OK, so we have a plan. Funny thing is that it is none of the plans I had discussed with Dr. Dazzle last week.
I spent part of the day on the phone with pharmaceutical company's this morning. The Amikacin that I need is still out of stock. I was trying to find out what I needed to do to get this drug that I NEED! I was BEGGING for my drug. What I found out is that there are 3 pharma companies that manufacture Amikacin in the US. Two of them had to shut down production at the FDA's insistence, due to violations in the manufacturing plant. The third company was shut down for several months, built a new facility and is now just getting up and running. They are the ONLY company of the three that is able to manufacture Amikacin in the US right now. They order the raw materials they need 18 months in advance. That many months ago they did not know they would be the only one's producing the drug. Basically, they are needing to produce 70% more product with very limited resources. Right now they have NONE. They project that they will have it back in stock in early October. Then they have to fill all of the back-orders, so that initial supply will go quickly. Another reason for the shortage is that Amikacin is a generic drug. It is not expensive and not reimbursed at a large rate. Therefore, it really is not a financial priority for them to develop it. It SUCKS!!! I have never been through this before and neither have my doctors. Getting the medication from outside the US is not even an option, because it is an IV drug and my US docs can't administer it unless they get it in the US. If I lived anywhere else I could get my treatment...but I live in the US and this medication is too cheap to be a priority. Can you tell I'm a little peeved? Was I really calling around trying to find my drug, just to be told it's on back-order? Look people, this isn't a sweater that I really want from a catalogue...it's a medication to save my life!
The Infectious Disease specialist at NIH will not be able to see me for a couple months, but Dr. Dazzle consulted with him on my case over the weekend. Have I mentioned how much I appreciate Dr. Dazzle? He has been amazing! We decided to move forward with a different treatment plan. This is really my only option for right now, so no more decisions to make on my part. Oh, happy day! That was probably the best news I've gotten in weeks! Maybe God does work in mysterious ways? My decision was made for me after all. No Amikacin = no other options.
Next Thursday I will be admitted, have my PICC placed, then start on an 8 week course of Tigecycline, Azythromycin and Lenasolid. The Tigecycline is IV...the other two are orals. We are biding our time. Hopefully, when the 8 weeks of IV's are completed the Amikacin will be in stock. I will then take that nebulized for several months. Hopefully, it will be as effective as it would have been in IV form. I feel like we're putting a band-aid on the situation until we can have access to the big guns. Have I mentioned that I'm a tad bit upset?
On a positive note, I will get to see my son off to pre-school next Wednesday. They allowed me to put off my admission until I could make sure my kids were in school and settled. Yay for flexibility!
Monday, August 30, 2010
Saturday, August 28, 2010
*Kerry's Wish*
This morning Kerry Hutchins, a 33 year old CF patient from Michigan, died from CF while awaiting a lung transplant. She was on the list for three years, but the right set of lungs did not arrive in time. Kerry was a mother of two boys. She had too much to live for...too much living left to do. 
This was the first article written about her in an attempt to raise awareness about the importance of organ donation.
http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/lung_transplant_patient_organ.html
This was the first article written about her in an attempt to raise awareness about the importance of organ donation.http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/lung_transplant_patient_organ.html
Few people are aware that in many states expressing your wishes when getting your drivers license renewed is not enough. You have to actually sign up to ensure that your wishes are known. This is what Kerry wanted. She wished that people would make the decision to give of themselves, even after death, after hearing her personal pleas.
This is another article that was written this past Wednesday, when the doctors took Kerry off of the transplant list. She was no longer strong enough to survive a transplant.
This is an article that was written today. Announcing Kerry's death, but also sharing her final selfless act. Even though Kerry's body was broken, she chose to donate the tissue and organs that were still viable. Through her death, Kerry gave life. What an amazing example!
A few weeks back I mentioned to someone that another one of my Facebook friends died of CF. I have 6 friends who have died in the past 6 months from the disease we share. This person, not in an insensitive way, told me that I should stop making friends with people who are dying. That made me stop and reflect. It is hard when someone dies from CF. However, I know that the support that I receive from the CF community is so valuable that I am willing to create relationships with people with uncertain futures, even if that means I will have to cope with many losses as a result. They are the only one's who really understand what it's like to be in my skin...to breathe with my lungs. When I have a question, they give me answers and advice. When I am down, they lift me up. When I am up, they cheer me on. It is 100% worth it! I just hope, hope, hope that I am able to be as supportive to them at times as they are to me...
I never had the pleasure to meet Kerry in person. However, I feel the need to spread her message.
PLEASE, I beg of you, become an organ donor! Please go to http://www.organdonor.gov/. Save a Life!
Friday, August 27, 2010
Out of Stock!
I had a great, 2 1/2 hour long appointment with Dr. Dazzle today. We have a plan...sort of. You see, Dr. Dazzle, would love to start treating my m. abssessus. However, the Amikacin, one of the most important drugs that I need to supress this infection, is OUT OF STOCK! In preparation for my appointment the team attempted to get their hands on some Amikacin and they got the same story from every supplier...none in stock. What the hell!?!?! The hospitals don't even have a back-up supply. So if you are from outside of the US and you think you can get your hands on some Amikacin for me, I am willing to pay top dollar! I feel like it's Christmas time and I'm on the hunt for zhu zhu pets... Grrr!
