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! :)
Saturday, March 5, 2011
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.
Thursday, December 23, 2010
This and That
First of all, I want to apologize to my readers for not posting an update in so long. I know a few of you have been worried about me since it seemed I'd gone MIA for such a long time.
I'm doing okay. I could feel a lot better, but then again I could definitely feel a lot worse, so I'm grateful for that.
Not a lot has changed since I've last updated. I'm still not sure I even have a transplant doctor since my CF docs have had no luck getting in touch with my original transplant doctor regarding my care. How does this make me feel you ask? Nervous, disappointed, scared, uncertain, extra cautious and most of all I feel like I'm in limbo. I don't know what my future holds in terms of my transplant care. I am being more cautious than I normally would to avoiding getting sick because I don't want getting sick with a cold or flu to speed up my rejection (an increase of white blood cells in my body from being sick will work against me, making it easier for my body to reject my donor lungs). I've been staying home as much as possible and avoiding crowded stores at all costs. Thank goodness for Amazon.com or I wouldn't have been able to get any Christmas shopping done! My personal plan is to really make myself irritating and loud toward my doctors. The squeakie wheel gets the attention, right? I'm going to be a squeakie wheel all right!! I'm SO tired of feeling like this. I can hardly do any kind of physical activity without taking at least a break half way through it. I was putting clean sheets on a blow-up mattress the other day because my father in-law was coming to stay the night and I barely got the fitted sheet on before I couldn't catch my breath. It took me an hour and a half just to put sheets on that bed; that is absolutely Crazy! I feel like I've worked SO hard to feel well and although I've always done Exactly what I've been told to do in terms of my health care, I didn't do enough because here I am sleeping with a lot of pillows again, up half the night feeling short of breath, and planning my days around small windows in which I feel a little closer to normal.
This post is starting to sound like a pity party, but I don't want it to, so I'm going to go onto other news! ;)
Benito and I drove to Santa Rosa on the 11th and picked up my niece and nephew so they can stay with us while my sister and her boyfriend got everything packed up and moved back to Yuba City. We had the kids (8 & 6 years old) for a week and let me tell you, although the kids were good during their stay with uncle Benito and auntie Leah, I was Exhausted after that week was up! It's tough keeping kids that age cooped up in the house during a very rainy week. They watched countless movies (thank goodness for Netflix's "Watch Now" feature!), played Wii, picked out and decorated the Christmas tree, made Christmas ornaments for said tree, and made a trip to the library. We had a great time together. Benito and I had missed them so much while they were living in Santa Rosa for the past 9 months; we're just so happy to have them living across town again!
We'll be spending a white Christmas in Reno with Benito's mom, step-dad, and 5 year old retired greyhound. Roxy will have her "aunt" to play with for a few days while Benito and I will enjoy a nice weekend with family cozied up by the fireplace. We spent Thanksgiving with my family, so Christmas was saved for spending with Benito's. Juggling families is going to be a difficult task to learn, but luckily neither of our families make us feel guilty when we can't spending a specific holiday with them. We're both very fortunate to not only get-along, but to love each other's family, so we're always happy to plan a visit with either one.
No big plans for the wedding yet. My maid of honor and I will be going to our first bridal expo in January, so I'm hoping to get a lot of helpful ideas and freebies or coupons to help with the wedding. Benito and I are hoping to either get married this next October or October of 2012. It's going to all depend on my health insurance and if we've found a way to make sure I'm as covered as I am now as a single woman. I absolutely Hate dealing with health insurance.
So that's about it. I hope everyone is doing well and is enjoying their holidays. Don't forget to glob on the hand sanitizer while out shopping!!
Merry Christmas and have a safe and happy New Year!!
Friday, October 22, 2010
We're Engaged!!!
Benito and I are engaged!!
We spent a few days on the Mendocino coast to celebrate our 2 year anniversary and while there, Benito proposed!
It was the second night at the cottage we rented... After a beautiful day spent at the Botanical Gardens in Fort Bragg, Benito and I headed back to the cottage to barbeque and relax in the hot tub. While eating dinner and watching the beautiful sun set against the ocean, Benito stands up and says "I guess this is a good time". I thought nothing of it, but when he came back to the table he was kneeling on the floor instead of sitting across from me at the table. I was very much not expecting him to propose, so my reaction was me wondering what he dropped and why is he on the floor? Then he opened the ring box and I realized what was actually happening. After a lot of "I love you"s and him asking if I would marry him, I of course said YES! We spent the rest of the night in the hot tub drinking wine we saved from last year's anniversary and talking about how Benito managed to pull off this huge surprise without me even suspecting.
