Just wanted to post a little update. I am three years past the operation and everything is fine.
Since the last update, my health and my life have changed for the better. Well, last week as bad, but the change for the better occurred this week.
Last week, the surgeons were concerned about a low white blood cell count along with falling numbers for red blood cells, hemoglobin and platelets. The surgeons took me off Myfortic (anti-rejection), Bactrim (anti-infection) and Valcyte (anti-infection). Astragraf (anti-rejection) was raised from 3 mg to 8mg per day. Prednisone (anti-rejection steroid) was raised from 10mgs to 20mgs a day.
In addition, I was ordered to take a new drug by inhalation once a month. (Sorry, I do not remember the name of this drug.) This drug is administered in a sterile environment with a plastic tent placed over your head and an air filter to screen the air returning to the room. The drug is considered toxic to those not receiving treatment. Its primary use is for HIV patients to prevent pneumonia. I took the treatment on Thursday. It lasted about 30 minutes. I tolerated the drug well.
This week my numbers had vastly improved. The latest lab results show a normal white blood cell count. Red blood cells, hemoglobin and platelets are slowly improving. But, the best news is that the surgeons have authorized me to go into public places and to discontinue wearing the mask. For my first foray into public, Shari, Hailie and I had dinner at Luigi’s on Audley near River Oaks. I highly recommend this Italian restaurant! Finally, to complete the clinic visit, the surgeon removed half of the staples I received from the surgery. I am still having excess drainage, but I am hopeful that we can remove the JP next week.
My latest stats are:
Item Count Normal Range
WBC 5.38 [4.50 – 11.00]
RBC 4.17 [4.40 – 6.00]
HCB 11.5 [14.0 – 18.00]
Platelets 32 [150-400]
Potassium 4.8 [3.5 – 5.0]
Phosphorus 2.1 [2.4-4.5]
Creatinine 1.8 [.7-1.2]
Weight 245 lbs
The other day I had an opportunity to visit with a young wife and mother as her husband was receiving a liver and kidney transplant.
At first, all I could do was hug her and cry. I was so moved by the courage it took for her to even be standing there talking to me and my family. My eyes and my arms, as they made connection with hers, were screaming, “I know! I know! I know what this feels like. I have stood right where you are. I know.”
I wanted to promise her that everything would be okay and yet I didn’t know if it would. I wanted to say so many things to her about this experience, but I could only blabber out words that felt insignificant.
Her husband, her lifelong partner, the one she had chosen, was going to have a new life. The two days of surgery for him were going to be a sort of rebirth. A new future was being constructed as the new liver and kidney were finding a new home in his body. Their family story, their future, was going change.
Although Brant’s future was not confined to a specific number of years, a cloudy haze of uncertainty always lingered, and we knew dialysis was a viable option for only so long. We knew he was on borrowed time. So when I learned that Brant and Marcy were a match and he was going to have the transplant we had so faithfully prayed for, the first words I uttered were, “My husband gets to live!”
Yes, Brant has a new birthday…the one where he received a kidney that breathed new life into his body. August 19, 2014. Today is September 14. We’ve almost made it to one month. When I reflect on the last several days and weeks, it looks like a blur, and some days I question if it really happened. It seems so unreal, even though I was there for every minute of it. Then I look at Brant, and I know that it happened. From the 16 staples still residing where the surgeons placed his new kidney to the flush of healthy color in his cheeks, I am fully aware that my husband, my lifelong partner, the one that I chose has received a new life.
We are taking it one day at a time. To do otherwise would overwhelm us. But as we take it slowly, all of us (Hailie, Brant and I) do a happy dance each day. And although we are physically tired, our spirits soar when we take a moment to contemplate what the future holds.
My prayer requests for today and in the coming weeks:
– continued healing
– removal of the remaining JP drain
– platelets to get back up to at least 70,000 (they are down to 25,000)
– kidney continues to work
– Brant can resume normal life at home and work when his immune system is ready
– extra energy for me and Hailie
GREAT NEWS! The young woman’s husband, who had a miraculous liver/kidney transplant last week Thursday, is doing well. If you would like to read more about Tiffany and Rob, please click here.
I went for lab work and a meeting with the transplant team on Monday. Everything is progressing according to schedule. I still have a JP drain in my side and the transplant team determined it needs to stay in another week. With a suction, it yields well over 400 cc’s a day.
