I just learned recently that I have been going by the wrong transplant protocols. ARGH!!!
When I first began the process of being screened for a pancreas transplant, I was given a long laundry list of Do’s and Don’t’s. One of the items on that list was long distance travel. I was told at the education seminar that I really shouldn’t be more than an hour from the hospital. This would insure that the donated organ would still be viable. The longer an organ is outside of the body, the viability decreases. I followed that protocol.
I recently learned the requirements that were given to me weren’t accurate. I was given advice based on a kidney transplant since the majority of pancreas transplants are performed in conjunction with a kidney transplant. Solitary pancreas transplants are one of the least common solid organ transplantation surgeries performed and the rules and regulations are different.
Because a donor pancreas can only come from a donor that is brain dead but on life support, the time constraints are a lot less narrow. The time between the donor being taken off of life support (the donor’s family decides this) and the organ being harvested and transported to the recipient can be as much as 24 hours. That is a much larger window of time meaning that the recipient isn’t required to be within an hour of the hospital.
Doh! I’m glad that I now know that I at least have the option of going a bit farther afield than I thought I had previously.
Oh well. Live and learn.
It has been almost an entire year since my last post. I am 1 year and 4 months into what is on average a 3 year wait. I would love to say that the time has flown by, but sadly it has inched by like a slug in the garden leaving a slime trail behind it. That’s a lovely word picture, right?
The months have been filled with the shenanigans of three 9 year olds, endless arguments with said kiddos about the need for frequent and thorough showers (me: Yes, I know that you showered yesterday, but you stink TODAY!), two surgeries, 2 bazillion medical appointments, 3 bazillion visits/conversations with pharmacy staff about filling and refilling my long list of prescriptions, 4 bazillion interactions with the vampires (a.k.a. phlebotomists), 500 pity raves (so much more fashionable than your run-of-the-mill pity party), followed by 500 stern self lectures on the importance of gratitude, and finally nodding politely to the armchair physicians’ seemingly endless supply of well-meaning but useless advice.
Random Person: Have you tried drinking 5 gallons a day of alkaline water stored in a copper pot? I hear it can fix everything from ingrown chin hairs to colicky babies!
Me: Well gee whiz Mister, thanks for the unsolicited advice! I’m sure if it can do all of that, your magic copper water will regrow my pancreas lickety-split.
Now, that I have spewed my venom, I feel marginally better. I will continue to attend all of my medical appointments, take all of my medicines as prescribed, follow doctors’ orders, go no further than 30 minutes from the hospital, count my blessings, and finally, bide my time.
Every month, I go to the Methodist University Transplant Clinic to have my p.r.a. (percent reactive antibody) blood test performed. I go the first week of every month and this month my beautiful gingersnap joined me at the clinic. Every time I have my blood drawn for this test, I distract myself from the the needle by singing the oh so appropriate song “Match Maker” from Fiddler On The Roof in my head.
The purpose of the p.r.a. blood test is to ascertain if I have been exposed to new foreign tissues and if I have developed antibodies to them. If I have, then the donor organ must match those antibodies. As these antibodies can change frequently, the test must be performed monthly as well as immediately prior to the transplant surgery.
Along with the p.r.a. test, many other factors must match before a donor organ can be matched and hopefully a successful transplant performed. Our blood types must match and the donor’s height and weight must be approximately the same as mine. After those are matched, our tissues must match. This can vary greatly depending upon if the transplant recipient has had miscarriages, pregnancies, blood transfusions, previous surgeries or previous transplants. If the recipient has had any or all of these things, they are what is called “sensitized” and can be difficult to match.
Unfortunately for me, I am sensitized. From what I understand, I am a hard one to match. Sometimes being unique isn’t good. Ha Ha! When it comes to medical conditions, you just want to be a middle of the pack, run of the mill kind of case. Because of the difficulty in matching a suitable organ to me, I could possibly be on the pancreas transplant waiting list quite a long time…or I could get the call tomorrow. Who knows?
When I was first being evaluated for the pancreas transplant list, I answered a heap of questions. There were two in particular that I should have paid closer attention. I should have delved deeper and expanded the questions.
“Have you received a flu vaccine within the last 12 months?” “Have you received a pneumonia vaccine within the last 3 years?” The questions posed to me by my nurse coordinator were such innocent easy questions to answer. I answered in the affirmative, gave the dates of the vaccinations to the best of my knowledge, and gave the questions no further thought.
That is, until I saw my genius nephrologist, Dr. Siddiqui. He asked me had I received a Hep A and Hep B vaccine. I couldn’t recall whether I had. He being the fabulous and thorough doctor that he is, suggested that I have a titer blood test performed. A titer test checks for antibodies to a specific antigen in your blood. If your blood is positive for antibodies, then you have either had the illness or received a vaccine. He ordered the titer for Hep A and B and further suggested that I visit my internist for additional titer tests to be performed for routine vaccines.