I can not imagine spending my life with anyone but Benito. I am told that Benito is the lucky one, but really it's me who lucked out. I know it's not easy living with me and never knowing whether today is going to be a good or bad day in terms of my health. Benito knows my bad days and wants to be with me during all of them. He's extremely supportive and does whatever he possibly can to make my life easier. I love him more than anything (even more than chocolate, which, if you know me, is a lot!) and can not wait to be his wife!
As far as the wedding goes, we're hoping for a nice outdoor fall wedding either next fall or even the year after that. Unfortunately we have a lot of red tape to get through in terms of my health insurance before we can make things official, so we're not in a huge hurry (although I can't wait to begin our married lives together).
Here are a few pictures of our stay on the coast and the beginning of our engagement, but you can see all of our pictures on my Picasa album at:
http://picasaweb.google.com/leah92504/FortBraggEngagement#
Sunday, October 3, 2010
A very long update
I know, it's been a long time since you've heard from me and I'm very sorry. I owe part of my absence to the fact that I don't get on my laptop quite as much as I used to now that I have a smart phone and partly because there has been so much to update that I don't even know where to begin. I'm currently sitting in bed hooked up to an IV drop of Meropenem (antibiotic) for the next hour, so I thought I would take advantage of this time and begin an update to you all. Please bare with me because this may seem a little sporadic.
Last I updated I had started an increase of my immunosuppressant medication in hopes to slow down and/or stop the progression of the chronic rejection. Since then my CF doctors have had me increase one of my immunosuppressant drugs a few more times to get it to the level they want it in my blood. Meanwhile my pft's (pulmonary function tests) are still slowly declining. About 6 weeks ago the decision was made that my CF doctors have exhausted all of their resources and are out of ideas on what do do for me now, so we decided it was time to send my information to Stanford hospital's lung transplant team and try to get transferred there. Unfortunately I found out this past Monday that Stanford is not currently taking any new patients who have already had a transplant because they are having "bad luck" re-transplanting patients who have gotten their first transplant at a different hospital. Needless to say, that news was very hard to swallow. I had put all of my eggs in that one basket and it didn't work out. For the time being, I don't know what I'm going to do. I have not been to my transplant center (UCSF) in a year and would rather not have to deal with them at all, but I may be forced to now. I can not speak for everyone, but my own experience with UCSF has been very poor post transplant (they were GREAT to me pre transplant though). For the past 6 years I have had to go get my own blood work results and call THEM if I saw anything out of the ordinary instead of them calling me; I don't know about you, but I don't think it's the patients responsibility to track their tests in place of the medical professionals. I learned very quickly how to read my lab read-outs! The "last straw" was when I was very sick (running a fever, extremely weak and coughing a lot) at home and I called them at 10am and left a message on my nurse's voicemail for her to please call me back asap because I was sick and needed to know what I should do. She finally called me back at 6pm and was absolutely NO help. She basically told me it was stupid to call them and that I should just go find a doctor to see me. Okay, go to an E.R... Anyone who has CF and has had a dbl lung transplant can probably agree that when we go to an ER we are seen by doctors who are afraid to touch us because they have read that we're post transplant. They don't want to do anything w/out "My MDs approval". So, I ask my nurse if I can have the ER doctor call them and she told me "They're doctors, they can take care of you. We don't need to be called". Well, I took that as they don't want to be bothered, like always, so I have not bothered them since. Luckily my CF doctors arranged for me to be directly admitted into their hospital and diagnosed me with pneumonia; something my lung transplant center should very much care about. So since that point on I was working along with my CF center to fully treat me and I would be fine sticking with just them if it weren't for the chronic rejection that they don't know how to treat.
I quit my job that I'd had for the past year because I need to be able to rest when I need to and not have to worry about calling in sick more and more often because my breathing keeps getting worse. So for now I'm a full time home-body again. Benito has been extremely supportive and it was just as much his decision as it was mine to quit my job. He was very worried about how well I was taking care of myself while working so much. I may try and see if I can find an extremely part-time job in the future to help me occupy my time and get me out of the house every-so-often. Roxy (our 1yr old lab mix) is very happy to have mom home all the time! She's been so much better about destroying our valuables now that I'm able to spend so much time with her.
