It's been almost a week since I've had my new central line placed. It ended up being another port-a-cath (much larger than the one I already have) placed instead of a broviac line. The pro is that it's all under my skin and I can shower and not worry so much about infection, but the con is that I'm not sure if the pheresis team is going to be happy when they see that the line I got is only single lumen. I'm really hoping they don't have me go back and get another line because the surgeon didn't do the one they wanted.
My first photopheresis treatment is finally scheduled for tomorrow morning (8:15am). Benito is taking the morning off of work to go with me. I'll have another appointment on Friday then probably twice again next week and so on for a 6-18 months depending on whether or not we feel it's working. I'm nervous and excited about getting it started. I'll be very sensitive to the sun for 24-48hrs after each treatment, so I've been told to get a good sunscreen and dark sunglasses to wear. I'm going to have to get new prescription sunglasses because the ones I have are not enough coverage.
On a slightly hopeful note, I had CF clinic this past Monday and my PFTs didn't show any decline since my last visit! That's the first time in a very long time since my PFTs have been the same instead of dropping between visits. It makes me think that switching my Azithromycin to 250mg every day instead of 500mg 3x a week has been helpful. I wish I would have known sooner that I was able to do that.
That's all for now. I'll try and post sometime this weekend about how the pheresis treatments went.
This is a blog of a woman who is learning to LIVE after being given The Gift Of Life - a double lung transplant.
Wednesday, May 4, 2011
Tuesday, April 26, 2011
Here we gooooooooo
I got the call yesterday that my insurance has approved the photopheresis treatments!! I was so happy I couldn't stop crying. I'm being given another chance to live; I just hope these treatments work and I can keep these lungs of mine for many more years to come!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
Thursday, April 14, 2011
Ask enough and you shall receive
First of all I want to thank the readers of my blog who continually come back for updates even though I do not always have new ones to share. I also want to apologize for not updating more often. I've never been the kind of person who is able to write just a little at a time, so I seem to put off writing updates because I know it will take a huge chunk of time to do so and can never commit myself to sit down long enough with my laptop and write. I owe it to you all as friends who have offered their support and prayers to me and my family to write more often and give you the updates you come to read. So I'm going to do my best to write at LEAST once a month (a suggestion given by one of my readers) and update you something about what's going on with me. It may not be a long update, but I'll try to at least let you know how my health is holding up at the time. :)
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
Saturday, March 5, 2011
Ray Lamontagne soothes the soul
It's been over a month since I've been told there is nothing left to do but wait to get sicker. A lot has happened since I've last updated, so I'll try to cover everything.
I'm sitting in my bed with my laptop listening to Ray Lamontagne; letting his raspy voice and beautiful lyrics soothe my soul while I recall some of the not so fun things that have happened so far this year.
My last post went over what happened at my last CF clinic appointment. Just a quick recap: After Stanford declined taking me on as a patient, I was relying on my CF doctors to help stop the decline in lung function. Why not have my transplant center (UCSF) take care of me and my possible chronic rejection you ask? Well, my transplant center is one of what seems like a growing group of transplant centers that are very apathetic toward their patients (I should include there are a Few people I've talked to who have not had this same experience with UCSF) and do not have a protocol toward treating chronic rejection. My CF doctors have exhausted all their resources and are not familiar enough with the transplant field to know what to do for the possible chronic rejection(CR). So, I've been left with absolutely no idea what I'm to do about my increasingly fast decline of lung function. In the last month alone Benito and I both can tell a huge difference in my breathing. My last fev1 (lung function lingo) was at 33% prediction, which is at the point where people would be listed for transplant. I was at 17% fev1 at the point of my first transplant, but since the damage CF did to my lungs was so gradual, I was able to adapt to the low lung function. The decline I have now seems to be happening to fast that I'm not able to adapt and it feels like it takes forever to be able to catch my breath after walking just a few feet. Imagine trying to inhale through an empty balloon... That's exactly how my chest feels when I'm out of breath. My sound of my breathing is getting to be so noisy that it keeps me up at night (I sleep with a fan going even if it's freezing, just to try and cover the noise of my breathing).