Dr. Dazzle assured me that we have some time. No major damage will be done in the time we take to figure this thing out. My second culture came back positive for mycobacterium, but they are going to wait the few weeks to ensure that this second is also the abssessus and not avium strain. Dr. Dazzle also wants me to go see the CF/mycobacterium guru. He's supposed to be the best in the US. Dr. O practices Infectious Disease at the National Institute of Health in Bethesda, Maryland. Hence, I'll be packing my bags to head to Maryland soon. I love NIH! So many important medical discoveries have come out of that place. I participated in a clinical trial there about 12 or 13 years ago. I feel very confident going there for another opinion. I do not, however, feel comfortable seeing an Infectious Disease doctor. Couldn't they call it something else? I can just imagine how rampant my OCD is going to be while sitting in the Infectious Disease waiting room. I think I'm going to have to double mask and double glove. No, Dr. O, I will not be shaking your hand! Crap!
Dr. Dazzle also told me some good news about treating the m. abssessus. First, he consulted with some doctors at other centers about the possibility of doing these antibiotics as a combination of orals and nebulizer treatments. There have been a handful of people very recently who have had some success with this treatment method. However, it is a brand new approach and is not proven. My other option is the IV antibiotics. Since I know a few people who have had m. abssessus and have been on IV's anywhere from 7 months to 2 years, I assumed that would also be my plan. However, Dr. Dazzle said that our goal would be for me to tolerate the IV's for 4-8 weeks! That's it! What a relief! The goal will be 8 weeks, but if they get too toxic we will pull the plug. This is the more standard method of treating m. abssessus...a bit more proven.
The direction we go is completely my choice. Honestly, I think I am going to go with the IV's. I don't want to spin my wheels doing something that may or may not help. I would rather do the IV's. If they get too toxic we can pull the plug, knowing that we still have the orals/nebulized option available. It will be so helpful to hear what Infectious Disease guy has to say!
So, Dr. Dazzle and I talked for 2 1/2 hours and not only about mycobacterium. Many other things were addressed. I am vitamin D deficient. I've known this, but have been too lazy to take it seriously. Honestly, I doubt that anyone who lives in Cleveland is not Vitamin D deficient. The sun does not visit us all too often here in C-Town. What I didn't know was that my level is 10, where normal starts at 50. Some very recent studies have shown that vitamin D deficiency may cause increased lung inflammation. Hence, I am starting 2000 IU's of vitamin D daily.
I have also not been on ANY nebs for many years. I always wondered why. It turns out that my previous doctor didn't think they were necessary. Dr. Dazzle thinks I should be on something. We discussed the differences between Hypertonic Saline and Pulmozyme. Since I have a past history with Asthma we decided that we would start out trying Pulmozyme. I get the first month free, so if I don't like it we can always switch to the Hypertonic Saline. So I will now be doing Pulmozyme every night during my Vest treatment. I am also going to continue on Doxy until we get my treatment plan all figured out. It keeps my cough at bay a bit, so why not?
Anyway, I have nothing but positive thoughts about the future. I really feel like Dr. Dazzle has my best interest in mind. It was interesting to find out that he graduated high school that same year as me! I love that we communicate the same way. We both start every sentence with the word "so". Here's how it went...
Me: So what are my chances of becoming diabetic in the future?
Dr. Dazzle: So there really isn't a percentage I can quote you. It's not certain that you will become diabetic and the fact that you are pancreatic sufficient works in your favor.
Me: So what are the odds that I will become pancreatic insufficient in the future?
Dr. Dazzle: So, again, I don't have any statistics to quote you, but as a CF patient you already have a compromised pancreas. It's just that your level hasn't reached to point yet where it indicates that your pancreas is not functioning. However, we typically start enzymes based on symptoms, not strictly on levels. So just keep me updated with your symptoms and if you see any changes in your digestion.
Me: So then I would start enzymes?
Dr. Dazzle: So, yes, but probably just a couple pills prior to each meal.
This went on and on for 2 1/2 hours. It was the greatest! Today's appointment was the greatest! I truly felt heard, and that meant the world to me. I'll be starting some more treatments and packing my bags for Maryland soon! It's slowly coming together :-)
By the way, I'm serious about the Amikacin. For all of my Canadian, British, Irish and Australian friends out there...if we can find a supply Dr. Dazzle is willing to do what it takes to get it here... Let me know!
Dr. Dazzle assured me that we have some time. No major damage will be done in the time we take to figure this thing out. My second culture came back positive for mycobacterium, but they are going to wait the few weeks to ensure that this second is also the abssessus and not avium strain. Dr. Dazzle also wants me to go see the CF/mycobacterium guru. He's supposed to be the best in the US. Dr. O practices Infectious Disease at the National Institute of Health in Bethesda, Maryland. Hence, I'll be packing my bags to head to Maryland soon. I love NIH! So many important medical discoveries have come out of that place. I participated in a clinical trial there about 12 or 13 years ago. I feel very confident going there for another opinion. I do not, however, feel comfortable seeing an Infectious Disease doctor. Couldn't they call it something else? I can just imagine how rampant my OCD is going to be while sitting in the Infectious Disease waiting room. I think I'm going to have to double mask and double glove. No, Dr. O, I will not be shaking your hand! Crap!
Dr. Dazzle also told me some good news about treating the m. abssessus. First, he consulted with some doctors at other centers about the possibility of doing these antibiotics as a combination of orals and nebulizer treatments. There have been a handful of people very recently who have had some success with this treatment method. However, it is a brand new approach and is not proven. My other option is the IV antibiotics. Since I know a few people who have had m. abssessus and have been on IV's anywhere from 7 months to 2 years, I assumed that would also be my plan. However, Dr. Dazzle said that our goal would be for me to tolerate the IV's for 4-8 weeks! That's it! What a relief! The goal will be 8 weeks, but if they get too toxic we will pull the plug. This is the more standard method of treating m. abssessus...a bit more proven.
