Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3840
Joined: Aug 30, 2011
This and That and Talk - My Transplant
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?
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3840
Joined: Aug 30, 2011
@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.
@2011panc, Thank you for your kind words. I am quite stunned to read of your awful experience. You have had a really hard time of it. And what a blessing that it did turn out to be a good thing when you had to go to the more distant hospital. I believe you had eyes watching you from above for that to occur.
Hopefully you will be able to return home soon – by car! Ambulances are not my choice for travel.
Is your pancreas going to be okay? I hope your kidney function will be okay, too.
I look forward to joining you for a happy dance when you get back to your December conditioning!
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Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3840
Joined: Aug 30, 2011
@danab Yes i saw @glinda and yes my case is a bit different. Up until nov 2017 i was still working and doing pretty much everything else but the arruthmias would still plage me and they were getting more frequent. Well its a long story and the meds and pacemaker that were keeping me normal somewhat were starting to take a toil on my body and in nov and dec they tried some more ablations. My injection factor was low but not the main problem in dec it was at 30 to 40 but the anti arrythimia meds were not working anymore and i was getting shocked more often by my pacemaker to stay in rythme. Well by December iv anti arrythmia drugs damaged my thyroid and it was removed and then the drugs became toxic they thought i had a stroke. During this time i was being evaluated for a heart transplant and they were still trying to find some treatment for my old heart. Well finially about the last week of December i was approved to be placed on the transplant list. At first i was a 2. But with me still having multiple arrythmias a day and some bad enough to get shocked they felt the only alternative was transplant. I was raised to a 1b at this point. Well the Lord was watching out for me and on the 5th of January the surgeon came in with the best news. A Heart was available and did i want it. It did have a bit of a problem the donor had CMV and i had not had it (at the time he couldn't tell me why) But it was still better than what i was going thru. So here i am very happy with my new heart and no more pacemaker, shocks or waking up to arrythmias thank you Lord Jesus, he must have work for me yet. BTW my injection factor now is 68 my old heart on its best days were in the 40s before.
@danab, Thank you for sharing your story. It is amazing how perfect the timing worked out for you. I get chills just thinking about the doctor coming in to tell you the good news of an available heart. I can clearly remember the exact moment when I got my call from my surgeon, it's as if time froze for that moment.
Thank you for telling me about organ transplant from the perspective of a heart transplant recipient. Life is a gift!
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jeanne5009
@jeanne5009
@jeanne5009
Posts: 165
Joined: Feb 04, 2018
@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.
@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!
2011panc
@2011panc
@2011panc
Posts: 351
Joined: Nov 14, 2016
@jeanne5009 @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!
@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.
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2011panc
@2011panc
@2011panc
Posts: 351
Joined: Nov 14, 2016
@rosemarya @2011panc, Thank you for your kind words. I am quite stunned to read of your awful experience. You have had a really hard time of it. And what a blessing that it did turn out to be a good thing when you had to go to the more distant hospital. I believe you had eyes watching you from above for that to occur.
Hopefully you will be able to return home soon – by car! Ambulances are not my choice for travel.
Is your pancreas going to be okay? I hope your kidney function will be okay, too.
I look forward to joining you for a happy dance when you get back to your December conditioning!
@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.
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2011panc
@2011panc
@2011panc
Posts: 351
Joined: Nov 14, 2016
@contentandwell @2011panc You have really been through so much. I am glad things are finally looking up. These immunosuppressants can really be a nuisance, but we have to have them. I hope now that things are settling down, they will stay that way.
I am very happy for you to be on the other side of all of this. What a relief for you.
Yes, long ambulance rides can be tough. I had one to Boston, about 55 miles, but that one actually wasn't bad. My blood counts were very low so they didn't want my husband to drive me, they felt I could go into cardiac arrest. I felt fine though, just tired, and the EMT with me was very friendly and we chatted all the way!
I had a number of ambulance rides to my more local hospital, about 10 miles away, and I hated them.
JK
@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
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2011panc
@2011panc
@2011panc
Posts: 351
Joined: Nov 14, 2016
@jeanne5009 @rosemarya
Out of the question…you are not allowed to be sick! I dont know how these things go but how long afer transplant do you worry about rejection? Curl up and snooze…drink lots of fluids and take what ever mefs you have been instructed. Of course its Saturday…just to make us worry a little more…lol
I go to the local cardio Dr. On Monday to see what he thinks. I had an ultra sound and bloodwork and will discuss all that with my PCP Tues. Have a 2 day appt with Mayo in Jax on the 16th. Thats a 4 hour trip but always well worth it
The good news is..my faughter Emily is coming to FL to visit next Sunday.
We will be doing some serious boating and beaching!
Please keep us posted…Im sending uou virtual hugs, prayers and chicken soup!
@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.
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jeanne5009
@jeanne5009
@jeanne5009
Posts: 165
Joined: Feb 04, 2018
@2011panc @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..
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JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 4501
Joined: Feb 18, 2017
@2011panc @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.
@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
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gaylea1
@gaylea1
@gaylea1
Posts: 242
Joined: Mar 09, 2018
@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. 💓
REPLY
gaylea1
@gaylea1
@gaylea1
Posts: 242
Joined: Mar 09, 2018
@2011panc @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.
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.
REPLY
2011panc
@2011panc
@2011panc
Posts: 351
Joined: Nov 14, 2016
@contentandwell @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
@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.
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JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 4501
Joined: Feb 18, 2017
@gaylea1 @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. 💓
@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
danab
@danab
@danab
Posts: 131
Joined: Oct 18, 2018
@contentandwell @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.
REPLY
@rosemarya
In reply to @jeanne5009
@jeanne5009, I followed your orders😊 and am feeling like myself again.
I hope that you get some answers about all of this. At least the ultrasound is an easy procedure. Let me know if the cardio doc takes as much blood as the liver docs. I will be thinking of you for that 4hr drive, hopefully nice weather. I will think of you on the 16th and pray for a good report in JAX.
Enjoy the time with your daughter! Sounds like fun plans.
I look forward to hearing about your medical report, and about your boating adventure !
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