On a much happier note, Benito and I will be celebrating our 2 year anniversary tomorrow! Time has really flown by! I go to bed every night thinking that I couldn't possibly love that man any more, but wake up every morning finding out that I can and I do. We're planning a little getaway on the Mendocino coast later this month to celebrate and de-stress! The place we'll be renting is right on the ocean with huge sliding glass doors in the bedroom with a gorgeous view of the waves from the bed! I can't ask for a more relaxing and wonderful getaway with my love. :)
So that's all for now. I'll write again when there is more to share. Sorry about the length of this post... It really has been a while since I've updated and I had some people asking about Stanford, so it was time to share the news, even if it wasn't the best news to share.
Last I updated I had started an increase of my immunosuppressant medication in hopes to slow down and/or stop the progression of the chronic rejection. Since then my CF doctors have had me increase one of my immunosuppressant drugs a few more times to get it to the level they want it in my blood. Meanwhile my pft's (pulmonary function tests) are still slowly declining. About 6 weeks ago the decision was made that my CF doctors have exhausted all of their resources and are out of ideas on what do do for me now, so we decided it was time to send my information to Stanford hospital's lung transplant team and try to get transferred there. Unfortunately I found out this past Monday that Stanford is not currently taking any new patients who have already had a transplant because they are having "bad luck" re-transplanting patients who have gotten their first transplant at a different hospital. Needless to say, that news was very hard to swallow. I had put all of my eggs in that one basket and it didn't work out. For the time being, I don't know what I'm going to do. I have not been to my transplant center (UCSF) in a year and would rather not have to deal with them at all, but I may be forced to now. I can not speak for everyone, but my own experience with UCSF has been very poor post transplant (they were GREAT to me pre transplant though). For the past 6 years I have had to go get my own blood work results and call THEM if I saw anything out of the ordinary instead of them calling me; I don't know about you, but I don't think it's the patients responsibility to track their tests in place of the medical professionals. I learned very quickly how to read my lab read-outs! The "last straw" was when I was very sick (running a fever, extremely weak and coughing a lot) at home and I called them at 10am and left a message on my nurse's voicemail for her to please call me back asap because I was sick and needed to know what I should do. She finally called me back at 6pm and was absolutely NO help. She basically told me it was stupid to call them and that I should just go find a doctor to see me. Okay, go to an E.R... Anyone who has CF and has had a dbl lung transplant can probably agree that when we go to an ER we are seen by doctors who are afraid to touch us because they have read that we're post transplant. They don't want to do anything w/out "My MDs approval". So, I ask my nurse if I can have the ER doctor call them and she told me "They're doctors, they can take care of you. We don't need to be called". Well, I took that as they don't want to be bothered, like always, so I have not bothered them since. Luckily my CF doctors arranged for me to be directly admitted into their hospital and diagnosed me with pneumonia; something my lung transplant center should very much care about. So since that point on I was working along with my CF center to fully treat me and I would be fine sticking with just them if it weren't for the chronic rejection that they don't know how to treat.
I quit my job that I'd had for the past year because I need to be able to rest when I need to and not have to worry about calling in sick more and more often because my breathing keeps getting worse. So for now I'm a full time home-body again. Benito has been extremely supportive and it was just as much his decision as it was mine to quit my job. He was very worried about how well I was taking care of myself while working so much. I may try and see if I can find an extremely part-time job in the future to help me occupy my time and get me out of the house every-so-often. Roxy (our 1yr old lab mix) is very happy to have mom home all the time! She's been so much better about destroying our valuables now that I'm able to spend so much time with her.
On a much happier note, Benito and I will be celebrating our 2 year anniversary tomorrow! Time has really flown by! I go to bed every night thinking that I couldn't possibly love that man any more, but wake up every morning finding out that I can and I do. We're planning a little getaway on the Mendocino coast later this month to celebrate and de-stress! The place we'll be renting is right on the ocean with huge sliding glass doors in the bedroom with a gorgeous view of the waves from the bed! I can't ask for a more relaxing and wonderful getaway with my love. :)
So that's all for now. I'll write again when there is more to share. Sorry about the length of this post... It really has been a while since I've updated and I had some people asking about Stanford, so it was time to share the news, even if it wasn't the best news to share.
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