The direction we go is completely my choice. Honestly, I think I am going to go with the IV's. I don't want to spin my wheels doing something that may or may not help. I would rather do the IV's. If they get too toxic we can pull the plug, knowing that we still have the orals/nebulized option available. It will be so helpful to hear what Infectious Disease guy has to say!
So, Dr. Dazzle and I talked for 2 1/2 hours and not only about mycobacterium. Many other things were addressed. I am vitamin D deficient. I've known this, but have been too lazy to take it seriously. Honestly, I doubt that anyone who lives in Cleveland is not Vitamin D deficient. The sun does not visit us all too often here in C-Town. What I didn't know was that my level is 10, where normal starts at 50. Some very recent studies have shown that vitamin D deficiency may cause increased lung inflammation. Hence, I am starting 2000 IU's of vitamin D daily.
I have also not been on ANY nebs for many years. I always wondered why. It turns out that my previous doctor didn't think they were necessary. Dr. Dazzle thinks I should be on something. We discussed the differences between Hypertonic Saline and Pulmozyme. Since I have a past history with Asthma we decided that we would start out trying Pulmozyme. I get the first month free, so if I don't like it we can always switch to the Hypertonic Saline. So I will now be doing Pulmozyme every night during my Vest treatment. I am also going to continue on Doxy until we get my treatment plan all figured out. It keeps my cough at bay a bit, so why not?
Anyway, I have nothing but positive thoughts about the future. I really feel like Dr. Dazzle has my best interest in mind. It was interesting to find out that he graduated high school that same year as me! I love that we communicate the same way. We both start every sentence with the word "so". Here's how it went...
Me: So what are my chances of becoming diabetic in the future?
Dr. Dazzle: So there really isn't a percentage I can quote you. It's not certain that you will become diabetic and the fact that you are pancreatic sufficient works in your favor.
Me: So what are the odds that I will become pancreatic insufficient in the future?
Dr. Dazzle: So, again, I don't have any statistics to quote you, but as a CF patient you already have a compromised pancreas. It's just that your level hasn't reached to point yet where it indicates that your pancreas is not functioning. However, we typically start enzymes based on symptoms, not strictly on levels. So just keep me updated with your symptoms and if you see any changes in your digestion.
Me: So then I would start enzymes?
Dr. Dazzle: So, yes, but probably just a couple pills prior to each meal.
This went on and on for 2 1/2 hours. It was the greatest! Today's appointment was the greatest! I truly felt heard, and that meant the world to me. I'll be starting some more treatments and packing my bags for Maryland soon! It's slowly coming together :-)
By the way, I'm serious about the Amikacin. For all of my Canadian, British, Irish and Australian friends out there...if we can find a supply Dr. Dazzle is willing to do what it takes to get it here... Let me know!
Monday, August 23, 2010
20 Questions???
Seriously...I've already got 20 questions for my new CF doc! For many years I have given my cancer patients the advice to keep a notebook with them in the days and weeks
prior to an important appointment, so they can write down every question that comes to mind to ask their oncologist. Research shows that people on average have 5 questions that they would like to ask their physician, but they typically only get to ask 2 or 3 of them. They either forget, become afraid to ask or the appointment time just runs out. I am going to ensure that I don't forget, so I've been carrying my little pink notebook around with me everywhere. Here's what I've got so far. I know that there are no answers for some of them, but I'm going to ask anyway. Let me know if you think of any more good questions!
This is just a little peek into what's been circling around in my brain for the past few weeks...
1) Can I get a new Flutter? My old one is no longer of use, since my children thought the metal ball inside was a toy. That most important little ball is missing for good...grr.
2) Do you think my symptoms I've been having over the past 2 years are from the mycobacterium abssessus or did the staph I've cultured my entire life just start acting up?
3) What are the dangers of waiting to treat?
4) If I do these long term antibiotics, should I get a PICC or a port?
5) Do I need to start this treatment right away or can I choose when I want to start?
6) Are there any stats specifically for the Delta F508 & R117H gene mutation?
7) Do those with R117H have the same life expectancy as the general CF population?
8) What is the probability that I will get CF related diabetes eventually?
9) What is the probability that I will one day become pancreatic insufficient?
10) I read that people with the R117H mutation are more susceptible than other CFers to getting Pancreatitis. What is my probability of getting Pancreatitis?
11) What are the symptoms of Pancreatitis?
12) I know that one of the side effects of one of the antibiotics I will be using is neutropenia (low white blood count). I already have a low white count. It falls between 2-4, when normal is 4-11. Can I get Neupogen injections to increase my white count and prevent complete immune system failure?
13) I am also concerned about hearing and vision loss with these antibiotics. What would we do to monitor this and how often?
14) How often will I have to infuse (how many times a day) if we do IV's?
15) How long do you anticipate I will need the IV's?
16) How long will I have to be in the hospital initially, knowing that I have to be desensitized from the Clarithromycin?
17) I went to the ER last time I was on IV's for chest pain, which ended up being pleurisy. I have had pleurisy a few times prior to this. I had a 4 day episode again a little over a week ago, but in a different area of my chest. Do you think this is pleurisy?
18) I read somewhere that there is not cure for m. abssessus, except for a lobectomy or lung transplant. Is this true, and if so is the goal of treatment remission and not cure?
19) I also read that only 56% of patients respond to this long-term antibiotic treatment. Are there indicators that might predict success?
20) Last time I was admitted my thyroid level was low. Can we check that again?
OK, ok...I've got a few more than 20! I'm glad I have an hour long appointment!
21) If I likely got this from my own household water, is there a way to check if this is in my water-heater or anything I can do to prevent getting this again?