So after the last clinic appointment at my CF center I had yet another balloon dilatation done on my right narrow airway and after that procedure was over, my doctor came to the recovery room and talked with Benito and I about where we need to go from here. I had brought a printed out copy of a conversation between a very good CF/Transplant friend of mine who goes to Duke hospital. In these conversations she was helping me with what treatments she knew of that hers and others have used to treat chronic rejection. I gave this copy to my CF doctor to read over before my procedure that day and by the time I saw him after the procedure he had read it over a few times and had spent a half hour speaking with the pulmonologist there at UCD that worked my up for my transplant evaluation six years ago. This pulmonologist used to work with the lung transplant team at UCD years ago when there actually was one, so he knows a little more about transplants than my CF doctor. Basically all they came up with, was that I needed a transplant center to administer these treatments because they have never prescribed them and didn't feel comfortable having me be their guinea pig. So, this left me to first go back to UCSF and see what they could do for me, then if I get nowhere with them, I can look into possibly going to UCLA, but it's eight hours from where we live and it would be both physically and financially draining to have to relocate.
Fast forward to February 10-11th. Benito and I went to San Francisco to visit my transplant doctor for the first time in a year hoping they will give us some hope, although I wasn't expecting much. I had my PFT's (which showed my fev1 down to 33%), CT scan and transplant clinic on the 10th and bronch with biopsies the following morning. My doctor basically told me he wasn't convinced what I'm going through is chronic rejection. He's STILL convinced the stenosis I have in my right main bronchi is causing all this decline in lung function. I was willing to believe him for a while, but after 2 years of my lung function getting worse and worse by the month even though I was getting balloon dilatation's to open the airway every month. So I brought up IF what's going on is chronic rejection, what does he usually do for his patients in CR? He basically said that after making sure the patient is on Azithromycin (which I've been on since my transplant), he doesn't do anything. He believes there is no proven treatment for CR. In fact after I brought up a list of treatments that I know other hospitals are using for their patients in CR, he denied that more than one center is using one of the treatments (which I know is untrue), and said the other treatments don't work. *Huge sigh* At that point he said "there is one thing you haven't mentioned yet" and I knew what he meant... Re-transplant. He said he would re-transplant me in a heartbeat because I'm "such a great patient". I can't tell you how upset that made me. I feel like this hospital treats me like a customer and not a patient they need to care for. They are so eager to re-transplant me (where they'll make $200k just for the surgery alone), rather than do whatever it takes to try and treat what's wrong now. It's very unnerving to not have faith that your doctor is doing what's best for you.
The bronch the following morning was an absolute nightmare. I have chronic side pain, which is assumed to associated with a chest tube and nerve problems. This pain gets a lot worse when I deep breathe and it's forced me to take pain medication every day in order to just get out of bed every day. Well the fellow DR that was in charge of my bronch for some reason was so afraid to over medicate me that I was awake during the bronch, given only a child's dose of Versed (medication which is supposed to help you relax). So during the bronch, the guy who calls himself a doctor was only able to biopsy my left lung because my right airway wasn't open enough to get the tube down through it. Once I got to the recovery area I was in 12 out of 10 pain in my side and stayed that way for 3 HOURS because the doctor was scared to give me any pain medication because somewhere in his tiny brain he thought I might get over medicated. Mind you, my O2 sats were 97%, my heart rate was around 100bpm and my blood pressure was around 160/80, which is too high, a sign of a person in pain and not in danger of being over medicated. After about 30min of crying, the nurse closed my curtain around me so he and everyone else could try and ignore me. 2 1/2hrs later while still in 12 out of 10 pain and still crying, the nurse came in and said "good news! the doctor is allowing you to take half of one of your pain pills!" I was like "You've got to be kidding me! Why can't I take a whole pill? I take a whole pill at home every 8 hours!" The nurse took my bottle and cut one of the pills in half and handed me the half along with a glass of water. I asked him for the bottle and dumped his half back into it and took a full pill. That nurse flipped out! He opened my curtain and told me I'll never be able to take my own medication again (Fine with me! The hospital shouldn't force their patients to treat their own pain! THEY shouldn't allow their patients to be in excruciating pain for 3 hours without trying to help them!). He then demanded that I give him back my pill bottle. Ummm HELL NO! I told him that once he brought my fiance back into the room I'll give the bottle to him. He didn't need to be worried that I'd take more. I've been on this medication for years and I know not to over medicate myself. So about 45min later when my pain was beginning to get better, the "doctor" came in and said that since I took a whole pill against medical advice, he was going to put me in the ER to be watched and made sure I didn't desat and stop breathing because of my excess medication dosing. WHAT?! First of all, it wasn't excess. I had less medication so far that day than I usually do on a daily basis. Second, no doctor who knows anything about transplant recipients would send their patients to the ER where there are God knows what kinds of germs floating around and risk getting me sick. A few minutes after he left, a different nurse started his shift and found out what had been going on and called one of my REAL doctors. Within a half hour my tx doctor had come in and wrote discharge papers saying to hurry up and go before that other "doctor" followed through with his crazy ER plan. It's sad, but events like these are not all that uncommon for me at UCSF. Most of the nursing staff is great, but I can't say the same for their doctors.
