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?

@jeanne5009

@heart people
Im having some heart issues to go along with my Stsge 4 cirrhosis. Mayo is going to check me out so I will be asking you all to share with me.
Ive had this liver stuff for 3 years snd understand it pretty well…the heart is a whole new ball game. I need a new dictionary for this!! Will keep you posted

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@jeanne5009 I’m sorry about your heart issues, you surely do not need that on top of cirrhosis. I hope it does not turn out to be too serious.
Have a great time with your daughter. I love it when either my daughter or son visit.
JK

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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@rosemarya Please take good care of yourself!

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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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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@glinda

Hi Rosemary, I'm actually doing good it's been 1 year and 1 month since I was hit by the car but I'm getting stronger everyday I passed my yearly physical in January of this year it's hard to believe I am 8 years post transplant(heart) I have finished physical therapy now and I work out at the YMCA here but found out that my right leg has arthritis in it now where the steel screws and plate is that's the only thing that isn't as strong as I would like is my right leg the pain never goes away and I can't take any anti inflammatory medication for due to transplant I still struggle with anxiety and the PTSD but I thank God for my counselor she helps a lot the only problem I have is I still have brain fog after all the surgeries I had to have last year and it frustrates me because I have trouble remembering the dimple things that I used to know and remember just wanted to say Hi and update everyone on how I'm doing I may not be on here a lot but I try to check my posts for mayo connect every day I'm just working on getting stronger and better right now thanks for listening when I need to talk.
Always Glinda

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@tbirdmunchkin @glinda, I am so happy to hear from you!. Happy belated 8th Heart Transplant Anniversary! I know that you have had a difficult 2018, and I hope and pray that 2019 will be filled with new blessings for you. You are fortunate to have found good support with your counselor, too.
I understand the inability to take anti inflamatory meds, but do you know whether the pain will ever become less severe? My experience is that I take longer to heal since my transplant, like when I get a sprain, or currently, plantar fasciitis. (which is nothing in comparison to what you have)
I thank you for reaching out and sending your update. Drop in when you feel up to it.

Hugs, Rosemary

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@rosemarya

@tbirdmunchkin @glinda, I am so happy to hear from you!. Happy belated 8th Heart Transplant Anniversary! I know that you have had a difficult 2018, and I hope and pray that 2019 will be filled with new blessings for you. You are fortunate to have found good support with your counselor, too.
I understand the inability to take anti inflamatory meds, but do you know whether the pain will ever become less severe? My experience is that I take longer to heal since my transplant, like when I get a sprain, or currently, plantar fasciitis. (which is nothing in comparison to what you have)
I thank you for reaching out and sending your update. Drop in when you feel up to it.

Hugs, Rosemary

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Hi Rosemary, hope you are feeling better, I do take longer to heal myself since the transplant the doctors tell me the pain will ease up eventually but all I can do is wait exercising at the YMCA helps I find and as long as I don't sit for a long time or stand for a long time it's not do bad the pain is better when I'm moving sleeping is the hardest for me as I can't straighten my right leg out all the way it is always slightly bent even when I walk which is only about 10minutes at a time the walking I mean it's not easy but I won't and don't give up on myself I hope to be able to walk at least 10 thousand steps again some day but not up or down hill as I can't even do stairs except for one step at a time. It wouldn't be do bad but I'm not allowed to live by myself now because of the risk of falling my transplant team won't let me so I have been staying with a friend since the accident and my friend drives me crazy sometimes as always telling me what I can and cannot do but I have to admit that I have pushed myself to far a couple of times and severely over did things when my body isn't ready for 2 to 3 hour standing especially in a line. So I guess my friend has the right to boss me around for my own good. Take care
Always glinda

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@danab

Ive had those low fevers also and usually a couple of Tylenol and that takes care of it. Luckily I've never hit the magic 101.4 level the drs required a phone call. I think its due to dyhadratetion also and that was confirmed once with the team. I myself are doing good but still fighting this side problem of CMV from the donor heart and Parvio B19 virus. Neither causes any symptoms but twice now i had to get whole blood due to low hemaglobin. They tried this last time a week in hosp to receive IVIG antibodies and will find out in a couple of weeks if it killed the b19. But i feel great working out and playing golf no real complaints.

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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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@tbirdmunchkin @glinda, @cmael, @hopeful33250, @contentandwell, @jeanne5009, @danab
I almost forgot to send my update-I'm back to normal today.
Thanks for your input. I have not seen any talk of slight fevers. But I do get alarmed due to a couple in my history that were cause for concern.

