So, a few days after a long bike-ride I notice my shoulder and neck aching again… I had it checked out a few years ago – MRI – the whole works. I have a little stenosis and a little arthritis, which is common among cystic fibrosis patients. I went to physical therapy and they taught me correct posture and gave me exercises that worked. I thought that issue was flaring up again… (I’m not good at following through on those exercises…) Then my arm felt like it had a bad sunburn. I knew I wore my SPF 50 on the ride, so that didn’t make sense – I do my best at staying fish-belly white… Then I started getting other shoulder and back pains – sometimes piercing and sometimes reminding me of the numerous collapsed lungs I’d had – but my spirometries were as good as ever… I was getting ready to call my orthopedic expert (my sister Karen) to get me an appointment to see the doc she works for…
Like all transplant patients, I’m immunosuppressed. We are much more open to infection and cancer and a myriad of problems. So – I commenced to thinking and fantasizing about what’s going wrong. Do I have some whacko infection? Am I dealing with bone cancer or some other form of cancer? Is something happening to her beautiful lungs – to my beautiful lungs?!?!
Then some red blotches broke out down my arm and on my hand… Too many things were happening in the same area and I called my clinic and gave Pat, my awesome coordinator, all of my symptoms… She called back an hour later and said my docs think it may be shingles…
I went in the next day and saw my Penny, the most wonderful nurse practitioner in the world. (Does it show that I’m sucking up to my team?) Penny checked me out and confirmed that it must be shingles… She prescribed an antiviral and a nerve-pain med…
Now I can rejoice in the pain… My freakin’ arm could be on fire and that would be OK, as long as there wasn’t anything wrong with my beautiful lungs – as long as there wasn’t anything wrong with her beautiful gift…
This can be part of transplant… Our lives are saved, and for some of us our new lives are completely amazing… But we’re always facing bumps in the road. Because of the immunosuppression we’re always facing colds and flu bugs and infections and even cancer. And when we catch something it takes much longer to get over it…
And then there is fear – all manner of fantasy about what might be wrong can be going through our tiny minds… So many of us have been desperately ill and wonder what might take away the gift we’ve struggled for, and waited for? What might put an end to the extra chance we’ve been given? What might throw us back into the illness we’ve escaped?
Some of the things come along with transplant are related to childhood diseases that we had. Or childhood illnesses we didn’t have – but our donor had. Sometimes we deal with things like lymphoma (PTLD / Post Transplant Lymphoproliferative Disease) or CMV / cytomegalovirus. We’re more prone to developing cancer, especially skin cancer. And sometimes when we’re diagnosed with something troublesome, we just don’t know what the prognosis will be… Many of the drugs we take in our daily medication cocktail are toxic to our kidneys and liver – and if we’re lucky enough to live a long time with the heart or lungs or liver we receive, we may find ourselves needing a new kidney or liver as well…
I’ve been very lucky. Other people – not so much… Some deal with set-back after set-back and some never pull out of that tailspin. I’ve lost some precious friends this way… Some have a very difficult first year – hitting all of the bumps and having a myriad of problems until they’re cruising smoothly…
And then, sometimes it’s something stupid like shingles where a “normal” person might be struggling for 3-4 weeks with the pain and discomfort, I might be looking at 8-9 weeks… But I’m relieved that I know what it is, and that it’s not the end… Like I said – you could set my freakin’ arm on fire and as long as I know my beautiful lungs are OK – I’ll be OK…
All that being said, I do intend to milk this for all it’s worth… Though I might have come off as a pillar of strength above, I can assure you that there will be a lot of whining and whimpering going on over the next several weeks!!!
Her: “Hun, can you help with the laundry?”
Me: “Oh my God, my shoulder and arm – I can barely lift the quarters to the machine!!!”
Her: “Babe, can you get the dishes?”
Me: “Oh my God, the pain and itching – but would you mind getting me another serving?”
As you might presume, my life will probably not end due to medical reasons…
p.s. If you want to join me, I have my Kari’s Klimbers team signed up for the Sears Tower climb on November 9th… There is also a link to join on my www.ClimbingForKari.org website, and you can read more about it here…
