I've spent this entire hospital stay going from one issue with my health to the next. Thing is, that was OK. I had a great team of doctors that understood me enough to work with me. I was real nervous about the teams switching over, things don't get passed over correctly, they possibly change the entire plan I was comfortable with etc. I let people know my fears. Today the team switched. Every last fear and then some were realized. The Intern, is an arrogant little bitch who after being told that my husband wanted to speak with her and her accepting, came back into the room 5 mins before he gets there (going out of his way, mind you) and tells me that "something came up" and she can't talk to him tonight. She suggests other times, all on the phone (which he hates) and not in person. All were times that I had previously explained to her were times he worked, was doing something else, taking care of the kids etc. When I suggested that this was awfully convenient, she tells me "I didn't even have to let you know this, I could have just gone and not been available." Well, yes I'm sorry yes you did have to tell me. You were canceling an appointment to speak to the spouse of one of your patients.
It's all over now, I've asked to be transferred to a new team of doctors and explained to the nurses that I absolutely will not work with such rudeness. Her plan if she has her way is to get a graft in me (which she is convinced is accessible immediately and the vascular surgeons verified with me for a third time that it indeed is not) get me transferred from a heparin drip and changed over to pill form blood thinners and once my blood is therapeutic send me home. No testing for transplant. No nothing working towards that reality.
Add on top of this that the catheter in my leg is an issue. Say they even find a vein that's good enough (still a big question if they will tomorrow) and the graft isn't usable for a month, this leg catheter causes me so much pain right now that I am regularly crying in pain and require high amounts of pain meds to make it bearable. She's said nothing about this issue. I've brought it up many times today. I'm not getting the answers I need, and I'm not pleased. If I wind up moving on further and this keeps happening tomorrow and/or I don't get transferred to a new team I am going to have to use Condition H (Which is the hospitals lifeline for patients and their family when they think somethings not right and no one else is doing a damned thing about it) I'm not 100% how it works but I will be asking my nurse (who I adore tonight) tonight so I have the information.
As it stands...Looks like I'll be back home in 2-8 days.
Oh; PS to Dr. Amanda who said she would check this blog to see how things went- "You were so wrong about me getting along with this rude, superficial and ill mannered person who seems to think she's going to be a doctor some day. She shouldn't be dealing with people at all in any way. Research maybe...Administration would be even better..then she can be rude and people will just nod and smile since Admin. is filled with hot air and nonsense.
Monday, November 29, 2010
Sunday, November 28, 2010
Transplant and Time and Illness
So many people have reached out in an effort to assist my family and I while I am going through this issue. I've also seen the eagerness in some of them. I know you are eager, folks however there are somethings about transplant you need to know. (especially on my case)
- I have Endocarditis, which is an infection on my heart. I cannot even be listed as available for transplant until they are finished with the Antibiotics and the TEE (camera down my throat to look at my heart test) is clean. The reason is, if this infection is not cleared up it will infect the new organ and because I will be on Immune Suppressants and any infection while on those could kill me.
- While I have this infection, I have been going through my "work up" which is a bunch of tests checking just about every major system in my body to make sure there isn't any further damage we didn't know about. At this point, I only have one or two tests to have.
- Using this time (For potential donors) to get your own workups done is a great and valuable thing. It will make sure that whoever winds up as a donor is ready when I am leaving no gap for something else to occur.
- For those who wish to be living donors, you have no idea what a wonderful gift you are giving me, however meeting the guidelines is so very important as is making sure you are patient while we ride through the process together.
- It is also a rule/law that you be over 18 to donate to me. I have seen some people on various bulletin boards saying things about wanting to, but can't tell their parents because they would say no. If you are of an age where you have to listen to your parents legally, then there is no way you can donate yet. I'm sorry , but if you still want to help me feel better, I love getting cards and letters.
- I highly suggest potential donors read this website: http://www.livingdonorsonline.org/ It has wonderful current information and answers questions you might have concisely.
- There is an issue of cost to also keep in mind. Insurance covers the cost of the medical stuff, however there will be time off from work and the bills, they don't stop because your a saint and gave up an organ (not being sarcastic here, I really think anyone who does this is a saint) To help with that, my family and I have set up a guest room in our home for the donor to come back to and recover. Meals etc will be provided. We are currently working on figuring out some fundraiser to assist the donor with expenses.
Todays Med Update
Well, last night was fun! (not!) I had a running 100.4 degree fever (I know not very high, but any fever right now is suspect as a sign of sepsis) and some fairly amazing pain and dizziness and after dialysis tachycardia (Fast heart rate). I should perhaps go in order, I get ahead of myself.
