where do I start.. I guess at the beginning… as a child I had frequent bladder infections but no one thought anything of it.. I mean little girls right.. eventually when I was much older someone realized something was off and I saw some doctors that decided to do some investigation.. The doctor I saw at that time literally said if ain’t broke don’t fix it.. I was young and times were very different I mean who would question that.. once I was older and married we wanted to start trying to have a baby and saw a new specialist and he sent me for a battery of tests.. I was poked and prodded and went through tests that I found humiliating and embarrassing but we needed to have an answer… why does my urine smell like that and what is going on, would it affect my fertility and ability to have a child? some of the tests were terribly humiliating.. one particular test was called (VCUG) voidingcystourethagram you literally have your bladder filled with a catheter and then they take X-rays of you while you stand there and urinate into a bag.. that was particularly humiliating but it was also the best test because they discovered what was actually wrong… my ureters were not connected properly and when I was urinating it was back flowing into my kidneys and damaging them every time… you have to remember this was back in the 90-2000’s.
The specialist said it could be easily rectified with a simple surgery where they would place a stent it would fix the issue.. but of course that’s not only didn’t work it didn’t work twice.. which meant much more serious surgery.. reimplantation of the ureters.. well if that is what we needed to do then it’s what we will do so we scheduled the surgery and I had it.. they did inform me there was damage to the kidneys due to the backflow for over 20 years and I may need to go on dialysis later in life but it seemed so far away.. we know how that went.. fertility issues stillborn twin girls many years of trying and fertility drugs and accepting it was not meant to be and that we would not have any children of our own.. cut to 40. I did continue to see a nephrologist who followed me and monitored the kidneys and the function. Turning 40 was a big moment I was told that around 40 I would be on dialysis so turning 49 and still being in stage 4 kidney disease felt like a win.. I had a good job and I was happy still living life and enjoying every moment.. I had amazing friends and coworkers and my family was there for me and I was there for them.. I have a very small family and I was lucky.
Then it all changed I was laid off of my job after 25 years I lost people I thought that were my friends and my world turned upside down. I was just out of high school when I started there
Eventually I got over yet another devastating moment in my life and I found a new job and new people came into my life.. it took me some time but we are a very small group and have become like family.. I’m not kidding myself I know who is and isn’t my friend and I know the people I can count on. People come into your life for a reason or for a season.. accepting that is hard… but it is reality… at least it it my reality…
So now we come to the last few years.. the most difficult so far.. I have been through a lot in my life and each time I think well it couldn’t get worse than this.. and each time I’m wrong.
I was seeing a nephrologist for over 10 years regularly and when my kidney function dropped to stage 5 kidney disease (15% total function) he said ok we knew this was coming and I need to refer you to my pre-dialysis clinic.. I already knew about the clinic because my stepfather was there so I waited for the referral but in November 2020 he called me into his office.. I knew something was wrong but honestly I didn’t see what happened next.. I went into his office he said to me that since I don’t live in the city (haven’t moved in 15 years but whatever moot point). I cannot be referred to his clinic and he could no longer be my nephrologist and was instead referring me to a new one in a different city.. so you have been there for me for the maintaining but when I really need you you are leaving me.. hmm ok. I was so sad I almost cried (never let them see you cry) I felt like my boyfriend of many years just broke up with me.. ok I will go see this new doctor and hope he cares for me..
Annnnd then came a worldwide pandemic!! I met him during the Covid-19 pandemic.. never a dull moment he seemed nice enough sent me for some tests asked me to wear a holter monitor to just make sure my heart was ok and then referred me immediately to his kidney care clinic at the hospital. Now I have a team of people a nurse, coordinator, doctor, dietician and pharmacist. We talked a lot about options and decisions that needed to be made.. while we still can let’s go for transplant and dialysis as a backup.. ask you friends and family see if anyone is willing to donate.. my husband speaks up in the room instantly I will what do I need to do? The doctor at first thought he was kidding are you serious it’s a big undertaking.. he laughed and said no it is not a joke.. he gave me the paperwork and several booklets and off I went. I mentioned to people my situation and my sister in law and my best friend also offered to be tested. I was overwhelmed and grateful to have such amazing support. Once I sent the website with the very long survey to be completed my husband was the only one left standing.. I’m not offended I’m not even hurt it’s a huge decision and I respect peoples decision. The ones that hurt me were the ones that didn’t even have a conversation with me people I have gone out of my way for and certainly understand why they would not want to donate but to not even have a conversation and pretend there is no elephant in the room really hurt me but I have built this wall around my heart so I let it go.. sometimes I feel like I let too much go. My husband got a call from a coordinator that he was accepted to continue and begin testing to be a donor.. it is a long process.. took around 6-8 months. He also has to maintain a certain bmi.. a little info on my husband although he has the biggest heart of anyone I have ever known he is also a very introverted person… and as we discovered during the fertility process terrified of needles.. so terrified that when he has blood taken he literally passes out on her floor. True story at the fertility clinic I came out of an exam room and saw some guy on the floor and laughed then realized it was my own husband. He has a vasal vagal response to it. So all these tests he will have to have done include many needles and blood work so I know how hard this will be on him. He has not once complained all he says is we are together to save each other it’s why I’m here. Sweet but also sad.. I also had to go through lots of test tests and then my package was sent to the transplant clinic at the hospital I chose for transplant.. meanwhile my kidney function kept dropping and then stabilize then drop.. I did everything they asked me to but this is also all during a worldwide pandemic and I am immune compromised so my specialist said to me listen this Covid thing is no joke… if you get it there is a good chance you will not survive. The second he said that to me in front of my husband it scared us… we were taking precautions of course but now we were in a different world literally. The only time I left my home was doctor appts. He did everything outside of the home and he would come home and shower take no chances. I will never be able to thank him enough for protecting me like that. I was not allowed to go with him for any of his appointments or meetings with his doctors because he was my “donor” and they needed to keep us separate. So not only is their pandemic but now you can’t take anyone with you for support.. at least not in the room.. most appts at the hospital I went with him and I would wait outside so at least I’m there even if I can’t be in there with him. One day of tests he had I couldn’t believe it he had an iv in one arm and they were taking blood from another while he lay there in a machine monitoring his kidneys.