Being the good patient that I am, I followed up with my pcp for the additional titer tests. In addition to Hep A and B vaccinations, I will need a Tdap booster, MMR, and meningococcal vaccine. I had already received a Prevnar 13 pneumonia vaccine, but due to the removal of my spleen, I required the additional protection of the Pneumovax 23.
Because my immune system is already suppressed due to Cystic Fibrosis and cystic fibrosis related diabetes, I am having to space the vaccinations. I received the Pneumovax 23 and Tdap last week and had a pretty intense response. My upper arms are still tender and slightly swollen.
I am glad that my nephrologist pointed me in the correct direction. It is better to be vaccinated now rather than risk getting these illnesses post transplant and most likely dying from them. I just wish that in the transplant evaluation process the importance of vaccinations had been reiterated to me. I could have been receiving these vaccinations during that process instead rushing to do them now while I am actively listed.
Ugh. Live and learn.
I spoke with the coordinator yesterday. The long and the short of the conversation is that I have been officially listed on the pancreas transplant waiting list. Yay!
When I told my family yesterday, my sister asked, “So…how do you feel? Excited, scared, happy?” My response was, “Ready.”
That sums up perfectly how I feel. I’m just ready for this surgery to be completed and to get on with recovery. I’m ready to not be exhausted all of the time. I’m ready to face life head-on. I’m ready.
Today was a very busy day. Richard and I got the kiddos to school by 8:15 and then scurried home out of the rain for a hurriedly consumed breakfast. We bolted from home (more like lurched) at 8:45 to make a 9:00a.m. routine follow-up with my gastroenterologist to discuss how my cystic fibrosis is doing. Richard and I left their East Memphis office, had a quick bite to eat, and then zoomed across town to Methodist University Hospital Transplant Clinic for a 1:00p.m. appointment with an early 12:30p.m. check-in.
We met the surgical fellow, surgeon, nurse coordinator, social worker, and dietitian and of course the phlebotomist vampires had to have their 7 vials of blood. Over the next 3 hours (yes, I said hours) we discussed at length the actual logistics and mechanics of how the pancreas transplant would be performed. It is really quite fascinating if you look at it from an engineering standpoint. The surgeon was extremely kind, compassionate, and went to great lengths to answer any questions that Richard and I had. He said from his point of view, that he is an advocate for me and for the pancreas transplantation. He assured me that he would argue on my behalf at the upcoming Transplant Board of Doctors meeting this Friday morning at 8:00a.m.
All in all, it was a reassuring clinic visit and my last one before I am officially listed for a pancreas transplant on Friday, March 2. Watch for updates!
It just so happens that on the day that the entire world is sharing love and hearts, my heart received some much needed love and approval from the cardiologist.
Let me back up a bit. I checked into Methodist University Hospital on Monday morning to have some cardiology diagnostic tests performed for the transplant. The transplant doctors need to be sure that my heart and cardiovascular system are healthy enough for the surgery. I got to the hospital at about 8:00a.m. after having fasted since the previous evening. I spent the next 6 and 1/2 hours going through one grueling test after another. They wouldn’t have been so bad if I had been allowed to eat or at least drink water, but that would have marred the results.
My first test was to be a stress test performed in Nuclear Medicine with radioactive isotope thalium tracer injected into an i.v. in my arm but that had to be postponed until late morning. The tech could not get an i.v. into my arm because my veins are too small and extremely scarred from years of hospitalizations. He sent me to radiology so that the tech in the CT Scan lab could use doppler to find a deeper vein for an i.v. The radiology tech was able to get an i.v. placed and successfully performed a ct scan with contrast.
I then was shuttled off for a chest x-ray. I left radiology with my still functioning i.v. and headed back to nuclear medicine. I was able to have my stress test performed. I finally went to the transplant clinic lab where 13 vials of blood were sucked out of my veins like Dracula after a Lenten fast. Seriously, who knew that much blood could be taken? Don’t forget, by this time it was 2:30 in the afternoon, and I hadn’t eaten or drunk anything since about 11:00p.m. the previous night.
Armed with all of those test results from Monday, I met with the cardiologist to review the results today. We did the do-si-do and he cleared me for surgery. I have no pancreas at all, but a healthy heart. Happy Valentine’s Day to me!!!
Also, don’t forget it is National Organ Donor Day!
It’s not just Valentine’s Day.
It’s Valentine’s Day and many of us have given our heart to someone in spirit. Some very special people donate their actual hearts for a good cause. However, today isn’t just Valentine’s Day, or Ash Wednesday, it is also National Organ Donor Day.
February 14th was first designated National Organ Donor Day by the department of health and human services back in 1998. The goal is to raise awareness for organ, eye, tissue, marrow, platelet and blood donations. Throughout the United States, more than 120,000 people are waiting for a life-saving organ transplant.