Early in the afternoon, I was sitting in bed on my computer and I sat up straighter to ease my back a little and the dialysis catheter..slipped..somehow. It's been annoying and quasi-painful before this but this time it hit something serious. Tears sprang to my eyes and I began bawling with pain. This is not something I do, I am pretty stoic in the face of most pain. So the nurse being a sweetheart stayed by me while she called the doc to get an OK for more pain meds. After what would be enough pain meds to knock out a village, I was mostly comfortable again. I went back to my chat room and putzed around (since doing anything productive that doped up was out of the question)
Eventually they called me for dialysis, being smart I asked for zofran ( an anti-nausea drug) So that I lowered my chances of puking my guts out in the clinic again.After dealing with the most surly patient care techs and got set up, the catheter sputter and bubbled but, in the end they got in a full treatment. As I was leaving the clinic the nurse let me know that my heart rate was too fast, and we sat for a while but it didn't really come down. I eventually went back to my floor and room, and almost passed out in the few steps from wheelchair to bed. Until then, I wasn't aware that it was possible to be dizzy sitting down. I got settled and tried to go about my night.
I had had the feeling longer into the evening that maybe I had a temperature. So, I checked it it was 100.2 , so I called my nurse in and she took blood and I called it a night. When I woke the fever was gone. I hope that the fact that I had even a low grade fever in the last 48 hours won't stand in the way of doing the procedure to my veins Monday. I will have to ask the Doc when they come in sometime today.
Early in the afternoon, I was sitting in bed on my computer and I sat up straighter to ease my back a little and the dialysis catheter..slipped..somehow. It's been annoying and quasi-painful before this but this time it hit something serious. Tears sprang to my eyes and I began bawling with pain. This is not something I do, I am pretty stoic in the face of most pain. So the nurse being a sweetheart stayed by me while she called the doc to get an OK for more pain meds. After what would be enough pain meds to knock out a village, I was mostly comfortable again. I went back to my chat room and putzed around (since doing anything productive that doped up was out of the question)
Eventually they called me for dialysis, being smart I asked for zofran ( an anti-nausea drug) So that I lowered my chances of puking my guts out in the clinic again.After dealing with the most surly patient care techs and got set up, the catheter sputter and bubbled but, in the end they got in a full treatment. As I was leaving the clinic the nurse let me know that my heart rate was too fast, and we sat for a while but it didn't really come down. I eventually went back to my floor and room, and almost passed out in the few steps from wheelchair to bed. Until then, I wasn't aware that it was possible to be dizzy sitting down. I got settled and tried to go about my night.
I had had the feeling longer into the evening that maybe I had a temperature. So, I checked it it was 100.2 , so I called my nurse in and she took blood and I called it a night. When I woke the fever was gone. I hope that the fact that I had even a low grade fever in the last 48 hours won't stand in the way of doing the procedure to my veins Monday. I will have to ask the Doc when they come in sometime today.
Saturday, November 27, 2010
Personal Update
I know I've not been so good about posting more than just the facts. I'm going to try to be better about that. I'm doing OK enough morale wise so far, the news that I'm here for the long term wasn't something I had not already expected, even before the doctors said as much. I've been spending most of my time being completely overawed by the help that everyone is giving me and my family, and really we couldn't do this without the help we've been granted. Even still...it amazes me.
People have been asking for my contact info/address etc so that they can send care packages and cards and what not and others have been asking for the main house address so they can send assistance there. I will be putting up a simple webpage today with all that information as well as a paypal link. Some folks are insisting beyond my protests of sending cash assistance. I won't say it isn't needed or that it isn't appreciated immensely..I guess I still have some remnants of pride left.
What I will definitely be doing though is organizing the names and addresses of those who are assisting, getting tested etc and sending out cards and personal letters and what not. I seriously enjoy that type of activity and think that everyone enjoys getting a letter or a card in the mail now and again in this world of instant everything (especially instant communications).
Also, thanks to the ideas of some of the folks on facebook, I'm going to start a fundraising campaign for the person who eventually becomes the donor. The medical expenses are taken care of, however there's recovery time and lost work to consider. It's the least I can do to help things along and take care of the people who have helped me and my family.
Well, I guess that's about it for now, I will be writing one more bit on the donor process since a few folks seem to have some serious misconceptions.
Once again though, I am sending out a huge "thank you" and a huge hug to everyone who is pulling for me. It helps me to remain strong and helpful!
People have been asking for my contact info/address etc so that they can send care packages and cards and what not and others have been asking for the main house address so they can send assistance there. I will be putting up a simple webpage today with all that information as well as a paypal link. Some folks are insisting beyond my protests of sending cash assistance. I won't say it isn't needed or that it isn't appreciated immensely..I guess I still have some remnants of pride left.
What I will definitely be doing though is organizing the names and addresses of those who are assisting, getting tested etc and sending out cards and personal letters and what not. I seriously enjoy that type of activity and think that everyone enjoys getting a letter or a card in the mail now and again in this world of instant everything (especially instant communications).
Also, thanks to the ideas of some of the folks on facebook, I'm going to start a fundraising campaign for the person who eventually becomes the donor. The medical expenses are taken care of, however there's recovery time and lost work to consider. It's the least I can do to help things along and take care of the people who have helped me and my family.