22) Should I be on Hypertonic Saline? It seems like the cool thing to do nowadays!
23) Right now I do one Vest treatment a day, which can be nixed if I do my aerobic work-out. Should we continue with this regimen, or should we increase the frequency?
OK, now that's all I've got for now. I still have 3 days left, so we'll see how many I have by Friday???
prior to an important appointment, so they can write down every question that comes to mind to ask their oncologist. Research shows that people on average have 5 questions that they would like to ask their physician, but they typically only get to ask 2 or 3 of them. They either forget, become afraid to ask or the appointment time just runs out. I am going to ensure that I don't forget, so I've been carrying my little pink notebook around with me everywhere. Here's what I've got so far. I know that there are no answers for some of them, but I'm going to ask anyway. Let me know if you think of any more good questions!This is just a little peek into what's been circling around in my brain for the past few weeks...
1) Can I get a new Flutter? My old one is no longer of use, since my children thought the metal ball inside was a toy. That most important little ball is missing for good...grr.
2) Do you think my symptoms I've been having over the past 2 years are from the mycobacterium abssessus or did the staph I've cultured my entire life just start acting up?
3) What are the dangers of waiting to treat?
4) If I do these long term antibiotics, should I get a PICC or a port?
5) Do I need to start this treatment right away or can I choose when I want to start?
6) Are there any stats specifically for the Delta F508 & R117H gene mutation?
7) Do those with R117H have the same life expectancy as the general CF population?
8) What is the probability that I will get CF related diabetes eventually?
9) What is the probability that I will one day become pancreatic insufficient?
10) I read that people with the R117H mutation are more susceptible than other CFers to getting Pancreatitis. What is my probability of getting Pancreatitis?
11) What are the symptoms of Pancreatitis?
12) I know that one of the side effects of one of the antibiotics I will be using is neutropenia (low white blood count). I already have a low white count. It falls between 2-4, when normal is 4-11. Can I get Neupogen injections to increase my white count and prevent complete immune system failure?
13) I am also concerned about hearing and vision loss with these antibiotics. What would we do to monitor this and how often?
14) How often will I have to infuse (how many times a day) if we do IV's?
15) How long do you anticipate I will need the IV's?
16) How long will I have to be in the hospital initially, knowing that I have to be desensitized from the Clarithromycin?
17) I went to the ER last time I was on IV's for chest pain, which ended up being pleurisy. I have had pleurisy a few times prior to this. I had a 4 day episode again a little over a week ago, but in a different area of my chest. Do you think this is pleurisy?
18) I read somewhere that there is not cure for m. abssessus, except for a lobectomy or lung transplant. Is this true, and if so is the goal of treatment remission and not cure?
19) I also read that only 56% of patients respond to this long-term antibiotic treatment. Are there indicators that might predict success?
20) Last time I was admitted my thyroid level was low. Can we check that again?
OK, ok...I've got a few more than 20! I'm glad I have an hour long appointment!
21) If I likely got this from my own household water, is there a way to check if this is in my water-heater or anything I can do to prevent getting this again?
22) Should I be on Hypertonic Saline? It seems like the cool thing to do nowadays!
23) Right now I do one Vest treatment a day, which can be nixed if I do my aerobic work-out. Should we continue with this regimen, or should we increase the frequency?
OK, now that's all I've got for now. I still have 3 days left, so we'll see how many I have by Friday???
Saturday, August 21, 2010
Joy & Confusion
We are just back from an amazing vacation! We went to Hilton Head Island, South Carolina and had a blissful time! These are just a couple snapshots from the trip.
I was so happy that I was feeling well physically, even after going off of the Doxy. I was also able to practically forget about the huge decision I must make in the coming weeks about what to do with my health...up until 5am the morning we left to come home. I woke up in a panic. I think knowing that I was returning to the real world and will have to face this burden again, put my mind in a tailspin. I was so certain that I wanted to be aggressive with this m. abssessus infection last week. Today, I just don't know??? I'm so confused. It may just be the fear setting in...
Just prior to going away on vacation I had another long conversation with Dr. Dazzle. I learned that I need to avoid enclosed showers and hot tubs. I likely got the m. abssessus from breathing in steam from hot water. Dr. Dazzle wanted to warn me about these things to avoid, so that if we treat I do not immediately reinfect myself. I thought I had gotten this from my past surgery, but Dr. Dazzle said that I would have had to get it from the tube that they used to intubate me. If that were the case, they probably would have had an outbreak of mycobacterium in the hospital at that time. It's more reasonable to think that I got this infection from water. I did still go in the hot tub on vacation... Hey, I'm already infected. I may as well enjoy one last dip!
I learned that the 3 antibiotics I will be taking if we treat are Clarithromycin, Amikacin and Cefoxitin. They are IV and I will need them for 3 - 12 months...possibly longer. I can't remember which drug, but one of them is extremely toxic. The possible side effects include hearing loss, kidney failure and neutropenia (low white blood count = weak immune system). I've talked to several people who have had these side effects. They can be brutal. Also, since I'm allergic to Penicillin, I will have to be desensitized to the Clarithromycin. I will be inpatient and they will administer very small doses initially, until they can give me the full dose without side effects. These are the potential risks of taking the aggressive approach. Maybe I will experience none of them...maybe?
My other option is to do nothing. To wait it out. To wait until I have more symptoms. To wait until we see lesions.
