Kidney/Pancreas
Welcome - can’t wait to learn from all of you!!
My name is Karin, and I am living with 2 organ transplants: a kidney from my father and a pancreas from a deceased donor. I am also the CEO of Lyfebulb, and have wanted to create a community for people like me since I was told I needed a kidney! I realized quickly that there were things healthcare providers did not have the time, or even the knowledge to help me with, since they lack the "lived experience" and I searched for a person who could be my "buddy" through the process and also the actual life with a transplant (or two).
I live in Westport, Ct, but I am originally from Sweden. Most of my life in the US has been spent in NYC, but with COVID19, things changed. I have a daughter who is 2 and a half, and is the joy of my life - she makes everything better and I want to stay healthy and vibrant for her, more than for anyone or anything else.
I am so excited to be a member of TransplantLyfe and I hope to connect with many more people living with transplants! I know I can learn so much more from you and I will try to share my experiences as openly as I can to allow for you to learn from my mistakes and "wins".
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Hi Karin! Thank you so much for sharing your story and being inspired to create a community for us transplant recipients! I know when I received my living donor liver transplant almost a year ago, it was really difficult to find other people who had been through the same thing that I could talk to. I would have loved having something like this! I can't wait to connect with other patients on this platform and watch it become a huge resource for transplant patients, caregivers and donors! 😊
Transplant Patient
Great tool Karin
well done!
Hi Karin!
I was so excited to see this group, and feel very close to your personal story I'm in my first year after K/P transplantation and mother to a 6 year old. I have been craving a community atmosphere where I could find people to relate to the day to day. I struggle with how to define myself to others, and it just feels nice to find somewhere where people may relate.
Thanks!
Care
Transplant Patient
@Care_mass - we have a lot in common and I get you - I struggle too and I worry for my future at the same time I know I am much better off now than I was before the transplants but I sometimes feel like a flawed person - someone who failed and my body was a lemon - there are sad days and then there are tremendous days! I am so happy you are part of our community here and I will learn from you and maybe you from me xx
Your message brought tears to my eyes. I am THAT person. My highs are high and my lows are weird and low. I feel lost in my identity a bit, because the majority of my life I was the diabetic. Now I am....not? I don't even know. Its very odd. Good. But odd and hard to explain to outsiders :)
Transplant Patient
@Care_mass I am so happy to have met you! Good night from Ct
@Karin i can relate to this so much. There are days when i feel so flawed thinking there is still something wrong with me. Dont know what to do where to go. Everybody else says be glad you're alive. I am i really am very very blessed that the transplant happened and it was successful. On the other hand i see other people living their lives on no terms. Also feels most of the time that nobody could love me I have a lot of restrictions and cant live a normal life.
These days bring me terrible flashbacks.
Transplant Patient
I am so sorry @Naina - understand and we just have to push through but allow for a good cry here and there / I do think speaking to someone who understands helps?
Yes totally that is why this platform is like godsent to me!!
Hello! I'm excited to see what I can learn from this group. I was just placed on the kidney/pancreas list in December 2020. This is all very new, but seems like the best path to be on. I am also a mommy to a 6 year old, little boy, and work full time. Life"s plans have certainly changed but who has a plan they stick to anyway, right?
Transplant Patient
@TServold Welcome!! Are you doing your SPK as one or two procedures? I did my kidney first and then 9 months later the pancreas, but I had a living donor for the kidney.
How are you explaining this to your little boy?
Thank you! Right now, the plan is one procedure. I don't currently have a living donor, and am not yet on dialysis. So, we are hoping to find a donor for both organs and do it all at once.
Honestly, I haven't told my son yet... I don't really know how to tell him, or when the right time to tell him will be. Open to any and ALL suggestions!
Transplant Patient
Hi! Perhaps we have someone on the platform with a young child - I am hoping that these kind of connections will happen - my child is just about to turn three, but very intuitive - she knows when I am not well - I think children sense the environment better than we think! May be worth telling him softly and slowly that you may need to fix a problem, but for him not to worry? @lescp3 any ideas - you have great experience w kids!
Transplant Patient
@Care_mass perhaps you have some advice for @TServold ? Grateful :-)
Hi @TServold, welcome to the group! I just had my Kidney/pancreas transplant in April of 2020, after 27 years of diabetes and landing in Kidney failure after my son was born in 2014 . I'm fortunate to have only been listed for 2 months before a donor was matched and I could not be more grateful for the experience. As a diabetic, I am sure you could relate to the unpredictability is accompanied by stress, anxiety and lack of control. I can tell you that after 9months post transplant, the word i feel best describes where I am is SAFE. Transplant comes with highs and lows, but nothing like I had before. Please reach out any time, I love meeting and relating to people in similar situations. This group is such a safe place to just be you.
