Starting the Monday or Thursday after discharge from the hospital, all kidney transplant patients are required to attend kidney clinic. This twice-weekly visit with your Transplant Team helps you to stay up-to-date with your current medical needs including daily med levels, additional testing, etc.
Additionally, on the morning of clinic you must have your labs drawn between 600a and 800a so that your blood meds reflect a "trough" level, which is used to determine whether or not a patient needs and adjustment to their meds. On e day each week this also includes a Urinalysis test to see where your GFR (Glomerular Filtration Rate) and Creatinine levels are. Plus, this test is used to partially determine the health of the new kidney with urine color, cloudiness or clarity, excreted waste products, etc.
All test results are generally available by the time you meet with your Transplant Team.
Whom you meet with is determined by just how far along in the healing process you are, how compliant you are with your meds and daily Vitals log, and by how well your body is adjusting to the kidney and the meds you need. Generally, you will see the Team Pharmacist, Social Worker, Dietitian and Nephrologist. Again, depending on how well you do, this may get to the point where you are only seeing the Nephrologist.
On my first Kidney Clinic visit I also met with a Team Surgeon who gave me surgical clearance; meaning that no more surgeon visits were necessary. Both the Social Worker and the Dietician also gave me their clearances as they determined that compliance would continue to be a non-issue for me. This left only the Pharmacist and the Nephrologist.
The Pharmacist goes over all of your meds, checking to see if you know about all of your meds and your current dosages for each. As meds drop off the list, you note that with them, as well.
The Nephrologist usually does a good examination of the surgery site to assure proper healing, goes over your daily vitals log, med use, your latest and most important lab numbers (GFR, Creatinine, Tac (Tacrolimus...Generic name for Prograf) levels, Lymphocyte number, WBC and RBC counts, Hematocrit and Hemoglobin levels, etc).
Of these, the Tac level, GFR and Lymphocyte levels are most important as they cumulatively give a terrific indication of your health, and the health of your new kidney.
The Transplant Team at IMC will generally see post-transplant patients for three months following surgery. After that, you are handed off to your local nephrologist, though your lab results will always be seen by the Team. There will be additional Team follow-ups at 6, 9 and 12 months, with other Team appointments as determined by how well you are (or are not) doing.
On my first clinic the Team Medical Director (a Nephrologist) wanted to have an ultrasound done on my kidney and my bladder, to see just how each was looking, and to see if the blood flow to the kidney was working properly. This was done at another IMC Campus nearby. Being so close to my surgery--just one week post--I asked the Ultrasound tech to be gentle in her examination. The kidney appeared to have excellent arterial and venous flow, and my bladder have increased only marginally. That last one was no surprise as I was not yet allowed to 'hold it' due to the stent that would be in my ureter (between the bladder and the kidney) for more than a month.
After that test I went back to Clinic and was informed that my kidney looked to be in excellent health in every way. That news came as a relief!
Another doctor visit I have to make in the first two weeks was with the Team Cardiologist...again, at a separate site. We discussed my meds, how I was feeling, how my urine flow was progressing, and chest pain etc. We also scheduled a follow-up Echo Cardiogram for 23 August, just to check on the heart and any fluids that might still be in the atria. I also learned that the damage caused to my heart by the fluids during the previous six months was permanent, even though I could not feel anything wrong; and I still don't. The damage, though relatively minor, will always be cause for concern, and something to watch for. More than likely I will have to get additional Echo's every six months to a year.
The last extra-Team doctor visit I've had so far was to a Urologist to have the stent removed. The stent had to remain in place for at least a month to allow healing to both the ureter and the bladder at the connection point to both. My stent came out on 12 June. I'd heard several bad experiences of stent removal in male patients, so I was a bit nervous about the procedure. The nurse assured me that it would be over quickly, which didn't do much to alleviate my apprehension. After all, what person enjoys having a tube stuck up your urethra? I have once been awake and alert for a Foley catheter placement, and it was a completely awful experience! Hence, my apprehension.