This reminds me of the story of Damocles Sword. The term means "an ever-present threat; an impending disaster". Damocles was a poor man in ancient Greece who was jealous of the ruler Dionysius, tyrant of Syracuse, for his wealth. The praise annoyed the king, so he decided to teach him a lesson. He held a party in honor of Damocles. To prove a point, Dionysius hung a sword by a single horse-hair over Damocles' head. Damocles was no longer jealous, as he realized that even those who appear to enjoy great fortune face fears and worries." This is how I have always felt about my CF. I have always been fearful of the sword dropping. I know it will, it's just a question of when. I think this is how I will feel every day if I choose to hold off on treatment for now. Then, what happens if it is beyond the point of being able to be treated effectively when it does progress? Oh boy, I have so, so many questions for Dr. Dazzle.
I feel like I'm teetering between two extremes. This is one of the toughest decisions I have ever had to make. What's weighing heaviest on my shoulders is thoughts about how my family will be taken care of if I'm out of commission for such a long time. I have complete faith in the fact that my husband and family will keep things afloat, but I'm the mommy. I'm supposed to take care of everything.
What if I choose the wrong path? I had a 12 hour conversation with God on the ride home from vacation. I asked...no begged for a sign. I really wish someone else could make this choice for me. I wish someone would tell me what to do.
I turned 35 yesterday. I spent the day with my family and the evening with my dear friend, Elizabeth. It was a fabulous day! Elizabeth was my shoulder to cry on during my last round of IV's. The advice she gave me last night was that I need to make this decision with my heart, instead of my head. My head is just overflowing with too many "what-ifs". I just wish I knew what my heart was trying to tell me. Can anyone hear what my heart is trying to say? I am hoping beyond hope that I have more clarity after my appointment next Friday.
Wednesday, August 11, 2010
A Difficult Decision
Today I had a clinic visit. It was hard. I think it was the most emotionally exhausting appointment I have ever had. I decided to transition from my pediatric pulminologist to an adult pulminologist. There were many factors that went into my decision that I won't discuss here, but I thought long and hard about the transition before deciding to take the plunge. Today was my last appointment with Dr. Bob, who I have seen for over 20 years. There were many tears...mine, not his. Mostly from frustration...a few from sadness. I know I can't be fixed, but I at least want to be heard. I am at a turning point with my health and I am excited and scared about the next chapter all at the same time. That's all I have to say about that...
So we have a plan, sort of. I was wrong about culturing MAC. MAC is Mycobacterium Avium, which derived from birds. My Mycobacterium Abssessus is a whole different strain. It turns out it is the worst of the mycobacteriums. If to treat and how to treat is controversial. My new doctor, we'll call him Dr. Dazzle is very aggressive. To say that I like this approach is an understatement. After he introduced himself he said that together we were going to work on keeping my PFT's baseline for the next 50 years. We will not tolerate drops...not one bit!
That being said, we decided that we will move forward with kicking this mycobacterium's ass. First things first, we need a second positive culture result. I gave my lovely "sample" and will follow up with another appointment the Friday after next. Then we're really going to lay it all out there.
What I do know is that I was wrong about the treatment, in a bad way. It turns out that 2 of my 3 drug sensitivities are IV drugs. Therefore, what I imagined would be 12 months of easy peasy oral antibiotics, may be 12 months of IV antibiotics. It may be more like 3 or 6 months, since IV's are so much more potent than orals, but in any case, it's going to be a more difficult path. I wasn't at all prepared for that news. I wasn't prepared for the news of another hospital stay and PICC line. I wasn't prepared for the fact that I am likely going to have to take short-term disability from work for who knows how long. I wasn't prepared for the emotional transition process. I just feel ill-prepared.
I am, however, prepared to feel well again. I am prepared to give myself the rest and care that I need to heal, if that's possible. I am prepared to fight for every single percentage point of lung function. If for the next year I have to Vest, neb and infuse multiple times a day to win this battle, then that's what I'll do! And Dammit, I'm going to try to do it with a smile on my face! I'm sure that will be the hardest part... Fifty years from now, Dr. Dazzle and I, as a team, are prepared to say that I was able to beat the odds. Then, all of our hard work and effort will be rewarded with more hours, more days, more breaths...
So we have a plan, sort of. I was wrong about culturing MAC. MAC is Mycobacterium Avium, which derived from birds. My Mycobacterium Abssessus is a whole different strain. It turns out it is the worst of the mycobacteriums. If to treat and how to treat is controversial. My new doctor, we'll call him Dr. Dazzle is very aggressive. To say that I like this approach is an understatement. After he introduced himself he said that together we were going to work on keeping my PFT's baseline for the next 50 years. We will not tolerate drops...not one bit!
That being said, we decided that we will move forward with kicking this mycobacterium's ass. First things first, we need a second positive culture result. I gave my lovely "sample" and will follow up with another appointment the Friday after next. Then we're really going to lay it all out there.
What I do know is that I was wrong about the treatment, in a bad way. It turns out that 2 of my 3 drug sensitivities are IV drugs. Therefore, what I imagined would be 12 months of easy peasy oral antibiotics, may be 12 months of IV antibiotics. It may be more like 3 or 6 months, since IV's are so much more potent than orals, but in any case, it's going to be a more difficult path. I wasn't at all prepared for that news. I wasn't prepared for the news of another hospital stay and PICC line. I wasn't prepared for the fact that I am likely going to have to take short-term disability from work for who knows how long. I wasn't prepared for the emotional transition process. I just feel ill-prepared.
I am, however, prepared to feel well again. I am prepared to give myself the rest and care that I need to heal, if that's possible. I am prepared to fight for every single percentage point of lung function. If for the next year I have to Vest, neb and infuse multiple times a day to win this battle, then that's what I'll do! And Dammit, I'm going to try to do it with a smile on my face! I'm sure that will be the hardest part... Fifty years from now, Dr. Dazzle and I, as a team, are prepared to say that I was able to beat the odds. Then, all of our hard work and effort will be rewarded with more hours, more days, more breaths...
