Seraphim Posted January 12, 2014 Share Posted January 12, 2014 Things are looking up for you that's good! I am sorry about your dad. Link to comment Share on other sites More sharing options...
metrogirl Posted January 12, 2014 Author Share Posted January 12, 2014 Things are looking up for you that's good! I am sorry about your dad. He was such a funny guy, he would come up with the most random things to say. I remember when I had to help him and my mom find an apartment. We found this little studio apartment and he wasn't thrilled with it but it was do-able. He lit a match and held it up and I asked what he was doing and he responded "it's cold in here". (Meaning that the place was so small you could heat it up with a match.). lol Silly guy. Link to comment Share on other sites More sharing options...
Seraphim Posted January 12, 2014 Share Posted January 12, 2014 He was such a funny guy, he would come up with the most random things to say. I remember when I had to help him and my mom find an apartment. We found this little studio apartment and he wasn't thrilled with it but it was do-able. He lit a match and held it up and I asked what he was doing and he responded "it's cold in here". (Meaning that the place was so small you could heat it up with a match.). lol Silly guy. Lol. He sounded hilarious! Link to comment Share on other sites More sharing options...
Silverbirch Posted January 12, 2014 Share Posted January 12, 2014 Hi MG. Sending you good thoughts and energy through such a difficult time. You are an amazing person. Sent from my iPad using link removed Link to comment Share on other sites More sharing options...
metrogirl Posted January 13, 2014 Author Share Posted January 13, 2014 Thank you Silverbirch. I appreciate the kind thoughts and positive energy. Link to comment Share on other sites More sharing options...
metrogirl Posted January 14, 2014 Author Share Posted January 14, 2014 21 days and counting. OMG, three weeks from today I will be on an operating table. We've waited so long for this and while I was the one that was initially excited and he was terrified, we have apparently switched roles. He is now a little more excited and I'm just a nervous wreck. Yesterday was my best friend's birthday. Her boyfriend planned a surprise birthday dinner for her at a nice Mexican restaurant in downtown LA. I honestly didn't want to go. I had known about it for a few days but the thought of just being around people sent me into a near panic. Jesse talked me into going, he said I need to be around friends and just relax even if only for a day. We got there early, had some appetizers and watched some basketball. Finally the people started showing up and eventually the birthday girl came in and we all had a really nice time. I just ate the little taco appetizers at the bar, I didn't eat dinner with everyone else. I wasn't hungry and it was funny because I was sitting with others that have had weight loss surgery so no one was really eating. LOL I got home kind of late and was worried I was going to have a hard time getting up this morning but I did okay. Where's my coffee? Link to comment Share on other sites More sharing options...
tmp110314 Posted January 14, 2014 Share Posted January 14, 2014 Hi there Metro. I'm still following your thread. Each time I check in to catch up on your posts, I'm absolutely blown away by your approach to life and the impending donation of your kidney to Jesse. I find myself being uplifted by your posts as you meet your challenges and end up with a positive outlook going forward. You've been in my prayers and I really believe that there cannot be anything but a great outcome from the transplant surgery. Thank you for continuing to share your experiences. God Bless!! Link to comment Share on other sites More sharing options...
metrogirl Posted January 15, 2014 Author Share Posted January 15, 2014 Thank you DJohnM. Really sweet of you to say such nice things. 20 days......I spent a little time with Jesse yesterday. I forgot how needy of my time he is when he's not working. Previously when he was working full time and then connecting to the machine, he really didn't want to go anywhere or do anything which was completely understandable. Now he's been off work for 2 weeks and thinks I should just spend all my free time with him after I get off work and sometimes that is okay but sometimes I just need/want to do my own thing. He was a little disappointed that I left after only hanging out for 3 hours. LOL That was plenty for me. I'm going to make some calls today and see if I can go look at a couple of places. Overall I'm feeling less anxious, but still worried of course. I know these next couple of weeks are going to whiz by with all of the appointments we have, I will be in the office just a day here and there until it's time for me to go out. Using the very last of my time off to accompany him at his treatments and then we will be all set to go. In other news, apparently there was an earthquake this morning and that's all anyone can talk of and I didn't feel a thing. I'm actually glad I didn't feel it because I probably would have had a massive panic attack. Having lived in So Cali all my life, I've experienced many and some far nastier than others but they all terrify me just the same. Naturally everyone is on edge, it's almost the 20 year anniversary of the Northridge earthquake. That earthquake if I remember correctly had a foreshock and then the big one hit. A lot of people are making that assumption again, that today's quake could be a foreshock to something much larger and I'm sure that's always a possibility but people are going to kill themselves stressing out about it. We don't know when it's going to hit so why worry about the what if's? HA, I should really practice what I preach. LOL Link to comment Share on other sites More sharing options...