However, as promised, the procedure was quick (about a minute and a half from start to finish), but was NOT painless by any stretch of the imagination. A numbing agent was inserted into the urethra, to aid in patient comfort, which helped a little. The device used to capture and pull the stent out of the ureter, into the bladder then out through the urethra was done via ultrasound guidance. I was under the distinct impression that the stent was very small--just a connector between the ureter and the bladder. What was pulled out of me however, was much longer. The whole time the doctor was repeating, "Just breath..." This helped me almost not at all as I could feel the stent being pulled out, and it hurt...a lot!
Once removed, I asked to see the stent and was amazed to see that it was not tiny at all, but about five to six inches in length. Plus, the Urologist made the comment that my urethra was somewhat smaller than normal, so additional pain resulted.
For anyone curious, I will post a picture of the stent on the post I will show various photos from post-surgery. I know, pictures such as this aren't for everyone; but in all fairness, I know that photos will interest others, especially pre-transplant patients who read this blog.
My current Tac levels are targeted for 8.0-10.0. My last labs showed it to be 8.5. This level will decrease sometime soon to 5.5-6.5, then possible even lower after that. It all depends on my body.
The Lymphocytes are targeted between 20-24%, but will bounce up and down during the first three months. This indicator of immune system health is vital. Too little, and I am susceptible to infection. Too much and it jeopardizes the kidney as high lymphocytes levels will begin to attack the kidney. My levels are bouncing around right now, ranging from 8.9 (the latest number) to 20.1 (the highest number so far). As time goes on, this number will stabilize.
Because I am doing so well, the Team Medical Director allowed me to reduce my Kidney Clinic visits to once per week. I can also do one of my lab draws locally, which I do on Mondays, while I also go to Clinic on Thursdays. At this point, I am about a month away from being handed off to my local Nephrologist. At that point I will be doing all labs locally. Additionally, If I continue to do well, labs may be reduced to only once each week. After that, I will eventually get down to lab draws just one time per month, as will and visits with my Nephrologist. Eventually--and again, depending on how I am doing--those visits will reduce to once every six months. However, if at any time I don't feel well, I am to report it immediately. Let me explain why next...
Signs and Symptoms (S/S) of Organ Rejection:
If a kidney transplant patient experiences any of the following, they should contact their Transplant Coordinator immediately!
*Fever of 101.5 degrees, or higher
*Flu-like symptoms (Fever, chills, body aches, fatigue, weakness)
*Nausea/Vomiting
*Decreased Urine output
*Excessive diarrhea
*Elevated Blood Pressure
*Big change in weight
*Swelling (Edema) of the hands, feet, ankles or even eyelids
*Change in color of urine or stool
*Any new pain, swelling or tenderness over the kidney
*Unusual Redness, Tenderness or Swelling from your incision or drain sites
*Any Difficulty in Breathing (DIB)
*A persistent cough or increase of mucous produced in the lungs (especially if the mucous is green or yellow)
*Excessive muscular weakness, leg cramps or cardiac palpitations
*If you feel excessively depressed
*If you just don't feel right, and
*If you have any questions or concerns.
I will also post information on other important information regarding post-transplant care and general living.
On the days I am not at clinic or other tests, I am walking pretty much every day, eating well, and resting as my body needs.
Over this past weekend I seem to have hit a new level of healing and strengthening. I found myself forgetting to take my cane with me, which has been at my hip for nearly seven years now. My legs are definitely stronger, I have more energy, and am feeling generally really well. My sleep has been exceptional, and I am getting up only two or three times each night to urinate. When I do, I am seeing excretion levels of 300-450cc's. During the day, this is about 200+cc's.
With the stent out, I can now start training my bladder to increase in size and volume held. This is NOT very comfortable! I had nothing in my bladder for three and a half years, and getting this muscle to expand can be painful. However, over the past two months since transplant, I have gone from urinating every 45 minutes--even when I slept--to about ever hour to hour and a half while awake, and three or more hours while I sleep. As time goes on, both will only increase to normal times and volume.
I'm sure there are a few things I am forgetting, but as I continue to write my blog, any and all relevant info will be discussed. Hopefully, my entries will help at least one person to have a successful, non-scary transplant experience.
Next time, I will post that additional post-transplant info. After that, I will post those photos I promised.
So, until next time...
Good Health to All!
ScottW
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