Two weeks later I was back to UCSF because my tx doctor wanted me to come in and go under general anesthesia while they go down to open up my airway and take a better look around. Thankfully once I got to the recovery room that time, the doctors and nurses gave me adequate pain control and were very kind. My main tx doctor came in to talk to Benito and I after the dilation with a huge grin on his face saying "I think we did a great job opening that airway". Unfortunately the week following that procedure my breathing got really bad and for the first time I think even scared Benito. It's been almost 2 weeks since the dilation and I'm beginning to get back to my baseline. I have CF clinic on Monday and I'm not sure what to expect.
Onto better news, Benito's sister will be getting married this next Sat 3/12 and I'm her maid of honor! Benito and I haven't really done any major wedding planning for us yet. I want to enjoy my wedding and as of now, my health won't let me. So, I'm hoping to start wedding plans the day after I am feeling better! :)
I'm sitting in my bed with my laptop listening to Ray Lamontagne; letting his raspy voice and beautiful lyrics soothe my soul while I recall some of the not so fun things that have happened so far this year.
My last post went over what happened at my last CF clinic appointment. Just a quick recap: After Stanford declined taking me on as a patient, I was relying on my CF doctors to help stop the decline in lung function. Why not have my transplant center (UCSF) take care of me and my possible chronic rejection you ask? Well, my transplant center is one of what seems like a growing group of transplant centers that are very apathetic toward their patients (I should include there are a Few people I've talked to who have not had this same experience with UCSF) and do not have a protocol toward treating chronic rejection. My CF doctors have exhausted all their resources and are not familiar enough with the transplant field to know what to do for the possible chronic rejection(CR). So, I've been left with absolutely no idea what I'm to do about my increasingly fast decline of lung function. In the last month alone Benito and I both can tell a huge difference in my breathing. My last fev1 (lung function lingo) was at 33% prediction, which is at the point where people would be listed for transplant. I was at 17% fev1 at the point of my first transplant, but since the damage CF did to my lungs was so gradual, I was able to adapt to the low lung function. The decline I have now seems to be happening to fast that I'm not able to adapt and it feels like it takes forever to be able to catch my breath after walking just a few feet. Imagine trying to inhale through an empty balloon... That's exactly how my chest feels when I'm out of breath. My sound of my breathing is getting to be so noisy that it keeps me up at night (I sleep with a fan going even if it's freezing, just to try and cover the noise of my breathing).
So after the last clinic appointment at my CF center I had yet another balloon dilatation done on my right narrow airway and after that procedure was over, my doctor came to the recovery room and talked with Benito and I about where we need to go from here. I had brought a printed out copy of a conversation between a very good CF/Transplant friend of mine who goes to Duke hospital. In these conversations she was helping me with what treatments she knew of that hers and others have used to treat chronic rejection. I gave this copy to my CF doctor to read over before my procedure that day and by the time I saw him after the procedure he had read it over a few times and had spent a half hour speaking with the pulmonologist there at UCD that worked my up for my transplant evaluation six years ago. This pulmonologist used to work with the lung transplant team at UCD years ago when there actually was one, so he knows a little more about transplants than my CF doctor. Basically all they came up with, was that I needed a transplant center to administer these treatments because they have never prescribed them and didn't feel comfortable having me be their guinea pig. So, this left me to first go back to UCSF and see what they could do for me, then if I get nowhere with them, I can look into possibly going to UCLA, but it's eight hours from where we live and it would be both physically and financially draining to have to relocate.
