Okay, what can I expect post transplant?

[smileeface]

Hi all!

I'm not on dialysis and I feel just fine (well I think I do. . .).

I know everyone is different, but. . . .what have some of you experienced right after surgery?

Is it just like any other surgery or are there going to be restrictions? 

How long do you wear the surgical mask?

Do you have to avoid the general population for any length of time?

What are some things to be on look out for?

Thanks in advance!
Karin

[Chris]

Karin, if you read some of the post in the transplant section, these questions you may have already found the answers for.
As for recovery, each person is different and that answer can be only generalized. I felt a lot better, but also felt weak, tired, but wanted to get up right after waking up because I felt so much better.
 
Restriction, yes to some degree
 
Avoid the public, yes for a short time
 
Waer a mask, yes for a short time, but depends how one is recovering
 
Is it like any other surgery, well that's hard to say since we all have had different experiences and possibly haven't had surgery to this degree before. That said, it was waaay more different than having an access and eye surgeries, more intence.
 
What to look out for? Depends on what your asking Things to look for when looking for a transplant center, fods, dealing being out in public, post surgery care, and so on.
 
Ask any thing, best to be as prepared as much as possible
 

[renalpenguin]

I'm five days out of my transplant and doing great- here's my experiences (so far... it's not even been a week!)

Right after surgery- I have a very high tolerance for pain, and I have to say it was tough right when I woke up. Morphine worked wonders, though, and after only two days I was reduced to just pain pills (no more IV morphine). I'm not feeling great right now BUT I had a slight relapse of my disease (FSGS) and had to go through plasmapheresis for four days (plasmapheresis made the disease go away, but it's very invasive- similar to dialysis but more tiring on the body) I'm also very anemic (from my period, which happened the day of surgery!) So I imagine without plasmapheresis and extreme anemia (my hemoglobin is 5.5- stupid period!) it wouldn't have been tough at all. I'm feeling so much better overall, even with complications.

Restrictions- depends on the kind. You're supposed to excersize (walking) as soon as possible- and I'm sure you'll want to (I haven't been allowed to too much due to my hemoglobin levels). No lifting more than 20 pounds for a few weeks. As far as the diet, it's heaven if you've been low-phosphorus and low-potassium foods... you're supposed to basically eat "healthy"- low saturated fats, low-cholestol, low-carb, but nothing too crazy. Just a balanced "normal" diet unless they tell you otherwise.

Surgcal mask- just while you are out of your room in the hospital- visitors have to wear masks while you're in the hospital (at least here- every hospital is different).

General public- they told me watch out for large-groups (shoulder to shoulder, or movie theater/church service) for a month. Use hand sanitizers and common sense. Just general "flu season" precautions- even if it isn't flu season!

Things to look out for- I'm not sure what you mean. Some insites I've gotten though- be prepared to eat lot of potasium as phosphours!

 

[Rerun]

I remember feeling awesome and hungry for the first time in so long. 

I still avoid shaking hands.  Thank God for hand sanitizer.  Carry it around your neck!

[jbeany]

Check out the posts on medication side effects so you have some idea what to expect from the drugs.  Prednisone will triple your appetite, and may make you emotional and moody.  Warn your loved ones about this ahead of time, so they don't freak out when you do.  The moon face and hair changes aren't thrilling, but if you know they are coming, it's easier to deal with them.

I didn't wear a mask except when returning to the hospital for tests, and then only because of the flu epidemic.  Buy stock in Purell, though, and learn to use it religiously.  Start now to get in the habit with sun screen daily, too.  (Check out the Neutrogena spray-on ones - much faster as you are running out the door than trying to rub in thick lotion.)  Start learning to avoid touching your face, too.  It's a hard habit to break. 

They do want you to avoid crowds at the beginning, but the few times I was in a large one, I didn't have a problem, thanks to the purell habits.

[natnnnat]

Remembering that statistics are about groups of people, and only maybe apply to individuals... and the experiences of others may or may not be like yours… here are a couple of articles on the topic of how some people felt post transplant.  “…in addition to the physiological care of kidney patients' during the pre- and postoperative phases, there is also an important psychological component.”

The guts of these articles tends to appear in the last couple of lines so if the early comments are a bit much, read the last line.