Crazy test but he passed with flying colors.. in fact when he met with the surgeon he raved to us about how it was rare you see a perfect donor and lucky I was. Everything looked good now they just needed to see if we were a match.. we were the same blood type A … what are the chances!!?? It felt like it took forever to find out if we were a match Covid delayed everything and we waited months and months and then out of the blue in December 31st we got the call he was not match due to antibodies.. yup probably because of my pregnancy.. ti say we were disappointed is not even remotely close to the words I would choose. Like a punch to the gut talk about the year going out with a bang… they asked him if he would still consider the paired exchange program and he said yes of course..
Here I sit 4 months later and my team STILL hasn’t even told me he wasn’t a match! Buttt I digress
I have appts with my transplant team in April and I still see my “pre-transplant” team every 6 weeks and bloodwork every 4 weeks… so I’m still being monitored. One of my appts in March was with my surgeon I met him and it was supposed to be the last step before approval for transplant but when I met with him he explained to me that he had one more test he wanted me to do wanted to see the inside of my bladder by doing a cystoscopy and wanted to check on it especially in light of my surgeries and the fact that I really don’t have a the sensation to urinate as frequently as a regular person..
The day of my procedure I was nervous I thought I was going to be sick in the car and I couldn’t stop shaking I sat in the waiting room just terrified I think my memories of the past test I have had done were messing with me.. the moment of my cystoscopy I can honestly say I have never been so nervous.. the nurse even said to me wow you have tachycardia is it nerves or do you have an issue with your heart.. when it comes to humiliating procedures as a grown woman I should be past it but when I entered the room and saw one woman and 2 men I felt relieved a woman was there she would make me feel calm.. then she left the room a male nurse came and introduced himself to me as my nurse and I tried to remain calm I mean men can be nurses too I know this.. who knew I was such a prude.!? When he said he had to prepare the area I stared at the ceiling there were all white ceiling tiles except avoid my head it was like stained glass window with what appeared to be magnolias I just stared at it and thought how pretty it was and how odd to have flowers in this room this room that is so clinical and cold and yet there are these pretty flowers.. I’m sure they are there to help calm people down.. it kind of worked then he “prepared the area” and it was soooo cold like someone dumped ice on your hoo ha.. that snapped me back and I jumped a bit ooo sorry it’s cold it’s ok I said.. then my surgeon appeared at first I didn’t recognize him but he was wearing a mask and his accent reminded me who he was.. I’m a weirdo I know but really the other thing that calmed me down was this huge tv screen on the wall that is where I will be able to watch. Boy o boy you haven’t lived till you have seen your area up close in camera on a tv screen then he numbed the urethra and the camera went up.. never seen the inside of a bladder before but it was not pretty big even a little but.. it was actually concerning to me to the point I said Omg is that normal!?? It’s just scar tissue from your surgeries lots of scar tissue and then after checking out every inch of her bladder and saying some doctor speak to the other doctor in the room he was out and it was done. He traced his finger on my scar and said I am at higher risk after the surgery because of the scar tissue but I would be ok. Everything looked ok.. there I am on the table legs in the stirrups no drape just exposed to the world and the nurse tosses me a facecloth.. I try to get up but I’m stuck in this weird position and the nurse is much more interested in the conversation with the doctors than helping me then finally sees me struggling to get up and helps me out of the stirrups.. I literally said can I go!? Yup you are good to go you will hear from us soon and you will need more bloodwork great unsaid just had the bloodwork done before this procedure! He laughed and said wow you are on top of things!