Hi again! Sorry, I wanted to also contribute about my son and how we managed his emotional needs during the struggles of ESRD. My husband and I blast together a part of honesty and no judgment first. This made me feel safe knowing that we were on the same page of communication. My son is very sensitive and empathetic. He would sit and snuggle me for hours after a traumatic low, or read me stories outside the bathroom door when I was throwing up. We always remained open with him and fave him simple tools to help him feel useful. He would grt juice boxes, bring me a blanket or turn his shows down if I wasn't well I was on peritoneal dialysis, so the machine was in my home and rather noisy. I openly shared my site Nd he would mask up and watch as I connected to see that it didn't hurt me, it helped me. We would talk alot Bout what would happen when I got the call and that this was a good visit, not a scary visit, and mommy would feel alot better after. He never visited me in the hospital as I got my transplant in the middle of covid lockdown, but again, I shared my scar, let him ask any questions and let him know that mommy was going to be better. So far, so good!
Transplant Patient
@Care_mass and @TServold I have to relate an incident from tonight / I had a bad reaction to something in my dinner - perhaps the scallops or the veggies - my stomach was upset and I had bad diarrhea / it always makes me dizzy and weak when that happens - I think I go low in both b glu and bp - I felt terribly bad and my little three year old saw that - she said “ Mammie go to bed - rest” she actually led me to my bed and made sure I lay down - then she went downstairs and got me a bandaid (!), followed by a second trip getting my iPhone, a third trip getting her iPad and a fourth getting me a glass of ginger ale that was on the table - I almost cried and said “ thank you you are a good girl” she responded “ feel better Mammie? I am a good doctor”
Oh my goodness Karin! There is no remedy in the whole world that feels as good as the caring actions of a child.
What an angel...and she is not even three yet!!!! Feeling warm and fuzzy reading this (and hoping you are feeling better this morning!)
@Karin , Oh my goodness! What a sweetheart. My son is usually very intuitive to when I am not feeling well, too. For her to really take the lead and make sure you were resting just melts my heart. Good job sweet girl!! Hope you are feeling better today!
@Care_mass, thank you for sharing this with me! My son is very intuitive, and so helpful with my diabetes. He will sit with me when I am low, or get me a snack, if I need one. If my pump alarm goes off he asks if my blood sugar is okay. Right now, since I am not, yet, on dialysis I haven't said anything. I visit the doctor when he is in school (kindergarten) and since I work full time, mostly from home with COVID, but occasionally from the office, he doesn't think too much of it if I am not home when he and daddy get home from school. I was in the hospital in June for fluids, due to dehydration, for just a couple of hours, but I was solo so he didn't experience that either... He just knew that I needed to go to the doctor. I was lucky enough to be released that same day, and there was no overnight stay. We are very lucky to have some family close-by, and very good friends, who will watch him at the drop of a hat, but I don't want to hide anything from him. I also don't want to stir up any emotional distress on him, too early. Parenting is hard, and then you add in health issues - oh boy!!
I hear ya! The thing is, is that you have to do whats right for your circumstances. Its so hard to know if you've made the "right" decision, but truly, the right decision is whatever decision helps you and your family navigate these unique circumstances :)
Transplant Patient
She is an angel but tonight a little devil - or at least a negotiator!! No help for Mammie when I am not sick :-)
Transplant Patient
MUCH better THANK YOU although my tummy was tricky most of the day - always after a night like that - this is clearly my biggest issue post transplant!
@Karin, did you experience tummy issues much pre-transplant? I don't have gastroparisis, thankfully, and I do have celiac, but sometimes, for reasons I don't know yet, I can spend the entire night in the bathroom. My husband also had IBS so anythjng spicy or high fat is not in our diet. Really, I've had a sensitive tummy my whole life so this could be unrelated...
Transplant Patient
@TServold I had what is called in Sweden an "iron stomach", could even eat raw garlic and I would digest it! This is clearly triggered by the drugs I am on as well as the salmonella sepsis I suffered from in 2014 - now I think I may have chronic noro virus and chronic c diff, so I need a fecal transplant, but cant have it during COVID!
Transplant Patient
I wonder if this topic - kids and chronic disease is worth its own post?? Others may have ideas and it is buried in this topic here...
@Karin, I think that's a great idea.