Crazy quilting is called that for the mismatched shaped and types of materials and embellishments used to make something so beautifully cohesive, unique and useful. Life, certainly my life, is like a crazy quilt; a work in progress piece by piece, bit by bit; one stitch at a time by The Master, Almighty God. Since last I posted He's been busy taking my crazy quilt of a life on a journey to new spiritual levels I may never have known without that monster invading my body.
The journey to reclaim my physical health hasn't been smooth in any respect. Once I finally got approved for and then had the colonoscopy I really had high hopes for soon getting the radiation damages fixed. Instead, what happened was then having to deal with a situation where that doctor reported my colon damage as basically very mild or at worst just barely bordering on moderate. He all but called me a liar in regards to how much blood loss I was experiencing; which made no sense considering it was he who ordered transfusions be administered to me twice in less than 30 days and each time I was given 2 units!! Then he made it clear by the 3rd time I needed transfusions he did not want to manage my needs for them and to have my primary care doctor do it. Although my PCP was very willing to manage the transfusion care the fact is now I had to go two places rather than just one to get this accomplished and now instead of at most a 24 hour set up time I now was having to wait up to 72 hours or longer. To further complicate matters based on the "mild" diagnosis of radiation proctitis imagine the frustration level of not getting financial approval for medicines in a timely fashion. I could have my prescriptions if I paid full price but the financial program I'm in wasn't going to pay for them. His comments and/or diagnosis regarding my case made it seem like I was using the system to get drugs. Lastly this same doctor told me he wouldn't refer me to another specialist to help me but he did want to do a follow up with me in 2 months. In the meanwhile he expected me to keep proof of how much I was bleeding and to administer medicated enemas to myself (which never happened because they contained drugs I am very allergic to......sigh). Today was to be my follow-up appointment but I told the office assistant last Friday I was not coming back.
When I didn't get my meds things went really sour. I'd caught a virus and was really run down, on Thursday August 19th, I had two units of blood transfused but they didn't help me feel better and by Saturday I was so painfully sick I literally was crying out to God heal me or bring me Home to Him. I turned the radio on and sang out loud, through my tears and pleas for relief, songs of praise and worship. When I felt somewhat calmer I called my mom and had her read devotionals to me; but she cried, too, then insisted I go to the hospital. (I'd been afraid to go to the ER believing I'd get kicked out of the medical program) My daughter took me and within 90 minutes I was being admitted. It took them 4 days to get me stabilized with medications, two more units of blood and a bag of fresh frozen plasma. While there I was placed on a new medication to help process my food; normally given for cholesterol problems it also helps break down acids for folks who no longer have a gallbladder. That medication did not stop my bleeding but it did stop acids from further damaging my colon; a really big help! Also while there a team of clinicians got the ball rolling in my favor about my medications and the need for surgical referral. When I left the hospital I felt better than I had in months; unfortunately it wouldn't last.
The good news was I was medically stabilized and the new medicine, Prevalite, was helping. I finally was relieved to know the medical program I'm in now, clearly, understood my RIHP (Radiation Induced Hemorrhagic Proctitis) was not "mild". My medications not only were approved for payment but I was now being followed up on my care with a nurse navigator assigned to me by the medical program. This was very good because now they wanted to help me get the help I needed. After all I came into this financial assistance program with a serious on-going medical need. The next steps involved locating, pre-certifying and getting appointments with specialists. Those steps take time and naturally my medical stability was going to decline on a daily basis until the problem was corrected.
I've been at this post off and on all day so I'll finish it tomorrow. G'night, God bless.
10/12/10 Part 2
The next steps in my journey took me to a clinic where I thought I was getting the all in one doctor: Oncologist, hematologist, gastro intestinal and surgeon; but it turned out he was only going to evaluate my anemia. It was very disappointing but he did listen to my pleas for help and sent notice to my PCP to find me a gyno-oncologist to address my concerns about possibly no longer being in remission; also to handle my required follow-up PAPs. Next he requested I see a surgeon asap to explore the possibility of having a colostomy to stop the bleeding. I'd only been out of the hospital 6 days when I saw him but he tested my blood for several things and was able to determine from those tests I am still quite anemic but have enough iron and that it didn't appear I had any other blood disorders. He did recommend the fewer transfusions the better as my new antibodies make it difficult to match me with donors. At that time my blood counts didn't warrant transfusions but he said I'd need them soon.