Fast forward to February 10-11th. Benito and I went to San Francisco to visit my transplant doctor for the first time in a year hoping they will give us some hope, although I wasn't expecting much. I had my PFT's (which showed my fev1 down to 33%), CT scan and transplant clinic on the 10th and bronch with biopsies the following morning. My doctor basically told me he wasn't convinced what I'm going through is chronic rejection. He's STILL convinced the stenosis I have in my right main bronchi is causing all this decline in lung function. I was willing to believe him for a while, but after 2 years of my lung function getting worse and worse by the month even though I was getting balloon dilatation's to open the airway every month. So I brought up IF what's going on is chronic rejection, what does he usually do for his patients in CR? He basically said that after making sure the patient is on Azithromycin (which I've been on since my transplant), he doesn't do anything. He believes there is no proven treatment for CR. In fact after I brought up a list of treatments that I know other hospitals are using for their patients in CR, he denied that more than one center is using one of the treatments (which I know is untrue), and said the other treatments don't work. *Huge sigh* At that point he said "there is one thing you haven't mentioned yet" and I knew what he meant... Re-transplant. He said he would re-transplant me in a heartbeat because I'm "such a great patient". I can't tell you how upset that made me. I feel like this hospital treats me like a customer and not a patient they need to care for. They are so eager to re-transplant me (where they'll make $200k just for the surgery alone), rather than do whatever it takes to try and treat what's wrong now. It's very unnerving to not have faith that your doctor is doing what's best for you.
The bronch the following morning was an absolute nightmare. I have chronic side pain, which is assumed to associated with a chest tube and nerve problems. This pain gets a lot worse when I deep breathe and it's forced me to take pain medication every day in order to just get out of bed every day. Well the fellow DR that was in charge of my bronch for some reason was so afraid to over medicate me that I was awake during the bronch, given only a child's dose of Versed (medication which is supposed to help you relax). So during the bronch, the guy who calls himself a doctor was only able to biopsy my left lung because my right airway wasn't open enough to get the tube down through it. Once I got to the recovery area I was in 12 out of 10 pain in my side and stayed that way for 3 HOURS because the doctor was scared to give me any pain medication because somewhere in his tiny brain he thought I might get over medicated. Mind you, my O2 sats were 97%, my heart rate was around 100bpm and my blood pressure was around 160/80, which is too high, a sign of a person in pain and not in danger of being over medicated. After about 30min of crying, the nurse closed my curtain around me so he and everyone else could try and ignore me. 2 1/2hrs later while still in 12 out of 10 pain and still crying, the nurse came in and said "good news! the doctor is allowing you to take half of one of your pain pills!" I was like "You've got to be kidding me! Why can't I take a whole pill? I take a whole pill at home every 8 hours!" The nurse took my bottle and cut one of the pills in half and handed me the half along with a glass of water. I asked him for the bottle and dumped his half back into it and took a full pill. That nurse flipped out! He opened my curtain and told me I'll never be able to take my own medication again (Fine with me! The hospital shouldn't force their patients to treat their own pain! THEY shouldn't allow their patients to be in excruciating pain for 3 hours without trying to help them!). He then demanded that I give him back my pill bottle. Ummm HELL NO! I told him that once he brought my fiance back into the room I'll give the bottle to him. He didn't need to be worried that I'd take more. I've been on this medication for years and I know not to over medicate myself. So about 45min later when my pain was beginning to get better, the "doctor" came in and said that since I took a whole pill against medical advice, he was going to put me in the ER to be watched and made sure I didn't desat and stop breathing because of my excess medication dosing. WHAT?! First of all, it wasn't excess. I had less medication so far that day than I usually do on a daily basis. Second, no doctor who knows anything about transplant recipients would send their patients to the ER where there are God knows what kinds of germs floating around and risk getting me sick. A few minutes after he left, a different nurse started his shift and found out what had been going on and called one of my REAL doctors. Within a half hour my tx doctor had come in and wrote discharge papers saying to hurry up and go before that other "doctor" followed through with his crazy ER plan. It's sad, but events like these are not all that uncommon for me at UCSF. Most of the nursing staff is great, but I can't say the same for their doctors.
