It's interesting that in the call thread Epoman asked for me to be as descriptive as possible. I actually tried to take as many notes as possible on my cellphone until I had to shut off and go under for the transplant. After the transplant itself I did not have access or the desire to use my cellphone to take notes so there are 4 or 5 days that will be a blur.
Sorry if some of the details appear boring and sometimes possibly unrelated to the transplant but here goes:
Monday 6/19
23.40 nurse indicates call has arrived. early dialysis shut off is started.
Tuesday 6/20
00.09 departure from center with my regular taxi driver.
00.18 arrival at house to pickup clothes etc while taxi drivers leaves to fillup on gas. mother wishes me well and goodbye.
00.30 taxi returns, depart from house. I ask the taxi driver to put one of my cds on ... this really helped for the drive!
00.45 car turbo troubles start necessating hot shutoff of engine while at full speed at which time turbo is again fullly operational and dash board warning light shuts off. problem seems to appear when approaching uphills on highway. Fear of vehicule failure sets into my mind.
1.22 stastitics ring truth be it accurate or fabricated. Indications pointed to a 6 month waiting time for the transplant after I finally made it on the list. This evening the doctor brought that to my mind ( for the first time! ). and tonight quarterly update blood exams for molecules was done. What a coincidence. Was someone dying while all this was being done and said? car troubles persist.
1.27
I hope my superglued glasses don't snap in two while at the hospital. ( I broke my glasses in two 3 days before .... )
1.50 arrival at Strasbourg where the hospital is located. Cannot find the night entrance.
1.57 lost, calling nephro.
2.05 taxi meter shut itself off! 250 euros so far ( 320 dollars ). appeasrs broken.... this seems jinxed.
finally we arrive...we are given a map to go to the right place the hospital/city is so big. It is like a neighbourhood.
2.20 finally there at the office!
3.00 bloods exams and xrays are done. I am put into a temporary bedroom while I wait.
3.34 ecg.
4.49 doctor stops by to oscult me.
5.15 go ahead is not fully clear but I am told that around 6 I will be transferred to Haute Pierre hospital where the transplant will take place....after 4-5 days there I will be coming back to this hospital.
5.30 departure in ambulance for hospital transfer. I feel like I am going to become a new man, a new me, that isn't really me.
5.40 arrival . I notice that 6.22 is National Organ Transplant awareness day.
6.20 thought occurs to me that I should leave some instructions in case I did not make it out alive and well.
8.50 nurses tell me to do final washup and shaving. one of them doesn't understand why I am so tired ... oh geez how does one explain that?? You figure I only slept 30 minutes at the most. I am sick of bein treated like a child but thankfully very few nurses do that.
9.40 I finally showered and panic sets in.... my tunneled catheter for dialysis wasn't properly sealed and now there's water and betadine under the tegaderm dressing!!! First time this ever happens to me.... it's the stupid condescending nurse's fault ... she ticks me off everytime she takes care of me ( luckily she is the only one who bothers me in dialysis .. I have wanted to back hand her a couple times in the past ).
10.20 crossmatch was negative!!!! :-D
10.50 IV is installed. Cellcept immunosurpressants are given. Will leave as soon as an op block is free projected for 12.00 12.30.
16.20 some tight bands are put around my legs to force blood circulation to the top and prevent blood clotting in legs after operation.
17.00 I am taken out of my room to go to the op block. One of the persons pushing my bed asks me if I am hungry and I say honestly no I'm fine! To which she replies well it doesn't matter anyhow cause you wouldn't have been able to eat anything anyhow. I replied was such a statement necessary? No wonder patients don't like being in hospitals and don't always like the staff.
Now outside the op block. I hear some argueing, apparently it is time for a shift change and there is no anesthesiologist around but one relunctantly stays to take care of me.
At this stage I shut my cellphone off and the next couple days will be a bit unprecise.
I am transferred unto the operation table, it's cold but I'm feeling confident. Some sleepy meds as I like to call them are injected in my IV and minutes later a mask is put over my mouth and before I can count down to 8 from 10 I am out ( I can never count down below 8 !!! WHYYYYY!!!!
)
At this stage I can only assume they installed a kidney down there but what do I know
I wake up around 21.00 in my room in the intensive care unit. First thing I ask for is some water, and I am given a third of a glass of water! For the next couple days water intake is minimal. I also said I needed to go to the bathroom without realizing they had installed a urinary probe ( I don't think that is the proper word ) and I can evacuate with ease as it goes into a container.
Wednesday
I am in complete pain and they try to make me get out of bed to sit in the chair, as they call it "the first rising" ( not the most accurate translantion from french I know
). I can barely eat anything. I am doped on morphine and for the next couple days I sleep about 16 hours or so a day. From now on until the day I leave the hospital I do blood exams every morning around 7 am.
Thursday my parents come to visit me and I can barely stay awake for more than 30 minutes. The pain is still there but it's nothing morphine can't cure
I am unsure if it was thursday and saturday, but I had to have dialysis on these two days as my kidneys weren't fully operational yet. I am told it could take up to 3 weeks!!! And my first thought was NO WAY! I want to go home ASAP!