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@glinda

Hi Rosemary, I'm actually doing good it's been 1 year and 1 month since I was hit by the car but I'm getting stronger everyday I passed my yearly physical in January of this year it's hard to believe I am 8 years post transplant(heart) I have finished physical therapy now and I work out at the YMCA here but found out that my right leg has arthritis in it now where the steel screws and plate is that's the only thing that isn't as strong as I would like is my right leg the pain never goes away and I can't take any anti inflammatory medication for due to transplant I still struggle with anxiety and the PTSD but I thank God for my counselor she helps a lot the only problem I have is I still have brain fog after all the surgeries I had to have last year and it frustrates me because I have trouble remembering the dimple things that I used to know and remember just wanted to say Hi and update everyone on how I'm doing I may not be on here a lot but I try to check my posts for mayo connect every day I'm just working on getting stronger and better right now thanks for listening when I need to talk.
Always Glinda

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@glinda Hi, I read your post with interest relating to arthritis and pain following trauma, as I have experienced similar issues. The "no anti inflammatory" medication ban is a tough one and I have looked extensively for alternatives. Some of the things that have worked for me are: #1 heat/cold, alternating or whichever works best for you. It helps with the arthritis either way. Cold reduces the inflammation and heat gives relief. My mother will only use the heat and gets the most relief from that. I alternate and use #2.
#2 Pressure. I have several rice filled pillows/pads/tubes that can be chilled or heated (seconds in the microwave and watch heat level carefully) that I place strategically.
#3 definitely exercise daily but only to the point of feeling it plus one so that you do not overdo. seven 7 – 100 step walks equals 700 steps. they do not have to be done all at once. make sure to go lightly if you are having a bad day, go – but lightly. this is a marathon, not a dash.
#4 use cushions/pillows/pads to position yourself for the best posture and relief when sitting and standing. I use a recliner a lot and have a memory foam mattress, they work well for me with my stabilizing adaptions.
#5 If you like cooking you can break prep steps into several sessions. I sort into chopping/slicing veges, protein prep, and spice prep. I use carrots, onions, celery, green peppers, cabbage and ginger often. You may have to do only one at a time. That is okay. Get them all washed up, slice, wash cutting board and knife and set aside for your next session. It took me 4 days the first time I was able to put together Corned Beef and Cabbage. This counts as standing and a little walking. It also works on your hand/eye coordination and balance.
#6 Massage from a massage therapist. I like deep tissue, but find the kind that works best for you. It is a treat and helps with soothing those angry muscles that you want to heal faster than fast.
#7 You might want to try pressure point massage or acupuncture. Pressure point from the deep tissue massage works for me but the acupuncture did not.
#8 If you are in physical therapy, you might ask about dry needling. it is similar to acupuncture but goes deeper and works on breaking up scar tissue and engaging your neurosensors. That really helped me the most and really kickstarted my physical therapy.
That is a lot, and just suggestions from my experiences. Try what you like and I certainly hope you find relief and forward advancement you need and are looking for. Blessings

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@rosemarya

@tbirdmunchkin @glinda, @cmael, @hopeful33250, @contentandwell, @jeanne5009, @danab
I almost forgot to send my update-I'm back to normal today.
Thanks for your input. I have not seen any talk of slight fevers. But I do get alarmed due to a couple in my history that were cause for concern.

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@rosemarya I am so glad you are feeling better. I know, almost anything can be a scare for us post-transplant patients. My husband really gets concerned.
When you had fevers in the past that did end up being cause for concern, how high were they?
JK

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@cmael

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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@cmael My goodness, you have had more than your share of problems recently. I am very sorry about your husband, son-in-law, and dog. My daughter's little dog also has kidney disease and has been getting progressively worse. She was diagnosed about two years ago and on medications but is now taking a turn for the worse. She is my daughter's baby, and I know how difficult it will be for her when she passes.
I hope your appointment at Mayo goes well, it sounds as if it should. I actually sort of look forward to my yearly appointment at MGH, it reassures me that all is OK.
Let us know how things turn out at Mayo.
JK

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@cmael

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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@cmael, I feel good today. think I just needed a little reminder to slow down a little 😉
I hope that you will get that good report after your checkup. Hearing the words,"See you next year" has a beautiful sound!! I am sorry that I won't be in Rochester same time as you this year, I will be there end of April. I so much enjoyed meeting you and your family.

I hope that life's events will settle down for you and your family.
Let me know how your visit goes?

Liked by cmael

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@rosemarya

@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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@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.

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@danab it’s such a great feeling to be able so much behind you. For me, every day is a gift now.
JK

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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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@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

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