Public Relations

I don't think I mentioned that a medical center public relations staff member came to visit me in the hospital. She somehow heard about my 22 hour stay in post-op and came to get my story. While she was there, we complained about the doctors not answering their pages, too. She brought a fleece blanket with the name of the medical center printed on it. She also offered my husband her business card with a note on the back that would allow free parking for the rest of our stay. We were only there for one more day, but my husband did try to use the card. The parking lot attendant didn't know what do make of it and didn't want to accept it. She even tried to take away the card, but he managed to get it back. We are planning to call her back to see what they are going to do to fix the post-op/no-rooms-available problem. Whatever. At least my post-op nurse was the best nurse I had for the entire stay. She was terrific.

I'm a bitch

I have tried to let this go, but after an hour in bed unsuccessfully attempting sleep, I figured I'd get my rant out and be done with it. Before I do, I want to note that several individuals from my work have sent me very nice get well cards. I also want to note that I understand it's holiday time and people have a lot of things going on in their lives. Here's my rant:

My workplace has not sent me flowers or a card -- I'm talking about the group as a whole. The cards I mentioned before came from people in the department where my office resides. I had only worked near them for about one month prior to leaving for surgery. Previous to that I worked with 2 other departments quite closely -- for a 1 1/2 years. I would quite easily chalk this oversight up to the holidays and the fact that many of the people in those departments are big social dorks, but for one fact: Six months ago, another co-worker in one of those two departments was out for hip replacement surgery. While she was out, I chipped in to send her flowers and a card NOT ONCE, BUT TWICE. Fucking twice! While I was in the hospital, the head of one of those departments sent me an email message through the hospital staff. (They apparently have some way to received such messages.) A nurse printed the stupid thing out and delivered it to my room. Otherwise, nothing. And it's not just these 2 departments, I am faculty and the faculty chair didn't send me anything either. When I mentioned this to my mother, she was surprised. Isn't it normal that your workplace sends you at least a group card when you're out for surgery?

I have mixed feelings...I feel bad for complaining because they really don't HAVE to do anything. Also, I feel angry for being slighted. Then again, I tell myself not to take things personally -- and don't EXPECT anything. I mean, my expectations that they WOULD send a card or flowers is what is being let down right now and they aren't responsible for MY expectations. However, that doesn't mean I can easily think myself out of these feelings. And that's what's bothering me. If only they hadn't sent that other woman 2 FUCKING floral arrangements....TWO! It's just not right.

First Week is the Hardest

I started feeling really good Sunday. I don't know why, but I'm not complaining. After more than a week of nausea from all of the meds, I am ready for feeling good. Here is a list of the pills I take daily:

6, 1 mg Prograf (Tacrolimus) - prevents rejection
2, 350 mg Myfortic (Mycophenolate sodium) - prevents rejection
4, 5 mg Prednisone (steroid) - prevents rejection
1, 450 mg Valcyte (valganciclovir Hydrochloride) - treats/prevents viral infections
1, 400/80 mg Bactrim (Sulfamethoxazole; Trimethoprim) - treats/prevents bacterial infections
1, 40 mg Protonix (Pantoprazole) -treats/prevents stomach ulcer/hearburn
1, 10 mg Amiodipine - controls blood pressure
1, 10 mg Mycelex Troche (Clotrimazole) 3 times a day - treats/prevents fungal infections

Also, I have another blood pressure medicine I am only required to take when my SBP is greater than 160. I'm a little concerned about my blood pressure. At one point today I had a 147/104 BP. That worries me. If I sit still for a minute or two and measure again, it comes down, but just the fact that it gets that high at all is bothersome. They tell me that the Myfortic can cause the BP increase, but that it should "even out" over time. It'll certainly get better when I begin to exercise again, too.

Honestly, I was so fucking bummed so often over the last week, I was thinking and even saying things that were really awful. At one point in the doctor's office last Friday, I was feeling sick from the meds. My husband was there with me and I said something like "This kidney will last me 20 years if I'm lucky, maybe 25, but then I'll be OK to die. I don't need to live any longer than that if it means going through all of this again. I shouldn't say those things to my husand because it upsets him. He knows I would like to live to be over 100 years old so it was upsetting for him to hear me say that. the good thing is that I don't feel that way any longer.

