This and That and Talk - My Transplant

@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything you need to know about your tests and procedures. It is either mailed, or given when you arrive for registration.
Be prepared for a marathon-like adventure! Dress comfortably, and carry a light jacket or sweater. Don't be alarmed if you schedule is changed as you proceed through the testing. Sometimes things are added and rearranged, but you will be informed as the day goes on.
I'll be thinking about you.
Rosemary

@rosemarya Rosemary, are the UTIs due to having a weakened immune system from the immunosuppressants? I do not generally use the hot tub at my health club because I am afraid of UTIs. I spoke to my surgeon about it and told him I only use it when I have been in the pool for a while and the hot tub has been unoccupied so I figure the chemicals would have killed any bacteria by then. He left it up to my discretion on whether I used it or not.
When I had my first HE episode and went to the outpatient part of the hospital on Christmas Eve, 2013, part of my diagnosis was that I had a UTI and apparently in some older people UTIs can cause confusion, similar to HE episodes. Now they realize though that urine is not sterile (they used to think it was) so if the bacteria count is low it may well not actually be a UTI. I doubt it was then, nor a couple of more times after that when I showed a low level of bacteria. Still, I worry about UTIs now due to the immunosuppressants. Do you use a pool or hot tub that could cause yours?
JK

@contentandwell and @rosemarya I also have a history of frequent UTIs. My physicians have explained that: 1-My frequent loose stools may set the stage for bacteria to migrate into the urinary canal. 2-The bladder is never completely emptied and because of immunosuppressant's and my other gastric issues the residual urine may be over-colonizing with bacteria. 3-If I don't drink enough water to urinate every two hours I increase the probability of bacterial overgrowth in my urine. and 4-Make sure to wipe front to back after toileting (I know, but they always say this, lol). Despite all that info and following those practices I still developed UTIs and am now on a prophylactic antibiotic to reduce the amount of my UTIs. I am not drawn to water so I do not sit in hot tubs and rarely take a bath. I can't get past the thought of all those germs waiting in the bottom of the tub to climb all over my body. lol I can attest to the fact that UTIs in the elderly can cause confusion. My mother had an extended UTI last year and ended up in the hospital in full-blown dementia. Once the infection was cleared she returned to her usual state of cognition. She does not even remember that hospitalization.

Yes it is online in the app. There are already 22 appts. The first day is tight—but I will give it my best. What is a study visit? My guess is what clinical studies are open? I have some problems concerning my esophagus but I don’t see any appts that look at it. But then again I don’t know if there is room. My heart, lungs, and kidneys are having a thorough look. I think it also makes your local doctors take a second look at their work. I am more excited than anything. Thanks for alerting me to be prepared for change along the way- i would have imagined all sorts of things.

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

@animesh I am sorry to hear of your wife's condition. I too got the to the point where transplant was the only option, and that was done in September of 2016 at Mass General Hospital.
I hope all goes well for you at Mayo. Had I not gotten the transplant center when I did I would have dual listed at Mayo. Boston, like CA, tends to transplant at higher MELD scores due to the demand. Due to convenience I hope you will register too at UCLA medical center, they also have a very good transplant program. For me convenience was the deciding factor in staying in Boston, I live in southern NH, but I could not have been happier with the program there. If your wife's blood type is B or A, or AB, the transplant will likely occur at a lower MELD than if she is O type.
My husband was an excellent caregiver, sometimes a bit too solicitious, but overall he was really good. I am sure you will be too.
JK

@2011panc Reading your post I am amazed that I have managed to avoid UTIs since my liver transplant. My stools are loose, for which I am taking metamucil twice a day but I still have problems, I have incontinence problems and I know that my bladder does not totally empty. I do drink a lot of water though, something stressed to me to keep my kidneys flushed and keep my creatinine level down. The last cause of course is something we have all been warned about for many years.
Interesting that your mother did have a confusion episode from a UTI. I guess they were right but when I think that they thought they thought that was causing my confusion problems for so long it boggles my mind that combined with my lowering platelet count no one had a light go off in their head that maybe they should look at my liver! I realize now how many symptoms I actually did have.
As I said, I very rarely go in the hot tub at my health club. Many of the people in the classes do go in afterward and that becomes a social thing but I avoid it, go and take a shower, and use the sauna. I would enjoy the sociability but it's not worth it.
JK

Prayers. You have to do the physical therapy that is in your future. After the doctors do their magic it will be in your hands. The first daythat the pain is gone will make it all worthwhile but it is a tough road. You can do it.

@rose999 Thank you.

@2011panc, I am also hopeful for a resolution to your pain. I know that you have struggled with this for a long time. I am going to pray for you and for all of the members of your medical team.
Will you be traveling to Rochester for this?
Have they told you whether you can anticipate a "normal" recovery, or does your transplant affect this, too?

If you haven't already met our moderator, Justin, @JustinMcClanahan , I would like to introduce you to him. I know that you have a history of self advocacy and self care, but he is our moderator in Bones, Joints and Muscles. I know that he would welcome any questions that you might still have.

Gentle hug,
Rosemary