NOTE TO MY READERS:
When I stated this blog years ago, I hoped to use it to present ideas, thoughts, opinions and a record of goings ons. It turned out to be MY therapy! I have written about frustrations, my health and other things in addition to politics, grandchildren, general subjects, travel, etc. This one is about the week I just experienced after having a biopsy on my transplanted kidney that showed rejection and a relapse of my kidney disease. I wrote it for myself, simply as a form of therapy. So, yes, this is somewhat self-indulgent. I am not looking for anyone to feel sorry for me…this is NOT a “Woe is me!” My Dad had some great lines he would use from time to time. One of my favorite was “You don’t want sympathy…If you look up sympathy in the dictionary it lies somewhere between sh*t and syphilis and you really don’t want that!” So, I am not looking for sympathy. Prayers and good thoughts are always welcome though.
Even at 6 AM, the weather is sweltering as I took the dog for a walk. With an expected heat index of 112 degrees, the only good thing to look forward to on this Monday was knowing that the whole day would be spent indoors in the air conditioner. The flipside of that was that the whole day would be one of 5 that would be spent at the Miami Transplant Institute Clinic of Jackson Memorial Hospital in Miami.
Leaving the house by 6:15 assures that the trip should take just about an hour. Wait any longer and it could take 2 hours in the rush hour traffic in Ft. lauderdale and Miami. So, although the first appointment wasn’t until 7:45, we arrived at 7:15. Looking around the waiting room, I quickly calculated somewhere between 50- 70 people waiting, After checking in, the wait begins to be registered by one of the clerks so that the day can begin. It seems that it doesn’t matter that the lab appointment was for 7:45 and the treatment was scheduled for 8:00. This train doesn’t keep to schedule! Finally at about 8:30, my name was called and I got the coveted paper ID bracelet and at about 9:00 was called for labs.
Then the fun began! The phlebotomist poked me so hard the vein ruptured and my arm is black! However, we commenced with the infusions and the nurses and all in that room are as nice and efficient as can be, Surprise!! Beginning with 500 mg of steroids, followed by 50 mg of Benadryl, which usually makes me drowsy enough to fall asleep. But because of the steroids, I was wired. Then we began the 6.5 hour infusion of Thymoglobulin. All designed to stop rejection of my transplanted kidney. We finished at about 5:30. just in time for Miami traffic! That is when I decided not to make the daily drive and reserved a hotel next to the clinic!
After a toss and turn sleep, day 2 started at 5:30 AM and I left the house at 6:15 again. I was called by the infusion nurse to do vitals but she said that I had to do labs first. Of course, my crack coordinator didn’t put in orders for the labs and it was more waiting while I made phone calls to try to get it rectified, Because of the nature of the infusions, labs are required before each session, Right hand not knowing what the left hand is doing!
After some research, I found that Jackson Memorial Hospital does more transplants than any other facility in the country. They average over 500 kidney transplants a year, That is in addition to the transplants for heart, liver, pancreas, lungs and more. In 2024, they broke their own record for number of kidney transplants with over 600 performed. I was transplanted in 2020 and have visited either Jackson Hospital or The Miami Transplant Institute, a separate building on the campus numerous times. Jackson has many specialties including transplant, Bascom Palmer Eye Institute, Sylvester Cancer Center, a Diabetes Research Facility, a Women’s Heath Center and a Children’s Hospital among other specialties. It is also thee home of the University of Miami Medical School. According to the latest data, they employ over 9000 people.,
But, I have seen no changes in their facility or personnel that does the follow up for all of these procedures. Every bit of my communication has to go through my Nurse Coordinator and sometimes it takes days to get a response. She tells me that she is assigned over 450 patients. And if I email her after 4:00 on a Friday, she doesn’t check email again until Monday morning…and that is after she gets “caught up.”So, a lot of things fall through the cracks if I don’t diligently follow up. . But I have started copying the Doctor on all emails, and that seems to get a quicker response. I have found throughout this whole process that if the patient is not his own advocate, then nothing happens.