Friday, August 6, 2010
A Letter to Patients
My friend Patti posted this in her FB notes today and I thought is was too good not to share! I will be taking some of this advice to heart...
A Letter to Patients With Chronic Disease
Dear Patients:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.
It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations.
Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,Dr. Rob
A Letter to Patients With Chronic Disease
Dear Patients:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.
It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations.
Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,Dr. Rob
Thursday, August 5, 2010
And the results are in...
My culture results finally came back from Texas. I have....drum roll please...
Mycobacterium Abscessus AKA MAC
http://www.cdc.gov/ncidod/dhqp/id_Mabscessus_faq.html
Don't be alarmed when you read that this disease is similar to Leprosy and Tuberculosis. It is NOT either of these conditions. It just has a similar cell structure. I knew that I wasn't contagious, but it's nice to read it here too!
Basically, MAC lives in water, soil and dust. Not sure how I could have avoided those things. It sounds like it also likes to grow on surgical equipment too. Ah...now that made a light bulb go off in my head! I was hospitalized for 9 days with acute belly pain in November of 2007, which resulted in the removal of my gall bladder and appendix. My gall bladder had stopped draining, so we decided to just get rid of the thing all together. The appendix was just a bonus organ removal. The surgeon figured "Why not?", so he did. Funny thing is that the pathology showed that the appendix was diseased and I would have probably needed to have it removed eventually anyway. I asked for a bonus tummy tuck, but the surgeon did not oblige :-(
The great thing about my surgeon, Dr. O, is that he was the one who did spinal surgery on Christopher Reeves a few years before his death. MY surgeon operated on Superman himself! That gave me confidence. I certainly don't blame Dr. O or the hospital, but it seems that I may have contracted MAC from this surgical procedure. It all makes sense to me now. My increased CF symptoms and the drop in my PFT's have all happened in the past couple of years, following the surgery. Truth be told, I will never know for sure how I got this nasty bug, but I'll probably stick with the surgery story.
MAC is typically an infection of the skin. My favorite thing that I read is that "It has rarely been known to cause lung infections in persons with various chronic lung diseases". It's that word "rare" that gets me every time. I am ALWAYS the one who gets the "rare" conditions...UGH! I have a rare genotype of a rare genetic disease, that has progressed in a rare fashion. I also have a rare disease called Undifferentiated Connective Tissue Disease. Now I have a rare lung bug to go with everything else. I just LOVE when my medical team says that they really haven't seen many cases like mine. That means I don't fit into any category that they have experience with and statistics on...Grrrr! I've never had any skin issues, so it looks like MAC decided to take the rare route with me.
I have an appointment next Wednesday to discuss treatment options. If we decide to treat at all it will likely require 2 oral and 1 nebulized antibiotics for about a year. I will have to get my kidneys and liver checked often to ensure that they are handling the drugs well. The abx can also make my white blood cell count drop too low, making me even more immuno-compromised. This makes me nervous about the air travel I have to do for work. I'll chat with my doctor about that issue. Basically, it most likely won't be a walk in the park, but not unbearable either. If I'm given the choice to treat or not, I am going to take the aggressive approach. I don't want to regret sitting on it years from now if it decides to rage out of control. I guess we'll see on Wednesday...
Mycobacterium Abscessus AKA MAC
http://www.cdc.gov/ncidod/dhqp/id_Mabscessus_faq.html
Don't be alarmed when you read that this disease is similar to Leprosy and Tuberculosis. It is NOT either of these conditions. It just has a similar cell structure. I knew that I wasn't contagious, but it's nice to read it here too!
Basically, MAC lives in water, soil and dust. Not sure how I could have avoided those things. It sounds like it also likes to grow on surgical equipment too. Ah...now that made a light bulb go off in my head! I was hospitalized for 9 days with acute belly pain in November of 2007, which resulted in the removal of my gall bladder and appendix. My gall bladder had stopped draining, so we decided to just get rid of the thing all together. The appendix was just a bonus organ removal. The surgeon figured "Why not?", so he did. Funny thing is that the pathology showed that the appendix was diseased and I would have probably needed to have it removed eventually anyway. I asked for a bonus tummy tuck, but the surgeon did not oblige :-(
The great thing about my surgeon, Dr. O, is that he was the one who did spinal surgery on Christopher Reeves a few years before his death. MY surgeon operated on Superman himself! That gave me confidence. I certainly don't blame Dr. O or the hospital, but it seems that I may have contracted MAC from this surgical procedure. It all makes sense to me now. My increased CF symptoms and the drop in my PFT's have all happened in the past couple of years, following the surgery. Truth be told, I will never know for sure how I got this nasty bug, but I'll probably stick with the surgery story.
MAC is typically an infection of the skin. My favorite thing that I read is that "It has rarely been known to cause lung infections in persons with various chronic lung diseases". It's that word "rare" that gets me every time. I am ALWAYS the one who gets the "rare" conditions...UGH! I have a rare genotype of a rare genetic disease, that has progressed in a rare fashion. I also have a rare disease called Undifferentiated Connective Tissue Disease. Now I have a rare lung bug to go with everything else. I just LOVE when my medical team says that they really haven't seen many cases like mine. That means I don't fit into any category that they have experience with and statistics on...Grrrr! I've never had any skin issues, so it looks like MAC decided to take the rare route with me.
