for part of the drive but left my shoes on and my heals were sore for two days after. That was the worst one. Besides the stress over transporting my newborn in a terminal state, my air ambulance ride was quite pleasant and enjoyable. I was distracted by the experienced and caring pilot pointing out terrain and landmarks to distract me from the code status activity behind me. Stressful, but a good result. That child is now 40 years old. Interesting that we, desperately sick people, become experts on such things as emergency services, isn't it? Blessings

@jeanne5009 I was caught up by your question "how long after transplant do you worry about rejection?" For me I don't think it will ever leave my mind. This foreign organ is a lifeline for me that, if severed, will throw me back into a world of chaos and turmoil that I never want to see again. That may sound ominous and dramatic, but for me (8 years out) rejection symptoms it is on the daily checklist.

@2011panc
As I figured...you put it so well too. I expect it to be something in me that I will treasure..and protect..like a baby. AND we know for sure we dont want to go back to that place in time of misery. Thanks for sharing..

@jeanne5009 @2011panc When we asked my transplant surgeon about the worry over rejection, he was very reassuring. He told us to not worry, they can handle it. I trust him. I think if that ever does happen they will be able to handle it.
When I went in the hospital for what turned out to be Legionnaire's disease one of the first questions they asked me was if I was taking my immunosuppressants. Most of the time rejection happens because people have skipped them.
JK

@rosemarya . Hello Rosemary. Just a quick update on my last ERCP to place stent in my bile duct. They managed to insert a plastic stent without causing any pancreatitis this time. 3rd time lucky? They are going to replace it the 3rd of June with a metal stent. Hopefully this will go smoothly. I still have no feeling when touching my stomach and I can feel all sorts of scar tissue below the skin both sides of my scar and into my right side. My appetite is still off and it hurts if I eat more than a few bites at a time. We are now 4 months post transplant. My energy has not returned yet and I still get dizzy walking or moving about. Just taking one day at a time for now. 💓

I often wonder about rejection as well. I suppose for me it will always be a cause for concern. I am only 4 months post transplant.

@contentandwell You are so right. Transplant recipients often worry much more than they need to. Because I have so many "pots cooking at the same time" I have a daily checklist I go through. It is not obsessive, more of a "if/then" elimination balance sheet. If all systems are good the checklist is done. If something is off I have to decide "emergent/watch" If emergent I have to decide "my solution/need help" And so on. That works for me and gives me comfort. I like not having to fix anything; I also like to know how to get a fix if something needs it. I still use that security blanket.

@gaylea1 It can be a long process, but you are making progress. I am sorry your recovery has been so difficult and lengthy. Your energy will be back any day now. I am sure of that. I know I didn't have any real problems after my transplant but it did take a while for the energy to get back up there where I wanted to be. I took naps in the afternoon more often than not.

Don't worry about rejection, as long as you take your immunosuppressants. I often think, what would I do without my smartphone to remind me? They are Godsends when it comes to things like this. It's easier for me now because they switched me to a once a day immunosuppressant so I get up at 6:30 to take them, and return to bed, hoping to get some more sleep in before getting up for real at 7:30. I do that so I can take them without food and take a smaller dose. When I started that I went from four mg to 2.5 mg. It's easier too when traveling to take them without food. When we have visited our son in Denver I just get up at 4:30 their time to take them, and since I don't need to take them with food that works out well for me.
JK

I think now 14 months post i worry less i guess for me that i never even came close to rejecting and after what seems like a dozen biopsy I don't remember how many and they were all negative so when i do remind myself of that. The other thing to is i remember my team told me that even if they saw a rejection it usually only meant they would increase my meds to take care of it.