Two weeks later I was back to UCSF because my tx doctor wanted me to come in and go under general anesthesia while they go down to open up my airway and take a better look around. Thankfully once I got to the recovery room that time, the doctors and nurses gave me adequate pain control and were very kind. My main tx doctor came in to talk to Benito and I after the dilation with a huge grin on his face saying "I think we did a great job opening that airway". Unfortunately the week following that procedure my breathing got really bad and for the first time I think even scared Benito. It's been almost 2 weeks since the dilation and I'm beginning to get back to my baseline. I have CF clinic on Monday and I'm not sure what to expect.
Onto better news, Benito's sister will be getting married this next Sat 3/12 and I'm her maid of honor! Benito and I haven't really done any major wedding planning for us yet. I want to enjoy my wedding and as of now, my health won't let me. So, I'm hoping to start wedding plans the day after I am feeling better! :)
Wednesday, January 12, 2011
Grieving
Good afternoon! I hope you all had a great holiday spent with the ones you love most in life. Benito and I had a great Christmas in Reno with his mom and step-dad. It snowed Christmas night and the next day, so we got to have the white Christmas we were hoping for. Unfortunately we had to drive home the day after Christmas while it was snowing and were very grateful for deciding to rent a 4 wheel drive truck for the trip! Our New Year's eve was spent at home with a few friends. Benito barbecued burgers on his new BBQ his mom had gotten him for Christmas. We all enjoyed margaritas and played the Wii up until the 1min countdown to the new year. Once we got our fix of Dick Clark we fired the Wii back up for more Wii Resort gaming! Benito and I had a Great time and stayed up well past 3am laughing along with our friends. I had another birthday in between Christmas and New Years, but we didn't do much at all. Benito and I just stayed home and watched movies together. I am very grateful for every birthday I'm given. God knows I never thought I would ever see 28 years old!
That being said, I guess it's time to move onto more dreary topics that need to be addressed.
Two days ago (Monday) I had CF clinic. Lucky for me, Benito took the day off and was able to come along with me for support... We had no idea just how much I would need that support until we actually saw my doctor. After blowing into the machine to measure my pft's (lung function test) my numbers were at an all time low since pre-transplant at 32%. We tried using my inhaler to see if the low number was just because I was a little tight. Post inhaler my pfts only got up to 35%, still an all time low since pre-tx. I had lost 4-5% lung function in just 2 1/2 months, which is extremely alarming, especially since in that 2 1/2 months I was on antibiotics for about 6 weeks trying to help my lung function.
So after the respiratory therapist left with the results and showed them to my CF doctor, my doctor came in with a grim look on his face. He began to ask me how I was feeling and did a physical exam, listening to my lungs very carefully until I was dizzy from deep breathing. He said my lungs sound very noisy on Both sides, not just the right side like usual. He said he can hear air flowing very loudly, which suggests that there is a lot of narrowing in my airways and my lungs are working very hard to move air throughout my lungs. I told him that I've started to get so out of breath at times that I'll go from dizzy to everything getting dark in a matter of seconds (imagine a dimmer switch on a light and the light going from bright to almost off). My oxygen saturation is still very good while at rest when checked at clinic, but who knows what happens when I get extremely short of breath.
My doctor basically went on to tell me as gently as he could that I shouldn't expect to get better, only worse from here on out. He told me I could live the way I am now for years, but we both know that the rate in which I'm losing lung function that isn't very likely. He is going to speak to the doctor there at UC Davis who evaluated me for my 1st transplant and see if he can find me a place to be evaluated at for a second transplant. I need to come to realization that as much as I don't feel ready, it's time to get back on the list and pray that a set of lungs become available in time. My CF doctor assured me that I'm a great candidate for a second transplant, but that I need to be aware that a second transplant is much riskier than the first one. Why? Because the surgery itself will take much longer because of the scar tissue that has grown and is now holding my donor lungs against my chest wall. The longer I have to be under anesthesia, the more dangerous, plus the surgeon has to be very careful while separating my donor lungs from the chest wall so not to lose too much blood. I have managed to keep my weight up along with my "positive" attitude (all things considered) and my compliancy in the past with keeping up with medication and doctor visits, so I'm a good candidate for a second transplant. Of course this is only half of it... I'll need to "pass" all my evaluation testing on my heart, kidneys, etc. before being considered for a re-transplant. And of course there is the issue of finding a center to do it. I just found out that the amazing surgeon that did my first transplant has moved on to a different hospital (in Connecticut), so the man I feel like I can trust with my life is no longer available to perform my next life threatening surgery. *sigh*
My CF doctor spent a long time in my clinic room talking to Benito and I about what to expect and what I should be doing. At one point I couldn't hold back the tears any longer and broke down. I know he wasn't intending it to, but the way he was talking to me, it sounded like I was getting a "quality of life" speech. You know the kind... Go home and do what makes you happy while you still can. He assured me that he wasn't giving me a "hospice" speech, but he really wants me to think about what's important to me right now. He wants me to understand that I will not [no matter how hard I worked] be able to get the lost lung function back and that I should let myself grieve for that loss.