This week I was instructed not to apply the suction. For the first two days of this experiment, the JP has only collected 25 cc’s of fluid. The remainder is deposited in my bandages. Shari is required to apply bandages to me at least twice a day. To complicate matters further, the transplant team has determined that I am not fit to drive until the JP is removed.
The results of the lab work are both positive and negative. On the positive side, my creatinine level has fallen to 1.9. The normal range is [.7-1.2]. On the negative side, my platelets have crashed. Whilst last week they were 365,000 ml, this week they have dropped to 25,000 ml. The normal range is [150,000 – 400,000]. I have been fighting ITP since May 2010. There is no known cause and none of the drugs given have worked to cure the problem long term. I had hoped with a reduced immune system, the IP would resolve itself. It did not.
My latest numbers are as follows:
Test Current Normal Range
Creatinine 1.9 [.7-1.2] *(I just read an article that said 1.8-1.9 was normal for one kidney.)
Potassium 4.6 [3.5-5.0]
BUN 29 [6-20]
Platelet 25,000 [150,000 – 400,000]
Phosphorus 2.5 [2.4 – 4.5]
It has now been two weeks since the kidney transplant. I have been home for the last six days. There is no place like home! Physically, I feel fine. Sometimes, I feel minor pain at the site of the incision, but for the most part, no real pain at all. The most difficult part of recuperation is not doing anything. I sit around the house all day in my p.j.’s. I cannot see anyone, lift anything, or go anywhere. My instructions are to simply heal.
Last Thursday, I went to my labs and clinic for the first time. With labs, you are required to show up at the Methodist Transplant clinic on the 12th floor of Smith Tower. After waiting for over an hour in a waiting room filled with transplant patients and their families, you get called into the laboratory area. The protocol, pee in a cup and get your blood drawn. Takes all of five minutes and you are out of there.
Later, on Thursday afternoon, is clinic. The clinic I attend is located near NRG-Reliant football stadium. At the clinic, they take your vitals (blood pressure, oxygen level, weight, etc.) and then you meet with one of the rotating transplant nephrologists. The nephrologists review your blood work from the lab and make incremental changes to the medications you are taking. Perhaps, the most important medication reviewed is Prograff. Prograff is an anti-rejection drug. It is normally proscribed to be taken twice a day. The nephrologists prefer to examine the blood work in the trough period. The trough period is the period of time at the end of a cycle between taking Prograff – usually at the end of 12 hours from the last dosage. I am not taking Prograff, but rather a new once a day derivative called Astagraf XL. This drug is the same medication as Prograff, but it is taken only once per day. It is a new drug to hit the market and the nephrologists are interested in determining which drug works the best for their patients.
The last measurements are as follows:
Creatinine 3.3 [.7-1.2]
BUN 50 [6-20]
Potassium 5.5 [3.5-5.0]
Phosphorus 2.7 [2.4-4.5]
WBC 10.15 [4.5-11.00]
Platelet 369 [150-400]
Weight 245 lbs
I check out of the hospital tomorrow. After taking an infusion of thymoglobulin for three days at six hours per day for each infusion, my new kidney is finally working! My blood is getting clean and I am producing urine. The cost is my immune system. One doctor described the infusion of thymoglobulin as “taking a bazooka to your immune system.” None of the doctors thought this would be necessary with a living related donor, but it was.
All I know is that my new kidney and I suddenly have a lot more freedom. Freedom from the time constraint of dialysis, the dialysis drugs, the anemia, and the restrictive diet. Freedom to spend time with my family on the weekends, to work uninterrupted during the week, and freedom from 14 gauge needles. I have been reborn. Dialysis is a great way to keep you alive awaiting a transplant, but it is no way to live!
For the next month, I will be semi-isolated. I have to wear a mask, if I venture into public. I have two labs and two doctor visits a week for the first month of semi-isolation and more drugs to take four times a day than I can count. But, as I adapt, the burden gets lighter and lighter. I plan to spend my time with Hailie and getting as much work done from home as possible. Like a bear from hibernation, I will emerge from this isolation in October 2014. So, if you see me, please say hello and let’s spend some time together getting caught up.
It is been very humbling to see how friends and family have surrounded each of us with love and affection during this process. I want to thank you for your steadfast prayers and support. Words seem inadequate to express our gratitude for friends like you. Thank you! To God be the glory, great things He has done!
Well, we are still in the hospital.
After JBD’s BP got under control (thank goodness it did!), some other bumps in the road have come up, and we are here until they get resolved.