My surgeon did a beautiful job with the incision. I can't get over how perfect it is. I can see a little bit of it where the steri strips are starting to peel away. It's healing so well I think it will be almost invisible. I am looking forward to thanking him -- and for thanking him again for making the kidney work. I know another surgeon wouldn't have done such an excellent job and I'm grateful he worked on both me and my cousin.

Surgery Day 2, 3, 4, 5

As I mentioned before, I spent the night in post-op. We finally got a room around 2:30 p.m. if I'm remembering correctly ( I know we spent a record 22 hours in post-op). Obviously, that was bullshit about the shift change and getting a room at 8 a.m. There actually weren't any private rooms available, so we had to wait for someone to leave the hospital and for the room to be cleaned.

My graft was taken from my thigh, near the top in the front. By Saturday evening, I noticed that the wound was "leaking." I showed it to the nurse, who said she couldn't change the dressing without an order from the doctor and paged the doctor. I showed at least 2 resident's, maybe 3, on Sunday and the Sunday nurse paged whatever doctor was on call to come by to check on me. I was told over and over from Saturday evening and all day Sunday that my surgeon was coming to my room to change the dressing. By 10:30 p.m. on Sunday, I still hadn't seen the doctor so I called the transplant office and had my transplant coordinator paged. She listened to my complaints and said she'd contact the surgeon. Finally, at 11:30 p.m. on Sunday evening, the surgeon arrived with his resident...I remember 3 people, but I don't remember who the 3rd person was. My surgeon changed the dressing and applied some adhesive strips to hold the glued wound shut better than glue alone. It was completely gross because the wound was gaping open. I was relieved to have it finally taken care of.

By Monday mid-day, the graft had broken open again and was leaking again. The nurse paged the resident on call several times, but by 9 p.m. that evening nobody had come to check me. Since we had been asking all afternoon, as we had done nothing but wait endlessly since we had arrived in this damn hospital, my husband and I got very upset. We decided we'd walk downstairs to the emergency room, where we knew a doctor would be available, we would perhaps have a better chance of seeing a doctor. At least on Sunday, we were told over and over that the doctor would be coming. He even apologized (through the nurse) for the delays. While you're in the hospital, you have this heart monitor on the entire time (a "teli".) I removed them and left them on the bed as we got my robe on and unplugged the IV to prepare for our walk.

It didn't take long for someone to be alerted by the lack of my heart beat in their monitoring room. When the nurse arrived to check on me, we told her we weren't waiting any longer. We were going to see a doctor in the next 20 minutes, or we would go to the emergency room for help. She went to get the charge nurse who told us she'd try to page the resident again. We walked to the nurses station just in time to hear the charge nurse on the phone telling the doctor we were threatening to leave and that I had removed my "teli".

A doctor arrived about 25 minutes later and fixed me up properly with very strong adhesive strips. He stated that the strips that had been used previously were inadequate. He even went to the emergency room to get the proper supplies. He seemed like a very nice man and did a thorough job.

I was pretty upset about this situation. Especially, since the doctor who came was not the doctor on duty. He was the back-up for my surgeon's resident. He diplomatically assured us that she (the resident on duty - my surgeon's resident, Dr. K.) must have been tied up with something important. Dr. K visited me each morning I was in the hospital from Sunday through Wednesday when I left. She had an awful bed-side manner and when I told her my concerns she'd ignore them selectively. Say, if I said I was experiencing A, and B. She address A, but ignore B. Her answers were cursory and sometimes threatening. For example, after 2 days of solid food, I still had not had a bowel movement. (This is an important milestone when recovering from surgery.) Her response was not to "give it time" or something else supportive. She also didn't give me any sense of how long I should expect it to take. (As it turns out, it took about 6 days after I started eating solid food.) She did say "There's only one other solution for that." Clearly referring to an enema. Whatever.