Register as an Organ Donor Today
Health officials said there’s someone who needs blood in the United States every 2 seconds which is about 41,000 donations needed every day.
Learn how you can Give Blood at https://www.redcrossblood.org
As my health has deteriorated at an increasingly rapid rate this last year, I have felt more and more isolated. The problem with living with limiting conditions is that all of your energy goes towards dealing with the logistics of everyday life as well as the neverending cycle of doctors’ appointments and tests, pharmacy and prescription wrangling, and constant contact with medical billing departments. At the end of the day, after the 3 bunnies (my kids) are safely tucked into bed, I simply lack the impetus to reach out to friends and family. I’m left feeling alone, down, and having a rave of a pity party.
In an effort to overcome my funk, I decided to seek out a support group. My thinking was that if I could connect with people that are going through what I’m going through, maybe that would help.
With that hope in my heart, my husband and I went to the Living Kindly Transplant Support Group. The support group is hosted by the transplant team with emotional support offered by the transplant social workers. The group welcomes both pre and post transplant patients and their caregivers. Each meeting has a speaker that shares his/her story to kick-start the discussion.
I have to say that I was pleasantly surprised by the experience. I cannot tell you how glad I was that it wasn’t a boohoo, crying buckets of tears meeting. It was quite the opposite in fact. I found that listening to other patients’ histories and experiences to be uplifting. I didn’t feel quite so alone anymore.
This transplant isn’t an event, it is an ongoing life – a life that maybe with the help of the Living Kindly Support Group won’t be so isolating anymore. What more could I ask? I’m thankful.
I went to my first transplant clinic appointment today and brought my trusty caretaker, my husband Richard, with me as instructed. I was told that I would meet with the nephrologist, surgeon, financial case manager, social worker, nurse coordinator and various other people. However, I only met the nephrologist with the nurse coordinator. The nephrologist seemed to have not read my records at all. The nurse coordinator had memorized my health records and kept coaching the nephrologist on my history. After understanding my full history, he concurred with the board’s decision that I definitely am in need of a transplant and it is needed asap.
At the transplant education seminar, I was told to expect at least labwork at the first visit. I have had so much labwork and so many diagnostic tests performed within the last 4 months in preparation for this process that the nurse coordinator has decided to get those records before ordering more. It is quite possible that I have done all of the testing that they require already except for the cardiology clearance. Why repeat if it isn’t needed?
Now I play the waiting game again. Whenever my nurse coordinator receives the test and lab records, she will review them and then give me a call with any appointment dates. I have no idea at this point what appointments I will have other than cardiology or how far in the future those appointments will be.
Pins and needles. I am starting to commiserate with pincushions.
The transplant board of doctors said, “Yes!” I had been waiting for 2 weeks on pins and needles, anxiously awaiting the green light from my transplant nurse coordinator at Methodist University Hospital. Let me just say, the wait was made more nerve-racking by dealing with three 8 year old stir-crazy kids. The inclement weather had also brought an unexpected vacation for the bambinos by way of 6 consecutive snow days. I was to receive word of the decision on Friday, January 12, but the snow and ice Memphis received delayed the decision until the 19th.
The board meets every Friday morning and reviews all of the patients that have completed the medical evaluation portion of the transplant process. They review the test results and vote approved, deferred, or denied. The board decided to review my case before medical evaluation to decide if my medical conditions would bar me from having a pancreas transplant and save me the trouble of further testing if their answer was to be a denial.
I am happy to say that they agreed with my nephrologist’s conclusion that I am in urgent need of a pancreas transplant and that I am a good candidate as well. Yay!
I am so thrilled and terrified at the same time. My stomach is churning. Yikes!
My husband and I attended the transplant education seminar today. We learned some pretty interesting information about what to expect during the transplant process. The transplant team did a great job of detailing how the potential transplant recipients would be evaluated for an organ transplant to determine if we are physically capable of having the surgery and whether the potential recipient was actually in need of a transplant.
We learned about how we would be placed on the organ waiting list and the various lists that we could activate once initially listed. We were educated on the protocol of how we will be notified of a donor match and organ availability.
We heard from a nutritionist regarding the importance of maintaining a healthy lifestyle both prior and post transplant. A quick aside, I cannot stress enough the absolute high priority importance of eating well and excercise. We have to take care of the bodily functions and organs that we still have. We also must take care of the precious gift of life, this incredible organ that we have been given. We cannot treat it as a renewable resource and be careless with it.
We listened intently to the pharmacist as she went over the medications that we would take, the reasons for the medications, and the absolute Golden Rule – Do Not Stop Taking Your Medications!!! Message received pharmacist with the voice like Minnie Mouse.
Finally, we were educated on the costs of our new lives. We gravely nodded and diligently noted just what this gift would demand from us financially. It is a sobering and macabre experience to learn exactly what your life is worth.