Obviously I've learned when I need transfusions so I told my PCP it was time but she wanted me to wait until I'd seen the surgeon; why to wait was beyond me but I did get in to see him September 15th. He was really a great guy; competent and compassionate. All he could offer me was a complete colostomy but he was willing, even eager, to consult other specialists to see if something less drastic was possible. He didn't really want to do surgery on me due to the radiation damages; it turns tissue into 'slush'. Doing surgery on m would be like soft jello. I only spent 5 minutes with him but left having a peace and trust about his part in my journey to health; I had no idea just how instrumental he'd become to that end.
The next day my PCP made special time to see me to follow-up about the hospitalization. She was surprised I'd already seen the surgeon, had gotten the hematology report and was working to get program approval for me to see the gyno-oncologist, as she isn't one of their providers. She made sure I had enough medications and told me to come back the next day when the flu vaccine would be in to get my shot. The next day I did go back to get the shot administered by her assistant but my PCP wasn't there and neither was the order to get transfusions. I didn't get that until the next morning, a Saturday and the hospital out patient services only .go Monday through Friday. I had no choice but to wait until Monday morning and by then I knew I was in distress.
10/14/10 Part 3
Monday, September 20th, I really shouldn't have been driving because I felt so weak but I drove myself to the hospital to get set up for transfusions the next day. There ended up being a major paperwork approval snafu which worked in my favor because by the time it got sorted out I was feeling even worse and had already decided to call my daughter to have her bring my SIL to drive his truck and me back home. Normally my blood isn't tested until hours after I leave but that day the lab tech told them to run it while I was still there because she said I looked awful. Turned out my counts were below even half of what they should be, my PCP was called and she had me admitted in-patient. I was there for the next 9 days, got 5 units of blood and 2 units of fresh frozen plasma; these infusions took place over a 7 day time span. Each time they thought I'd had enough to fill me up the numbers said otherwise. From my knuckles to the bend of my elbows I was a mass of painful puncture bruises (very colorful, though with each passing day). The surgeon I'd seen came to see me 7 days into my stay and told me it would be dangerous for me to have surgery in the area where I'd been radiated; that having a colostomy was not an option for me. Instead he'd consulted with other specialists and there was a non-surgical treatment available to correct the problem. His plan was to do a hospital to hospital transfer of me down to Galveston as that is the state's medical university and there was a specialist to do this treatment. About an hour after I thanked him for his help I gave written consent to transfer me, called my daughter to have her pack a suitcase of fresh items for me and then waited to be transferred the next day.
Can you even imagine how excited I was??? Not only was I not going to have a colostomy, I was finally going to get this bleeding fixed! AND, with all the blood/plasma in me I felt the best I'd had in a year. But when I saw the surgeon the next early afternoon coming to my room my heart sunk, I knew something was wrong because there would be no need to see him again. The bad news was I wasn't getting transported to Galveston because turns out the treatment is done as an outpatient. Had it been an inpatient treatment there wouldn't be any problems, including the financial costs getting covered under a state program in Galveston. As an outpatient I'd have no medical coverage, plus it could take maybe 2 months just for initial consultation! Even more distressing was learning there was a specialist in my area who performs this procedure but refuses to accept the coverage program I'm in and wanted pre-payment of up to $3000 ! Sorry, folks, but I had a melt-down right then. It was awful to be so close to the brass ring but not be allowed to get on the merry-go-round to grab it. I was crushed, I sobbed. The surgeon left but about 5 minutes later he and a social worker came to see me and they were honestly grinning ear-to-ear; they told me they had figured out a way for me to get the treatment in Galveston. Are you ready for this????????
The doctor asked me if I was certain I knew the signs and symptoms of requiring a blood transfusion; if not he'd tell me what they were, but of course I know after 37 of them! He then told me when I knew I needed one to drive to Galveston (nearly 2 hours from my house), go to the emergency dept and then ultimately the specialist would have to treat me. Gotta tell you, folks, I know they meant well and by all accounts he's a very respected, competent surgeon but that was the craziest medical suggestion I'd ever heard. When I asked them how I would explain to the folks in Galveston I was in their area that sick and by-passed the one in my own neighborhood to get transfused??????? The social worker tells me this is a legal trick done frequently to help patients who cannot seem to get the right care going through the regular channels. Sorry, but for once I was feeling really great and I wasn't willing to deliberately make myself sick so I could maybe get the special treatment in Galveston. I say maybe because since it's an out-patient treatment anyway then I'd still have to see her in her office; so that just didn't make sense to me. Anyway they left my room and I just cried out of frustration. I knew now I'd be sent home where the cycle of transfusions would resume. The staff were wonderful to me, encouraging and empathetic. As evening approached I asked what time I was being released and was told the clinicians were not releasing me as they were trying to get a concrete care plan done.
Then the Holy Spirit gave me a thump upside my head and reminded me just Who was really in control, Who was stitching the seemingly mismatched pieces of my life together. More next time.
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