Buldukoglu, K., O. Kulakac, et al. (2005). "Recipients' perceptions of their
transplanted kidneys." Transplantation 80(4): 471-476.
BACKGROUND: The literature indicates few studies on kidney patients' perception
of the donor kidney. In light of this fact, we decided to explore this issue
with adult patients. METHODS: We carried out a phenomenological study with 40
adult kidney patients. RESULTS: In this study, three main themes became
apparent: the savior, gratitude, and feelings of intense responsibility for the
kidney. The patients' perception of the kidney as a savior was evident in
statements where patients spoke of being "reborn" and of the kidney as "a
distinct being." Their sense of gratitude was evident in their description of
the kidney as "a gift of life," in their comments on their improved, "quality of
life" and sense of leading a "normal life." Feelings of intense responsibility
for the kidney were also present: "always on my mind," "precious being,"
"uncertainty," and "contract." This study's unique finding was recipients'
desire to enter a contract with the transplanted kidney in order to prevent the
risk of rejection. CONCLUSIONS: This study indicates that in addition to the
physiological care of kidney patients' during the pre- and postoperative phases,
there is also an important psychological component. This demonstrates that the
success of a kidney transplant does not only depend on the physical care given
to the patient but also on the emotional support provided by those around them.
Accordingly, healthcare providers should support the patients' emotional needs
in a number of ways as suggested in the discussion.


Fisher, R., D. Gould, et al. (1998). "Quality of life after renal
transplantation." Journal of Clinical Nursing 7(6): 553-563.
•End stage renal disease (ESRD) inevitably reduces the life-span of its
victims. The treatment of choice for many patients is transplantation but this
does not effect a cure. Its aim is to improve renal function and thus to enhance
the patient's ability to enjoy as full a life as possible. However, surprisingly
little research has been concerned with quality of life after transplantation.
•A small-scale, exploratory study employing a qualitative design was
undertaken to compare stress and quality of life between five patients with ESRD
awaiting transplantation and five patients who had received a graft within the
previous 6 months. •The desire to undergo transplantation was fuelled by
patients' perceived need to `get off dialysis' and to `lead a normal life'.
•All patients had received abundant technical information about renal
transplantation and pre-operative preparation but information concerning the
negative effects of transplantation, including the side-effects of medication
appeared lacking. It was not possible to determine whether this information had
not been supplied or had been offered but forgotten or denied. •For
pre-transplantation patients the main sources of stress were the need to undergo
dialysis, awaiting the summons to hospital and the social isolation imposed by
having a chronic condition such as constant fatigue. Post-transplantation
patients were remarkably free of anxiety considering the impositions placed upon
them by frequent clinic attendance to monitor their condition. Quality of
life improved dramatically after transplantation despite the persistence of
renal symptoms and patients felt privileged to have been offered this treatment
option. [ABSTRACT FROM AUTHOR]


(2005). "Psychologic Stages in Renal Transplant." Transplantation Proceedings
37(3): 1449-1452.
Health workers must be aware of the psychologic stages experienced by their
patients. We analyzed the influence of the posttransplant time on thoughts
(depressive and anxious) and body image perception in renal transplant
recipients. The sample consisted of 59 adult patients (mean age ± SD: 45.76
± 11.44), divided into three groups according to the posttransplant time (1
year, 1 to 2 years, >2 years). Subjects completed a psychosocial interview
(sociodemographic and clinical data), the Beck's Cognitions Checklist, and the
Garanto Self-concept Scale. Negative thoughts and body image alterations were
increased during the first year and from the third year on, with no
statistically significant differences between these two periods, but they were
appreciable when these periods were compared with the 13- to 24-month interval.
Renal transplant recipients may go through three psychologic stages after
transplant: alert; coping; and exhaustion.

[Emerson Burick]

So far no one has mentioned an upset stomach, so I will. Nearly every immunosuppressant lists diarrhea as a side effect, and when you add them all up, things can happen.

I had a live donor and originally went from not needing dialysis to having a kidney transplant. From the evening before the operation when I took the first of the pills, until I rejected the transplant and the doctors cut my drugs way back, I had an uneasy stomach. After the operation, when everyone around me was all smiles, asking if I felt better, I had to tell them honestly that I felt worse. And I really did. I felt terribly ungrateful for not appreciating the friggin' "Gift of Life" but at least a couple of times each month I found myself clutching my stomach on the john in a public bathroom and honestly not caring if I died then and there. On really "special" days I'd vomit at the same time. (I recommend lining your bathroom trash can with a plastic bag if you don't already.) God, it was awful. In fact, I'm debating whether I ever want another transplant because I feel so much better now on dialysis.

In any event, I learned not to go anywhere--and I'm talking about the grocery store or the movies--without a few Imodium (Loperamide) to stop diarrhea. I also had to dial down spicy food from hot to medium.

So yeah, that could happen to you. With luck it won't be as bad.

[okarol]

As a precaution, the transplant team prescribed Prilosec, aka Omezaprole, a powerful, longterm medication that must be taken once per day and works by blocking acid production in the stomach. She takes it every day to prevent stomach upset.
Jenna has never had an upset stomach or diarrhea, but if she did I think they would have changed the immunosuppressant. One of the worst things for a transplanted kidney is dehydration, which can happen quickly with diarrhea.