His creatinine slightly increased, and his urine output decreased. The doctors came in with two opinions on what it might be: either the kidney hadn’t kicked in yet, or he is rejecting the kidney. Taking the more negative point of view, the doctors are treating him for kidney rejection and putting him on a three day dose of a medicine called thymoglobulin. Typically thymoglobulin is administered to 60% of kidney transplant recipients, but because JBD is considered “low-rejection risk,” it was not given to him. We would rather be safe and precautionary, so we are fully on board with this course of treatment.
This medicine is crazy! It’s derived from rabbits, and we’re keeping an eye on my dad to make sure he doesn’t grow a cotton tail anytime soon.
We are a little disheartened by the news of the potential rejection, but the doctors all seem optimistic. The ultrasound of the kidney indicated plenty of good blood flow and his creatinine has decreased from 5.6 to 5.3, which is minor but headed in the right direction. The transplant nephrologist came in with a team of about seven doctors and nurses this morning to discuss my dad’s case, so we’re confident that the best of the best are on the case. Keeping good spirits is our biggest goal these days.
In the interim, my mom and I have managed to watch a few terrible movies and have explored many new areas of Houston Methodist. This place is BIG. Also, we are continually humbled and amazed by the outpouring of love and support from friends and family.
Also, JBD has received some of the best care while here in the hospital. Every nurse, PCA, doctor, transplant coordinator, social worker, pharmacist comes in with a smile on his or her face and a cheerful heart. We cannot say enough good things about each one of them! I almost hesitate to bring my dad home from the hospital because I know that my level of care cannot match that of these nurses or PCAs.
Brantley is feeling good during the days. The thymoglobulin makes his temperature irregular, but otherwise he’s energetic and enjoys chatting during the day. He would love to hear from you, so email him, text him, or contact him here.
all my love,
P.S. We’re planning on adding a new page to the blog, with pictures from our time in the hospital and recovery! Stay tuned. Also we have updated the Prayer Requests page.
Well, at least, they have decided to stop making me sick! No nausea or vomiting today. Blood pressure under control. Sugars under minor control – high 194! Creatinine holding steady.
From the looks of it, the tide is turning. There is concern that the kidney may have gone to sleep a little bit. Apparently, a female kidney is not used to the strain of a male body. The kidney is not producing as much urine as after the surgery. The surgeon believes that I may be super-susceptible to the Prograff, anti-rejection drug given, and has cut the dosage to below the minimum level. More observation and reassessment on Monday, if all goes well, I can be released; if not, more experiments! At this point, it is more art than science.
On the other hand, I had a great visit with Shari and Hailie today, and a wonderful bath. It is the small joys that bring pleasure.
There was another setback today. As with yesterday, my blood pressure rose to dangerous levels and I began vomiting. The blood pressure situation is hard to control. The medical team has put me on some type of drip to bring the pressure down. Next, they give me other medications that are likely to work without use of the drip. Then, they take a blood draw and analyze the composition to determine the correct cocktail. It is when they fail to get it right that I have problems. As a result of this relapse, my discharge date has been moved back to Monday. Houston is safe for the weekend.
Presently, my blood pressure is under control. My sugars are not – 255! Creatinine is on a slow downward trend – 4.5. Bowels are waking up and I am passing wind. This is a good sign.
The good news for today is that my hematologist, Dr. John McCarthy, stopped by for a visit today. He is in the middle of knee replacement surgery. Despite his recuperation period, he managed to find the time and energy to check on me.
Lastly, relief from the Foley catheter came today. If you have ever had one, you know what I mean.
There was a setback today. This morning I developed an episode of high blood pressure – 210/90. I suspect the rise in blood pressure is linked to the massive steroids used to reduce rejection of the kidney. The blood pressure was so strong that it caused vomiting. It took the medical crew a little over four hours to get it under control. Once the blood pressure was under control, the nausea and vomiting vanished.
On the other hand, it was also a good day. Marcy was cleared to leave the hospital. She is required to remain near the hospital for next week and then she can return to her family in Dallas.
The day was also filled with more education. A dietician dropped by to explain a transplant diabetic diet. A pharmacist dropped by to explain the drugs I will be required to take for the rest of my life to avoid rejection. Finally, there was a snafu with the prescription arm of my insurance company. The company insists that I order the drugs from a specialty pharmacy rather than your corner store. However, the hospital insists I have a 30-day supply upon discharge – which is not possible to order from the specialty pharmacy by tomorrow. That right – tomorrow is the day I will be discharged to start the two month process of recuperation!! God is good.