For the first time since I had to restart hemo ( was on pd previously ) these two sessions go well I don't feel in pain or anything but boy does the machine keep ringing ( blood flow is too low ). This is the dialysis unit in the icu and apparently they very rarely use it and the nurse must have taken 45 minutes to get me plugged in each time!
Saturday still on the IV, still slow but starting to wake up some of my parents friends visit me and are amazed to see how out of it I am. At this stage I am starting to be able to spend more time in the chair, but I still need the nurses help to wash up in the morning.
The doctor is alarmed by the fact I am still on morphine and requests that I immediately be taken off!
Sunday nothing much to say. I spend a couple hours in the chair and I am really starting to feel real good. The kidneys seem to have kicked in, urine output is growing, and there is no more blood present in it.
Monday 6/26
I am taken off the IV in my arm but they plug everything into my tunneled catheter. Yay no more needle in my arm!
I am transferred to a regular room. There is little to no pain left. I think it was about now that I am instructed to drink at least 3 liters a day! Wow that's difficult after having been on fluid restriction for a long time.
Tuesday
I leave my room and go for a walk around the hospital. At this stage my appetite is starting to come back. Urine output is over 4 liters. Parents are amazed to see I am doing so well. Nurses comment on the fact I get out of bed so fast and jokingly say " Are you sure you got a transplant?? "
Wednesday
I have a high fever I don't feel so great. The room is hot with no AC but at least the other guy in my room is real nice and plays some smooth music in the morning when we wake up so it's quite relaxing.
Since my arrival I have done several ultrasounds and today they send me to do an extra one because of my fever.As I am fully mobile at this stage ( but still walking around with the iv going to my catheter ) I go to the ultrasound service alone and while in the waiting room I feel like I am going to die because of the fever. By the time the ultrasound was over and I went back to my room I was feeling much better.
Thursday
I get in trouble because I am gone from my room too much so I missed the doctors while they were doing their rounds
Right now I feel great. I am spending way too much time on my cellphone. Different friends visit me.
Friday
When they took me outside of ICU I was supposed to be transferred to the first hospital for the follow up but they have only been able to get me a spot today. I have no more IVs.
I arrive at the old hospital. This place feels like a jail! The nurses always check your meds before you take them, you get in trouble if you leave the service.
Saturday
Nothing much to say apart from the fact that in the morning I left the hospital to go for a walk downtown for about 2 hours. And I also left in the afternoon for about 3 hours. I get in trouble because I wasn't in my room in the morning for an ultrasound!
Sunday
Wanting to do everything properly for once I get a written authorization to leave the hospital for the day to go see the Tour de France.
I go to an american church in town where I know several people and a lot of them are amazed to see how well I look.
I get a little paranoid because of the exposure to the sun when standing outside watching the cars and bicycles go by for the Tour de France.
When I get back to the hospital that evening I am in complete pain. I have a small fever ( but apparently everyone in the service does because it was a real hot day ). I have leg and arm ( arm
) cramps but I think that was because of overdoing it on saturday with the walking. I am given some pain meds.
Monday to wednesday is smooth sailing. I get to talk to the other guy in my room a lot he is on his second transplant.
I bump into someone I knew online! He was sitting in a chair right outside my room, he had a transplant about a year ago and he was there because of a high fever. He is turning 23 today! We talk a lot and giggles tons.
I also spoke to a lot of other patients in the service and everyone is so easy to get along with. We all share our little stories about diaysis and transplant. I speak a lot to this 28 year old girl who it turns out lives close to me. Before I leave I exchanged contact info with her and we make plans to meet up again later with some other patients to eat out, go walking in the mountains etc.
She is also part of an organ donor awareness program that goes into schools to talk about what it is and she asks me if I would be interested to join and help out to which I obviously say yes.
Wednesday is my last day in the hospital. I am going home!
My creatinine is close to what is considered perfect for a transplant patient ( 130 or so ... I think the units are different in the US ... creat was at 1000+ before the transplant ).
I am so happy to get home! My mother is amazed to see me here. I go to the pharmacy to order my meds. I get them between today and friday and for one month ... the total is around 1800 euros!( 2300 dollars ).
thursday
I feel a little tired and I am starting to stuff my face. I blame it on the prednisone because I am constantly starving! I ask my mother to try and keep an eye on me ( keeping in mind that I hope she won't nag me too much haha ) as I have already gained 4 kilos or so since the transplant.
Friday 6/7
Up at 5.40 or so to take the train to go to my first follow up appointment. Get on the train around 6.30 and arrive at the hospital at 8.00. Blood exam, breakfast, meds, consultation, and I am out around 10.40! They made me skip the line because I am new and at higher risk because my immunosuppressants are at a real high level and with people walking around in the hospital they could infect me.
11.57 or so I get on the train after having walked around town and I get home around 13.30 or so.
Yes a lot of it was not important and I could have easilly have left it out but I didn't for the simple reason that once I was out of the ICU it really felt like I was just being kept so they could keep an eye on me and make sure everything was under control.
Right now I still feel a little tired but that could be due to me staying up a little later now that I am home.
To conclude this, it honestly feels like nothing major just happened. I was just in the hospital for 15 days for an operation and now I am out simple as that. It is such a good feeling. But I think that this feeling good sensation could be a trick to some, you feel so good to you might be tempted to not take your meds! What a paradox!
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