The thing is that I'm not only grieving for that loss, but what that loss has taken away from me. Benito and I are supposed to be planning a wedding right now, but instead we're having to plan on a transplant that could very well take me away from him forever. I've wanted for as long as I can remember to be a mother and up until Monday, I had hopes of accomplishing that dream some day. If I can't get better, how can I carry, then care for a baby? Is it so wrong for me to want a normal life with the man I love? I feel like I've worked so damn hard for so damn long and now I'm supposed to start all over again?
I hate to say it, but it was almost easier the first time around. With my CF lungs, I had 21 years to get used to the idea of getting sicker. I was at 80% only 3 years ago with the whole world in front of me. In 3 years I've gotten this sick and I don't feel like it's been enough time to get used to the idea of needing another transplant. With my CF lungs I had things I could do to help improve my lung function and how I felt. I could do a "tune-up" of IV antibiotics that would make me feel a little bit better after 2-3 weeks. I did pulmonary rehab and saw a huge difference in how I felt and my lung function improved. Now I'm told that nothing is going to improve my lung function again. Pulmonary rehab won't even help, but "being active will help your mood". *sigh*
I emailed my academic advisor and explained what's going on. It's been a year since I've been able to complete a class, so I told her that I'm going to stop school for now and maybe once I'm recovered from my next transplant I'll start back up again. It just seemed like it was one stress that I could avoid, so it needed to go. It didn't seem logical to keep trying to take classes when I'm just getting sicker and am already having trouble being able to finish even one class at a time. She was very encouraging and said that if any point before October I wanted to start back up, I will have my scholarship waiting for me. She even said that if it took longer than October, she may be able to pull some strings with the director and see if I could re-enroll and pick my scholarship back up then.
So, that's it. As you can imagine, my mind is going a million miles an hour right now. I'm sorry if any of this blog update sounded confusing. It's how my brain is functioning right now, so it's hard to make much sense out of anything in my head right now. I came home on Monday and went directly to bed at 6pm and I'm just now starting to feel like I can get out of bed again. Whenever I wasn't sleeping yesterday I was crying, so sleeping was my choice activity. I'm still feeling pretty weak hearted, but I don't want Benito to come home from work a second day to me being in my pajamas still and barely awake. I need to be strong for him; I know he can't keep holding us both up all by himself.
I'd really appreciate any prayers you can offer up to us right now. We need another miracle.
That being said, I guess it's time to move onto more dreary topics that need to be addressed.
Two days ago (Monday) I had CF clinic. Lucky for me, Benito took the day off and was able to come along with me for support... We had no idea just how much I would need that support until we actually saw my doctor. After blowing into the machine to measure my pft's (lung function test) my numbers were at an all time low since pre-transplant at 32%. We tried using my inhaler to see if the low number was just because I was a little tight. Post inhaler my pfts only got up to 35%, still an all time low since pre-tx. I had lost 4-5% lung function in just 2 1/2 months, which is extremely alarming, especially since in that 2 1/2 months I was on antibiotics for about 6 weeks trying to help my lung function.
So after the respiratory therapist left with the results and showed them to my CF doctor, my doctor came in with a grim look on his face. He began to ask me how I was feeling and did a physical exam, listening to my lungs very carefully until I was dizzy from deep breathing. He said my lungs sound very noisy on Both sides, not just the right side like usual. He said he can hear air flowing very loudly, which suggests that there is a lot of narrowing in my airways and my lungs are working very hard to move air throughout my lungs. I told him that I've started to get so out of breath at times that I'll go from dizzy to everything getting dark in a matter of seconds (imagine a dimmer switch on a light and the light going from bright to almost off). My oxygen saturation is still very good while at rest when checked at clinic, but who knows what happens when I get extremely short of breath.
