This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

2011panc | @2011panc | Apr 1, 2019

In reply to @contentandwell "@jeanne5009 @2011panc When we asked my transplant surgeon about the worry over rejection, he was very..." + (show)

@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 | @gaylea1 | Apr 1, 2019

In reply to @2011panc "@jeanne5009 I was caught up by your question "how long after transplant do you worry about..." + (show)

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.

gaylea1 | @gaylea1 | Apr 1, 2019

@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. 💓

JK | @contentandwell | Apr 1, 2019

In reply to @2011panc "@jeanne5009 I was caught up by your question "how long after transplant do you worry about..." + (show)

@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

jeanne5009 | @jeanne5009 | Apr 1, 2019

In reply to @2011panc "@jeanne5009 I was caught up by your question "how long after transplant do you worry about..." + (show)

@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..

2011panc | @2011panc | Apr 1, 2019

In reply to @jeanne5009 "@rosemarya Out of the question...you are not allowed to be sick! I dont know how these..." + (show)

@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 | @2011panc | Apr 1, 2019

In reply to @contentandwell "@2011panc You have really been through so much. I am glad things are finally looking up...." + (show)

@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

2011panc | @2011panc | Apr 1, 2019

In reply to @rosemarya "@2011panc, Thank you for your kind words. I am quite stunned to read of your awful..." + (show)

@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.

2011panc | @2011panc | Apr 1, 2019

In reply to @jeanne5009 "@2011panc Wow..you live an exciting life! Lol. Im just waiting for a transplant and have all..." + (show)

@jeanne5009 Thank you. I want to add a cautionary tone for those reading any of my posts. I have extensive autonomic neuropathy, which affects a person's entire body system of nerves. Which in turn affects the working of any part of the body at any time. Because of that, when anything goes wrong for me in one area things can easily snowball into a domino effect that can then affect my all of my bodily systems. That is why it sometimes becomes so difficult to treat because the presenting symptom may be a secondary (or further) issue that will not resolve because of the underlying source(s). Hopefully and prayerfully you do not have to deal with everything that I do. I just remember that God always has a reason, my job is to find out what I need to do to fulfill His purpose. That keeps me going when I get tired. And, YES! I am going home in my own car to my own home and routines! More happy dancing! Blessings to you now and for your transplant life.

jeanne5009 | @jeanne5009 | Mar 31, 2019

In reply to @2011panc "@rosemarya This is a perfect update time for me. I was just thinking about posting and..." + (show)

@2011panc

@rosemarya This is a perfect update time for me. I was just thinking about posting and deciding where to post it. Thank you for sharing and asking about all of us. I don't often have much to say, but I appreciate the significant work you do as a volunteer on this site. My deepest thanks.
Beginning in January one of my immunosuppressants was changed. I did fine for several weeks until there was an extremely low test. I believe my current care team (which does not have much experience with me on this medication) overreacted. I was working with two different people and conflicting information was being given and orders written. I disagreed with their plans of care but followed orders as closely as I could figure out to do. The end result was that the initial order was an overcorrection and the resultant change was still too high. At some point I developed a UTI from a germ resistant to the prophylactic antibiotic I was using. That test result was disregarded because I was on an antibiotic. The report on what antibiotics the bacteria was sensitive to was not checked until I sent in information that I was hospitalized last week.
I have to step back in the story now to the point of the immunosuppressant dose. I react quickly and badly to increases in this particular medication, so having many quick up and down test results and changes of dose brought on an autonomic response. My fatigue was increase, nearly immobilizing. My tremors were increased and my focus was nearly non-existent. This is when I believe the UTI began secondary to increased bowel irregularities and reduction of bladder control.
The beginning of February I had an extreme vasal vagal reaction with sweating, severe fatigue, loose stools and stomach pain. I called my husband to help me try to figure it out. We determined that it was not low blood sugar and were trying to think of what else to check out when I went into a blackout, resulting in an ambulance and the ER. All labs came back with range or my trending so I was sent home to follow up with my primary. He concurred with the ER docs impression and we had no immediate action solution so were watching the situation. No additional labs work was done after the ER.
Mayo's response was to come down to determine if the CMV mismatch with my donor was involved. I hoped to determine this through lab work at home but they preferred me to go in. The week before last we were in Mayo and determined that there was no problem with the CMV but that my urine bacterial count was over 100,000. I did also visit with a gastroenterologist and have a kidney ultrasound. We were glad to have had the ultrasound results.
Now we are back to where I stepped back. Last Thursday I had another vasal vagal episode, ambulance and ER visit. That visit they did a CT scan of my head and now the high bacterial count was addressed. They started me on IV antibiotics and wanted to admit me to the hospital, but the ICU was filled, so I was required to go to the nearest hospital able to accommodate me, 100 miles from home, by ambulance. I really do not like long ambulance rides. I mean REALLY!
This has been a good admission for me. I have seen a neurologist, nephrologist, OT, PT, IV antibiotics, fluids, medication adjustments and improved immensely. I have been cleared by all except Nephrology, Speech and OT and am waiting one more test result before I can go home. That should be Tuesday for sure, possibly tomorrow.
Happy dancing for me. It will take a little time to get my fitness back to where I was in December but at least I am on the way.
I apologize for the length of this update. I know it is a lot, but it is easier to write at/near the end than during for me. Thank you everyone for caring for everyone else on this site. It is such a comfort knowing you are all here even when I am not. Blessings to all.

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@2011panc
Wow..you live an exciting life! Lol. Im just waiting for a transplant and have all this excitement ahead of me...
Im learning from everyone on this site and it helps me to accept my future.
So glad you are improving and going home...not in an ambulance!
Keep sharing when you can...and never doubt your instincts!

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