I have an appointment next Wednesday to discuss treatment options. If we decide to treat at all it will likely require 2 oral and 1 nebulized antibiotics for about a year. I will have to get my kidneys and liver checked often to ensure that they are handling the drugs well. The abx can also make my white blood cell count drop too low, making me even more immuno-compromised. This makes me nervous about the air travel I have to do for work. I'll chat with my doctor about that issue. Basically, it most likely won't be a walk in the park, but not unbearable either. If I'm given the choice to treat or not, I am going to take the aggressive approach. I don't want to regret sitting on it years from now if it decides to rage out of control. I guess we'll see on Wednesday...
Wednesday, August 4, 2010
Thankful Thursday ~ Counting My Blessings
I am going to start trying to devote Thursday's to counting my blessings. I think some other CF bloggers have done this in the past. However, I got my inspiration from my friend, Fayla, who seems to always find a positive nugget within each and every day. She often starts her FB posts on Thursdays by sharing what she is thankful for that day. Fayla also lives with CF. I've had some frustrating times lately and I don't want to lose sight of the fact that I have so, so much to be thankful for...
So... Today I am thankful that I found my CF voice through this blog. I'm thankful for the blogosphere!
Blogging has been such an amazing way for me to let it all out. I rarely talk about my CF at home or with people in my "real" world. Yet, that doesn't mean I don't think about it all of the time. It's really hard not to when you are constantly medicating or treating yourself in an attempt to stay as healthy as the disease allows. Support groups for people with CF are non-existent. We can pass deadly bacteria on to one another, so there is actually a rule that people with CF are supposed to stay at least 3 feet away from one another at all times. On the CF floors of the hospitals, patients must wear masks just to walk the halls. We are literally quarantined from one another. That's always been a difficult reality for me to accept. I wear my emotions on my sleeve, but I have had to shut off this very significant part of my life in order to spare the feelings of those around me, knowing that they couldn't possibly know what I was feeling or experiencing. I didn't want to make them feel helpless, so I just avoided the topic of my disease all together. My parents read my blog. They have both commented on how much they have learned since I started writing.
At first I felt vulnerable sharing such personal information with the world at large. I've gotten to the point where I feel a sense of satisfaction when I click the publish button. I am able to release my feelings, share information and sometimes help someone in the process...all without having to "talk" about CF. It's just too hard to "talk" about CF sometimes. I have received some emails from younger cysters who say that my words, thoughts and story give them hope for the future. Those sentiments alone make blogging worth the time and effort for me. It's helping me and it's a huge bonus if it helps someone else in the process.
I watched 65_RedRoses yesterday. It's a documentary about Eva Markvoort, a young woman with CF who received a lung transplant a few years ago. She was a beauty, wasn't she?
So... Today I am thankful that I found my CF voice through this blog. I'm thankful for the blogosphere!
Blogging has been such an amazing way for me to let it all out. I rarely talk about my CF at home or with people in my "real" world. Yet, that doesn't mean I don't think about it all of the time. It's really hard not to when you are constantly medicating or treating yourself in an attempt to stay as healthy as the disease allows. Support groups for people with CF are non-existent. We can pass deadly bacteria on to one another, so there is actually a rule that people with CF are supposed to stay at least 3 feet away from one another at all times. On the CF floors of the hospitals, patients must wear masks just to walk the halls. We are literally quarantined from one another. That's always been a difficult reality for me to accept. I wear my emotions on my sleeve, but I have had to shut off this very significant part of my life in order to spare the feelings of those around me, knowing that they couldn't possibly know what I was feeling or experiencing. I didn't want to make them feel helpless, so I just avoided the topic of my disease all together. My parents read my blog. They have both commented on how much they have learned since I started writing.
At first I felt vulnerable sharing such personal information with the world at large. I've gotten to the point where I feel a sense of satisfaction when I click the publish button. I am able to release my feelings, share information and sometimes help someone in the process...all without having to "talk" about CF. It's just too hard to "talk" about CF sometimes. I have received some emails from younger cysters who say that my words, thoughts and story give them hope for the future. Those sentiments alone make blogging worth the time and effort for me. It's helping me and it's a huge bonus if it helps someone else in the process.
I watched 65_RedRoses yesterday. It's a documentary about Eva Markvoort, a young woman with CF who received a lung transplant a few years ago. She was a beauty, wasn't she?
She ended up dying this past March, while waiting for a second transplant after rejecting her new lungs. She touched many people and taught amazing lessons about life and love in her short 26 years. 65_RedRoses was her screen name in the CF cyber world. The documentary followed her online relationships and the importance of the support she received through her blog. Some of her most special friends were people she never met in person. I can completely and totally relate. Since connecting with others in the CF world I have developed some amazing relationships, with some of the strongest souls I have ever "met".
On this Thankful Thursday...I am happy and thankful for my many cyber-friends and for the online support I receive from them each and every day!
Monday, August 2, 2010
But you don't look sick...
This is something I've heard time and time again throughout my life. I'm not at all sure how to react to this statement. I know for me, disclosing my illness to new people has always been something that has made me feel vulnerable. I sometimes found comfort in the fact that I could keep it my little secret. It's a very personal part of my life that I don't feel like many people in my world (before Facebook) could relate to. It's made me strong and resilient, but also makes me scared and angry. When I choose to tell someone about my disease one of a few things usually happens:
1) They back away slowly and pretend they didn't hear me. I guess it's a little too much information for these folks.
2) They start asking questions like crazy. I like this. In this instance I have a captive audience and they care. They really care.
3) They immediately tell me about so and so who they know who HAD cystic fibrosis. This group always has a story to share about someone who died of the disease. It's just like when your pregnant and everyone wants to tell you all of the gory details about what can go wrong.
