I'm not sure where to start. It's been three months since I last updated my faithful followers. Much has happened in that time span so I'll do my best to fill you in without being too lengthy.

* Our visit to Mayo gave me hope and that hope energized me. Getting back on the UNOS wait list (the list for a kidney from a deceased donor) was such a relief. But the real accomplishment was getting back into Mayo's paired program and being listed on the National Kidney Registry again.

* On April 1, no joke,  I noticed that my feet were warm and my nerves were telling me they were warm. I used to get mixed signals about the temperature of my calves and feet but now it's just my feet, and sometimes the nerves send the correct message!

* Several weeks after returning from Mayo I had an online appointment with the hematology doctor to follow up on the extra blood samples he requested. Apparently my platelets are malformed so they do not easily attach to each other to form a clot. I finally have an explanation for why I bruise so easily. I was told that if I was to have surgery in my spine or brain, where the standard means of stopping bleeding is not possible, I might need a platelet transfusion to control the bleeding.

* On April 16, 2021 I had my second fistula surgery which is done on an outpatient basis (first photo shows my arm several days later). The purpose was to pull the vein closer to the surface so a needle can access it. Everything went smoothly.

* I'm hopeful that my jerky legs and sporadic muscle weakness could be the result of a build-up of toxins in my body and not nerve pain which does not have a treatment. Once my blood is getting cleaned better with hemodialysis I’m eager to see if my strength is smooth and consistent so I can make progress with strength and endurance.

* My falls have finally slowed down. I was having them multiple times a week. The bruises on my body are very slow to heal because of my kidney failure. I've never been this purple but I'm blessed that I have not hit my head or broken a bone, both which would have temporarily taken me off the transplant list. All these stumbles have taught me that when I'm tired I'm at high risk of falling and need to rest. Pushing myself like an athlete is counter productive. My muscles go from fatigued to literally non-functioning  quickly and my legs are like wet noodles such that I can’t stand or support myself. I was feeling embarrassed about this odd phenomenon until I read that those in severe kidney failure have too much metabolic waste in their blood and the result is muscle weakness, muscle twitches, cramps, and pain all of which I have experienced. I've learned to rest for five minutes and then I can stand and walk safely.

* I stopped wearing my orthotic because I felt like it was negatively impacting my gait and was leading to much of my right hip and waist pain. I started doing exercises to strengthen my feet, shin, and calf muscles and I noticed an improvement in my walking after just one week. Although I have had some close calls with my toes dragging, I was able to avoid the fall so that's a positive change.

* I’m in the process of getting evaluated for the IU Health Transplant Program in Indianapolis. This will make donating more convenient for many people in Indiana. As long as I know in advance (I need to get pre-approval from insurance) my insurance will cover gas, hotel, and food for both the evaluation and surgery. More to come in the next post on how this impacts a potential donor, especially if the donor chooses to join the National Kidney Registry on my behalf.

* June 7 marked the beginning of our hemodialysis training. The peritoneal dialysis was not adequately cleaning my blood so the change was necessary. Once again, Tom is doing the majority of the work while I sit motionless with two needles in my arm (see photo of me with face mask). Once we are home I plan to learn how to set up the machine so I can give Tom a small break. He has done everything but cannulate me which is a nice way of saying stick a big needle in my vein. Once my treatment is finished I help hold the gauze on the spots where the needles are removed. At our first attempt of Tom removing his finger and me taking over we were not successful and blood shot across the room, got all over both of us, and soaked the lap pad. I was fine but I’m glad that happened because we learned a lot and once our heart rates slowed down we were able to laugh about it.

* In the second week of June, Tom and I decided to take a drive to a store that only sells recumbent trikes. I’m not talking an exercise bike but rather a bike you pedal. My physical therapist and Tom have encouraged me to look at this as a stepping stone to getting back on a regular bike. The goal is to find a form of exercise that I can do regularly that does not hurt my spine. We arrived at a very simplistic store that was crammed with trikes and very helpful employees. I sat in several and picked the one I wanted to take out for a test drive. I made Tom join me and we biked on the Monon Trail for about 2 miles round trip. We had a blast and since Tom insisted I get an electric assist the “hill” did not discourage me. We had been calling stores for weeks and everyone was expecting a shipment of bikes but they did not have the inventory for customers to take test drives. This store was full of trikes and was expecting a large shipment mid-July. In that shipment was the trike I test drove so Tom took advantage of the situation and bought me a recumbent trike. We are so excited to get out on the road again, well trails, even though the distances are going to be very short initially.