metrogirl Posted January 16, 2014 Author Share Posted January 16, 2014 What a busy morning, I was struggling to get my work done here at the office and file Jesse's disability paperwork online. Phones were ringing, mechanics were in here looking for stuff but being the superwoman that I am, I was able to get everything done. I still have sooo much work to do before I leave out of here in a couple of weeks. Feeling kind of pressured at the moment. Link to comment Share on other sites More sharing options...
metrogirl Posted January 16, 2014 Author Share Posted January 16, 2014 I had heard sirens early this morning here at work and I figured they were going towards this big brush fire nearby but no they were here at my job. One of the bus drivers apparently just dropped dead. I don't recognize his badge number or the name but because I interact with so many bus drivers here, I would have to see a picture of him to see if I knew him. I also heard that 2 other bus drivers from my previous location also died yesterday. Scary stuff. Link to comment Share on other sites More sharing options...
metrogirl Posted January 16, 2014 Author Share Posted January 16, 2014 Well booooo, I called about a 3 bedroom townhouse just a few miles from where I live and the manager said that there is already a pending application. He said I could call back Saturday to see if the other applicant was approved or not. Ok, not giving up hope. I'm sure there are many other places out there, just have to find them. Link to comment Share on other sites More sharing options...
metrogirl Posted January 18, 2014 Author Share Posted January 18, 2014 Probably one of the longest appointments I have ever had to deal with yesterday. Jesse had to be at the transplant center at 8:00am for Rituxin therapy, it was to be a 6 hour infusion. We were there on time, they called us back right away and we thought 'hey this is great, we will be in and out in no time'. WRONG.... When we woke up in the morning, I checked his blood pressure and it was high but it always is. Typically what we do is just give him one of his meds prior to a doctors appointment and it's usually enough to bring it down a bit. If he takes all of his meds early in the morning, even if his blood pressure is high he will quickly get hypotensive and his blood pressure will bottom out. He gets sick, disoriented and even passed out a couple of times so we're pretty careful about how and when he takes his meds. So back to the appointment, we check in and his blood pressure is really high so they wait a bit and see if it will come down. We wait and we wait and we wait and it's still high. Some doctors come in to talk to us and it soars to new levels. Clearly he has some 'white coat syndrome' going on. They decide to order some meds from the pharmacy for him because they aren't comfortable starting his Rituxin when his pressure is high. Meds show up, he takes them and there is zero effect. After 3 1/2 hours of waiting they decide to start his therapy albeit very slowly as to not stress out his heart. Blood pressure is still sky rocketing, they want him to eat to see if that helps. He eats, he walks, he takes a potty break, we watch the sports channel, he reads the newspaper and nothing. They stop his therapy to give him blood pressure meds through an IV, nothing. If anything his blood pressure just goes up. They give him an oral medication that he has never taken before, it's supposed to be fast acting and should do the trick. WRONG.... Literally his blood pressure was between 190 and 210 the entire time. He didn't have any symptoms though, no headache no fast pulse so they just infused him very very slowly and watched him. We checked in at 8:00am and didn't leave the hospital until 7:15 pm. On a positive note, his surgeon met up with us yesterday and discussed his titer numbers with us. Jesse's body is putting up very little resistance and the surgeon feels that this is going to be a super successful transplant! I happened to glance at his name tag while we were chatting and I see that he is also a professor. Holy moly, Jesse will have the best of the best operating on him. In other news, I'm working OT today and training someone and I'm exhausted. Link to comment Share on other sites More sharing options...
OptomisticGirl Posted January 18, 2014 Share Posted January 18, 2014 Good God Mama!! It almost makes you wonder if something was wrong with the machine with it being that high and nothing having an effect on him (plus him not having symptoms). What's left to do with the transplant? Link to comment Share on other sites More sharing options...
metrogirl Posted January 18, 2014 Author Share Posted January 18, 2014 Good God Mama!! It almost makes you wonder if something was wrong with the machine with it being that high and nothing having an effect on him (plus him not having symptoms). What's left to do with the transplant? The evening nurse thought something might be wrong with the cuff or that one of the bandages that he had was cutting into the artery but nope, they swapped cuffs and removed a bandage and waited and it made no difference. So this morning, he takes all of his meds at 8:30am, he checked his blood pressure first and it was 180 something. So he took his meds and he waited to see if he was going to bottom out. I told him if he even felt dizzy to call me and I would rush over there to tend to him. He took the meds and he was fine, he went about his day. He checked his blood pressure a couple of hours later and it's still high so the meds do not appear to be working. Not sure if this is because of the anti rejection meds he is now taking or if something else is going on. I will speak to the doctor on Monday and see if adjustments need to be made to medication. In terms of what is left to do before transplant, the only thing now is Monday he gets a chest catheter put in and Wednesday and Friday he will do plasmapheresis. The following week he will do 3 more plasma sessions and one hemo dialysis session with IVIG therapy. Then we rest for the weekend and get ready for the transplant on the 4th. We have a pre op appointment on the 28th, but I guess that is just a formality with anyone that is having surgery. Link to comment Share on other sites More sharing options...