Well, I guess that's about it for now, I will be writing one more bit on the donor process since a few folks seem to have some serious misconceptions.
Once again though, I am sending out a huge "thank you" and a huge hug to everyone who is pulling for me. It helps me to remain strong and helpful!
More updates.
So, next week I go in for an exploratory procedure that will show all the veins in my upper chest and how they are. It uses contrast dye not something I'm fond of but oh well. Apparently I need to be put under full sedation for this...I'm not sure why but I have to assume it's a painful operation even though there aren't doing any cutting I don't believe. Before they do that though, they need to speak with the hematologist to perhaps explore why I'm still clotting even on heparin.
Unfortunately, the dialysis catheter I have now is rubbing up against something rather painful and making me quite uncomfortable. They promise to look at it, but I can tell they are more concerned about other things. It irritates me a little because i'd like to start stepping down from my pain meds.
It's really rather strange, each doctor on my team has such different outlooks on the situation. Especially the residents and Interns. One has a no nonsense view and told me flat out I'm here for a while. One seems to think that they can get me to go home (He's the youngest and least experienced) and the specialists are all annoyed at the things done and not done because it's not ideal for -them- and each specialist contradicts the other. So I sit back and wait till all the information comes in and put it together in my head on my own till it makes sense
Testing and meetings and Update
Had the TEE (otherwise known as camera down my throat test) and it revealed that the infection that is growing on my heart is indeed getting smaller. It was almost an inch in size in the beginning, it is now 1/2 inch maybe a little smaller. Doctor Ray (Otherwise known as Dr. Awesome) came in to see me after the vascular surgeon did a quick look over on me. He then gave me the news that really annoyed me.
I'm in here until the antibiotics are done. That's December 15th. It's more likely that I will be in until after the New Year, and just remain through the transplant. It's a long time. I'm wrapping my head around it now, preparing to spend a lot of time in this bed and on this wing.
Now, there is a chance that Vascular surgery will be convinced to do it anyway. No one is thrilled about doing this surgery at all. If that happens who knows what will occur. It will be uncharted ground.
Apparently this is the only test happening today, and the Doctors are going to have a big meeting with all the specialists either today or tomorrow about what courses of action we need to take. One thing is certain though, they will be doing all the work up tests for transplant so that it's ready when the time comes.
More news as it arrives, and a short note about how the family is doing will be coming soon as well.
I'm in here until the antibiotics are done. That's December 15th. It's more likely that I will be in until after the New Year, and just remain through the transplant. It's a long time. I'm wrapping my head around it now, preparing to spend a lot of time in this bed and on this wing.
Now, there is a chance that Vascular surgery will be convinced to do it anyway. No one is thrilled about doing this surgery at all. If that happens who knows what will occur. It will be uncharted ground.
Apparently this is the only test happening today, and the Doctors are going to have a big meeting with all the specialists either today or tomorrow about what courses of action we need to take. One thing is certain though, they will be doing all the work up tests for transplant so that it's ready when the time comes.
More news as it arrives, and a short note about how the family is doing will be coming soon as well.
Thursday, November 25, 2010
Musing
Something in my head broke tonight. Not in a bad way, although it hurt at first. I'm thinking more clearly now than I have since I had gotten sick. Last night my Husband confronted me with the face that I had been holding everything in, being strong for everyone around me and not really internalizing what was happening. He, in short made me cry for the first time since I was hospitalized. Well, first time in front of anyone at least. I learned then that tears shared are healing while tears hidden just hurt you more.
I know what I want my life to look like now if I am given the chance. I had an idea before, but now it's crystal clear. I wish to obtain my addictions certificate and finally begin practicing my art/skill/science on a volunteer basis at my Temple and in my community. I also hope to obtain a job where Rob can choose if he wants to work or remain home with the kids or not. I have very little desire for anything for my self anymore...it's fleeting. The changes I can help others make though, that is lasting.
So, for those who have been keeping track of everything...now you know why I desire to live. At least one of the reasons.
Tomorrow, I wake to something new..something I've not had in a very long time. Purpose. I will undergo all the tests I am given with as much grace as I can and endure what is necessary to see myself a full return to health so that I may complete the work I have known for so long but hesitated at before.
I know what I want my life to look like now if I am given the chance. I had an idea before, but now it's crystal clear. I wish to obtain my addictions certificate and finally begin practicing my art/skill/science on a volunteer basis at my Temple and in my community. I also hope to obtain a job where Rob can choose if he wants to work or remain home with the kids or not. I have very little desire for anything for my self anymore...it's fleeting. The changes I can help others make though, that is lasting.
So, for those who have been keeping track of everything...now you know why I desire to live. At least one of the reasons.
Tomorrow, I wake to something new..something I've not had in a very long time. Purpose. I will undergo all the tests I am given with as much grace as I can and endure what is necessary to see myself a full return to health so that I may complete the work I have known for so long but hesitated at before.
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