* On June 16, day eight of hemodialysis training, we learned that part of my fistula was too small. This 2mm section had been 6mm and it needed to go back to 6mm or larger before hemodialysis could resume. Thankfully I still had my PD catheter so we went back to our old routine. I’d only been on the PD for approximately two weeks and my physical therapist and family noticed that my mind was struggling (known as brain fog), I was less coordinated,  my mornings were often delayed by dizziness, my affect was more negative than positive, my back pain had increased (I struggled to sit through a meal), I was fatigued, and my SI joint would not settle down. In short, I did not feel good and it showed. That doesn't include the symptoms (legs twitching, sporadic strength,  muscle cramps, nausea and vomiting) of too many toxins in my blood. I now believe Tom’s theory that 3L of fluid in my stomach, pushing on my spine and my SI joint for 15 hours, was working against my rehabilitation.

* I continue to go to physical therapy twice a week and 30 minute private pilates sessions twice a week. Sometimes I have extreme bone and joint pain following a workout. I learned that due to kidney failure the pain is my body attempting to clear the extra toxins from my body as my muscles breakdown and rebuild. My physical therapist said it takes someone in kidney failure twice as long to recover from a workout. I was also low on vitamin D so the vitamin was being pulled from my bones. A supplement has resolved that pain.

* June 18 I had a fistulagram to open up my vein. It is a simple procedure where I was semi-conscious in an outpatient facility next to my dialysis unit. The sedation didn’t do much for me as I never slept but instead talked  to the doctor standing above my left shoulder. The pain medicine didn’t seem to do much either because I kept asking for more. The doctor made a slight incision (felt like a pinch) and then put a balloon through my vein to expand it to 6mm. All was good until the balloon was removed and my vein reverted to 2mm. The next step was to insert a 7mm balloon at which time my vein ruptured. This bleeding was very painful and I cried. A stint was inserted and will stay in my vein so that vein will never collapse in that spot again but that area can not be used for dialysis either. In eight years of doing this procedure the doctor has only had this complication happen twice, and I just had to be one of them. My arm has been healing for two weeks and I hope to get permission to return to hemodialysis training on July 6. I've included a picture of my arm one week after the event and the hematoma at week two (half the size it had been).

* For some time Tom has wanted to put grab bars at the top of our staircases to increase my safety.  I kept telling him it would not be necessary because I would soon be strong enough and not be struggling with the last two steps. I finally had to admit that the progression of my strength is like a roller coaster versus a gradual incline. The grab bars were installed and I admit that they make me feel safe, and confident, when I climb the stairs independently. In fact, I found them so effective that I allowed Tom to put a suction grab bar on the shower wall so I can get in and out more safely.

* It hasn’t all been medical woes in our home. On March 24 we celebrated Tom’s 55th birthday. Sarah made a cake and appropriately decorated it with Jeep tracks. We got most of the main floor painted (not by us) and our foot stool and new couch arrived along with new curtains. We were thrilled when Jodi came home to visit for three weeks. Both girls are busy this summer taking classes but they managed to get a lot of cuddle time in with their doggy which usually resulted in a lot of laughter (see photo). I’ve been blessed with some wonderful friends and family who have helped me keep my garden looking beautiful since I can’t do it myself.  Finally, Sarah and Tom were able to go on a two day Jeeping excursion while Jodi stayed home, took care of me, and administered my dialysis.

I am blessed but I’m still praying for a kidney so I can get off dialysis and return to the life I once had. More importantly, I want to be able to give my family a break since they have been my hands and feet for two years. I have not been able to travel to visit Jodi and activities as a family have not been possible. I can’t even go out to a restaurant or movie because I can’t sit long enough. Please look at the links below and share this post. The last time I made a plea at least 5 people tried to be my donor and for that I'm truly grateful. Unfortunately,  none of them panned out but I know that my kidney is out there somewhere.

Seeking Your Help,

Lynn

 TO LEARN MORE ABOUT LIVING ORGAN DONATION 


- www.kidneyregistry.org
- email LIVINGDONORORGANTP@mayo.edu
-  https://connect.mayoclinic.org/page/transplant
- http://www.transplantliving.org/living-donation)
- http://facebook.com/MayoClinicTransplant)


IF YOU WOULD LIKE TO BE SCREENED AS A POSSIBLE DONOR


- http://www.mayoclinic.org/livingdonor
- Click on Health History Questionnaire link
- Click on Living Kidney Donor link
- Click on Mayo Clinic Minnesota link