OptomisticGirl Posted January 18, 2014 Share Posted January 18, 2014 Yeah, def sounds like something is making his medication not work at all. It's not long now! Link to comment Share on other sites More sharing options...
metrogirl Posted January 18, 2014 Author Share Posted January 18, 2014 Yeah, def sounds like something is making his medication not work at all. It's not long now! I'm starting to feel a hell of a lot more pressured now. I can't say that I'm scared, I'm not sure what it is I'm feeling. Link to comment Share on other sites More sharing options...
OptomisticGirl Posted January 18, 2014 Share Posted January 18, 2014 I can only imagine. You guys have looked forward to this for so long, you are bound to feel a million different emotions before (and after) it happens. Link to comment Share on other sites More sharing options...
metrogirl Posted January 19, 2014 Author Share Posted January 19, 2014 I was checking his blood pressure yesterday to see if there was anything out of the ordinary and he was fine. His blood pressure was great after taking his meds, he was relaxed at home. I really think the whole hospital environment just really screws him up. I finally got to spend some time with my grandbabies yesterday. I had four of them at the house and I just wanted to focus on them and not think about anything else. They wrecked my house, I didn't even care. I just loved having them there. The girls went home last night and the boys stayed with me and today, I will send the boys home and let the girls stay with me tonite. They all do fine when I'm at work with just my mom and son at the house. There are never really any issues other than the occasional argument over what show they should watch on the tv. lol I would have liked to go for a hike today but it's football Sunday and I can't miss my team playing today. Holy smokes, I wouldn't miss today's game for anything! Go SEAHAWKS!!!!! Link to comment Share on other sites More sharing options...
metrogirl Posted January 19, 2014 Author Share Posted January 19, 2014 I had a bus driver come to my office, he needed a new bus since his had a mechanical failure. As he approached my office, I greeted him with a friendly and outgoing 'good morning'. He looked at me and extended his hand, he introduced himself as Tommy and said that I completely made his day. He said "I've been here 10 years and you are the first person here in this office that has ever said 'good morning' to me. Something so simple as a friendly hello and a smile really can make someone feel better and I'm glad that I made someone's day. Link to comment Share on other sites More sharing options...
OptomisticGirl Posted January 20, 2014 Share Posted January 20, 2014 How did the Seahawks do Mama? Link to comment Share on other sites More sharing options...
metrogirl Posted January 20, 2014 Author Share Posted January 20, 2014 How did the Seahawks do Mama? Seahawks are going to the Superbowl! My throat hurts today from screaming so much yesterday. Things looked bad in the beginning, the 49ers were making some darned good plays. They have a really tough defense so I knew early on the game was going to be a brawl until the end and it was! So incredibly proud to be a Seahawk fan right now. Some people I know like to jump from team to team, whatever is hot for the moment. Not me, I have stuck it through with the Seahawks even at their worst and now look at them. So today I'm leaving work at noon. Jesse has an appointment to get his chest catheter put in. I'm anticipating lots of neediness from him later today and probably this week. God give me strength, this is all almost over. Link to comment Share on other sites More sharing options...
OptomisticGirl Posted January 20, 2014 Share Posted January 20, 2014 Yay!! Will you guys be able to watch the Superbowl? It's two days before the transplant, right? Link to comment Share on other sites More sharing options...
metrogirl Posted January 21, 2014 Author Share Posted January 21, 2014 Yay!! Will you guys be able to watch the Superbowl? It's two days before the transplant, right? I'm sure we will watch it somewhere, it just won't be in Vegas. Too many people out there, far too many germs and he is currently on his way to being immunosuppressed. So just when I was starting to feel a little relaxed about everything, I was served with court papers last night for the eviction. I had just returned from Jesse's house. Earlier in the day, he had a chest catheter put in and I was hanging out with him at home to make sure he was okay. I come home and there's a stack of court papers that had been served. I knew it was coming, I didn't think it was coming so soon. Now I have to file an answer in five days and well frankly I don't know how the hell I am supposed to do that when I have to be at the transplant center with him while he has treatments. My stomach just instantly knotted last night and I ended up with a pounding migraine, which I also woke up to. My daughter has been looking for bigger places, she wants to move and thought we might have better luck if we found just one big house to share. It doesn't matter to me really, I just need to get out of there. I guess if that doesn't surface then I will continue to look for something for the four of us. I will cram us into a 2 bedroom temporarily I have to. I'm at work and I feel sick. Sometimes I think it's bad that so many people depend on me, I really just want to throw in the towel right now. Link to comment Share on other sites More sharing options...
annie24 Posted January 21, 2014 Share Posted January 21, 2014 Hang in there mama!! I know that things will get better for you and Jesse soon!!!! Link to comment Share on other sites More sharing options...
Seraphim Posted January 21, 2014 Share Posted January 21, 2014 Awwww honey BIG HUGS. Link to comment Share on other sites More sharing options...
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