Getting back to Day 2, the orders were finally entered into the system, and blood and urine taken. Now we wait for results before the infusions begin. And with nothing to do I write to vent my frustrations that nothing moves efficiently and quickly. While I was in the lab having my blood drawn, I got a call back from the random person I vented with on the phone earlier to tell me that the order was put through, I asked that tomorrow’s order be verified so we can get off this merry-go-round. Infusions began at a much later time than my 8:00 appointment and I am now stuck here until about 5:30. About 1:30, my coordinator finally called to apologize that there ‘was confusion.” No, she just didn’t follow up and do her job. When the patient is a number and not a person, “confusion” does happen and that is the point of this whole missive.
When I arrived at the Center on both days 1&2, I couldn’t help to notice the multitude of people standing around, sitting in every available seat and all looking miserable The cacophony of sound was punctuated by the number of phone calls that people were having at maximum volume with their speakers turned on and even some having facetime conversations. Have these people never heard of headphones? And is it really important to take these social calls in such a crowded area? There are plenty of outside spaces they could go to have their giggles and laughs where they don’t disturb others. But social courtesies have become a thing of the past. So, the day at MTI ended about 5:30 and I found the Hotel and checked in. Dinner downstairs and looking forward to a good night’s sleep However the steroids coursing through my body had other plans. Even after taking a sleeping pill, I watched the clock most of the night. The severe indigestion I had made it impossible to lay flat and trying to sleep sitting up was not happening!
6 AM came rather quickly and I made my way to MTI by the appointed 7:15 time. Finally , the reception guy is beginning to know me and he got me pretty much on schedule. Labs done relatively close to the appointment time and my coordinator actually had entered the orders into the system this time! I looked up my lab results from yesterday and they were awful, to say the least. My creatinine, a key indicator of kidney function was the worse it has been since the transplant and the urine protein and blood were extremely high. Hopefully this is part of the “getting worse before you can get better.”. If today’s results are equally bad, I will reach out to both Doctors to get some input. All in all, the 2nd day wasn’t terrible. The 50mg of benadryl they injected and my sheer exhaustion gave me the opportunity to take 30 minute naps throughout the day in between every half hour vitals checks. Back to the hotel and with little appetite, ate a sandwich and going to try to get some rest. Tomorrow is another day…and a much simpler one since I am only having the steroid infusion.
Well, it turns out that results are worse. Sending the results to my Boca nephrologist. Hopefully he says it is just a side effect of the infusions. He replied that he talked with Dr. Kupin in Miami and they HOPED that the inflammation would begin to go down. Hope! That doesn’t seem too very encouraging but I soldier on with the plan. After a short infusion of more steroids (I have completed the Thymo), the 4th day was done and I went back to the hotel and was able to get a couple of hours of sleep. And that might have been a mistake!
No appetite but I forced down a couple of bites of a quesadilla for dinner, watched a little television and tried to go to sleep. Nothing worked…I tried a sleeping pill, watched television, turned off television, listened to music, laid in total silence, tried reading a new book and it is now nearly 3 AM and I am wide awake. Is it the steroids, or the extreme anxiety I am feeling about this whole situation? For some reason this feels different than the last time I went through this…a feeling of dread. I know I have an incredible amount of support, from Connie, Lisa and Brad, all of my brothers and plenty of calls from friends. But tonight I feel alone.
I need to be up in a few hours. I want to go get a box of pastries in the morning for the nurses in the infusion center to thank them for being so nice all week. They truly were the highlight of the week…couldn’t do enough to make me feel comfortable! Well, I guess I will try sleep again and get through tomorrow’s short infusion. We reduce the steroids to 125 this morning and them I am off for home. At least writing has made me more sleepy, so I will try sleep again. Hopefully this week’s adventures have not been for naught. Only time will tell.
Day 5…Well, it is 6 AM and it seems I slept between 2 to 3 hours. I guess that is better than none! Looking forward to getting the final infusion of steroids this morning and heading home. Oral steroids start tomorrow and hopefully they will be more manageable. Wonders will never cease. I arrived at the Center earlier than scheduled and was ushered back early and completed the infusion in record time. The pastries were a big hit with the nurses and after hugs all around, I headed home where a much needed nap was in order.
On Monday, I start phase 2 with 8 weeks of Rituximab infusions, but those are close to the house at the Hematologist’s office. I am sure I will have something to say about those as I progress but don’t promise another 8 Blogs in 8 Weeks.
And The Journey Continues….