My doctor basically went on to tell me as gently as he could that I shouldn't expect to get better, only worse from here on out. He told me I could live the way I am now for years, but we both know that the rate in which I'm losing lung function that isn't very likely. He is going to speak to the doctor there at UC Davis who evaluated me for my 1st transplant and see if he can find me a place to be evaluated at for a second transplant. I need to come to realization that as much as I don't feel ready, it's time to get back on the list and pray that a set of lungs become available in time. My CF doctor assured me that I'm a great candidate for a second transplant, but that I need to be aware that a second transplant is much riskier than the first one. Why? Because the surgery itself will take much longer because of the scar tissue that has grown and is now holding my donor lungs against my chest wall. The longer I have to be under anesthesia, the more dangerous, plus the surgeon has to be very careful while separating my donor lungs from the chest wall so not to lose too much blood. I have managed to keep my weight up along with my "positive" attitude (all things considered) and my compliancy in the past with keeping up with medication and doctor visits, so I'm a good candidate for a second transplant. Of course this is only half of it... I'll need to "pass" all my evaluation testing on my heart, kidneys, etc. before being considered for a re-transplant. And of course there is the issue of finding a center to do it. I just found out that the amazing surgeon that did my first transplant has moved on to a different hospital (in Connecticut), so the man I feel like I can trust with my life is no longer available to perform my next life threatening surgery. *sigh*
My CF doctor spent a long time in my clinic room talking to Benito and I about what to expect and what I should be doing. At one point I couldn't hold back the tears any longer and broke down. I know he wasn't intending it to, but the way he was talking to me, it sounded like I was getting a "quality of life" speech. You know the kind... Go home and do what makes you happy while you still can. He assured me that he wasn't giving me a "hospice" speech, but he really wants me to think about what's important to me right now. He wants me to understand that I will not [no matter how hard I worked] be able to get the lost lung function back and that I should let myself grieve for that loss.
The thing is that I'm not only grieving for that loss, but what that loss has taken away from me. Benito and I are supposed to be planning a wedding right now, but instead we're having to plan on a transplant that could very well take me away from him forever. I've wanted for as long as I can remember to be a mother and up until Monday, I had hopes of accomplishing that dream some day. If I can't get better, how can I carry, then care for a baby? Is it so wrong for me to want a normal life with the man I love? I feel like I've worked so damn hard for so damn long and now I'm supposed to start all over again?
I hate to say it, but it was almost easier the first time around. With my CF lungs, I had 21 years to get used to the idea of getting sicker. I was at 80% only 3 years ago with the whole world in front of me. In 3 years I've gotten this sick and I don't feel like it's been enough time to get used to the idea of needing another transplant. With my CF lungs I had things I could do to help improve my lung function and how I felt. I could do a "tune-up" of IV antibiotics that would make me feel a little bit better after 2-3 weeks. I did pulmonary rehab and saw a huge difference in how I felt and my lung function improved. Now I'm told that nothing is going to improve my lung function again. Pulmonary rehab won't even help, but "being active will help your mood". *sigh*
I emailed my academic advisor and explained what's going on. It's been a year since I've been able to complete a class, so I told her that I'm going to stop school for now and maybe once I'm recovered from my next transplant I'll start back up again. It just seemed like it was one stress that I could avoid, so it needed to go. It didn't seem logical to keep trying to take classes when I'm just getting sicker and am already having trouble being able to finish even one class at a time. She was very encouraging and said that if any point before October I wanted to start back up, I will have my scholarship waiting for me. She even said that if it took longer than October, she may be able to pull some strings with the director and see if I could re-enroll and pick my scholarship back up then.
So, that's it. As you can imagine, my mind is going a million miles an hour right now. I'm sorry if any of this blog update sounded confusing. It's how my brain is functioning right now, so it's hard to make much sense out of anything in my head right now. I came home on Monday and went directly to bed at 6pm and I'm just now starting to feel like I can get out of bed again. Whenever I wasn't sleeping yesterday I was crying, so sleeping was my choice activity. I'm still feeling pretty weak hearted, but I don't want Benito to come home from work a second day to me being in my pajamas still and barely awake. I need to be strong for him; I know he can't keep holding us both up all by himself.
I'd really appreciate any prayers you can offer up to us right now. We need another miracle.
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