4) Then there is the puppy dog eyes, cocked head to the side, I feel so sorry for you look. These are the people who knew someone who died of CF, but refrain from sharing the details. For the record, I never disclose in an effort to make someone feel sorry for me. I beg of you, PLEASE, don't feel sorry for me. That makes me feel awkward. I realize that I have a very blessed life.
5) Or I get the statement "...But you don't look sick". This very effectively shuts down the conversation and we move on to more pleasant topics. I am thrilled not to look sick. However, I know that most CFer's don't always look sick. If only you could see me from the inside out.
I know that this statement is made out of a lack of awareness, but it sometimes makes me feel like my entire experience has been devalidated (if that's even a word). Well, I guess your right then. I guess if I don't look sick, then I must not be sick after all. Forget the fact that I do Vest treatments a couple times a day, am on constant antibiotic treatments and take tons of pills a day.
Maybe it's the meaning of the term "sick". If sick means acutely ill, then no, I am not always sick. However, if "sick" means dealing with a chronic illness on a daily basis to stay alive, then yes, I am sick. I don't like to think of myself as disabled, when at the same time I think I've earned my disabled badge. We CFer's don't like to limit ourselves if our disease doesn't make us. We run marathons, sky dive, climb mountains, have families, work and lead lives filled with the same joys and pains as any healthy person. Yet, some awareness and understanding about the challenges we do face, even though we "don't look sick" is often in order.
Two of the most frustrating statements that are often made to CFer's from people who don't "get it" deal with disabled parking and the smokers cough. I have heard story after story of CFer's parking in handicapped parking spots and being cussed at or put in their place for not belonging there. Then there is the CF cough, which sounds an awful lot like a smokers cough. Nope, we didn't create this cough ourselves. I've heard of people judging our coughs and making rude comments such as "Have another one...". This being said to someone within one of the most anti-smoking communities you'll find. Next time, please hold your judgement!
So even though I live with an illness, that is still considered terminal in nature, I don't want to be considered disabled by the average person. I just want to be understood. I do, however, feel a special kinship with others with illnesses or disabilities. That is why I chose to work in oncology. I can relate.
Here are two blogs from two other special CFer's related to this same topic.
This first blog had me rolling on the floor laughing. Just picturing Josh in this situation makes me smile. Please read!!! Yeah, I got the CF too!
http://www.welcometojoshland.com/2009/02/at-almost-30-i-feel-like-i-have-been_18.html
This next blog was written by Lauren, a 19 year of Cyster, who is wise beyond her years! This is so beautifully put :-)
http://ihavecfsowhat.blogspot.com/2010/06/stand-up.html
1) They back away slowly and pretend they didn't hear me. I guess it's a little too much information for these folks.
2) They start asking questions like crazy. I like this. In this instance I have a captive audience and they care. They really care.
3) They immediately tell me about so and so who they know who HAD cystic fibrosis. This group always has a story to share about someone who died of the disease. It's just like when your pregnant and everyone wants to tell you all of the gory details about what can go wrong.
4) Then there is the puppy dog eyes, cocked head to the side, I feel so sorry for you look. These are the people who knew someone who died of CF, but refrain from sharing the details. For the record, I never disclose in an effort to make someone feel sorry for me. I beg of you, PLEASE, don't feel sorry for me. That makes me feel awkward. I realize that I have a very blessed life.
5) Or I get the statement "...But you don't look sick". This very effectively shuts down the conversation and we move on to more pleasant topics. I am thrilled not to look sick. However, I know that most CFer's don't always look sick. If only you could see me from the inside out.
I know that this statement is made out of a lack of awareness, but it sometimes makes me feel like my entire experience has been devalidated (if that's even a word). Well, I guess your right then. I guess if I don't look sick, then I must not be sick after all. Forget the fact that I do Vest treatments a couple times a day, am on constant antibiotic treatments and take tons of pills a day.
Maybe it's the meaning of the term "sick". If sick means acutely ill, then no, I am not always sick. However, if "sick" means dealing with a chronic illness on a daily basis to stay alive, then yes, I am sick. I don't like to think of myself as disabled, when at the same time I think I've earned my disabled badge. We CFer's don't like to limit ourselves if our disease doesn't make us. We run marathons, sky dive, climb mountains, have families, work and lead lives filled with the same joys and pains as any healthy person. Yet, some awareness and understanding about the challenges we do face, even though we "don't look sick" is often in order.
Two of the most frustrating statements that are often made to CFer's from people who don't "get it" deal with disabled parking and the smokers cough. I have heard story after story of CFer's parking in handicapped parking spots and being cussed at or put in their place for not belonging there. Then there is the CF cough, which sounds an awful lot like a smokers cough. Nope, we didn't create this cough ourselves. I've heard of people judging our coughs and making rude comments such as "Have another one...". This being said to someone within one of the most anti-smoking communities you'll find. Next time, please hold your judgement!
So even though I live with an illness, that is still considered terminal in nature, I don't want to be considered disabled by the average person. I just want to be understood. I do, however, feel a special kinship with others with illnesses or disabilities. That is why I chose to work in oncology. I can relate.
Here are two blogs from two other special CFer's related to this same topic.
This first blog had me rolling on the floor laughing. Just picturing Josh in this situation makes me smile. Please read!!! Yeah, I got the CF too!
http://www.welcometojoshland.com/2009/02/at-almost-30-i-feel-like-i-have-been_18.html
This next blog was written by Lauren, a 19 year of Cyster, who is wise beyond her years! This is so beautifully put :-)
http://ihavecfsowhat.blogspot.com/2010/06/stand-up.html
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