I have nothing but good things to say about the nurses. Their jobs are difficult. People aren't very nice when they are sick. I tried to be as nice as possible while I was there. I would always thank them and ask please for things. Also, when we threatened to leave, I made sure to make it clear that I was upset with the doctors for not responding, but that I understood that the nurses were doing everything possible. Some nurses were better than others, but they were all very kind and proficient. I got the sense they were overworked even though the hospital certainly follows standards for patient to nurse ratios (I hope.) The reason I think that is the way they would seem to run around everywhere like they were always in a hurry. Also, the linens on my bed were only changed when we asked and I only got bathed if I did it myself, which was extremely difficult even when I was able to get out of bed after day 2 (with help.) Bending at the waist was nearly impossible. My husband helped me a lot, but I just didn't want to ask him to bath me, too. I mean, there has to be some detail sparing.

Another good thing is they let my husband stay with me in the hospital. They provided a cot for him and everything. He would go home during the day when my Mom or a friend was there with me in order to shower and check on the cats. Sometimes, he'd take a nap since we were always awakened at 6 a.m. in the morning for vitals, blood work and weighing -- which meant I had to get out of bed. What a pain, literally.

My Cousin's Surgery

I don't yet have all of the details, but I do know that because there were extra veins on her kidney, she had increased blood loss. She was in the operating room longer than planned. Also, they had to change the incision to a vertical rather than horizontal one. Someone did say that was an easier incision to heal from -- who knows. She was hobbling around same as me and experienced nausea and such. They had to really jostle stuff around on her insides to get the kidney out, too. That's hard on your body. Also, she had some previous laparoscopic surgery so the scar tissue caused problems -- I think it did, at least. I've been drugged up for a lot of the last few days so some of the details were lost in the dilaudid. lol.

I can't believe her kidney is inside me making urine right now. It's awesome. She's awesome.

Surgery Day

I reported to the hospital on the day of the surgery at 7a.m. I didn't have to wait long before the admissions people took me in to sign paperwork and get my wrist band identifying me as a patient. A waited a few more minutes with my mother and husband. Maybe 30 minutes before they came to take me to pre-op. There were a lot of surgeries scheduled that morning at there was a back-log of patients in pre-op. So they took me into a short term hospital stay room -- like where outpatients recover. I got into a hospital gown and they put an IV in me. I waited in there for a really long time. Probably an hour or so. A good friend of mine who is an RN at that hospital, checked on the hold-up and discovered that my cousin went into surgery late and therefore, I wouldn't be going in on time either. While I was there, I met the anesthesiologist.

I was finally taken into the pre-op room when a bed opened up. Unfortunately, I had to be wheeled on a gurney through the fucking waiting room to get to pre-op. I had a gown and a shower cap type thing over my hair. It was embarrassing.

I must have waited in pre-op with my husband and friend for over an hour and a half. During that time, they put these squeezey things on my legs to keep my circulation going and prevent blood clots. I met the surgical resident, Dr. K. They rolled me into the operating room and gave me something to relax me. I remember the room being very bright, but there was no music. Shortly after I got there, they put oxygen on my and I remember feeling suffocated by it. It was uncomfortable. I don't know why they thought it was a good thing. Anyhow somebody tightened the mask and leaned over me, upside down, and said "we're going to put you to sleep now, Heather" and that's the last I remember until I woke up.

When I woke up around 5:45 p.m., I remember feeling a lot pain in my right arm. Someone was talking to me, but I don't know who. I was bleary eyed and felt it was difficult to speak. This is all typical when waking from anesthesia. I saw my surgeon across the room and called his name. He came over and stood next to me for a few minutes. Then I wanted my husband and started to cry. I don't remember a lot of pain. It seems like they gave me something right away. I was there with my husband for hours and hours. I was still in post-op at 11:30 p.m. because the hospital didn't have an open room for me. After 6 hours, the bussel and noise in post-op was getting overwhelming. My bed was right across from the phone and nurses station so it was really loud. They kept telling us I would have a room shortly, but I was there for hours and hours. My husband stayed with me, too.

