This and That and Talk - My Transplant

Rosemary, I hope your fever is not because of anything significant and that you’ll feel better soon.
I’ve had some stressful days with my husband in the hospital because of a blockage in his small intestine. He’s been home for 2 1/2 weeks and finally is close to recovered. Last Sunday our son-in-law had a heart attack. On Sunday night our little dog Bella died after finding out a week earlier that she had kidney disease, at a cost of almost $500.
The good news is that today we leave for Rochester Mayo for my one year checkup. My blood work has been coming back normal and I feel good so I’m not expecting any problems, but there’s still some anxiety. My donor daughter will come with to have her blood work and urinalysis and will keep my husband, who has dementia, company. 🤞

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@danab - Thanks for your reply. I probably tend to get over anxious and concerned about temperature because I have on several occassion experienced sudden spites that required treatment.
Wow, a week in the hospital. -And to think that I dreaded my temperature! Actually I was hospitalized once with sepsis, and I will not forget the fear and the ER and ambulance ride. It is a memory that my husband and I never want to relive. That is why I easily get overly concerned. - I hope that you get good results.

I am happy that you are able to get out and enjoy your life! I imagine that your golf and working out are double blessings since transplant. I have no experience with heart transplant, but from what I have seen and read, you must have been unable to do those things.before. Did you play golf before your heart transplant? I would bet that you enjoy it more now? Dare I ask if your score has improved?😉

Have you met @tbirdmunchkin @glinda who posted recently? She also is a heart transploant recipient.

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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.

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@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!

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@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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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.

Jump to this post

@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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