Day 4 Transplant Update

[Dana M Simone]

Jack moved from ICU to the Transplant unit Wednesday night. The staff is great - very intent on educating us about the new med regiment - meds to fight rejection, infection, hbp. Central line for dialysis was removed yesterday:)!Electrolytes have been on the low side, so Jack is getting IV sodium, magnesium, phosphorous, and drinking those delicious potassium powered drinks. 

This morning's labs include: Creatinine: 0.51, HCT: 30.6, HGB: 10.9, PLT: 191.

I'm a little nervous about the next few months - will need to find a balance between thinking Jack needs to be totally isolated and living a normal life.  I would love to hear feedback from our transplant community - thank you!

[Cheryl Biermann]

Thank you Maria for the detailed information, all great points.  I hope you all enjoyed a wonderful seashore visit!  It would be wonderful if you could post a new picture of Jose, children change so quickly!

[maria vicenta carratala rios]

Precautions to consider include hygiene, long fingernails cut will always have to wash  the hands before every meal, do not share bottles or glasses, the same with towels,during  a year it is forbidden kissess, straight in the face of risk of infection, avoid places like movies , no restaurants, nor stuffy, as if going to school . Very important to check if a wound infection and risk of carrying Soliris as my son be aware if there are temperature and go to the hospital. I hope I've helped. Today Jose transplantation 9 months ago, this night is a tradition to go to the seashore and make three wishes and make a fire because it is a magical night. Last year we went and asked the desire for Jose, in a month he was granted compassionate use of Soliris in the following month they put on a waiting list and September 23 ended his dialysis about  13 hours  and 4 hours later  we were called because there was a kidney to him.

[Dana M Simone]

Great idea, Linda!  It is so comforting to converse with others who are on the same journey!

 

[Linda Burke]

Soooo happy to read of all this good news, and on so many fronts!  Dana, would it be helpful if you 'transplant Moms' would start a permanent "Kidney Transplant with Soliris Therapy' Forum?  That way you all could share information and it would be archieved in one set place - a Forum where you could go back and read issues, comments, and sucesses.  Whatdya think, transplant Moms?

[Kathy Yates]

Yes, after Brandi's transplant whenever she was in large groups she had to wear a mask, but it was only for first 2 months post transplant. When we would have company visit our home, we had a large bottle of hand sanitizer at the door for them to use. Perhaps we were over cautious, but for us it was better to be safe than sorry. For bp meds, Brandi is still on one, but her bp is much better, so am hopeful that she will have it taken away. Am hopeful that this was helpful for you:)

[Phyllis Ann Talbot]

Dana, we didn't do masks (also Hyde is allot younger than Jack so it's a lot harder to reason with him/ explain why he should wear a mask. We really didn't take him many places @all for the first couple of months other than the hospital for clinics. Avoided restaurants, grocery stores, etc. But that was honestly just in the very beginning and have since added them almost all back in even including one of the cursed jumpy places ;-). We are waiting until after 6mths before we do any airplanes / airports but that's about it. Oh
, and for the BP meds it did take a bit we were adding the. Back in for the first week or two and then he leveled out and improved after that. Might have been 2 mths post plant before we dropped them all. And honestly it was a great surprise. We thought he'd have @least one maybe 2 forever.

[Dana M Simone]

Thank you...it is so good to hear that we don't need to keep Jack in a bubble!  He's a little bummed out because he planned on working as a camp counselor again this summer (town program), but his doctors vetoed that - I would rather be safe than sorry these first few months.

Phyllis, that is such great news about Hyde's blood pressure! Jack's bp is still a little high and he is continuing with Nifedipine and Carvedilol...will be really sweet if those go away!

Jack has a question for the group - what about masks? He's been cautioned to wear one in any public areas and whenever we come in for clinic...did you all do the same?

He's really psyched to hear about swimming...like Brandi, it's been years since he's been able to go in any pools, etc!

 

Ja

[Grace]

I'm so glad to hear that Jack continues to do well. I hope you are all managing to get some sleep and recuperation. I found when I had a functional transplant that I was actually less susceptible to colds and such because my overall health was better. I'm sure you and Jack will intuit what the right balance is.

[Kathy Yates]

The first 2 months were the hardest on us with Brandi. We kept her out of school the first 2 months post transplant, then after that she resumed normal shool activities. She has done good to date! She did have a bad kidney infection about a month ago, but that was expected (at least that was what our doctor told us), she is back  to her normal self. Going to the pool is her favorite thing to do this summer, she went two summers where she couldn't go. Jack's levels are awesome, they are better than Brandi's. Am so glad to hear things are going so well.

[Phyllis Ann Talbot]

Hey - don't make me jinx anything but so far so good for us - and i'd think Jack would be a little better off than us just because he's older?  hyde's 4 and you know how icky and sicky those kids are! ;-)  We did keep Hyde out of preschool after his transplant but he will be going back in the fall.  We also tried to be careful but he also had a sister who is in kindegarten and was exposed to everything that's going around - so far she's had flu (when Hyde got discharged from the t'plant - aghhh), Fifth's disease, various fevers and colds - arghh!!!  But like we said - so far so good. hyde's going to our neighborhood pool, playing with kids in the neighborhood, etc. We try to be careful but you also can't keep him in a total bubble  and defeat part of the whole reason we did the transplant - to improve his quality of life and let him be 'like the other kids' .  So amazed by those numbers and hope everything continues - also - within a month to 6 weeks post t'plant Hyde was off ALL BP meds for the first time in over 3 years and his blood pressue is consistently 90's over 50's and we don't even check it now!  Hopefully something else to look forward to.