Around midnight, they cleared a room in post-op for me because I was beginning to lose my mind with the ruckus. It was a tiny room, but at least it was private from the rest of the post-op. All of the nurses said that that since it's a trauma hospital, they can't always plan that well for a room to be available when it's needed. Emergencies and all, bla bla. We asked to see a supervisor. When she came by around midnight and told us that a room WAS available, but that there wasn't staff up there to deal with me right now. That after the 7 a.m. nursing shift change, I could be moved upstairs. Sometime around 8 a.m. we should get a room. We thought she was lying by the tone of her voice. Then her shift was over and she went home.

So we spent the night in post-op.

The Surgery - complications

I had my surgery on Friday. Although the stats were with me, I was in the minority. My cousins kidney has some abnormalities that made the transplant difficult. The surgery took nearly 6 hours instead of 3-4 as planned. They had to call in a vascular surgeon to help by taking a vein to from my leg to graft the kidney. They had to place the kidney in a different position than is typical, too, but it works! They spent an hour making sure it was in a good location and wouldn't move. A full hour. I had a great surgeon and I'm absolutely positive this kidney will work for at least the next 20 years. Now it's up to me to take good care of it.

I'm going to take the next few blog entries to talk about the days after my surgery, the hospital stay and what it was really like.

Friday is Almost Here

Today was my last day at work before the surgery. (We go in early Friday morning for the surgery.) Several co-workers gave me cards and gifts like magazines and slippers. It's very thoughtful. I wrapped up my duties as well as I could. We managed to run through a lot of features of the software package before I left so that's good. I stopped in to see most of my close co-workers on my way out. Then ran into 3 more on my way out -- what good timing! I set my away message on email, changed my voice mail, and left early.

My cousin arrived Monday and we've been able to spend some time together, catching up. I want everyone to meet her. Maybe they will at the hospital. The thing is, I didn't choose to have this disease, nor is this surgery an option for me. But she chose to give me a kidney. She's doing something amazing completely out of the goodness of her heart. It's overwhelming.

But still my emotions haven't set in. I feel disconnected much of the time. I suspect that's just how my brain is dealing with the situation. I suppose I am more quiet than usual and I'm certainly much more tired, yet I don't have any clear feelings. People say 2 things to me most often: 1) You'll be fine (or something similar) and 2) How do you feel? I don't know how I feel and I'm an honest person, so I usually say that. I'm not nervous. I'm not scared. I am having a hard time believing it's really going to happen -- but I'm not going to think hard about it because the day will be here soon and there isn't any way to prepare for it after all. I think I'm a lot stronger than I knew.

Surgery in 5 days

Time is running out. I've been keeping busy. I went out for lunch with co-workers twice last week and out for dinner Thursday, Friday and Saturday with friends. My friends have been really supportive -- as have my co-workers, but especially my husband. Today he brought home Nintendo DS with the Brain Age game. Something for me to do while I'm recovering. I need to get other activities prepared for the recovery as well. I'd like to do some knitting. I'd also like to do some reading related to my job -- maybe get some ideas for an article. I figure I'll check my work email, too, since I can easily do that on my cell phone. I want to download some new music, too. I need to do some laundry. I need to pack a bag for the hospital. I guess I can wear my own PJs after a few days. I'll bring some. I'll also bring some lotion and lip stuff...I hate to dry out. Deodorant...a little make-up and my hair brush. I'm not sure what else...a bathrobe? I suspect they'll have hospital robes, but I like my robe.

I've been keeping busy with a craft project. I'm making a centerpiece holiday tree -- it's a Styrofoam tree with beads covering it (and silver ribbon.) It's time consuming. I'll have it done in the next day or two.

Tomorrow my cousin gets into town. I'll pick her up at the airport. I should clean the house, but I just don't care. Maybe I'll just run the vacuum tomorrow morning and call it good.

We got a new cat bed today. So far 3 out of 4 of the cats have tried it out. They like new stuff. Funny.

I have to begin taking a couple of anti rejection meds on Wednesday. I'll tell you more about that later. Also, I met with my surgeon on Friday. I'll tell you about that, too.